1980 30 Rock 70th anniversary 9/11 aberration aberration nation aberration story Aberrations abortion absinthe abuse acceptance accident Acting actors ADD addiction ADHD adolescents adoptee adoption adult advocacy Afganistan Aikido Air Force Alan Cummings Alan Katz Alan Shipnuck alcoholic alcoholism Algis Budrys Allen Koszowski Allison Gilbert American Pain Society American relgion amputee And Tango Makes Three angelique price Anneli Rufus anorexia Antwone Fisher Area 23 Area 23 Gallery army art art interview art merged with painting art movements art of the nude art shows in Shreveport Art Talk artist artpop arts asperger's syndrome atheism attitude austin author author interview autisitc autism. aberration story autism. aberrations Avalon Books awareness axs.tv baby baby momma Backseat Saints Bad Blake bantam barebrush basketball Becky Hammon Behance belly dancing Beyond a Reasonable Doubt Bible Belt bicycles bipolar bipolar disorder bite size life Blonde Ambition blue man group Bob Hogge body image book Book Expo America book review book trailer Boundaries breast cancer Bridget Asher Brokeback Mountain Buckhead Buddha building blueprints for better girls bulimia bullying By Whose Hand Caesar Augustus Films Calvet Calvet movie camping cancer cartoonist celebrity censorship Centerpeices Centerpieces chairs chang and eng Charlaine Harris chasing boys Chasity Bono Chelsea Cher Chick Lit child children Chris Cleave Chris Tatevosian chrisitanity Christian christianity Christine A. Baker Christine Baker Christine Havrilla chronic illness chronic pain Cirque Du Freak claudia furlani coaching contemporary art controlled substances corporate america Cougar Town Courtney Cox Crazy Heart creation creatives creativitity creativity Cyril Connolly Da Vinci Code dan rather darin strauss Dario Posado dark fiction dark side Darren Shan David Christian David H. Burton DeAnna Cameron Deanna Nolan death deceased parents Dedication Deep South defying gravity Denzel Washington deployment depression Deuce Bigalow diets director disabilities disabled divorce documentary dominic allen Douglas Morton Douglas Preston Down's Syndrome Downtown Shreveport Dragonlance Dragons drive drug abuse Dust dysfunctional family Earth Matter eating disorders Ed McCormack editor egon schiele Elissa Schappell Ellen Degeneres Emily Lisker Endtime Magazine Eric Gipson Erich Fromm Esther Barend eugene mcbride Evelyne Tannehill Excercist expression expressionism Facebook failure faith family fantasy art feature film fiction figurative figurative art figurative art collectors figurative expressionism figurative expressionism contemporary figurative expressionism definition figurative expressionist film filmmaker Finding Fish fine art Finnian's Journey fire Flea Frank Conroy Fredric Almond functional family fundamentalist religion Gallery Gallery and Studio Gaming Gary Powell gay gay adoption gay issues gender George Bailey Georgia German Germany Bonell Gideon's Sword Gina Mollicone-Long Glamour glee Glenn Beck God God No God's in Alabama Godz Taylor Grand Central Grand Central Publishing grandparents graphic artist Greenleaf Book Group Greenspan grief growing up Guggenheim Haiti half a life happiness Harlan Ellison hero High Przekop. writing high school Hodgkin's Lymphoma Holy Blood Holy Grail homeless homelessness hope horror How to Tie a Tie Hrag vartanian human brain development human nature Hurricane Hotel hydrocephalus hyperallergic hyperallergic.com identity Ileen Skeen illness falsification illustrator imperfect endings Incendiary Incognito Witch individuality intentional practice interivew interview Interviews Iowa Writer's Workshop Iraq Irvin Baxter ishiguro Israel It's a wonderful life James Michener Jean Marc Calvet Jeff Bridges Jeff Goins Jennifer Bolen Jesus Christ of Latter-day Saints Jesus Take the Wheel Jim Shepard Jimmy Breslin John Cafferty John currin John Gilstrap john K. Lawson Joshilyn Jackson journey Joyce Dibona Julianna Baggott Julie Gregory Justin Bieber Justin Bua kandinsky Karin Perez Karina Sala kathy Ostman-Magnusen Katie Holmes Kelly Brorsheim Kevin O'Hanlon kids Kimmelman kristen stewart LA large families Larry Brubaker Laura Shumaker lesbian LGBT lies life tabernacle Liimu McGill Lina Bonell Lincoln Child Linda Wisniewski Link Lisa Morguess Lisa