You can't judge honey by looking at the bee
You can't judge a daughter by looking at the mother
You can't judge a book by looking at the cover
Haven't we all heard about the deception of book covers a million times? Legend Bo Diddley even sang about it. While there's certainly a profound nugget of truth there, when it comes to actual books, it isn't always fitting.
Book covers play a key role in building literary careers. James Fox, Editor-in-Chief of the Midwest Book Review, has this to say about book covers:
For the post-publication reviewer, the cover is the gateway decision that decides if a book will be summarily rejected, or if the reviewer will invest additional time and energy into a further exploration of the book's desirability for being reviewed. Book reviewers must prioritize submitted books in a manner that would equitably utilize their time and energy to best effect for their audience or readership.
Think of it as going shopping in your favorite bookstore to buy an armload of books as gifts for yourself, your friends, and your family. You want to pick the books that you are going to provide as gifts which will be as appropriate to the intended recipient, as attractive to the recipient, and as reflective of your own good taste in the recipient's behalf, as possible.
That's why, for the post-publication book reviewer, one of the key selection elements is how the book will "sell" to its intended readership based upon its physical appearance.
This literary triage selection process is not a review. Rather it is decision process on whether of not to accept or refuse a book for review. It is not a critique of the literary content, but as an assessment of the book's viability in the competitive context of the book selling marketplace. It is passing judgment (or reviewing) the book-as-product and the publisher as that product's producer.
To create this spectacular package, the publisher carries the burden of accurately reflecting the book's content in its title and book cover design. Doing so is critical for satisfying all players involved, and for building and maintaining a stellar industry reputation. Designing book covers is not as easy as some might think considering there's about a 10 to 15 second window to satisfy. That's about how long the average person spends glancing at a book before deciding to pick it up or move along. Wow!
If you're Stephen King, Philip Roth, or Jodi Picoult, you've built an established audience who will likely give your next title their full attention. However, if you're an unknown, the book cover becomes a critical piece of the success puzzle.
Print Magazine as one of the best of 2009! Print Magazine is the premier publication for the graphic design industry. Sheila works for Greenleaf Book Group, a small publisher based in Austin, Texas. Her ABERRATIONS cover design was selected along with covers created by designers at New York-based powerhouses HarperCollins, St. Martin's Press, Farrar, Straus, and Giroux, Pantheon, and Scribner.
Sheila is incredibly talented at what she does, and provides a great example of someone who has tapped both sides of the brain to achieve her creative goals. Her design was likely instrumental in convincing James Fox at Midwest Book Review to put ABERRATIONS into the "yes" pile during his literary triage. Their Small Press Bookwatch division went on to say that ABERRATIONS is deftly written ... very edgy ... engaging ... insightful ... and fascinating! They gave the book a 5 star-rating, helping me to relay that ABERRATIONS is just as good as its cover.
When I was a kid I wanted to be an artist. I drew, painted, designed, glued, colored, glittered, and sculpted whatever I could. I also wanted to be a writer, so I filled notebooks with stories I had written and illustrated. Then I reached a point when I realized that I wasn't very good at drawing, so I decided I would be a writer. I took a required basic design course in journalism school, and fell in love with graphic design. That's when I knew I wanted to be a designer. I kind of went full circle.
Do you have other creative interests, and if so, what are they?
I go through creative cycles. Right now my job is very demanding so I don’t have much time for personal projects. I find it difficult to have a very demanding day at my job, and then go home and work on personal art or crafty projects. So I channel my creative energy into my work and enjoy simpler creative outlets in my free time, like my backyard garden. When I am on the other side of my creative cycle, however, I sketch, paint, crochet, and design all kinds of things at home, and I do it for my enjoyment, not because I'm really good at it.
I think there are all kinds of creative people. My job requires me to be highly creative, but I also have to be professional and proficient at client management. I work on a lot of business titles, and the authors sometimes aren't used to interfacing with creatives. So it's the constant duality of Business Sheila and Creative Sheila. Different hats for different parts of the day.
Do you believe being creative has caused you aberrations in life, helped you deal with life's aberrations, or both?
Being a creative person has caused me to pursue challenging work, and to push the limits and really explore who I want to be. It has definitely helped me deal with life’s aberrations. When I’m going through a difficult time, I think it’s great therapy to make something: collages, paintings, drawings, journal entries. Creativity is an outlet that I feel lucky to have.
Have you had to deal with people in your life failing to understand your creative drive? If so, can you tell us about it and how you've dealt with it?
Both of my parents always encouraged me creatively. I have always been my own worst enemy when it comes to letting myself be creative.
Absolutely. I think that for a lot of designers concepting comes very naturally. Developing a professional demeanor, organization, flawless execution, and client management are areas where they struggle. I am in many ways the opposite of this: I worry that I won't be able to come up with a good idea. I am not naturally filled to the brim with great ideas. I have to work at it. There is a lot of impostor syndrome in artistic fields. I have to remind myself that everyone else thinks I'm doing a good job, my clients are happy, my boss is happy, I win awards from time to time . . . that must mean something.
Unfortunately, many creative people never achieve the success they dream about. How have you coped with disappointments?
I try to be realistic about what I can achieve, and I give myself room to fail from time to time. I accept that I am good at some things, and I have to work very hard at others even though I still might not be successful. I feel I am so lucky to be doing creative work for a living, that my failures so far have felt pretty small.
My creative process begins by trying to understand the essence of what I'm working on. I design book covers, so for me I need to get an accurate idea of what the author is trying to communicate. My professional creative work is very goal-oriented: I am packaging a product to sell, and I have a small space to interpret the author's vision in a marketable way. There is a lot of back and forth with my creative work. I have to put myself in the shoes of the author, the distributor, and the consumer. Then I have to create something that is true to the book's message and is artistically sound. I spend a lot of time in bookstores.
My personal projects are totally different. I try very hard to not approach them with any preconceived ideas about what they should be. I let them develop as they will, and the goal is the process, the enjoyment I get from creative work.
What are the top three characteristics of a highly creative person, in your opinion?
1) The ability to see something new and unique in the ordinary
2) The desire to combine craft and concept to create something meaningful and beautiful
3) The willingness to approach a problem from several different angles
It can be difficult to find the drive to make creative projects happen. For me, creative work takes a lot of energy, and sometimes I have it, and sometimes I don't. I deal with this by being very understanding of my lack of creative energy.
If I'm getting frustrated at myself for saying "I should [fill in creative activity here] more" I decide to either accept that it's not going to happen right now, or build time into my life to do it. It is a shame to let creative talent lie dormant, but it's worse to live with constant guilt for not using that talent. If I decide to build time into my life to bring my ideas to fruition, it helps to have a plan. I have a friend who decided to do a painting a day to kick-start her creative projects. Some days she would spend 10 minutes painting, and others she would paint for an entire evening. It's much easier to develop the drive, organization, and focus to complete creative work when you have a realistic plan.
When I'm writing or painting, I forget myself. Everything and everyone seems to dissipate into a peaceful void that's somehow filled with words, color, and emotion. There's a script or vision in my head that continues to move forward, telling me what to do next. It feels like a Vulcan mind meld, like something beyond who I am has taken over. My guest today, artist Joyce Dibona, likens this phenomenon to "channeling."
Who or what are we channeling, I wonder? Who are we hearing? Where do the mental images come from? I tend to think it's still me; the things deep inside that can't seem to jump out any other way. Joyce suspects it's something divine. Whatever it is, hearing others describe it helps me continue to accept who and what I am.
On top of this, Joyce also mentions our capitalist society with all it's norms and expectation. I've told my children that you can't always play to the crowd because the crowd may be filled with a bunch of mediocre, average people whose power and influence simply grows with size. If you lack confidence or self-esteem, you can feel overpowered, as if you're the one who's wrong, weird, etc.
Maybe there's absolutely nothing wrong with all the folks in the crowd but you owe it to yourself to be authentic, even if you're one-of-a-kind in a huge, pulsating crowd of all-the-same. It sounds like Joyce recognized this concept at an early age.
I wish I'd been equipped to pull that off. I was way too much of a "people pleaser." It's a gene I have that conflicts with a few others in my bucket. The conflict of desperately needing to march to my own loud drum while somehow still pleasing everyone has caused me quite a few aberrations. What a recipe for passive aggression and subversive behavior (especially when I was younger)!
1 dominant "people pleaser" gene
1 "adventure-seeking" gene
1 incessantly loud and creative drumbeat
1 pinch of low self esteem
1 pinch of family dysfunction
1 good intellect
1 sin-focused environment
1 million digested books
Pow! Bang! Wham!
However, like Joyce and some of the others we've heard from, thinking outside the box often helped me navigate those situations, emerging stronger and wiser. My creativity saved me.
So whether we're in the zone, channeling, or out there channeling through a crowd of folks who may or may not see the world as we do, Joyce reminds what she calls "Creatives" to be true to ourselves, show up, and keep driving forward.
Whether you're creative or not, it's great advice.
I often wonder if most highly creative people are born knowing what they want to do. Have you always wanted to be an artist, or was it a specific creative interest that evolved over time?
I knew I was an artist from a very early age. Quite honestly, from as long as I can remember, I wanted to be a professional artist, i.e. someone who made her living as an artist. At three years of age, my parents considered me precocious; at seventeen, misguided; at forty, demented; and when I reached fifty and was still pursuing my dream, they finally accepted it.
Do you have other creative interests, and if so, what are they?
I’m a closet writer and sometimes poet. I have a “streak of the geek” and am interested in the possible creative applications of ever changing technology. I am also very interested in the healing arts and alternative approaches to health.
There is a stereotype that creative people are "different," which can be a positive or a negative at times. What are your thoughts on this?
I think self-referencing can be a difficult task. Creative people certainly seem “different,” but different compared to what? Social norms and expectations? I have at times felt myself somewhat put off by the stereotype of “different” in the same manner that I’m put off by the cliché of “starving artist.” On the negative side, I think Creatives are frequently viewed through a capitalist lens in our society. If you’re making money, you’re held in regard, and elevated socially. If you’re not, you are suspect, often considered a misfit, possibly lazy, and frequently counseled to “go get a real job”.
Do you believe being creative has caused you aberrations in life, helped you deal with life's aberrations, or both?
Good question. I would have to answer both. My creativity, particularly at a young age, often left me feeling a “gap” between others and myself. In my early ages, five to nine years, it was almost like feeling a little autistic. It seemed that I had a language for interpreting life around me that most of my peers and elders, didn’t quite get. I could sense that I was often viewed as rather strange. I think a lot of creative children experience this as they try to integrate into society. In that sense, my sensitivities probably created some aberrations for me: a sense of loneliness, an inability to communicate as directly as I longed to, and a general inability to form more than one or two significant friendships.
On the positive side, my creativity has definitely helped me to not just cope with, but also navigate life’s aberrations. If you’re marching to the beat of a different drummer, it can be a very reassuring thing if the drummer is always strong, always on beat, and doesn’t just stop playing or run off at the first sign of trouble. I’ve always been able to count on my creativity. I consider it to come from a wellspring of inexhaustible energy that flows from the Divine. In my darkest moments it is still there, and it has real worth to me as I go through time. I feel creativity and a sense of reverence are closely tied. I’d rather be an artist and maintain the ability to see with new eyes, than a hard-core materialist that sees life as something to be dominated at any cost.
Have you had to deal with people in your life failing to understand your creative drive? If so, can you tell us about it and how you've dealt with it?
I think the primary difficulty with this in my early years was in my relationship with my parents. Although supportive somewhat of my creativity, they certainly did not want me to embrace the life of an artist. They were Depression-Era people, and needless to say were deeply impacted by that experience, and were fearful for my economic stability. They weren’t always wrong, lol. The way I dealt with their fears was to plunge in, plod through and keep on going, regardless. I stayed committed to my work. It eventually worked out.
I think the next area where people perhaps failed to understand my creative drive would be in my relationships. I think many men in particular have a difficult time with the amount of time it takes to be seriously involved in creative work. It’s an act of balance to have a good relationship and an artistic career. If you’re an artist, and you’re not working, you’re miserable and it impacts the relationship. If you are working, inevitably it is sometimes resented that you are not available to them in the manner they hope for. This could be a contributing factor as to why I’m no longer married, and haven’t felt inclined to ever remarry.
I often wonder, "Am I truly creative or do I just think I am?" Have you ever wondered about this? In a world filled with creative people and people who think they're creative, how have you been able to distinguish yourself and your talent, despite any doubts along the way?
I honestly have never wondered about whether or not I was creative. I think this is one of those things that are imposed on us from the outside. I think humans are naturally curious and creative. Some of us however, are more compelled to maintain and develop our creativity. How does one quantify creativity? Certainly we can measure it by production, but that’s only one way.
To me, creativity is a natural flow. In a way, it’s like having a “problem-solving mind” without all of the preconceived notions of what is the appropriate way to proceed with the problem solving. The mark of creativity is the freedom to explore. I hold this freedom paramount. This state of mind has led me from painting to explorations in three-dimensional painting to sculpture to combining all these as in my tattoo sculptures. I simply follow my nose and don’t doubt my hands. If I have a strong idea or impression, I tend to leap. I often have to figure out how to do something while I’m actually doing it.
I think it is absolutely important to remain FEARLESS in your creativity.
Unfortunately, many creative people never achieve the success they dream about. How do you cope with disappointments? What motivates you to keep going, to not give up?
Well, this is a HUGE one. As for disappointments I’ve found the rebound from them gets quicker. After awhile, if you’ve been doing this for a long time, you realize you’re a “lifer,” that being an artist IS the way you will spend your life. You have to believe in yourself, it’s absolutely vital. If you don’t, the world will eat you alive. I find true value in the creation of my work.
Everything in life eventually passes away. If my work touches one person, it was worth it. I keep going because I feel compelled to communicate, and often communicate things of a spiritual nature. I also know, on some level, that this is the work that I am meant to do in this lifetime. Like other artists, I have had my bouts with significant sorrow and depression associated with being an artist, but I’ve never lost my love of doing the work. What keeps me going is how right it feels when I am working. It truly feels like love energy. I will never leave it. My creativity, unlike a lot of things in life has intrinsic value to me.
I often wonder about the similarities and differences creative people have in terms of though processes. How would you describe your creative process? How does your mind work?
I have thought about this a lot. As I’ve watched myself over time, I’ve come to realize that there are actually two different modes or processes I tend to approach my work with. I am either completely spontaneous, and almost feel as if I’m channeling, or I am very structured in my approach.
My mind seems to function in the creative process in these two distinct ways. Sometimes I have visions, literally, where I “see” an entire work of art. When this happens, I have to dig in, and get very practical about how to best realize my vision. This type of work usually entails a great deal of physical and intellectual work. The tattoo sculptures and my newest sculpture, Atonement, are examples of this.
On the other hand, works like Spirit and Soul, Industrial Junkie, or The Last Dog are examples of sculptural work approached in a spontaneous fashion, where I’ve just dug in and started working. The painting work seems to exist within the same dichotomy. Some works are born of complete abstraction. If images are present, they often arise out of the painting process itself rather than pre-planning. This type of painting work is very enjoyable to me. I also will pursue painting in a more thought out manner, particularly when I have a particular concept or something I’m trying to convey.
What are the top three characteristics of a highly creative person, in your opinion?
1) Awareness: An open, exploring mind
2) Passion: Love for all life and ones work
3) Integrity: To thine own self be true
Many creative people have tons of ideas but never follow through. I'm not sure if it's because they lack drive, organization, or focus. What are your thoughts on this phenomenon?
Hey, it takes work! If you don’t develop a strong work ethic, it’ll never happen. Many people don’t understand the discipline it takes to create a significant body of work. You have to show up even when you’re not doing your best work, because that’s the way you eventually break through. You also have to know when you’re stuck and getting away for a while will allow you to come back with fresh eyes, just don’t use that as an excuse for staying away too long.
I do think drive has a great deal to do with this. There is no question that some people are just more driven to produce than others, and it definitely makes a difference. If you’re not producing good work, you’re still probably more likely to produce some good work if you’re producing consistently than the person who just works when the mood hits them.
Focus comes into play during this process as well, but in my opinion you have to show up in order to have something to focus on. I suppose some people suffer from a lack of organization around their work, but for the most part, if you have discipline, and you’re showing up and working, the organization is a secondary issue.
To learn more about Joyce Dibona and her work, visit her site.
Despite the premise of this blog, I still wonder why the hell we have to go through such %#@*#% crap. The human condition, the human body, the mind--they all push and push until sometimes we just can't help but wallow. (I've certainly wallowed plenty.)
We also get angry. And in those moments, positive thinking infuriates us. All we want is to be heard, to be recognized for whatever the hell pain and discomfort we're facing. "Look at me!" we want to scream at the faces around us. Sometimes we do scream. And people look, but sometimes they don't. Sometimes people can't hear or see us because they're too busy developing their own scream. So what are we supposed to do?
Who cares what the change is, just pushing on is sometimes the answer. Life develops. It may be the ones who can't or won't change, the ones who get perpetually stuck, who are the biggest sad sacks of all. They may seem happy, but standing on the same spot day in, day out sounds like torture to me whether it's emotional, intellectual, or physical. Move! Find God, find yourself, stretch yourself, let your mind walk, skip, jump, run! Do something about it. I won't lie and tell you that it's easy but I do know it's possible.
This week, I've been reminded of this concept and I intend to keep moving. I will not fear change, or become stuck in what I may have thought was enough of a change the other day. We all must find our own path, but perhaps we must also find our own mode of transportation. I think I'm close to finding mine. For Chris, it was multiple sclerosis (MS) and Jesus Christ.
After being diagnosed with MS, a poor attitude cost Chris his marriage. He now hopes that others might learn from his mistakes, and avoid allowing a disability and feelings of decreasing self-worth to destroy their most precious relationships.
Why is it that some with MS do well with the disease while others do poorly?
That is something that I certainly cannot tell you. Physicians and scientists have struggled for decades to find that answer, and are just now beginning to see progress, and recognize and understand those things for which they are searching.
What I can tell you is this. There is medical proof that demonstrates how worry, stress and anxiety are damaging to the human body at the cellular level. I've learned from my own experience with chronic illness, and the roles played by worry, stress and anxiety, that worrying and stressing about the future only ensures that the future (at least the future for which you had hoped) never comes. Worrying about finances, college tuition, adequate life insurance and more--all necessary for a bright future for my family--resulted in so much turmoil and strife in my relationship that my marriage was destroyed. Life is too short. Live for today. Like the Bible says, Don't worry about tomorrow. Today has enough worries of its own.
After your marriage ended, you decided to write a book. Why?
We all have defining choices that shape our journey and ultimately, our destiny. The synergistic effect of two specific issues inspired me to begin writing my book, Life Interrupted, It's Not All About Me. The two driving issues that pressed me to begin actually putting pen to paper were initially selfishness, and the God-given physical and mental ability to do just that.
Let me explain. You see, when I started writing the book, it was my intention to help myself by clearing my name, so to speak. My divorce was bitter and my ex-wife’s lawyer embellished so much that I wanted friends and family to know the truth. That’s when God intervened and showed me that rather than writing a book for one person, myself, I could write it for millions around the world who may be undergoing a similar situation. A situation of overwhelming gloom--an inability to see the future--which is probably best explained in my article, The Gang's All Here. MSfocus Magazine published the article in 2008 (see excerpt below). The entire article can be viewed on my site.
My marriage of ten years began dissolving when the “Monster” invited his friends to live in my house. If you have MS, I’m sure you’ve met the gang. There was the kingpin, Stress, his best friend Anger and his twin, Misdirected. Of course, Feelings of Worthlessness was there and his brother Feelings of Inadequacy who brought his best friend Low Self-esteem and his sidekick Depression, who hung out with everybody’s buddies, Worry and Anxiety. As usual, Communication was a no show, but sure enough his sister Miss-communication popped in and overstayed her welcome. They never left, but my wife did.
What factors influenced the major shift in your attitude?
I recently held a discussion and book signing at the Hopkinton Public Library in Hopkinton MA. During the question-and-answer segment of our discussion, one of the participants, the only person present with MS, asked a question beginning with the statement, “I’m amazed and excited to know that after all you've been through you're now remarried. How did that happen, because as you said, you're worse physically today than during your first marriage? And, what changed, I mean what was the turning point that allowed you to move forward find happiness and get remarried?” Of course, I knew exactly what she meant, because at one time I had the very same concern. At the point that my wife, my caregiver, first wanted to divorce, I had an inner dialogue that went something like this: Okay Chris, you have what is now becoming severe MS, who’s going to want to marry someone with MS? No one is going to want to marry damaged goods.
I'm sure that I was not the first one .to ever have this inner dialogue. It’s a real fear. I met my then wife to be, Jane, through an online dating service and she was totally aware of my disability. After Jane, my wheelchair and I went on our first date, I remember asking her, "Why would anyone get involved with damaged goods? Why would anyone purchase a vase with a crack in the bottom?" Jane’s response was, “Maybe I need one to hold my dried flowers.” All she wanted was kindness and love--no anger--just kindness and love.
It helps that we both have the same goofy sense of humor. We laugh together and at one another all the time. Sure, I have slip ups, and get frustrated and angry. The difference is that I have written, re-written, read and re-read my book so many times that when I do begin to slip-up, it’s so obvious that I can’t help but catch myself. And let’s not forget, Jane has also read the book, so when I slip up she’s quick to point out, “Chris, I think you need to revisit page 52," and we have a good chuckle.
Remember life is too short. You choose whether to smile or argue. We were married a year after we first met, and life is fantastic. Jane is the most wonderful, loving and caring person that I have ever known. If I had listened to my inner dialogue, I would never have met my incredibly awesome and loving wife. So these dried flowers are happily married and loving every minute of it. Never give up.
Obviously, life would be easier for you without MS; however, do you feel that you've grown as a person and attained a greater understanding of life and others through living with MS? Can you explain?
Multiple Sclerosis changed my life for the better. The Bible says, "Before I was afflicted, I did not know Him." Back in June of 1993, one Sunday morning after being away from the church for fourteen years, I found myself in a small Christian Church in the Northeast Kingdom of Vermont where I asked Jesus Christ into my heart. Had I not been suffering with my chronic illness I don't know where I would be today. I do know that by surrendering my life to the Lord, He has carried me and provided me with the abundance with which he has promised. "
My illness was an opportunity to remake myself into something better than I was before. What steps do you take to bring abundance into your every day life? What is your practice like? Firstly, the biggest defining moment was in June of 1993 when I gave my life to Jesus Christ, my Lord and Savior. Secondly, keeping abundance in my life involves reading the Bible, praying alone, as well as together with my wife on a daily basis, and doing my best to live a loving life the way God wants. The resulting abundance is truly amazing.
Fear often shows up when you embark on the path to abundance. What fear have you overcome?
The greatest fears I have overcome were:
A. That I would never be able to meet a woman and fall in love again,
B. I was going to be alone for the rest of my life,
C. That I would have to live in a nursing home, and
D. That I would never have a purpose to my life again.
What helped you overcome these fears?
I believe God intervened and directed me to help others by writing my book with the goal of helping those in similar situations better deal with the stress put on one's relationships as a result of life being interrupted by chronic illness or disability. I believe that when I decided to write a book that would help others in similar situations avoid making the same relationship destroying mistakes that I did, God blessed me with abundance.
A. I married the most beautiful and caring woman in April 2007,
B. My wife and I have the most incredible and loving relationship,
C. We purchased the house next door to my parents who live in the house where I was raised, and
D. I am unable to work because of my disability; however, I'm busy between six and ten hours a day reaching out and ministering to those who would benefit from reading my story.
What’s your passion? How do you live your passion everyday?
It is my passion to share my book with those who are struggling and can benefit from its contents. I wake up every day with a purpose. The purpose to reach out and help those whose relationships are suffering because of chronic illness or disability in their lives. I literally made my life an open book, exposing everything good and bad (because it's not always pretty but it's real). If just one marriage or relationship is saved or benefits because of that which I have experienced, it will have been well worth it.
What are the top three things we can do for someone who has been diagnosed with MS, or a similar chronic illness?
First, the most important thing you can do (actually not do for someone who has been diagnosed with MS) is this: Since many times, especially in the case of a newly diagnosed individual, MS is often an invisible chronic illness. We need you to believe what we say is the truth. Please don't question our integrity by doubting what we are feeling. I may look fine one minute, then seemingly out of nowhere, inform you that I can't walk up a couple of stairs or feel my hands. Please understand this is not something that we are making up to get out of doing something.
Secondly, as an individual living with MS, I know how much your assistance is appreciated. There are times that I/we become weak, clumsy even visually and/or cognitively impaired as a result of MS related fatigue, and we just can't function without your help. However, there are other times that we feel well and want to do things on our own. If you wouldn't mind, please ask if we need your help rather than just jumping in and taking over. It's a self-esteem kind of thing. *Smile*
And last but not least, life is too short. So, let's try to keep things light. A sense of humor is a great thing.
As a disabled person, what important message would you like to share with others who are disabled? What would you share with those who are not?
It may seem that you've been dealt a bad hand and rightly so, but one must not develop the Poor Me Attitude, which frequently accompanies chronic illness. Becoming depressed and making everything all about you will destroy your relationships with both friends and family members.
Do you have a life motto, and if so, can you share it with us?
Take one day at a time. Worrying about the future often ensures that the future for which one hopes never happens.
Have you ever wondered what draws you to a particular person? Sometimes we find out and sometimes we don't. Well, my guest today is someone I gravitated toward at 18 or 19 years old. If you've read my Teen Aberration Stories Series (see sidebar for links), you know that this was an emotionally volatile time in my past.
Today's guest, Renese, was five or so years older; however, due to a detour into the Navy, she was one of my college classmates. We were friends for several years but then eventually parted ways when we both finished college. For some reason, Renese made me feel understood. She made me feel okay. Although we were close and had great fun together; we never got deep. I was not about getting deep with anyone at that time in my life. I didn't know how to jump outside myself. I didn't know what to share and what to hold back. Perhaps she felt that way, too.
I recently reconnected with Renese on Facebook!
I had a vague memory that her childhood had been difficult, but didn't know the whole story. Back then, at times when folks tossed me an emotional bone, I ran, afraid that if I came to know or understand them, I'd have to explain myself in return. So now, almost 25 years later, Renese finally shared her story with me. I cried when I read her words; all those years ago, in my selfishness and fear, I missed an opportunity to connect with her on a deeper level. But I know now why I was drawn to her. She was special because in her, I saw myself--even when I didn't know who I was. She served as a sort of role model for where I might be in five years. Just like all friends, we had our ups and downs. But she was there when I was a college senior, single and pregnant. She didn't judge. She only smiled and knew what having the baby meant to me. She "got it" when few others did.
Due to the individual emotional growth patterns we each have, we can't always fully connect with those who pass through our lives at the precise moment when they enter the stage. It's easy to imagine that our connections are superficial even when there may be something deeper at play. Can we all strive to cherish those around us just a tad more? Because even when we don't understand each other, we are there together ... and that counts for a lot.
You grew up in an abusive environment. Can you explain the specifics and what it was like for you?
My father was extremely abusive, both physically and emotionally. Although he rarely beat me, he did so on a regular basis with my mother and sister who was 14 months younger than me. Growing up, I was fairly intelligent, above average in school and above average in looks. My sister had dyslexia (didn't know it at the time) and struggled in school. She also struggled with her weight, and had to wear braces and glasses. Although she outgrew all of these challenges and is now quite successful in sales, my entire childhood was a comparison between my sister and myself. My father once beat me so badly that he actually stopped at one point and pondered out loud as to the pros and cons of 1) continuing until he killed me and collected on the $1,500 life insurance policy he had on me or 2) stopping and possibly having to pay a large medical bill.
What was the dynamic between your mother and father, and how did your mother cope?
My father ruled with an iron fist. I basically saw my mother as a doormat. My father did and said anything he wished to her or to us, and she was either much too obedient or much to fearful to say or do anything in retaliation. As far as I could tell and/or remember, she made every effort to create as normal as normal a life as possible for my sister and I. I remember that she had to hide anything that she bought us for Christmas because he would be so mad about the money she spent to do so. She was usually beaten some time shortly after the opening of the presents, and we all knew it was coming.
How did you cope with the abuse as a child and teenager?
My parents split when I was 15 and my sister was 14, so most of what I coped with was as a child. I lived in fear almost constantly. There was never any rhyme or reason to what it might be that would "set my father off". It was impossible to know what I could do to please him so that I could do more of that, any more than it was possible to know what it was that would upset him in order to avoid doing that.
I later learned the term "rage-aholic" and came to understand that this described him quite well. I guess I coped by being around him as little as possible. I was lucky to have good friends with loving parental homes in my neighborhood where I could escape and spend as much time as possible.
You joined the Navy as a teenager. Was this decision influenced by what was going on at home, and was it a good decision?
I was working for a chiropractor at the time and he told me about how he joined the Navy and they helped him to pay for college. I literally left his office and went to a recruiting station and signed up. I never really saw it as the "big, important, grown-up" decision that everyone else did. I just saw it as the only option available to get what I wanted. I hated boot camp, but the remainder of the time I spent serving my country were some of the best years of my life.
After being in the Navy, you went on to get a great education. As a young adult, were you still feeling the impact of your abusive home life? If so, how did this impact your decisions and actions as a young adult?
I've been asked this a lot over the years. I've thought about it a lot as I've grown through the various stages of my life. To answer best, allow me to digress to one particular experience that occurred just before my parents separated.
I was a virgin when I was raped by a close personal friend of my father's. I was 15 at the time. I told absolutely NO ONE at the time that it happened; not even my mother. My father's every day rage was such that I had very little doubt that he would have murdered the man who raped me, and that he would have returned to the caged life he had experienced in his early 20's.
There was nothing altruistic about that decision. I just didn't want to live with the guilt of taking any part in that. I treated the rape as I did the rest of my abusive childhood: it was OVER! It was the PAST. The man who raped me most likely gave it very little thought after wards. If I had allowed that one physical act of violence to get into my head and continue to have an effect on my psycho-social-sexual life afterward, I would have given him more power than he deserved. I felt the same about my father and what he had done throughout my childhood. What he did and didn't do in his role for me as my father was HIS SHAME....not mine. I couldn't and wouldn't go through the rest of my life letting the past affect me negatively. Whether bad or good, my life experiences were going to have a positive effect on my life--or no effect at all.
Recognizing that some negative things we experience as children never quite leave us, how were you able to embrace these "aberrations" and learn from them?
Yes, bad things happen, but they are only mistakes or aberrations if we don't learn from them and take something we can use from that experience in order to move forward and live positively from that point onward. Things for which we have no control happen. Sometimes they result in bad experiences. We even make mistakes that cause bad things to happen. We can either accept that these things have happened, and figure out a way to move forward, or we can resist, struggle, and cause ourselves to be stuck in more pain and confusion.
In many ways, we all look back and wish things had been perfect; however, sometimes when I meet a person who claims to have had a perfect or normal childhood, it seems they are missing a dimension that I have. Sometimes I don't want that dimension, but other times, I cherish it. Do you identify with this, and can you share your thoughts about it?
I think that perfect and normal are both, like most subjective insights, in the eye of the beholder. I think some people delude themselves into believing their childhoods were perfect or normal because they refuse to face something too painful or uncomfortable with which to deal. I wasn't locked in a closet and denied food while my prostitute mother pimped herself out in the next room, and then pimped me out when I became old enough. I also didn't live in the Brady Bunch house. It's all relative and I believe it's what you do with it and how you deal with it as you become and adult that makes you who you are. You decide how you're going to take charge of and live your own life.
Sure, there are those extremes in psychopathology where things were so bad that the child had to form alternate personalities in order to escape the abuse. There are also lesser cases where the abuse results in other forms of social or psychological behavioral difficulties. I still believe that, for the most part, we need to look back on the bad things that happen only to the degree with which we want to use that information and experience to grow and better ourselves.
I've always believed in the garbage in...garbage out axiom. We need to spend as much time as possible focusing our minds and bodies on things that feed us positive emotions, spiritually and physically.
No one is a perfect parent, but we try. How has your past impacted your parenting skills? Has being a parent given you a new perspective on some of the things that went on in your childhood?
My father was an ass; I've tried very hard not to be one. I basically grew up with my mother because we were only 17 years apart in age. We partied together a LOT when my sister and were teenagers after my mom and dad split up. It was GREAT while it was going on, but I feel like I missed out on that kinder, gentler mother-daughter bond.
I was almost 30 when I had my one and only child, a daughter that just turned 18. We had a wonderful bond, very loving and close (even though I left her father when she was 4 months old and was a single mom until she was 9). Unfortunately, she hit puberty at the age of 7. Doctors have said that it was the assault of all those hormones on such a young person not quite ready for them, that caused some problems. Although she always says, "I love you, too" when I tell her I love her, she tells me that the last time she can remember feeling any love for me was when she was about 5 or 6 years old.