See Little Bee Lizzie Miller loneliness loner looking for love Lori McKenney Los Angeles losing my religion lost pregnancy Lou Patrou Louisiana Louisiana art Love Love Your Body Love Your Life Lovestruck Lovestuck Summer Luiz Cavalli madness Making Ideas Happen Malcolm Gladwell man in woman's body manic depression maranatha school marc zegans Margaret Weis mari yamagiwa Marina Hadley Marisa Acocella Marchetto Mark Twain mark zuckerberg marker art marriage Marya Hornbacher marya hornbacker Master Innovation Group materialism Max's Kansas City maya angelou meaning Melissa Walker memoir mental health mental illness Miami Mice don't taste like chicken Michael Bamberger Michael Chabon Michael Cunningham Michael Seif Michael Smerconish Micheal Jordan mid-life crises middle grade fiction midlife Mikic Miley Cyrus military ministry Minya miscarriage mixed media Mojo Perry Molly Kellogg Monkdogz monkdogz urban art motherhood mothers motivation movie review MS MTV multiple sclerosis multitalent Munchausen by proxy Museum of Natural History music musicians muslim My Losing Season My Summer Friend mysteries of the universe N. E. Bode narcolepsy Narcolepsy network narcotics nature Navy never let me go New Jersey New Orleans New York City New York Times News Newsweek Ninety Naps a Day No War Norman Lear norsworthy gallery novel novels nude art nudes NYC o.y.l. Obama obsession obsessive compulsive disorder OCD Off kilter opioids Oprah Oprah Magazine Oprah Winfrey orphan Other Outliers painting Parentless Parents Paris Party of One passion pastor Pat Conroy Patti LaBelle Pearl Lounge Pema Chodron penelope Penelope Academy of Art University Penelope Przekop Penelope Przekop. writing Penelope Przekop. writing life Penn and Teller Penn Jillette perfection peripheral arterial disease phantom pain Philadelphia photography phychology Phyllis Whitney picasso Please Love Me plexiglas plus size models poem poetry Politics pregnancy Print Magazine Procession of the Dead producer progressive Prophetess Przekop przekop. writing psychedelic Psychology Today psychotic break publishing pulmonary fibrosis Purple Heart purpose of art PWN queer quilting Quote Quotes R. L. Stine R.E.M. fundamentalist rage Randy Thurman rape Raul Rudd reading reality Red Hot Chili Peppers relationships relativity relevance relgion religilous Religion religious review Reviews Revolutionary Road Richard Yates Robert Trudeau robert zemeckis rock Rock and roll Rock Band Rogue Space roller coasters Rothko Rouge Space same-sex parents San Diego Sandra Carey Cody Sandro La Ferla Santiago Betancur Sarah Maria Scarred for Life Sci-port science fiction scoliosis Scott Belsky scott heydt screenwriter sculpture Sebastien Aurillon second coming of Christ selective mutism Selective Mutism Group SETI sex change Shanghai Girls Sheffield film festival Sheila Parr Sheila Wolk Shreveport Shreveport Art Shreveport artist Sickened Simon Cowell simon schuster singer single parenting sleep disorders sleepiness Soho Soho artists solo show songwriter Sonny Sookie Stackhouse Sophie Kinsella soul southern southern culture spanish special education spina bifida sports art Sri Nisargadatta Maharaj stabbed Stephen King stillborn stubborn teen support survey Take this blog and shove it talent tales from the script Taylor Dynasty teaching teen poetry teen runaway teen stories teen suicide teenagers teens television Teresa Lauer Terri Cheney The Art of Loving The Belly Dancer The Center of Winter The Children's Aid Society The Climb The Mentor The Milwaukees The Netherlands The New York Pearl Lounge The New Yorker the provence cure for the brokenhearted The Second Coming The Swinger therapy Think or Sink Tiger Woods tim harakal tin house TM Muzik Tom Grimes Toni Morrison tough love Tracy J. Thomas transgendered tribulation True Blood truth twenty somethings Twin Towers two dads two mothers Tyrone Patrick Fehey unresolved issues urban art van gogh vanity fair veterans vietnam war vincent van gogh violence Violet by Design voice Waiora war Washington wasted water What Dat Nation Where do I find art in Shreveport Why She Plays Wicked Wizard of Oz WNBA women's basketball World War II writer writer's life writers writing YA Year One young love young person youth youth sports Zoe Fitzgerald Carter
6527212 September 21, 2009