I remarried a wonderful man when she was 9 and he's been the only father she's ever known. He has been the best step-dad in the world (many biological fathers could take lessons from him). She accepts our love and the things we do for her as things she has her right and privilege and walks around us as if we were furniture. I honestly cannot remember the last time that she hugged my husband or told him she loved him. The perspective that I have on my childhood compared to my parenting is that I learned from my childhood what I didn't want for my child and made supreme efforts that she never saw or heard any kind of abuse EVER from anyone in her home. She recently told me in counseling that this is where I made my mistake; I had a bad childhood and because of that I overcompensated by showing her TOO MUCH love. I'm still not really sure how I'm supposed to take that. I do feel as if, when she finally has a child of her own and truly learns what that kind of unconditional love feels like, she'll at last understand how I've felt about her all these years. I also feel as if, because of some of the things that she's said and done to me, she'll feel very guilty about it all at that time and it will all come rushing at her in a flood of emotion. It is my sincere wish that she comes to that realization well before then so as to somewhat mitigate any of that guilt.
What are the top three things we can do for a child or teen who may be in an abusive situation?
Listen. Just talking about a bad situation at home can sometimes be cathartic and helpful to the person suffering the abuse. I'm also a big believer in prayer and prayerful meditation. Helping that person to learn coping techniques that quiet the mind can be healing and helpful. When there's absolutely no doubt that the situation is true and harmful, report it to the appropriate authorities and get that child out of the situation.
Do you have a motto for life, and if so, what is it?
Yes, I do have a motto for life and it took me a long time to learn it. It's Let go and let God. I'd heard it for a long time and never really understood just how powerful it could be.
I'd spent a great deal of my life pushing and struggling to get things done my way. It kind of goes along with the old if it don't fit, don't force it axiom. I still get really type A sometimes and try to force something to happen that I'm just certain will be perfect for me; but I've learned over the years. Even though I still need to put in some effort for the basics--the best things in life are those that just happen when I'm not even looking for them!
I've been feeling a bit down lately. I'm not so sure I like how my mural is turning out, the publishing industry seems to be moving at a snail's pace, and my mother still isn't talking to me.Of course I've seen worse calamities, but there are just some days and/or weeks when that sinking feeling just won't go away. Sometimes it grabs me by the throat even when nothing seems to be sinking; everything appears to be fine.
So what is it? Psychology, guilt, the residual pain of childhood, missing my mom, boredom, selfishness, hormones? Who knows, but when it hits, the most important thing I do is to get busy coaching myself out of it. I think about all the things I have to be thankful for (there's a lot!). I look at the beauty around me (again, a lot!). I smile because Dad always told me that if you put a smile on your face, you'll eventually feel like smiling (it works!). I make a "to do" list. I write. I paint. I read.
And more recently -- I think about Aberration Nation and all the heroes who have shared their stories here.
See, I don't just write this blog for you, I write it for me. It's great therapy, especially when the sink sets in. For many years, probably through my early twenties, that stinky sink greeted me every morning, almost without fail. But as an adult, I've managed to keep it at bay, only allowing it to stay for a few weeks at a time. Sometimes I pretend it's not there until it fades away in much the same way it crept in. I've come to accept it as part of who I am and have tried to take from it what I can in terms of positives: compassion, empathy, experiencing a wider range of emotion, creative insight, my body telling me to either slow down or get busy, etc. I am who I am, and I've learned to channel and twist a tremendous amount of negative emotion toward positive ends--but it's not always easy.
So today the sink is my visitor, and together we will welcome Prophetess Lori McKenney to Aberration Nation. If anyone has a reason for a sinking feeling, it's her. Yet Lori marches on, ministering to others because she understands their pain and suffering. (Her beautiful smile alone lifts my spirit!) She knows exactly where the sink in life comes from, and her life mission is to help lift others out so they can know the type of metamorphosis she has experienced. Sadly, many of us need a total overhaul. Other simply need an every-once-in-a-while-mini transformation, because even after a metamorphosis, we're still only human.
In her book, Transformation, Lori explains the four stages a caterpillar must achieve before it transforms into a beautiful butterfly. In correlation, she imparts how the human heart and mind is connected in the complete metamorphosis process we can all experience.
You have said that your childhood wasn't normal. Can you tell us a little bit about what it was like in your Hampton, Virginia home?
Most children don't come home and see their family members shooting at each other. I grew up in Hampton, Virginia in a city that has gone through many changes. Hampton is a nice place but I was exposed to some bad things growing up there. When I think back on those difficult times, I realize that many generational curses hovered over my family. Due to lack of discernment, these curses eventually became strongholds. My family was in great need of Jesus Christ.
Throughout the years, I noticed that my parents had different goals. My mother was raised very different from my father. My father was a concrete finisher. I watched him day after day work hard to provide for the family. When he came home from work, he cooked dinner for me and my two brothers. I don't remember too much family time such as playing games, running through the house, having pillow fights, or outside events with my parents.
The memories of my mother are very little because she only lived a short time; I will explain later. Her background consisted of partying, getting drunk, and a lot of sexual immorality. I remember her always being at my grandmother’s house where there was a lot of prostitution and bootleg activity. There were also many people around--many of whom I would see one day and then the next some evil metamorphosis caused their lives to be shortened, even to the point of death. There was often a lot fighting in my family. Sometimes they would literally shoot at each other.
For all these reasons, my childhood wasn't normal. There were times I had to put a dresser in front of the door to get some rest because of the strange men who were always in and out of my grandmother’s house. I was never raped--thank you, Jesus.
God knew he was about to change the pattern of my life. A complete metamorphosis was going to take place.
How did your home environment shape your teenage and young adult years? Were you able to overcome what you'd been through at that point?
No, it caused me to run away from home. I was very angry with my father because he eventually killed my mother. It led me to marry a man who abused me physically and mentally. I was eventually able to overcome this by forgiving my father.
You eventually found Jesus Christ, and experienced a complete metamorphosis. Can you explain what happened and how your life changed?
When I excepted Jesus Christ into my heart, I began to see God transform my life. God changed my heart and mindset. I begin to have a different view about what my life would be.
The concept of metamorphosis is central now to your ministry. How did you come to start your ministry? Was it something you had always wanted to do or did it evolve as well?
Transformation is central to my ministry now because the process I had to go through to get to this level was painful but it ultimately worked out for my good.
It was simply God.
Although you suffered as a child, you now have so much to give to others. Do you believe that the suffering you experienced was part of God's overall plan for your life? Many people wonder why God would have us suffer at all. What are your thoughts on this?
Yes, I believe God allowed this process to happen so that he could eventually get the glory. My years of rejection, negative thoughts, depression, suicidal thoughts, hate, and bitterness has enabled me to minister to all types of people.
My Christian upbringing taught me that God loves all people, and that we should first worry about ourselves before judging others. Why do so many Christians seem to spend a lot of time judging others? In your view, is that how they should be spending their time? Doesn't God just want us to be happy? How can we be happy if we're so wrapped up in telling everyone how to live their lives based on our religious doctrine? I believe love is the underlying message that so often gets lost in the shuffle.
God loves people. I don't believe He wants us to judge others. He wants us to be open and allow people to come to us to get Godly wise so He can give them a successful life.
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11 (New International Version)
When I was growing up in the 70s and early 80s, we were still watching Leave It To Beaver, dressing up in our Sunday best for church, and thinking that children of divorced parents were the only ones writing curse words in the baseball dugout at the park. Those were supposed to be the 'good ole' days. The definition of family was fairly standard: a mom, a dad, and a few kids, all spawned by the resident parents after the wedding night. Most of us seemed to fit that definition; in my neck of the woods, those who didn't were swept under the proverbial rug in one way or another. It's amazing how much energy, and pain, was spent on living up to that definition. For some, it came naturally. For others, it was hell.
Wouldn't it be wonderful if we could all just exist in a cookie cutter world where everything was just peachy creamy? Where everyone effortlessly upheld their obligations, and we all loved one another because we were just so perfect and wonderful? Maybe. I'm not sure because I don't think that exists if we're being honest. In some ways, it's not a bad dream to wish for, but it somehow ignores certain levels of creativity and the amazing individuality of our existence. It sucks the unique dry.
Years ago, living in the Leave it to Beaver aftermath of our parents' world, there were so many things that were still "hush-hush" compared to now. Those who were willing to stand up and chose a life that was a little outside the normal definition were ground breakers in my book. Too many of the avenues these ground-breakers chose continue to be criticized today in some corners of our society. Certain choices, behaviors, etc. are still frowned upon, even if behind closed doors. And I'm not just talking about the obvious ones; there are still too many adults struggling to live up to impossible, unrealistic, or counter intuitive standards imposed upon them by others.
It makes me so sad.
But then maybe, like my guest today, Lisa, I'm overly focused on how to make everyone around me happy. When a child has an invisible brand across their back that says, "Someone important in my life wasn't able to love me like they should," regardless of the circumstance, it potentially impacts their life. Even when we understand the reasons, and have coped with them, we don't forget. The best we can do is focus on all the incredible love surrounding us. That's what Lisa has managed to do. She's a great example of how focusing on the positive is the best medicine for what ails us. And furthermore, her family seems to be composed of a bunch of heroes who understood years ago that family is just a word, and it's love that matters most.
You were part of an 'in family' adoption. Can you explain what that means and the circumstance?
First of all, I would like to say that all my answers are my impressions of what happened. Facts may be skewed due to family lore and what I always grew up believing. When my family reads this, they may tell me that some things in my accounting may not be accurate. So, having said that, let's go on this journey.
I was adopted by my birth mother's sister. As I understand it, back then it was frowned upon to do in family adoptions but whoever it is that took care of such things allowed it although I understand they had to go through the same process as a regular adoption.
When my birth mother got pregnant with me, as I understand it, my father decided he couldn't handle that responsibility so he left her. She went home to have me, and my birth mother's sister and her husband decided to adopt me. Family legend has it that my (adopted) sister said she wanted me as her sister so they adopted me. I'm sure there was way more to it than that but I like that legend.
Growing up, did you know the circumstances of your adoption? If so, how did you feel about it? How was it presented to you?
I knew from a very early age that I was adopted. I don't ever remember being shocked to hear it. As I recall, my grandfather and I were in his old station wagon, and I don't know if he thought I was asleep or knew I was awake, but he told me that I was adopted and that I was loved and always, always my family wanted me, but that the circumstances of my birth didn't allow me to be with my birth mother (he put in in little kid words but those are the meanings I gleaned from it). So, I always knew. And, I remember one time, I was at the Dr.'s office and on my chart it said "adopted" and I asked my adoptive Mom what that meant and she said "Let's go get an Icee!" Pretty much, it's the only time that I remember that I ever, as a child, asked anything about my birth or parentage. Hey, I got an Icee out of the deal, but I don't remember her talking to me about the adoption.
I assume you know your birth mother. How does your love for your birth mother and your adopted mother differ? How are they similar?
I have always felt close to my birth mother, Brownie. I always knew we were tied in a special bond that could never be broken. I spent summers with her and went on family vacations with her (she's remarried and has another girl from that marriage) and have many things in common with her, including, among other things, looking very much like her.
I have and will always have an inexpressible gratitude my adoptive mother, Ethel. She taught me all the things mothers teach their daughters (except they always wear clean underwear--that's for her in case she reads this--it's a family joke). She instilled in me a love for God and family. She taught me to love myself (that's a pretty good one right there) and to respect others and always do my best, no matter what. I never felt that I didn't belong where I was. There was never any differentiation between me or my big sister as far as love and devotion. I was never second best to her.
I love them both and am truly grateful to both for different reasons. Ethel, for the reasons I stated above, and Brownie because she was wise and strong enough to allow me to be raised by people who loved me unconditionally.
I love and have always loved Brownie, but even though I know I'm her daughter, there are some things that you don't get from a mother you don't live with. Like, while I appreciate her input and insight into things, and take them into consideration, Ethel's opinion will always carry more weight with me. I always call Brownie when I have news to share, etc., but as for the "mom" things, it's always Ethel. It's not that I love Brownie less, it's just that some things are more mom oriented, and or those things I communicate with Ethel more.
Have your thoughts and emotions about your situation changed as you matured? If so, how?
When I was younger I thought I was a honeymoon baby and that my father just got overwhelmed with all his new responsibilities. While that wasn't okay or excusable, I dealt with that information as I could. When I learned (later) that my birth parents had been married for five years when I was conceived, it was a bit of a shock. My feelings were hurt that my father didn't want to have anything to do with me--a person he helped create. And how must Brownie have felt? He was willing to throw both of us away due to whatever it was inside of him that couldn't allow him to love either of us.
However, at the time I found this out, I had an adoptive father, a step-father, and an uncle (whom I have always a great fondness for--essentially another father figure) and I felt I had enough daddies who loved me for who I was and as I was. I didn't need to waste time lamenting the one who donated his DNA to me just because he was was ignorant and didn't know what he was missing. I wasn't missing anything in the daddy department.
How is the relationship between your birth mother and her sister, your adoptive mom? Has it remained consistent over the years?
As far as I know, they have remained the best of friends over the years and I have only seen them close.
I do remember one time we all went camping, the entire clan. At that time, I had my first son and he was the only grandchild. Somehow something happened and from what I heard, there was a "I'm the grandmother" come-to-Jesus meeting between Ethel and Brownie and that's all I know about that incident. I wasn't even aware it was going on at the time. I did realize that something was up but didn't know it involved me. I've never had the nerve to ask about it. It wasn't really my business ... or at least I didn't think so.
Looking back, do you feel that the best decisions were made in your family with regard to the adoption?
Without question, yes. I can't imagine my life any other way. Really, I am blessed with the best of both worlds. I have a loving mother, a loving "birth" mother whom I know and love, a sister who asked to be my sister, and another sister who, when she found out about me, embraced me as her sister, no questions asked. How could my life get any better? You know when you're learning math and you have those circles and they are intertwined? There's some in Circle A, some in Circle B and then there are some in both? I am the one that's in both and I embrace that. I appreciate that.
Being either a parent or child in an adoption situation often makes one contemplate what love is, and what makes a family. What are your thoughts on this?
I've never questioned what a family is. It's at least one parent who loves you no matter what. It doesn't have to be a birth parent--just someone who can love you unequivocally. Ethel did (does) that for me.
Has being adopted impacted the key relationships in your life. Has this changed over time?
I think that my need to please people (thinking that will help them like me more) probably comes from being adopted. Always trying to keep things light, especially in tense situations probably stems from that. I think that, in my life, I've had a father throw me away (essentially) pretty much. It can't get much worse than that as far as feeling unloved. So, anything I can do to keep someone from feeling like they can "throw me away," i.e. please them, make them smile, love them unconditionally (sometimes undeservedly, as in the case of my first husband--hard lesson learned there!) etc., is my "raison d'etre". It's not conscious, in the forefront of my mind day in and day out, but looking at my life, I tend to try to be lovable. And my self-analysis tells me that this is probably why.
As I get older, I'm learning that it's IMPOSSIBLE to make everyone happy. There are just going to be people who don't like me, no matter what, and that I will live through that. It's taken me awhile, but, I'm getting there.
Although thrilled to become a sister, my daughter (who was adopted by my husband) became quite curious and concerned when I was pregnant with her sister. I believe she feared that her dad would love her sister more than her. She was 10 at the time. Based on your experience, can you provide adoptive parents with any tips or insight into how best to explain adoption to their children?
You know, I don't have any answers. All I can say is honesty is always the best policy. Age appropriate honesty. Make sure there is no differentiation in the way you treat the children. Unfortunately, ten is old enough to see how parents (naturally) dote on a baby, therefore, natural feelings of jealousy will emerge. However, I would buffer those feelings with stories of when she was a baby. Such as "you know when you were a baby we did this with you, too" and just make sure she knows you still love her. You cannot show/tell a sibling, adopted or not, that too much.
Someone once said something to me like "adopted children are special because they were chosen" or something to that effect. It's true, I feel special because, as I said earlier, my sister said she wanted me for her sister, and that offsets that "my father threw me away" mentality to some degree but reminders are always welcome for an adoptee.
I'm lucky in that I had Ethel who was willing to take me in as her own and I never felt I didn't belong there. Bob, Ethel's husband, loved me to the end of his life as his own and often told me the luckiest day in his life was the day I came into it. Henry, Ethel's second husband, treated me as his own and although Henry was tough and expected much, I knew he loved me. Brownie has always been a constant source of love and understanding and her house has always been a safe haven for me, no matter where she lived. And Brownie's second husband, Howard has, in his own way, shown me that he loves me. He sat down with me every night when I was taking college algebra and helped me with my homework. And, my sister? Try sisters. At this point in my life, I really don't differentiate between them. I have two sisters. One I grew up with and the other I watched grow up. I am blessed to be loved, as a sister, by both. And, as if that weren't enough, I have two great brothers-in-law and they both know the situation, but, again, love me as their own and I love them.
Life is good for this adoptee. I love my life and all the family members in it.
... I now see Don’t You Forget About Me by Simple Minds as a sort of anthem.
Have you ever considered what it might be like to rely on others so much that you're prohibited from having your own home in the traditional sense? Aberration Nation has welcomed many guests who have shared uplifting stories of survival and hope; but we've not yet met anyone like Kev. If you think you have challenges, wait until you hear what courageous Kev has to share. This intelligent, personable forty-something-year-old man lives in a home for the disabled. Before that, he was confined to his parents living room. Look around now and count your blessings. Kev does ... and he often shares what he's added up on Facebook.
Despite its popularity, quite a few folks criticize Facebook, saying it's a poor avenue for communication ("get off your butt" or "just pick up the phone") and that it's a self-centered past time. Well, for my guest today, it's a fantastic way to communicate; sorry naysayers, he can't get off his butt. And for him (and many others) it's not self-centered, it's therapeutic and out-of-the-box wonderful.
Yes, I met Kev on Facebook.
He has more Facebook friends than anyone I've come across! Perhaps the most aggressive internet marketers have as many. Yet, Kev isn't selling anything. He's simply offering friendship to thousands of people like me. His daily posts oscillate between things like "another bloody day" and "life is beautiful." When he has a "bloody day," his Facebook friends pop out of the woodwork (or cyber space) to encourage him. And in return, he encourages them. That's what I call beautiful.
It's obvious that many of Kev's Facebook friends are inspired by his ability to communicate with honesty and courage. While we should all strive to be positive about our lives, regardless of what ails us, it's also important to express our moments of despair. And your outlet may not be available to the next person; so what if it is Facebook? Who cares? It seems to have provided Kev with a link to the world that he and other "societally" disabled people often need.
This is Kev's story.
You describe yourself as “societally” disabled. Can you explain what that means, and how you are disabled?
"Societally Disabled" is basically a phrase I coined following a chat with a friend just before Christmas last year. It speaks to barriers society erects around us.
How did you come to be disabled and how did you cope early on?
I was born with Spina Bifida and Hydrocephalus on 27 October 1967. For, I confess, most of my childhood and adolescent years, I had a chip on each shoulder. I resented the fact that I couldn't do what others could do, such as go out with friends and go out on school trips to name two examples that readily spring to mind.
How has your attitude evolved over the years and what were some of the contributing factors?
Over the years my attitude has evolved. The best example of this is the move I had to make from my family home in September 2001 (the day before 9/11). Over time, even though I'm "societally diisabled, I've had to learn to be more independent and "plough my own furrow."
You live in a home for disabled individuals. What is everyday life like there? What do you like and dislike about it?
I have lived at The Dan Y Bryn Leonard Cheshire Disability home in Cardiff (UK) since August 2002. Life here is very similar to riding a roller coaster. There are both good days and bad. Two good things about my relocation were (1) my quality of life has improved markedly over time, in sharp comparison to my life prior to my move, whereby I was practically marooned in my parents living room, and (2) I along with two of my neighbors starred in the original series of Creature Discomforts. This was a collaboration between LCD & Aardman Animations (the creators, most notably, of Wallace & Gromit). The buzz phrase of the campaign aimed at the UK community was "change the way you see disability." This resulted in my seeing myself as very much of a disabled activist. Conversely, a downside is (and I don't mean to be offensive when I say this) but my neighbors here have a collection of conditions, which can make life very stressful from time to time. You just have to "grit your teeth."
Many people have difficulty imagining what it’s like to live a “societally” disabled life. How has being disabled molded you into who you are today? At this point in your life, are you happy with how you’re spending your time, and with the relationships you have?
That is a little difficult to answer. I guess that living alone (outside my family home) has helped me mature. I serve as the Deputy Chair of the Homes Residents Committee, and I used to serve as a Regional Service User Representative. However--and this may be perceived as wrong of me--but I have longed for the chance to work and get paid for it. Having said that, I was paid for my Creature Discomforts work. This, furthermore, has resulted in two appearances on BBC Radio Wales and BBC TV Wales (my local and national BBC stations). Nowadays, as a result of not being paid to do what I've done, I'm not doing quite so much. I still spend some time as a campaigner. However, I now spend a lot of time on Facebook. As well as this--and making a lot of good friends on Facebook--I also found Stacey, a lady from League City, Texas. She is, undoubtedly, the love of my life.
Despite the positive attitude you have today, I’m sure there have been many low points. Can you share some of those with us and help us understand how you were able to move forward amidst the struggle?
Low points? One that readily springs to mind, and that has pretty much plagued me, is that I suffer from depression. This stems from an experience that occurred shortly after my fifteenth birthday in 1982. I was watching a film in school, and I proceeded to have the most ENORMOUS headache. I was rushed to the hospital where I was placed on a life support machine in an intensive care unit for as long as I could without being rendered a vegetable. I have, for this whole length of subsequent time, battled against this demon. I can still guarantee that no two days are the same. I am moving forward though, thanks to finding love with Stacey.
What are the things in life from which you derive great joy? What are your pet peeves?
There is one thing I can pick out as a great joy, that, undoubtedly, is Stacey. As for pet peeves, one issue that really gets my blood boiling is lack of respect, in all forms, that are shown toward those of us who are "societally" disabled.
Some people who live perfectly “normal” lives fail to realize the simple blessing of good health. They continue to feel dissatisfied or become bitter that they don’t have “this or that.” What would you say to those folks?
Basically, I would answer this question by telling these people, YOU DON'T KNOW JUST HOW LUCKY YOU ARE.
What would you say are the three top misconceptions about folks who are “societally” disabled?
Well, in my book, we're seen as being unable to speak up for ourselves. Additionally, we're seen to be not very intelligent. (What about Professor Stephen Hawking?). Also, I feel that some, not necessarily all, people are ignorant of us. They feel that we are not that bothered, and they don't want to bother with us. To argue that point, I now see Don’t You Forget About Me by Simple Minds as a sort of anthem.
How can we best help people in your situation? What do you need or want from us? How can we, in big or small ways, add positives to your life?
Put briefly, the best way I can think of answering this question is to say, don’t ignore us, and give us the full equality, that is rightfully ours. Give us a level playing field and the same rights as everybody else.
If you could say anything to the world and to those who have crossed your path over the years in both negative and positive ways, what would that be?
I suppose, to the people who would, or have spoken negatively, I would take a leaf out of the book of Brian, The Bull Terrier, and just say Watch Me. Which incidentally, is being seen by the UK disabled community as every bit as iconic as Martin Luther Kings' I Have a Dream speech.
To those who have looked on me in a positive light, I would like to simply say thank you for your loyal support. It is MUCH APPRECIATED.
Thanks for visiting Aberration Nation during the teen event! I'd also like to send out a special THANK YOU to all the brave folks who participated, including Melissa Walker, Lisa Morguess, the four teens who shared their writing with us, and Josh, who opened up about losing his leg.
I hope all who visited not only enjoyed reading the content, but also found it thought provoking and helpful. I was hesitant to share the thoughts I had and poetry I wrote as a young person, but doing so has been a positive experience for me. Like my friend Lisa, I don't want to loose sight of all the things that happened in my life. Good or bad, they molded me into who I am ... and continue to do so. I'm still evolving. If my life had ended on that dark, hopeless Louisiana night in 1985, I would never have experienced (to name a few):
- visiting Europe, Utah, Southern California, New York City, Puerto Rico, and Singapore to name a few
- lying on the hood of a speed boat, racing through Lake George in New York, the wind in my hair
- promoting someone deserving to Associate Director and seeing her face light up
- reading the millions of books I've found since then
- knowing my wonderful in-laws, who have touched my life
- being an Aunt to seven awesome kids
- reading a history my grandfather wrote about his life
- earning a BS degree, and then an MS degree in my 30s
- watching my daughters learn to walk, ride bikes, run, read, write, etc.
- meeting a million interesting people who have taught me that life is an absolutely beautiful jumbled mess
- learning to love myself
With regard to the teen who looks fine and dandy, but is suffering (Penelope):
1) Listen for hints and openings offered to strike up a conversation about what's bothering him or her. (I often hinted to adults but they missed it every time.)
2) Don't assume the kid who appears to be the strongest, brightest, or most cheerful is immune to depression. Remember the signs of depression. Understand that there can be a difference between diagnosed mental illness and depression based on growing up in a depressing environment. I was taught to experience life a particular way; once I understood that I didn't have to look at life through the lens of my teacher, I began to break free of that sad lesson and find my own view.
3) Take the emotional pain a teen expresses seriously. Don't talk down to them, or treat their suffering as if it's trivial. Although they're young, they are complex individuals with deep emotion. (This happened to me numerous times, even with health care professionals.) Don't offer easy fixes to teens as if their pain is a passing phase. This makes them feel even more isolated and strange.
5) When you know a teenager is surrounded by dysfunction, don't assume they're fine just because they're smiling with a sparkle in their eye.
6) Find, create, and/or offer a safe environment where the teen can unload. Even at a young age, years of trying to keep it all together is difficult to break through. If they talk a lot about pain related to their social interactions, ask them about their family. If they smile and say they have a nice family, blah, blah, blah, dig deeper.
I was a tough nut to crack (and still am sometimes), but nobody even really tried ... I eventually had to bust my own nut.
For the obviously stressed teen who is acting out (Lisa):
There were so many obvious, glaring signs that I was troubled, and they were all overlooked. To this day, I find it just really disturbing that nobody reached out to me.
I was clearly withdrawn and depressed by the time I was in high school. My grades started to slip. I often went to school disheveled from abuse I had suffered just that morning at the hands of my mother. I even often got drunk on school grounds at lunch period and then went to classes after wards, and nobody ever picked up on it or called me on it. So, I don't know . . . I guess what I would say to adults is "Don't overlook the obvious!" I mean, it's a fine line, I'm sure. A certain amount of teenage angst and even acting out is to be expected, and I don't think adults should be right in every teenager's face offering/threatening counseling over every little thing, but I do think that adults need to just try really hard to be tuned in, to be able to recognize the difference between normal growing pains and signs of something more serious.
Up next week on Aberration Nation, On Being Societally Disabled: An Aberration Story. If you think you have challenges, wait until you meet courageous Kev. He lives in a home for the disabled. Look around now and count your blessings. Kev does ...
Stubbornness can be described as refusal to adapt one's perspective, or being reluctant to cave in to the views of others. It's having a concrete standing on a topic, and not letting anything stop you from thinking that way. And by most, stubbornness is viewed negatively, as an obstacle that prevents us from moving forward with our goals, our relationships, and our lives.
Stubbornness is my aberration.
I am hesitant to admit another person is right and even when the majority of proof shows me that I'm wrong, I argue to defend my point, no matter how hopeless of a cause. When working with others on a task, I push my own ideas forward, dismissing the thoughts of others. And when arguing with accomplices, I don't give up until I win. And thus, people view this trait of mine as a bad thing, as a flaw on my part.
But though my stubbornness appears to be a hindrance to myself and others, it is something that helps me succeed beyond the expectations of all others. My stubbornness helps me earn high grades in my classes, as with my persistence, I never settle for anything less than a perfect score. In group-work, I always push work on people, thus resulting in a better job done overall. And by always questioning views that are different than my own, I learn more about the topic I am inquiring about.
I have grown to level out my stubbornness. I attempt to listen to the opinions of others completely before immediately declaring them as wrong. During group-work, I try to have others assigned to specific tasks, and only focus on my own job. And in general, I listen to people before spontaneously jumping to conclusions and making judgments. While I tone down the negative sides of my aberration, I attempt to enhance the positive. I aim higher in grades and overall goals, always trying to surpass what I previously accomplished. I form a concrete code of values by sticking to my ideals and points. Thus, I have come to balance my aberration.
One specific case of my stubbornness dates back to fourth grade when I felt a certain answer to a math problem my teacher gave was incorrect. I forced my explanation on the teacher, insisting my solution was the correct one. Eventually, the teacher brought over the head of the math department, who confirmed my solution. Though I was right, the stubbornness I used to convey my opinion was uncalled for. I acted in an obnoxious manner, not letting the teacher skip the problem and move on to another. I was so rude that even my classmates were angered with me. The next day, students kept on showing me the golden rule of the classroom: “listen to the teacher”. However, I did develop a reputation of always having to be right. In this way, stubbornness is both something positive and negative in regard to my life. Yet I have come to accept it as a definite part of my life--a part of me that will stick to me no matter what happens, no matter how much time passes, and no matter what type of person I develop into. Stubbornness will always be my aberration.
... I understand that it is up to me to make my own happiness in this life.
Welcome back to the ongoing story of Lisa Morguess. Go here for Part 1, and here for Part 2 of Runaway Lisa: An Aberration Story.
Of your six children, one has Down syndrome. What was your initial reaction to the diagnosis and how did you initially cope?
Finding out that Finn has Down syndrome was shocking and devastating. He is our sixth child, and after having previously given birth to five healthy, “typical” children, I guess I had developed a sort of arrogance: I just assumed that I would give birth to another healthy, typical baby. Finn was a planned home birth, as was his sister before him, so I had home midwifery care prenatally. Based on that, and my assumption that we didn’t have anything to worry about, I never did any prenatal screenings that would have detected his Down syndrome, despite the fact that I was 40 years old. I have come to develop a lot of strong feelings about prenatal screenings since Finn’s birth, actually, but I only bring it up here to say that we did not know about his Down syndrome until after his birth, whereas some parents know before their baby’s birth.
Finn’s birth in a birth pool in our bedroom was uneventful as far as births go. I think my midwife suspected something as soon as he was born based on her examination of him, but she didn’t say anything right away. I can imagine that for a midwife who has nurtured such a personal relationship with her clients, it would be very difficult to deliver news or suspicions about the baby that might have the power to pull the rug out from under the family.
To me, Finn looked like a “normal” baby, so I didn’t suspect anything. He slept almost constantly from the moment he was born, so for the first several hours, I only saw him asleep. There came a point, however, the afternoon following his birth when he opened his eyes, and suddenly, it dawned on me that he looked like he might have Down syndrome. I still remember very clearly my stomach just turning into a ball of knots at that moment, but I brushed the thought away because it just seemed so improbable . . . that’s the kind of thing that happens to other people, you know? My midwife was actually sitting on the bed with me then, as she had come back for our first postnatal visit. She had gone home and done a lot of research, and now, she sat there examining Finn in great detail - much more thoroughly than I remember her examining Finn’s sister when she was born 21 months earlier. She then gently pointed out a few things--the single line across each of his palms, his crooked pinkie fingers--and said I should ask our pediatrician about them. “Why?” I asked her. “Because sometimes these can indicate certain anomalies in the baby,” she answered. I knew in my heart at that moment that Finn had Down syndrome, although it would be several days before we had a genetic workup done and received confirmation.
Shortly after that exchange with my midwife, Finn began spitting up blood, and my husband and I rushed him to the emergency room. He was diagnosed with a duodenal atresia--or intestinal blockage--which I later learned is fairly common with Down syndrome. He had surgery to correct it at one day old and spent two weeks in the NICU. That was a devastating time for our whole family. We had planned a home birth and had fully expected to be at home bonding with this newest member of our family, and instead he was in the hospital recovering from major abdominal surgery, hooked up to all kinds of tubes and wires and monitors, and I couldn’t even nurse him in the beginning. It was during his stay in the NICU that we learned that he does, indeed, have Down syndrome.
The diagnosis was very difficult to come to terms with. There is a grieving process. All of your dreams and expectations for this new child suddenly must change. There is a lot of unknown, a lot of fear. And unfortunately, a lot of misconceptions based on old ideas and outdated stereotypes.
It’s been a process coming to terms with Finn’s diagnosis. I can’t say that it ever interfered with my ability to bond with him--if anything, I have felt more fiercely protective and in love with him even than I did my other babies--but it’s still been difficult to know that the future I had unconsciously mapped out for him--the dreams I had for him that I didn’t even realize I had-- that all of that was not to be--or at least not to be as I knew and expected it.
Has mothering a child with Down syndrome been different than what you expected?
I remember thinking, when Finn was a tiny newborn in the NICU, and we received the news that he has Down syndrome, “I don’t know how to be a mother to a child with a disability. Some days I barely feel qualified to parent my normal children! How am I supposed to do this?” But I realized that mothering Finn is much the same as mothering any of my other children. His basic needs are the same: food, shelter, clothing, and love, lots of love. There are things that are different in his care than my other children: he’s undergone three surgeries now, whereas none of my other children have had any sort of surgery; he has physical therapy once a week to help him develop his motor skills; he doesn’t meet his milestones on the same time line that the other children did. But for the most part, he’s just a baby, just like they were babies. I feed him. I clean him up. I rock him. I hold him. I sing to him and call him silly little nicknames. I breathe in his sweet baby smell and nibble on his toes. It’s not so different. It’s not scary like I thought it was going to be.
I’m sure that as he gets older and his needs and abilities change, there will be aspects of parenting him that will be different from anything we’ve experienced in parenting the other children. Sometimes I still get scared about the future, about Finn’s future, about our ability to meet all his needs and give him every opportunity he deserves. But for the most part, we just try to appreciate now.
Do your other children understand that your son has special needs? Do they help you and your husband, as needed?
Finn’s older siblings are 12, almost 7, 4 and 2 years old. Kevin, our oldest, obviously has a better understanding of Finn’s Down syndrome than the younger children. Kevin has done his own research and has become an advocate among his peers, refusing to tolerate words like “retard,” and taking it upon himself to educate his friends.
Joey, who is almost 7, has a very basic understanding. He knows that Finn has something called Down syndrome, and we’ve told him that it means that it might take Finn a little longer to learn how to do certain things, but really, I don’t think Finn’s differences at this point are so glaringly obvious to the other kids that they really see him as anything other than their baby brother who is really cute. The twins, age 4, like Joey, know that Finn has Down syndrome, but their grasp of it is pretty nonexistent at this point.
All of the kids are very loving and affectionate with Finn. And at this point, at 11 months old, Finn doesn’t really have “special needs.” He’s healthy (he doesn’t have any major medical issues); he doesn’t require any special equipment or medicine. He’s a baby. The kids love him and play with him like they would any other baby.
When we are teenagers, it seems like time passes so slowly, especially if you're unhappy. Could you have ever imagined having the full and busy life you now have back then? If you'd known what was in store for you, how might it have changed your attitude about life?
I spent the better part of my life in a state of deep unhappiness. When I was younger, I used to fantasize about being happy some day, but it was always with a sense of waiting for happiness to find me. It wasn’t until I was in my thirties that I realized that happiness isn’t something that randomly finds anybody--that I had to claim my life and make my own happiness.
Back then, when I was an unhappy teen, no, there was no way for me to imagine that my life would somehow be so profoundly different than it was at that time. How can you imagine something you’ve never seen or experienced? I figured my life would follow a pretty predictable line: I would someday get married, have a couple of kids, have some kind of job, and beyond that, I didn’t know. I was intent on escaping the unhappiness I lived in, and my one big grand attempt at escape - running away from home--really turned out to be trading one kind of unhappiness for another. So even in my adult life, I gradually came to accept that happiness was a myth, that the best I could hope for was to get by.
If I could have foreseen what my life would someday be like--full of life, and love--I’m not sure how it would have changed my outlook about life back then. I suppose I would have lived in a state of biding time. Maybe I would have learned a lot sooner than I did that it was within me all along to make my own happiness.
In the midst of handling your overflowing life, your husband received a cancer diagnosis. Can you tell us about that?
Yes, my husband was diagnosed with stage 3 colorectal cancer this past February. It was one of the single most devastating things that I/we have ever been faced with. This is another one of those things that you just don’t expect to happen to you, to your family. And the fact that this type of cancer typically strikes older people, and my husband is only 42, made it all the more shocking. It all seemed--and still seems--so unfair. We’re happy. We have six children who need and adore their father. How can cancer be a part of our life?
Fortunately, his prognosis is good. His doctors have remained very positive and optimistic that Michael will overcome this.
The treatment is a long, tortuous process, however. First, six weeks of simultaneous chemo (delivered through an infusion pump into his arm around the clock) and daily radiation. Followed by more chemo, a different cocktail of poisonous meds. Followed by major abdominal surgery, which at this writing, we are anticipating in about a week. The surgery will require several days of hospitalization, followed by several weeks of recuperation. Subsequent to the surgery, he still has several more months of chemo.
It’s been difficult, to say the least. It is like watching my husband be slowly tortured, and it is torture for me because I am utterly helpless to ease any of this for him. Compound all this with other factors, like the fact that my husband still is the sole provider for our family (how can I go get a job? I’ve been out of the workforce for seven years now, I have six children to care for, one of them a child with a disability). That has created an enormous amount of stress and pressure for him. We have very little family support, so we are isolated in this experience to a degree. The kids are stressed and scared and acting out with high emotions, clinginess, fear, etc.
However, this ordeal has also strengthened our marriage, there is no doubting that. Michael and I are closer and stronger together than we’ve ever been.
Cancer forces you to take stock of your life and your priorities. I think we have a deeper appreciation for everything we have, tangible and non-tangible.
In my own life, sometimes I feel like no matter what trials come my way, I will never feel as downhearted as I did as a kid and young adult. Do you ever feel that you've reached the limit of what you can handle?
With all the trials and hurdles you deal with, are you still happier than you were as a teenage runaway. Yes, it’s amazing even to me that even in the midst of everything going on in my family, I am truly happier than I’ve ever been. I love my life. That is not to say that I embrace the challenges, like my husband’s cancer. Yes, there are times when I feel like I can’t deal with one more thing, times when I feel like I am going to fall to pieces. And I do. I lock myself in the bathroom, or in my bedroom, and I allow myself to fall apart for a little while, crying my eyes out and ranting about the unfairness of it all. I write, which is extremely cathartic for me. And then I pick myself up, dust myself off, and go on.
How have your children responded to your husband's illness? How do you help them to cope?
When we learned that my husband has cancer, we sat the kids down and told them very matter-of-factly, “There is bad news and good news. The bad news is that Daddy has a sickness called cancer. The good news is that the doctors are going to work very hard to make Daddy better.” Kevin, as the oldest, was the only one who seemed to have some understanding about how serious it was. He asked, “Is Dad going to die?” That was hard, knowing that he would carry that fear, the same fear we were carrying.
At first, the kids seemed to be doing really well with the whole thing. For a while when Michael started undergoing treatment, the side effects were not extremely severe. He was still going to work every day. So the kids seemed to take it in stride, and we congratulated ourselves on how well we had handled it with them.
But over time, the side effects from the chemo and radiation became more obvious, more severe. And there’s never been any getting away from the fact that Dad has a “tube” in his arm (a PICC line, which is a port through which the chemo is delivered into his body). He’s had it since February, and it’s a constant reminder that he is sick. Over the last few weeks the kids have manifested some behaviors that tell us that they are, in fact, having some trouble coping. Emotions have been running very high with some of them; there has been a sharp increase in tattling, tantrums, and other attention-seeking behavior; they’ve been very clingy with Michael, becoming very upset when he leaves the house for anything, even to go to the store.
So we’re just trying to be very conscious of the kids’ feelings, to stay in tune to them and talk to them. The kids’ teachers are all aware of the situation, so we are in touch with them, as they are on the lookout for acting out by the kids which may indicated their trouble dealing with their dad’s illness. We’ve spoken to a counselor about how to help the children cope. It’s a day-by-day thing.
Considering that you've likely now reached the center of your life, how has your attitude changed from the girl who ran away?
I think the sum of my lie experiences has made me cynical and skeptical to a degree, but I am no longer that frightened, hopeless girl. I understand that nothing is forever--not the bad or the good. And I understand that it is up to me to make my own happiness in this life.
What has your son's Down syndrome taught you about life and love?
It is difficult to articulate how he has changed me. There are so many feelings swirling around in my head and my heart concerning Finn, that transfer to a much wider view of the world: acceptance, a desire to embrace every “under dog,” the fact that every life has value, the realization that my heart is bigger and more resilient than I ever thought possible.
After all that you've experienced and seen in your life, what can you say to folks--teenagers or adults--out there who believe there is nothing to live for, or that their hope is limited?
Everybody has something to live for, even if it’s merely themselves. Whatever somebody’s present circumstances are, there are always ways to change those circumstances. It is within everybody’s power to make their own happiness.
Join Lisa and I for final thoughts on July 7th. We'll share a special list of adult actions that may have made a positive difference for us ... once upon a teenage time.
There are multiple ways to run away. When I was nineteen, my attempt to run bought a three-day stay in intensive care. On the third day, one of my high school teachers happened to walk past the large, rectangular window of my room. I hid my face under the sheet. I hid my real face under all kinds of sheets for a long time. Lisa, who is highlighted in the Aberration Nation Teen Event (that starts today), ran away, too. We both survived. While the lives we enjoy today are certainly not perfect, they are much more than we ever imagined remotely possible once upon a teenage time.
A lot of the people in my young, lonely life wondered what in the Sam Hill I had to be so upset about. "She's a smart, tall blond. Her mom is such a strong Christian. Her dad is a high school guidance counselor. Her smile lights up a room; she's always has a date. She made straight A's last semester. Blah, blah, blah, blah." Some of those same people may now ask themselves, "Why in the Sam Hill would she share something like that on the Internet?"
You know who you are. Go ahead!
I've shared my secret because it's the most provocative and honest way I can explain the deep soft spot I have for teenagers.
Many teenagers have wonderful, functional families that help them successfully navigate their way through the ups and downs of those years. Others, despite great environments, struggle. Then there are those who don't seem to stand a chance in hell, and yet, they sail through. Some don't make it. Many do but then think about the desperate actions they took for many years, trying to understand what happened and why. Others separate out the early parts of their lives as if they're merely photographs of someone they used to be. The album snaps shut and that is that. As teens and as adults, we're all different.
During my mid-to-late twenties, I wrote a novel called Boundaries based the culminating struggle I went through to finally emerge on the other side of all the painful, lonely experiences I had as a child and teenager. It was a painstaking project that took many years. When I finally finished, I wasn't sure if I'd said all I could, or if I'd properly explained the complex situation, and how I felt about it. At thirty years old, I still wasn't sure if I fully understood it all, or if I ever would. Part of me wished I could be the type of person who closes the album, stuffs it in a box, and skips away.
I began trying to express myself through writing at a very young age. In recent years, I spent hours reading my old journals and stacks of poetry. What struck me is the phenomenal growth, and expanded contemplation and insight that evolved over the years between 12 and 21.
Here's a journal entry I wrote at 14, the age of most of my guest bloggers for this special teen event:
Some people live to make others die inside. They laugh at you and your feelings. Never think this is because they're older than you. It's not. It's because they're cruel, and anyone can be that way. (1980, 14 years old)
And here's a poem from the same year:
Who blew out the candle?
I still want to see beauty,
When the flame is gone,
It's lonely in the dark,
I can't see,
Light a candle,
Running out ...
(1980, 14 years old)
At 14, my voice was young although my emotions ran deep. Life was confusing and I attempted to make sense of it with a beginner's toolkit. In reading the teen stories submitted for this event, I realized again why writers are so often drawn to their youth. Even the brightest or most talented teens can't always understand, describe, and fully express their experiences and emotions. The ability to do so can significantly increase as each year passes on that reckless highway between childhood and adulthood--and then continue ... The aberrations stories shared with you in the coming days were written by teens just completing the 8th grade. They're on the sharp edge of high school, where, in many ways, it all begins.
As you read their stories, I ask that you not only consider the words provided, but also imagine the words that may be missing. The voices you'll hear were our voices years ago. I wonder what these young people will say about their aberrations next year, or at 19, 30, or 43? They'll have seen adventure, accomplishment, and perhaps tragedy they can't imagine today. Yet at the core, at least in part, they will still be the selective mute, the amputee, the Muslim, and the stubborn boy who visited Aberration Nation in 2009.
Interspersed in their stories, you'll hear from Lisa, an adult who was once a teen runaway. Consider how she might have described her life at 14. What would she have shared and how would she have said it? Would she have understood her situation, emotions, and actions so well? What type of lens did she peer through all those years ago?
So what's the point of all this?
Well, I'm not a teacher, psychologist, physician, Oprah, or Dr. Phil, but I have a feeling we can all do a better job of listening to the teens in our lives. We could try just a little harder to remember what it was like once upon a teenage time. It's so easy to look into a bright, young smile, shrug off any doubts, and say, "She's fine. She's a beautiful, smart cheerleader," or drive the kid who wants purple hair and five piercings crazy although he's actually got a great head on his shoulders.
Through out this event, I'll also post brief excerpts from my journals, as well as some of the poetry I wrote between the ages of 14 and 21. Don't expect award winning writing, but you will find honesty. My aim is to use my early content to further support the idea that our understanding, and the ability to express ourselves matures dramatically during those years. I believe this is important because the depth of my emotions never changed. They were as strong and real at 14 as they are today.
The recognition of this disconnect seems important. I hope you'll agree.
Come back Tuesday for our first teen aberration story: Selective Mutism.
So thanks for including Alan Cummings' short, it's-about-time piece on gay icons in your April 13th edition. Mr. Cummings' article, Judy, Barbra, Liza—And Little Edie: How the 'Grey' ladies, and their ilk, became the gays’ ladies, is amazingly aligned with the underlying message of Aberration Nation. His concluding statement hit the proverbial nail on the head:
“I would like to replace the word gay with queer when talking in broad terms about our collective experience. Queer isn’t just about same-sex wedding tackle. Queer is about sensibility. You don’t have to be gay to be queer. Indeed, some of the queerest people I know are straight. My mum is a bit queer. Obama is definitely queer. Little Edie Beale was very queer. I think if more people embraced their queerness, we’d all be the better for it.”
Based on his plea that we all embrace our queer identities, I’d like to officially define queer within the context of Aberration Nation as “having physical, mental, and/or situational aberrations.” Mr. Cummings noted that the original gay icons are "people who, like gay men of a certain age, have faced adversity, and who, like them, have had to fight to become the person they want to be." This inherent struggle and compassion for others is exactly why Aberration Nation includes aberration stories focused on gay men. It's also exactly why I chose to include a gay primary character in my novel, Aberrations, which is set in the late 1980's in the deep South. Angel, the protagonist of Aberrations, has narcolepsy. Based on negative experiences with those who fail to understand her plight, she has retreated into herself as a coping mechanism. The gay character, Tim, (who would now be of "a certain age") emerges as the one person in her life capable of identifying with her struggle and calling her out of the unique closet she has created for herself. By Mr. Cummings' standards, Angel could be a quintessential gay literary icon, and Tim her adoring fan.
In creating Angel and her surrounding characters, I intended to embody the emotions and inner conflicts we all share regardless of our particular aberration. Aberration Nation was created to broaden the concept that the underlying human emotions we experience are often quite similar despite what our story is, and therefore we're all capable of true compassion. I hope my readers, as well as yours, can see that when you strip away sex, political party, race, education, culture, and whatever else seems to define us these days, we are all an amazing animal called human.
I’m naming Alan Cummings as my first honorary member of the Aberration Nation. He'll join the everyday heroes who have graciously and bravely shared their aberrations with the hope that folks out there will finally understand that we're all brothers and sisters of the same huge family.
After all, we’re all queer ... some have simply worked harder on the closets they choose to stay in.
To learn more about Aberrations, go here.
Up Next: Living with Chronic Pain: An Aberration Story
To hell with redundancy, I'll say it again.
Aberration Nation is not about world peace, going green, or gay pride. It's not about healing all the ills that exist in our growing culture of materialism and instant gratification. It's about individual self-reflection and optimism. It's making lemonade out of lemons and smiling through our tears, knowing tears are part of package, and that tomorrow is a new day filled with opportunity and greater wisdom.
We've already established that sometimes life sucks. It's unfair. This week alone we're faced with more economic stress, a savage earthquake in Italy, and reports of multiple senseless murders. And in our personal lives, we can't get what we want. We fail. We crawl. We cry. So what are we going to do about it? First, let's all define our own personal tragedy. In other words, let's ask ourselves what the heck is going on in our own lives to illicit such misery? Take a good hard look. Is it really worth all the tears and bellyache? As a brilliant college friend of mine used to say, "Maybe...maybe not."
Sometimes when hit with one of life's crappy blows, I allow myself to wallow in full scale self pity for one day. In many ways, it feels so good to feel so bad. I get to think about all the sucky things life has thrown my way, and all the people who done me wrong. I get to selfishly focus on all my flaws, and consider where they came from. I detox my problem sinuses with tears, and think about how much I hate my allergies, osteoarthritis, and headaches. The sad truth is that some people function like this day after day after day. I did for awhile--years ago--so I know how self defeating it can be. It's a painful journey on the road to nowhere, and when you're on it, it seems like nobody truly wants to come along, pull you off, or point you in the right direction. The only place it got me was a two-day stay in the Intensive Care Unit.
The road to nowhere never ends for some folks. If anyone had a right to take that sad sack road, it was David Christian. I heard Dave interviewed on the Michael Smerconish Radio Show one frigid morning on my drive to the Philly airport. As he spoke, I was completely humbled. I strongly considered that my self-pity didn't even deserve one measly periodic pity-party day to enjoy itself. I contacted Dave that very night to ask if he would like to join the Aberration Nation.
Welcome aboard Dave!
So who is this guy who so effortlessly pulled the self-pity party option right out from under my feet? Dave Christian was the most decorated and youngest American officer in the Vietnam War. He enlisted in the United States Army at age 17. Rapidly promoted through the enlisted ranks to Sergeant, he was admitted to Officer Candidate School and commissioned at 18. Following Officer Candidate school he completed Jump School and Green Beret training. He was promoted to Captain at age 20. Dave's service in Vietnam ended January 13, 1969 when he was severely burned by napalm. He was medically retired from the Army at age 21. For his actions during the Vietnam war Dave was awarded: The Distinguished Service Cross, Two Silver Stars, Bronze Star, Seven Purple Hearts, and Two Vietnamese Crosses of Gallantry among other medals.
Dave says that participating in any war changes a person for the duration of their life. However, as with any life sucking situation, a choice is made. No one ever said it was an easy choice. As a young man, David Christian courageously chose a road going somewhere, and embraced his painful experiences to forge a life filled with positives. He refused to let those seven purple hearts implode his own. He found a way to incorporate them--and all they stood for--into himself, and his heart is seven times larger for it today. On my morning commute to the Philly airport, I just had to believe that if he could do it, so could I. Dave's words here are brief, but when you know the story behind them, they pack a heroic punch.
You were awarded seven Purple Hearts for your service during the Vietnam War. First, can you briefly define what the Purple Heart signifies, and how you ended up with seven?
The Purple Heart is a unique award created by General George Washington during the Revolutionary War in Newburg, New York. It started as a Purple Ribbon of Merit. During WW I, it was reestablished by the US Congress and Department of Defense to be given for Combat Injuries. In reality the Purple Heart is one of the most unique Awards in the United States. An individual is eligible by an enemy inflicting bodily harm on an American Military Warrior. To earn one or multiple Purple Hearts you must be injured by different enemy weapons or enemy deeds at different times.
When you returned from the war, you were quite young. How long was your recovery and how did you cope?
My physical recovery is a lifetime. You are a Veteran 24/7 and you carry your wounds for life.
Were there specific individuals who made a positive difference in your recovery and attitude, or did your own resolve get you through? Some people have a tremendous amount of help but they still can't seem to pull themselves up when life has knocked them down. Do you believe circumstance plays a role in how we cope in such situations, or does it ultimately hinge on our inner spirit and determination?
My wife and daughter were important. The men in my outfit from Vietnam, "Christian's Butchers" were also a positive factor. In serious disabling injuries like burns, I think people, places, and things all have an impact on one's inner spirit and determination.
Did your experiences in Vietnam play a role in creating the path you took once recovered? If so, can you explain?
Experience in any war will have an impact on one's life for their entire life. Hopefully, they will gain the wisdom to understand that war is always the last resort in resolutions of issues and conflicts.
Now that so many years have passed and your life story has played out a bit more, do you feel that those painful moments in Vietnam ultimately held positives in terms of the man you became and the life you have now?
Absolutely. I learned to depend on others, but I also learned independence--and the importance of both.
Most of us can't imagine being in war, particularly those of us who are part of more recent generations. We watch war movies and the History Channel. We read about the events in the Middle East, but for most of us, it's not as close to home as in years past. Perhaps this is one of the reasons we often take our freedom for granted. As someone who has fought for freedom and stood next to those who would try to take it, what can say to us about America and the many things we enjoy?
Even if a particular day, week or year doesn't go so well, we're still free. From your perspective, how valuable is that? First we must understand that war is not romantic. It's traumatic. America has never given out a Romantic Stress Award for war. However, America does recognize traumatic and emotional injuries. To coin an old phrase war is hell. I believe in the flag, the Constitution, and the men and women in uniform. True warriors want to prevent world 'bullies/terrorist." They are protecting America, their neighborhoods, their families, their churches and their friends. In war an individual realizes that our freedoms had to be inspired by a higher power, and many soldiers recognize that there must be a God behind the men that crafted and fought for America's freedoms.
As someone who has fought for personal freedom--which is about individual choice--what would you say to those who feel victimized in life. In other words, folks we hear constantly saying, "He did this to me, and she did that," and "I can't get a job because they ... blah, blah, blah."
The world is made up of many different people. You will always have the victims. The victims may be removed from the experiences by geography or time but you will always have victims (both real and wannabes).
If you could say one thing to Americans, and have them truly listen, what would that be?
Love and respect yourself, and therefore you can understand respect and love of country.
And I'll just add--it's tough to truly love and respect yourself when you're drunk on tears at the pity party.
To read about David's accomplishments and current activities, go here.
Are you depressed today? Did someone stab you in the back? OMG, are you addicted to coffee? So ... if you don't get a break, or have a vacation soon, you're going to lose your @#$!x& mind, right?
Norman Vincent Peale's book, The Power of Positive Thinking, written in 1952, was the first to teach me a thing or two about the power of positive thinking. I read it in the 80's. In the 90's, Tony Robbins emerged, saying that the way we communicate with others and with ourselves ultimately determines the quality of our lives. Using strong words out of context can create an unintended, negative mindset. This insidious drama queen language, in itself, can be damaging. And now we have Rhonda Byrne's The Secret! When are we all finally going to get it?
Lost in both our blatant and more subtle negativity, we often forget that there are people out there who actually have a real disease called depression, and are in jeopardy of losing their minds on any given day. Heck, some people actually grew up in neighborhoods where people were stabbed every now and then. When we take their words are we downplaying the seriousness of their history and/or ongoing struggle? Does it make their experiences somehow less severe, and therefore worth a bit less attention from those of us lucky enough to simply be a little down from time to time?
And it's not about political correctness. It's about language, and the powerful messages we feed ourselves--mental loops that influence our emotional programming.
I often wonder who those truly depressed, mind-losing, struggling people are. Surely they aren't my neighbor, the soccer mom with the fake nails in line at the grocery store, or my co-worker who just got promoted. They must be tucked away somewhere having problems or trying to recover.
Wrong again ...
The more I come to appreciate that normal is a farce, I realize that these people are all around me, at times weaving in and out of my life on a daily basis. Maybe you are one of them. If not, are they listening to you talk about your so-called depression, and your emotional stab wounds, wondering if you actually know what those words mean? If you have experienced some of these serious issues, hopefully you've come to appreciate the words you use to describe your life, being careful to avoid those that should be reserved for the emergence or re-emergence of those heart-wrenching challenges you manage to keep at bay.
Liimu does just that. She's a young consultant with a bright smile and quick wit. If you met her for coffee, or crossed her path at the grocery store with her three young children, you'd never guess that she once dropped acid and lost her #$#%x@ mind. She has joined the Aberration Nation. Her name is Liimu and she's an alcoholic ... she's also your neighbor.
Your past includes a psychotic break and time spent institutionalized. Can you tell us what happened?
I was 24, and was finishing up my final year of college. Over the Christmas break, I went to see my boyfriend in New Mexico. We met in Las Vegas, and then for some reason, he thought it would be a good idea for us to drop acid before we made the 17 hour drive back to New Mexico.
Flash forward two months: I wake up hearing voices. I swear I can communicate with my cat without opening my mouth. I can think “come here” and he come s prancing into the room. I start writing letters like crazy, all the while showing up wherever, whenever I please. I miss appointments I've had for months and sit for exams without opening a single book. When my mom finally comes looking for me, she tells me we were going to see a doctor. We go to the mental health clinic on campus. They lock me in the ward, only releasing me to have an occasional cigarette.
When I was locked up, my mom visited daily. Every time she came, I had my bags packed and ready by the door. Every day, I was told I could not leave; they didn’t know when I’d be released. What was supposed to be a couple days’ stay turned into a five weeks of lock down. I finally agreed to go to rehab, and was released. I found out later that if I hadn’t agreed to the rehab program, they would have sent me to a long-term facility where my chances of getting out would have been slim to none.
Like myself, you were raised in a dysfunctional home. How did that environment bear out on your mental health as a teenager and young adult?
There were so many ways that have a dysfunctional home played out for me, the most impact probably being that I was raised in an alcoholic home. I didn’t learn any real coping mechanisms, and certainly didn’t learn that it was okay to be different, or to have feelings, or to be scared or sad. You just put on a good, strong front and muscled through, or you gave in entirely and were a complete loser drunk. So, although I finally realized I was a drunk and had to get sober, I put on a brave face for many years. It was that pressure, in part, that led to my breakdown. I have to be careful about that to this day.
You’ve said that being institutionalized changes a person forever. How so?
When someone else says, “If I don’t get a vacation soon, I’m gonna have a breakdown,” they don’t really mean it. For me, it's truly a deep-rooted fear. In the same way that a person is changed forever by the experience of seeing a violent crime or losing a loved one or becoming a parent, a person is changed forever by losing his or her mind. Suddenly, the idea that the mind is a thing that can be lost takes on new meaning. I'm always aware now of where that line is and how close I am to it. I know what lies on the other side of sanity.
Can you describe your mental break?
I was completely removed from reality. Until I entered the mental institution, it wasn’t scary at all. I had this overwhelming sense of calm, actually. Like I was completely in tune with the energy of the Universe. But, once I got locked up, it was a whole different story. If you’ve ever seen one of those movies from the 1950's where they show a funhouse with scary looking faces flying in and out of the camera, and people laughing and screaming at the same time while the room is spinning around and around--it was sort of like that, only scarier. I remember at one point (during a drug-induced, fitful sleep), dreaming that I was literally standing at the gates of Hell, facing the Devil Himself. When I woke, I felt like I had very narrowly escaped Hell.
You recovered from your psychotic episode, and went on to finish college and begin a successful career. How were you able to walk away from such deep pain and mental disarray? How are you now?
For me, it was a simple process of recovery--not easy, but simple. I surrendered to my alcoholism and addiction, and began to work the principles of Alcoholics Anonymous (AA). Soon after, I developed my own understanding of a Higher Power and since then, it has been easy.
Were there any particular individuals who influenced your recovery, or was it ultimately a case of, “I will survive?” Did it take a combination?
Each person is unique. What are the key success factors in your ongoing mental health? My sponsors, my mother, my therapist, my husband, and my female friends have all been instrumental. The key success factor in my ongoing mental health is my commitment to recovery--in all the ways it manifests in my life, whether it's workshops, recovery programs, friendships, therapy, exercise, etc. My commitment is to improving myself, and improving my relationship with God. As long as what I do is fundamentally based on one or both of those priorities, I’m doing fine.
Having grown up in the shadow of mental illness, how much of your own issues do you attribute to nature versus nurture? How does one stop the vicious cycle of familial dysfunction? Is it possible?
I definitely believe that it's possible to break the cycle, though for me it's impossible to deny that I had it in my blood (my father and mother were both alcoholics). What I hope to pass on to my children is how to recover, so that if they are afflicted with the disease of alcoholism, they will know there is a solution. I also think there is a line between teetering-on-the-edge-of and full-blown addiction, and for some people, that is where environment plays a role. In my case, I've had an addictive personality from as far back as I can remember.
Looking back, can you tell us if and how your experience being institutionalized, and the associated struggles, have changed you for the better? What are the positives you’ve found in yourself and in others as a result of your unique life?
I don’t take anything for granted. My commitment to recovery is strengthened by how much is at stake for me. I have more empathy for the suffering of others and for the mentally ill, who are not bad or scary people, they are just ill and need help. I have a complete awe and love for my Higher Power for having taken me to the depths and brought me back again. That’s what it took for me to fully accept my alcoholism and recover. And ever since then, I have been committed to serving God and others.
When I start to feel sorry for myself, I immediately look for ways to be of service to others. That’s the quickest way to get over anything that is causing me pain.
For more on Liimu, visit here and here.
Let's all admit that having what many consider an imperfect baby after nine long months of pregnancy is every mother's nightmare. Most of us realize that absolutely no love will be lost for our beloved child, but we fear the stress it will place on our families and ourselves. We fear that our child will struggle, and we fear the reality that we will be forced to watch that struggle, incapable of making it all go away. Michelle Incandela has faced that fear, that dreaded aberration, and has won a shining victory.
This is Michelle's six-year-old daughter, Gina Marie Incandela. The girl can sing!
Before reading further, listen here, here, or below:
So where's the nightmare, you ask?
Surprise! Gina also happens to have autism. If you don't know much about autism, this may come as a shock. Gina is her mother, Michelle's, inspiration and hero. Michelle is a hero in her own right, doing whatever she can to help Gina develop her extraordinary talent while also facing the reality of autism. With Michelle's dedication, Gina's following has grown considerably. She frequently sings The National Anthem at major sporting events around the country, has appeared on NBC's Today Show, and has recorded a single, "Dare to Dream."
In addition to a speech and language delays, Gina had many other developmental delays. According to Michelle, Gina lacked age appropriate social skills. She had poor eye contact as well as sensory and feeding issues and more. She had difficulty transitioning and didn't adapt well to new environments. She was often afraid in public and couldn't tolerate noisy places such as theme parks or carnivals. She had odd behaviors such as scratching the floors and walls. She had no imaginary play skills.
When faced with this picture of autism, no one could have imagined what breathtaking beauty and talent lay hidden in the heart and soul of this little girl. It reminds us all that no matter what difficulties we face, we each have something unique to give, and that the people in our lives who seek to identify those hidden pearls within us, hold them out for not only ourselves but the world to see, and help us live a positive-focused life are truly miraculous individuals.
Michelle is now a proud member of the Aberration Nation. She was quite excited to share Gina's story.
Describe autism for us using your own terms? What is it like to have a child with autism, and how does it impact your day-to-day.
Autism is a very complex and difficult disease to describe. It's a social disorder which affects all children differently. The symptoms vary between children and they vary from day to day. Gina is very high functioning. There are moments and days where I have to remind myself that she has autism. There are other days when I can’t help but be reminded because it is so difficult. Autism is sometimes like having an invisible wall between you and your child. There are days when Gina is very disconnected and difficult to reach.
Gina must deal with a condition that has and will impact her unique place in this world, and yet she also has an incredible talent. How do these two facets of Gina work together? Help us understand the connection?
When Gina was first diagnosed, the doctor was unable to tell us if she would ever speak and whether she would be able to function as an independent person in society. I feel blessed and incredibly lucky that she has progressed the way she has. But, I'm always aware that while she has some incredible talents and abilities, she will always have some symptoms of autism that will make some things more difficult for her. We've tried to focus on the positive and encourage that which comes easy to her and have used that to incorporate lessons in areas which do not come so easy.
Gina loves singing and loves performing. She truly appreciates the fact that her singing makes people happy and loves for people to be proud of her. We do everything we can to encourage the connection she is making with her audience. I think when people are touched by Gina’s voice and hear her story, they are learning about autism. All autistic children are unique in their own way. Gina’s talent and the sharing of her talent is helping to create awareness for all those kids.
She thoroughly enjoys sharing her passion for music with others. She is quite comfortable on stage before thousands of people. Even though she is comfortable, performing requires a certain level of discipline and practice. Gina needs to rehearse and adapt routines to different events. The ability to be flexible and to change routine are areas where Gina has had difficulty. We use her performance practices to work on transitioning to new environments and break from routine. We have noticed that she is slowly becoming more flexible and does not become concerned with changes to routine as she did previously.
Gina’s amazing vocal talent helps to connect her to this world and the people in it. I think it will always serve as a form of expression for her. It is sometimes easier for Gina to express herself through music than through simple speech.
How did Gina come to be diagnosed with autism, and what was your initial reaction? How did you cope?
We took Gina for evaluations when she was 2 years old because she was still not talking. I realized at that point that something was not quite right because when she would try to speak the only sound she could make was “eeeeee”. I thought she needed some some form of speech therapy, but the idea of autism never entered my mind. Looking back, Gina displayed many behaviors that were clearly symptoms of autism. At the time however, I mistook these for behavioral quirks.
There were so many red flags that I missed because I just had no knowledge of this disease. When one of the first therapists evaluated her and informed us that Gina had autistic traits, I didn't take it too seriously. I wasn't devastated and I wasn't in denial. I just didn't think the therapist was correct in her opinion. I was unaware that autistic children can be very intelligent. Gina was able to understand us and she had excellent memory skills and was quite smart. She loved to be held and hugged, she laughed and smiled, and I thought, “This is not a child with autism.”
I ordered several books on autism and sensory deficit disorder. After reading the materials, it was clear to me that Gina was in fact autistic. I was quite shocked but I still didn't feel devastated, and wasn't in denial. I knew the experts were correct. I did however, feel an overwhelming sense of pressure. All the materials suggested that early intervention is the key to success for many of the kids and I felt as though the clock was ticking. The evidence suggested that intensive therapy should be administered between age 2-5 when the brain is most capable of adapting. I wanted Gina enrolled in every possible program and therapy. I can remember visualizing Gina on the other side of a window that was closing and I knew I had to do something to keep the window open, or she would remain on that side forever. I was determined not to let that happen. This was going to be a fight.
I relied on my family heavily during that time. When Gina was diagnosed with autism … it was a diagnosis for our entire family. We coped as a family. We had therapists conduct training sessions at our home to educate us about autism and what we could do to help Gina. We all needed to learn how to model speech, redirect, and deal with any issues that came up appropriately. We made every family outing a form of therapy, whether it was a meal at a restaurant or a trip to an adventure park. Mom, Dad, Grandma, Grandpa, Aunts and Uncles all became part time therapists. We played learning games, and became experts at ignoring negative behavior and reinforcing positive behavior. I think most importantly, we created an environment of consistency between therapists, school and home. We did everything possible to continue what she was learning in her full time day program to her home life.
What do you think are the most common misconceptions about autism?
People are unaware of how broad the autistic spectrum is and that there are many forms of autism. Many think of the movie Rain Man and think all cases of autism are severe and have the same symptoms. In fact, no two people with autism are the same. The disease varies widely with respect to symptoms and severity. There are many autistic people that are quite affectionate and don't mind being touched. Gina is friendly and now very talkative so people assume she can’t have autism. Also, autism does not go away. There are those who think kids receive therapy and are cured. The autistic traits and differences will always be there and they will always need to adjust to a world they perceive differently than most. But, there is hope for children as many who receive therapy improve drastically.
What has Gina's autism and amazing talent taught you about yourself and others? How has it made you better or stronger?
It has taught me that I should not underestimate what my children are capable of, or set limits on what they can accomplish. It has also taught me acceptance for the differences of others, and I am amazed at the strength and beauty of the human spirit. I'm much more appreciative of the many blessings in life and I think it has changed my priorities for the better.
What are the top three things we can do for parents dealing with autism?
1. Offer to babysit. Parents with special needs children are under an exceptional amount of stress. Quiet time is hard to come by. Most people are weary of staying with an autistic child but, frequently the parents are desperate for some outside help.
2. Learn about autism. Become aware of the signs and symptoms and approaches to dealing with autism. Let the parents know that you want to learn about this disease and what you can do to help.
3. Get involved with an autism charity or foundation to raise awareness. Helping to find a cure will help everyone.
If you could say anything to the world about autism, what would it be?
That it is a horrible condition affecting our children in record numbers and we need to work together to find a way to cure it.
To learn more about Gina, please visit her Web site.
Have you ever wallowed in self-pity, playing the victim? I've certainly been guilty of it. I still need to remind myself every now and then that I'm the master of my own fate, and that much of it has to do with attitude.
My guest today, Teresa Lauer, was victimized in a way that exposes our day-to-day victim playing as ridiculous self-pity. She was brutally raped. Teresa has graciously agreed to share her experience with us, and how she overcame this aberration. Helping others understand and succeed in rape recovery isn't new to her. She's now a psychotherapist, and a recognized expert in rape recovery and its aftereffects on relationships and sexuality. Teresa has authored several books on the topic including The Truth about Rape and Hours of Torture, Years of Silence. To learn more about Teresa and her practice, visit her here and here.
1) Sometimes our aberrations result from situations beyond our control. Sometimes we see it coming and sometimes we don't. You were a victim of a crime that changed your life. Can you tell us what happened?
Yes, I was kidnapped and held in a house in San Francisco for 14 hours; I was raped a number of times and suffered some very serious injuries. Perhaps my most frightening moment, the one that causes me shivers still as I sit here writing these words many years later, is when the rapist held a gun to my head. I heard a click that sounded like a cannon resonating in my head and squeezed my eyes tighter than you can imagine ... it didn't go off and I give thanks every single day for being here ...
My nightmare continued when I returned to my home and received a phone call informing me that my dad had been killed in a plane crash during an airshow. This seriously disrupted any recovery that might have begun early on following the rape.
The reason I mention my dad's death is to underscore the fact that rape takes place while we're living life, while we're wives, mothers, daughters, sisters, employees, students ... the list goes on of course. Now, this makes recovery more difficult but even more critical. A return to normal ... and whatever that means to the victim ... is the goal and it's one that can absolutely be met. I know from experience, both personally and through my clients, that recovery is achievable; yes, it takes patience, and yes, it's long and tedious. It's one step forward and two steps back, but it's worth it.
2) I suspect that people cope with being victimized in numerous ways. How did you cope, and what was the process like?
The process of recovery takes a great deal of time, something I've learned both personally and through many women I've provided therapy to over the years. And, looking back, I did things that helped my recovery tremendously ... and things that didn't help, frankly. I do know however, that the earlier one starts the recovery process, even in the most casual way like reading books, the better.
We tend to cope with being victims as we cope in normal life. If we tend to deny problems exist, we'll do the same regarding being a victim. If we're the type who faces problems head on ... well, we'll approach recovery the same way. This has much to do with left brain/right brain thinking. For example, "a left brain thinker" during the assault might be recording information and looking ahead. A "right brain thinker" on the other hand, reacts with shock and numbness and being frozen. She's not able to fully experience in terms of "seeing" what's going on. There is no right or wrong way, although as you can imagine, the "right brain thinker" tends to blame herself afterward with questions like, "Why didn't I fight back?" and "How come I can't remember the details?" Both are coping mechanisms, and both are necessary to get through an extremely stressful situation.
I feel incredibly lucky to have made it out of the house alive. We do what we must to survive.
3) Looking back, how did the event shape the life you now lead? Have you ultimately found positives in the path your life has taken? Has enough time passed? Although it was certainly a tragic experience, have you come to see any value in it?
Following my own recovery through therapy I felt so light, so wonderfully free that I obtained a Masters degree from the University of San Francisco and become a therapist myself. I wrote several books, videos, etc. and have provided therapy to hundreds of women. I'm always looking to provide information of value to my readers and listeners and bring them the latest technology; for instance, I'm in the process of offering my videos online in the $1.99 range so that they're available to even more women.
In terms of value ... I suppose I'd say the greatest value that I could place on it is what I did following my recovery, and am continuing to do which is to provide comfort, compassion, and empathy of other rape victims. My life is not defined by the rape however it's been affected by it. It's an honor and a privilege to help the women I have.
4) What do you focus on now, and how do those things differ from the past?
As a therapist, I focus my efforts on couples and helping them build intimacy and enhance their sexuality. For most of my couples, this doesn't mean that they've experienced a sexual assault, but for those who have I reintroduce them to touch and ways in which they can communicate, both verbally and non-verbally to enhance their relationship. I was fortunate beyond belief to find a partner who loves me without question and I am particularly interested in helping men participate in the recovery.
I also concentrate on other issues of particular difficulty to couples such as finance and career transitions.
5) Has your experience caused you to think differently about people who "play the victim?" We all know folks who consistently feel that they are victimized by everyone. Having truly been a victim, what is your perspective on this type of thinking in others?
I think if someone has a tendency to be a victim, to indulge in victim thinking, if you will, they perceive themselves as victims in every circumstance (in their own mind) that happens to them. I feel that it's important to face our responsibility for every situation in which we find ourselves; for instance, if a woman came to me and she related that she found herself in the same situation multiple times due to perhaps drinking or drug use (and thus a victim of that, that led to the ultimate victimization), I'd encourage her to look at what lead her to becoming a victim. The reason of course is not to judge what ultimately happened to her because no one asks to be raped, however, the reason is to help her to not continue to place herself in situations where she will become a victim. Victim thinking has its roots in other personality disorders and that really has to be addressed at some point in the therapy.
6) What are the top three things we can do for someone who has suffered rape or a similar violent crime? What are the challenges?
Great question. I'd say my top three things are:
1. Help her get support as soon as possible. Go with her to the police station so that she's not alone; listen to what the professionals are saying during the process of the investigation and rape kit. Be there for to take notes and act as an advocate. Try to get the services of a SANE (Sexual Assault Nurse Examiner) who will do a thorough exam and act as a witness should she decide to press charges. A SANE is a member of a SART (Sexual Assault Response Team) who are
especially trained to make it a less stressful process to go through, for instance, one interview is performed instead of multiple. Be her advocate.
2. Listen when she wants to talk; don't judge ... don't comment, simply be there to listen. Allow her the time to process what's happened to her.
3. Help her to find the right support for what she's going through. For instance, books are available on all phases of recovery, support groups and individual therapy might be helpful if she's inclined. Go the extra mile to make the appointment for her and go to provide emotional support. There are times when she will need special assistance, for example, I have a number of clients who are uncomfortable with touch, so I keep a referral network of massage therapists who are specially trained in introducing touch to sexual assault victims. Go the extra mile for her.
7) If you could say anything to the world regarding this situation, what would that be?
Perhaps if I could tell the world something about the situation, it would be this: rape continues. Every single day in every single corner of the world. I wrote The Truth About Rape and my others books to tell the truth about it ... to take my reader with my on my journey through therapy and beyond. It was a real process of self-exploration in deciding whether I would tell the details of my rape however I felt it important in the long run to hold nothing back. I wanted that woman out there who couldn't utter what had happened to be able to turn to her partner and say, "this is what happened to me." And through that, find understand, compassion, and empathy.
Religion is always a touchy subject. I've not quite figured out why it should be but centuries have proven that more of the same is on the horizon. There are quite a few dominant religions supported by similar themes. They're all supposed to provide a positive influence, but when faced with all the negatives surrounding the topic, one might wonder if it's really worked out the way it was originally intended. My guess is that man's touch has tainted the basic messages and meanings behind the mysteries we all seek to understand.
Describe why your level of commitment to Christianity is an aberration. In other words, how does your level of commitment differ from that of the average traditional Christian?
My level of commitment to Christianity is directly correlated to my commitment to Jesus Christ. I just believe Him! I know Him! I have seen Him. At the appropriate times, He has empowered me with His Spirit to do the things that the Apostles did. It is just that simple.
He is the way to truth and life because he DID come back from death to live again. I have found that most people don't really understand the magnitude of this. Most people, including most church goers, either aren’t interested or don’t care to focus on life after death. Most so-called Christians don’t honor Jesus in everything they do. I act everyday in my belief that Jesus is real. He’s foremost in my mind. I don’t go to church on Sunday and then forget about him the rest of the week.
My commitment involves standing up for what I believe rather than following current cultural tides. I act everyday in my belief that Jesus is alive, tangible and real. I don’t see this level of commitment in too many others. For example, few are thankful for the chance to be saved from utter darkness. Few are concerned with the F word these days. Few speak the truth about what God said regarding gay and lesbian relationships. Few call abortion murder. A woman who’s had an abortion must truly repent, and accept that Jesus died for that sin to free her. It’s not okay, and it’s not a woman’s choice. Life and death are God’s choices.
Can you give an example of empowerment to the level of the Apostles?
I’ve witnessed miracles first hand and have been part of them. I’ve known things about people that couldn’t be known, and my knowing this information has resulted in tremendous changes in their lives ... similar to when Jesus knew details in the life of the woman at the well. I’ve cast demons from people, and seen their lives change in miraculous ways. The things I've witnessed would change Bill Maher's mind, that's for sure.
Have you actually seen Jesus? Please explain.
Yes, several times. I know it’s hard for others to believe. When I saw Him, He talked with me. Once I saw Him walking on the side of the road. Somehow I walked with him for awhile. He was unassuming and kind. He told me I had “done good.” Once, I saw Him in church and realized that no one else could see Him. I observed Him for quite awhile, and at one point He winked at me.
Can you share how being a highly conservative Christian has impacted your life negatively? Christianity has a positive message so how has it created issues for you?
In speaking the truth, sometimes I spoil the ambiance around others. A lot of people don't really want to hear the truth. People usually react to me in one extreme or the other. Sometimes they believe and want to understand what I'm saying and my love for Him. Other times, they think I’m just a religious fanatic. My aberration is that not very many people want the real truth, and I do. They ask, “What makes you think you know the Truth?" And then they say, "I'm a good person," as if that makes everything all right. I think about so many people who refuse to see the truth about how much God really loves them, and I cry.
Why has it all been worth it?
I've had a hard time because I believe in Jesus. I've had so much fun with Him though; He has such a great sense of humor. He makes up for much of my loss. Yes, it’s all worth it for me because He's my friend, my God, and my king. Without Him, I would have no hope. I want to reign with Him for 1,000 years when the time comes to do so. My path is His. He leads and I follow.
He said that we must be born again and I believe Him. People just don’t realize how powerful He is, what is coming, and how critical it is to be fully prepared.
If you could send one message about your beliefs to the world, what would it be?
To learn more about Jane's beliefs regarding Jesus' imminent return, visit Endtime Ministries.
"Growing up with a very volatile person has given me great patience when dealing with others."
What it was like growing up with a mentally ill parent?
I'm lucky to have a few memories of my mother when she still behaved like a typical mom. She was very creative and involved with my sister and me. She liked making crafts and taking us on mystery tours to playgrounds we'd never seen. However, around the time of my ninth birthday, things changed drastically. My mom became confused, and couldn't express herself properly. She couldn't use the phone, had very poor balance, and couldn't cook. Although I wasn't aware of any specifics, I knew something was very wrong. The following year, Mom moved in and out of the psychiatric ward for several weeks at a time. That's when I became the mother figure.
Twice, I came home from school and found the house full of smoke. My mom had been trying to cook. I had to call the fire department. Another day, she climbed on a chair in the kitchen and fell. I picked her up and put her to bed, then called my dad and asked him to come home from work because I was scared. My younger sister was quite sheltered from most of this. I didn't realise how much I protected her until we discussed it as adults. We're very close because of what we've been through together, and my sister is grateful that she was able to have a childhood while I took on responsibilities beyond my years.
As a child, what were your top priorities?
When my dad left for work each morning, he always reminded me not to let Mom touch the stove, not to let her go downstairs, and so on. It never seemed unusual to me that I had to do so much for my mother. After school I would babysit her instead of going to a babysitter myself. My dad worked in the city, and rode the bus two hours each way, so we were very much on our own. My top priorities became making sure my mom and sister had what they needed until my dad got home. My kid time was in the evenings when Dad took me to Guides or a church youth group. In school, I didn't relate well to the other kids. I was an easy target for bullies, but I thrived in Guides where maturity and responsibility were prized.
How did you come to understand that your family was different in this way, and how did you cope?
Around age twelve, my parents took me to see a social worker due to depression and my dislike of school. Not knowing that my mother had been diagnosed as mentally ill, I was only able to describe her behaviour and how it made me feel. The social worker tried to have me role play communication with my mom; she pretended to be my mom. I became very frustrated when the social worker wouldn't believe that my mother wouldn't listen if I told her I wanted to talk about something, and would instead either ignore me or become very angry and rude. This was the first of a string of social workers and psychologists who made me feel like an alien because my family was like no other they were aware of.
My coping mechanism became to stay away from home when possible. I immersed myself in volunteer work with Rangers, the local youth centre, and anything else I could get into. When things became too intense at home, I would walk to a local park and sit under a tree reading a book for a while. Sometimes I would walk around town all day, window shopping, talking to strangers, and just trying to forget what I had escaped from at home.
How did having a parent suffering with mental illness impact your ability to relate to others as you matured? Did it somehow expand and/or squelch this ability?
Having been a caregiver at such a young age, I have always assumed leadership roles. In Guides, I was a Patrol Leader, and as a teenager, I was an assistant Brownie Leader. I joined a committee to create a youth centre in my town, and often initiated new projects with that group. I made a lot of friends through that committee, and they came to rely on me as the person to go to for advice, or just a sounding board when they needed to talk. Even now at age thirty, friends come to me when they want straightforward, honest advice.
The flip side of my honesty and strength is that I can be blunt and sometimes bossy, but I'm able to acknowledge this. I try to keep myself from getting too pushy. My friends know that they can be equally honest with me, and I appreciate that. My drive for volunteerism has remained strong as well. I run two singles' social clubs, a support group for sleep disorders, am a member of Scouting, and an all-purpose volunteer fund raiser and cage cleaner for the Humane Society. People ask me for help, and I step right up to the job. At times this has been overwhelming, but in recent years I've learned how to say no sometimes as not to overburden myself. I always need to have some kind of project to focus my energy on, someone or something to take care of, and I think this comes from my early years of always having to keep watch and look after everyone else at home.
As an adult, what are the most difficult aspects of your relationship with your mother? Are they completely different from those your struggled with as a child or is it a continuation of the same?
To a large extent, the struggles with my mother are the same as when I was a child. We still have a power struggle where my mother tries to show her capabilities by refusing to take any of my suggestions. Last year, my father passed away, and she became violent. I had to leave town and for the first time in forty years, she was alone. I had to learn how to step back and allow her to make her own mistakes, although I'm always afraid she'll do something to physically harm herself or someone else. I've done everything I can to let doctors and others know what to watch out for. However, the law prevents anyone from intervening until she actually causes harm to herself or someone else.
How do you cope as an adult?
Now that I've moved to a different city, I'm focusing on the self-care I ignored for so long. I got a gym membership and go several times each week. I do yoga and take belly dance lessons. I joined a choir and several social groups here. I live with my sister now, and we get along very well. I don't know where I would be without her love and support.
How has living in the shadow of mental illness made you stronger? Can you share the positives that have emerged for you as a unique individual? Has it shaped your views on motherhood and parenting?
Growing up with a very volatile person has given me great patience when dealing with others. I've always had to figure out the underlying meaning of things--why my mother said and did the things she did--so I'm very attuned to the things people don't say out loud. I'm a caregiver and am very mentally and emotionally strong, and I lend this strength to others who come to me for help.
What are the top three things we can do for children who may be in this lonely quagmire?
Teachers, neighbours, relatives, and anyone who may become aware that something is wrong should report the situation to Children's Aid. Often the other parent is too wrapped up in dealing with the mentally ill parent to give the child the necessary care and attention required. If a social services agency checks in on the family regularly and monitored the children's mental health from inside the home, a lot of trauma can be prevented. I would like to see support groups made available for children of mentally ill parents. Individual counselling is helpful only if the child feels understood, and in my experience, children are not given credit for what they really know. Even now as an adult, I would like to see a support group for adult children of mentally ill parents. This would help us deal with the lingering effects of our childhood.
If you could say anything to the world about being the child of a mentally ill parent, what would it be?
About being a child in the situation: Please make it your business to reach out and find out what's really happening at home. A child in such a situation is very isolated and feels that nobody could ever understand. What is most needed is a healthy adult role model and a place to just be a kid without adult pressures.
You are sharing what I call a situational aberration. Can you first explain what happened?
I burned my family’s house down when I was 18 years old. It was an accident. I’d had too much to drink and decided to cook myself a midnight snack. By the time my father awakened me from my drunken stupor, flames had consumed the kitchen and were billowing along the ceiling of the living room where I’d passed out on the couch while reading the paper. He, my mother and I made it out of the house. My two brothers were sleeping out that night so in the end, no one was hurt. We rebounded from this tragic loss, and as you can imagine, learned a lot along the way. From this aberration; this single traumatic event in my life, I can draw a line to the present and all the blessings I have today. This disruption in my life provided me with the impetus I needed to leave behind the things I knew best and embrace the unknown. To stop clutching and clawing at a future I thought was my destiny, and to let go and allow my destiny find me. I've been lucky.
My family had grown complacent, taking each other and everything for granted. This event served to jar us all into a closer, more appreciative relationship. Now a parent myself, I realize my own parents' perspective on the experience is probably very different, but in the immediate wake of the fire, I went through a pretty fast transition from feeling very bad to feeling lucky.
I was a freshman in college at the time of the fire, enrolled in a premed program and doing well, as usual. But I hated it. I wanted to travel. I wanted real adventure and risk in my life that had been, up until then, pretty darn mundane. My girlfriend was smothering me at a time when girls were falling out of trees. In the midst of my inability to break out of this rut, I became hospitalized with an ulcer at 18.
During my stay in the hospital I had two visitors that, to this day, I credit with shaping the life I now lead:
1) A teacher came to visit and gave me Kerouac's On The Road to read. He could see through to my discontent and I found out, some years later, that he'd decided to see if throwing that grenade into my psyche would spark me to take charge of my life. He had no idea how much it would.
2) The other visitor wasn't technically a visitor, but rather the doctor attending to me. He closed the door as he came into my room on the day I was discharged (after being there a week), and essentially urged me to let go of everything I was hanging onto. To cut all ties with everything weighing on my mind. He said that I should take a year or two to follow my heart.
Are you thankful now that you had that experience? Although it was certainly a negative one, did you come to see value in it and fate at hand?
I'm not so sure how I view the event in terms of fate, because I've always considered myself abundantly blessed when compared to the pain and suffering of so many people. Remember, it was just a house; just some stuff, nobody was hurt, so in my opinion, it was a fortunate inconvenience which eventually became the first in a series of dominoes whose falling led to my escape from the life I was so bored with.
I'm also a proponent of letting my kids take age appropriate risks while providing them with a safe environment to discuss their experience--as long as it's age appropriate (can't stress that enough).
I have four kids, ranging from age 14 to 21. Every one of them was faced with going to a keg party in the woods when they became freshmen in high school and every one of them asked me if they could go. Imagine asking your dad if you could go to a keg party when you were 14. I let them go with the stipulation that I wasn't giving them permission to drink alcohol, just hang out with their friends and check out the scene. I knew this was a time when paths would diverge; when some friends would gravitate to partying and others not. My kids felt empowered and trusted and they found out the keg parties in the woods were muddy, dirty, bug infested affairs with a lot of sloppy, stupid behavior. If I hadn't let them go, they may have glamorized it based on the stories they heard later. As it was, they knew the stories were glamorized because they'd actually seen the events.
In every case, my kids parted ways with some of their grammar school friends and went on to make new friends in their bigger high school environment. They gravitated toward kids with similar interests and values, having made their own decisions to move away from the inappropriately risky behavior of their other friends.
I've been burned by this philosophy too, so it doesn't always have a rosy outcome, but the underlying foundation of self respect I give my kids by trusting them with the truth about my own behavior when I was their ages, and my willingness to let them fall on their face, gives us a safe place to talk it out when all is said and done.
I also take the time to watch and read everything my kids do, and find ways to discuss the risky behavior and poor choices illustrated in popular media and literature. I make a point to emphasize when something is "Hollywood" or when risky behavior is glamorized into something romantic. I've also taken my kids to volunteer at soup kitchens so they can see the impact of substance abuse on otherwise good people and they have relatives who are examples of taking risky behavior to unhealthy extremes.
I'm big on self forgiveness. If I wasn't, I'd have hung myself in the closet a long time ago.
Don't hinge your happiness on the approval of others. Accept responsibility for your own occasional lack of good judgment when you screw up, try hard to learn from it, and move on. It's bound to happen again, so come up with a process for dealing with your own mistakes that enables you to move forward cleansed by the experience, not just tarnished by it.
Why is it okay for the media to poke fun of narcolepsy while medical issues such as breast cancer, autism, diabetes, and rheumatoid arthritis are off limits? In my very first Aberration Nation blog entry, Sleeping with Deuce Bigalow, I reminded readers of the sleepy blond character in the movie, Deuce Bigalow, Male Gigolo. She conked out while bowling, landing prostrate in the lane while her ball rolled on to make a strike. While most can agree that it's important to maintain a sense of humor, striving to understand the underlying truth around us can widen our scope, and lead to positive cultural change.
When I began writing my novel, Aberrations, I suspected that narcolepsy would be a fantastic vehicle for character development. Well, it has certainly developed the character of Sam, a cool university student featured in Ninety Naps a Day, a Cutting Edge documentary that aired recently in the United Kingdom. Sam, who I had the pleasure of meeting earlier this year, has joined the aberration nation! Her story provides important food for thought, not only around narcolepsy, but also on how we can harness the power of first impressions.
Describe narcolepsy for us using your own terms? What is it like and how does it impact your day-to-day life?
The definition of narcolepsy generally begins with, it's a neurological condition most characterized by Excessive Daytime Sleepiness (EDS), but it is so much more. I think it's hard to understand how this impacts daily life until you see it or experience it yourself. Having the disorder means that someone will sleep a lot, which leads to smaller amounts of awake time. I have to prioritize because I only have a small amount of time in which to get things done. The worst symptom I have is cataplexy, which is the sudden and involuntary loss in muscle tone. Basically, it's like being a puppet and suddenly having your strings cut. It comes on without warning, and bumps and bruises aside, it's embarrassing. At 23, I would like to believe I can control my body, but it does what it wants without my say. It's a real knock to my confidence.
How did you come to be diagnosed with narcolepsy?
I was at university studying for my undergraduate law degree. I had already been sleeping a lot for years. I also had cataplexy attacks but didn't know what they were and kept it a secret. I slept through my first year exams, and my parents were angry when I failed the year. When I told them what happened, my mum said, "'Enough is enough!" I didn't want to go to the doctor because I thought I would sound foolish complaining that I sleep a lot. I remember the doctor's exact words: "Sam, I think you have Galineaus Syndrome ... more commonly known as narcolepsy." I laughed. Then he explained the symptoms and they all fit. Next, he explained the tests and the doctors that I had to see, and I cried.
How has having narcolepsy shaped your life in general, including your self esteem and your world view?
Never judge a book by its cover. These words seem to be my mantra. People with narcolepsy and cataplexy are always getting judged in that way and it annoys me. From the outside, we all seem drunk or lazy or uninterested, but on the inside, we're screaming to be understood. People don't understand, or much worse, they just don't care. I know that, like any disorder, others may say, "Oh, it's not that bad," but at the end of the day, their life is not plagued by these symptoms. It's not their life that is getting wasted catching up from an endless desire for sleep.
What do you think are the most common misconceptions about narcolepsy?
The worst misconception is that if we would simply try harder, it won't effect us as badly, or that we are faking. That hurts the most, especially when it comes from someone who is meant to love and care for you. If people on the street don't understand, that isn't a nice experience, but when someone who is meant to be there for you, or is close to you, doesn't take the time to understand -- that bugs me the most. The way that you portrayed the dynamic between Carla and Angel dynamic in your novel--when Carla thinks Angel can get up if she wants to, or that she shouldn't be wasting her days in bed--really hit home for me. At times, there are people in my life who feel the same way and it really gets at me.
What have you learned from having narcolepsy?
I am a lot more understanding and sympathetic. I don't take people at face value because if narcolepsy has taught me anything, it's that what you see--your first impressions--aren't necessarily the truth. You need to know the whole story before you can make a valid judgment on something or someone.
How does narcolepsy make you unique? What are the positive aspects that you value and why?
I am the person I am today because of what I've been through, and for the most part, I like who I am. People who have narcolepsy and can still see the brighter side of life are amazing! I cherish the time I recently spent in Albany with the people from the Narcolepsy Network because those people have survived the worst part of narcolepsy -- coming to terms with it. For the most part, we learn to deal with people a lot better, because we don't judge them based on first impressions. We know there is more to people than just what you see on the outside.
Do you find it difficult to explain narcolepsy to others? How do you handle this?
Yes, absolutely. A lot of people find understanding the symptoms in black and white easy enough, but they have no comprehension of how these effect every day life. They don't understand that having EDS doesn't mean we simply need an extra hour in bed each morning. It means we're late for work or lectures. We don't just have cataplexy, we have an alienating disorder that makes it scary to go out in public. Social events become difficult; experiencing the symptoms in public is humiliating.
What are the top three things we can do for someone with narcolepsy?
1 - Take the time to listen and understand what they are dealing with.
2 - Understand that they have no control over it with or without drugs.
3 – Think before you speak. There are many things you could say to us that you may think are funny but they are humiliating to us.
If you could say anything to the world about your narcolepsy, what would it be?
Be patient with us. We know how are symptoms appear to you. We know that you wish we could wake up and work faster and have a laugh with you but the thing is that we are trying every day to get to where you are. You are lucky that you don't have these symptoms. We don't deserve them but we have them. We know how difficult it may be for people on the outside looking in, but just think how difficult it is not to be able to get away from it. We live with this disorder; we can't just go to sleep at night and forget about it.
I know there are worse disorders people must cope with, and I wish they all had as much help as narcolepsy has had recently in the UK to tell their story. I just hope that in the mean time people can become a bit more patient with each other, and a little more understanding, however naive that hope might be.
If you'd like to share your aberration story, contact me.
Giving the truth, no matter how uncomfortable, painful, or intense it feels at the moment enables you to live with less regret. It’s something to work at. I've used up the first half of my life figuring that out. I know now that I only have one life and it’s getting shorter. Time that used to drag now drags me. It’s flying through my hair and although nice and breezy, it blows my life about, making it more difficult to focus on the details but somehow easier to feel the larger picture. My head is spinning. My kids are growing. My nose is already getting bigger. The complexity of life is expanding like an accordion I don’t know how to play. I just keep staring at it, mesmerized by its engineering. The music it creates and all those dancing monkeys have me spellbound.
Lying takes so many complex forms. I don’t believe in, nor do I choose to live in, a purely black and white world. Life is labyrinthine; that’s the beauty of it. Happiness is multi-faceted, and I’m old enough to know that I may not have every corner covered on any given day, week, or year. Angel admits that she sees the truth, but more times than not, fails to grasp it. She fails to appreciate the unique before it passes away, or beauty in blossom, or gifts that are actually free. I’ll try not to fail at that anymore. I desperately want all that free stuff since what I have to pay for is so damn expensive.
The condition is highly misunderstood and Hollywood hasn’t helped. At least twenty people in San Diego mentioned Deuce Bigalow as their example of how the media and general public perceive them. Some are saddened and some are outraged. In many cases, it kept them from recognizing their condition amidst constant criticism of laziness, avoidance behaviors, and forgetfulness. We all try to have a good sense of humor and so do they. In fact, they gathered for drinks on Saturday night to do skits and poke fun at themselves. But they deal with the effects of excessive daytime sleepiness, cataplexy, hallucinations, and forgetfulness day after day while Hollywood gives the rest of us a few big laughs from time to time. The federal government says that 200,000 Americans suffer from narcolepsy but the folks I spent the weekend with know that the numbers are closer to 1 in 2,000, many undiagnosed.
And what amazing people they are. I met a woman in her sixties who, after a New York theater and modeling career, began medical school at age forty. She’s now a respected Psychiatrist in Greenwich Village. I met Tim Costa, pro Bass Angler, who is committed to a personal awareness campaign. Fellow narcoleptics sat spellbound as he described how constant sleepiness and cataplexy nearly wrecked his marriage and derailed his career. After nearly two difficult years of searching for answers, his life took a positive turn once properly diagnosed and treated. I also met college students struggling to build relationships and stay awake for their education, knowing it’s critical to their future. The number of people who said their general practitioners knew nothing about the condition surprised me. These folks were put through months and sometimes years of unnecessary tests before landing in the sleep specialist’s office.
On my way to fiery San Diego, sitting in a nearly empty airplane, I thought the news of the day would be burning down homes. Instead I found burning down people. I heard story after story of perceived laziness and procrastination, poor school performance, marital collapse, and downright meanness. Many had overcome but some appeared to be barely holding on, so happy to spend one short weekend with people who understood. People who won’t stare if they fall to the ground in a heap, call 911 unnecessarily, or pass judgment if they fall asleep during the keynote address.
Last summer my mother visited from Texas. She looked around and said, “You know, you live in a perfect world here.” We were at the soccer field watching my eight year old practice. It was a beautiful day in the Philly suburbs, breezy and clear. I thought, Yes, I’ve really landed on my feet. This month I’ve had the opportunity to travel to Boston, Shreveport, Louisiana, and San Diego. I’ve seen and heard about disturbing racial issues I thought had been resolved, global-warming temperatures, and smoke overhanging one of the most beautiful cities in the country. In the suburbs, we sometimes believe that all is right with the world. Of course, we have the day-to-day ups and downs of married life, busy schedules, typical teenagers, and the occasional industry reorgs and lays offs that shake us up. But by global standards, our world is as close to perfect as some folks find. It’s easy to forget our personal call to make a difference, however small an action it may be. This month I’ve been reminded that the world isn’t perfect and that I still live in it. I hope my novel will help make a difference.