Sleepy Stu's Bite Size Life: An Aberration Story

What happened to me sucked and it hurts like hell to think about.

I didn't want to get out of bed this morning in the worst kind of way; however, once I forced myself up, life kicked in with all its amazing challenges and possibilities. Brewing coffee and chirping birds called as the morning sun filtered into my life. My eyelids grew less heavy as my forty-something joints loosened. I was rarin' to go.

Well, what if life just kicked instead of kicking in? What if the birds, coffee, and sun had absolutely no role in my sleep cycle? What if I never fully woke up? What if, over time, my perspective of wakefulness and dreaming blended until my memories were lost in a haze of uncertainty? And what if the person I loved most thought I was lazy, irresponsible, or mentally ill? Have you ever wondered what it might be like for those who scratch and claw just to get a bite size portion of what most of us simply call being awake?

I've just described a plausible case of narcolepsy, the plight of a Person With Narcolepsy (PWN). I've met quite a few PWNs since writing Aberrations. They are some of the most caring, understanding, and unselfish folks I've ever met. They make up a loving aberration nation all their own. In fact, they are folks who inspired me to create this blog.

As I researched narcolepsy and wrote Aberrations, I realized more than ever how the unique hardships, afflictions, and senseless painful episodes in our lives bring out similar emotions in us all. Many of the people I've met with narcolepsy have an amazing ability to accept and identify with anyone who has ever been stuck inside a home, place, or situation where they were mistreated, abused, discriminated against, or held back. (Interestingly, the topic of my latest painting.)

My guest today, Stu, is a highly creative PWN. He's a great advocate for narcolepsy, and has created a new online community, Bite Size Life, specifically for PWNs and those who support them. His goal is to foster greater understanding and compassion while also providing a unique chat environment for PWNs. In Stu's own words, Bite Size Life is for people who "get it." He's mining his aberration and finding amazing things, including creative advantages and ideas. Stu may live a bite size life but he's finding his own way to make it BIG.

You have narcolepsy. When were you diagnosed and how has it generally changed your life?

I was diagnosed about five years ago. When I was first diagnosed I went through a stage that I would later find common among narcoleptics, which is, “Well, now I have to deal with this, and I can expect to live with this nemesis that will slowly chip away at my core.”

Fact is just because a guy in a white coat handed me a piece of paper that says I have narcolepsy doesn’t change anything at all! The diagnosis was actually a blessing because from that point on I knew who (or what) the nemesis was.

Part of my life started after I got diagnosed, and I’ve heard a lot of similar testimonies.

You are a highly creative guy. Can you tell us about some of the things you're into?

My first love will always be music. I’m convinced I would have found a gun to swallow had I not had music. I had a sixth grade social studies teacher who taught me how to play, and without knowing it, I’m sure he saved my life. He’s still a very dear friend to me, and I owe him big time. When I tell him this he always graciously says “Well, Stu…Pay it forward.”

Along with the music came songwriting. During a part of my life when I was mis-diagnosed with Bipolar Disorder, I started to find words coming from the top of my head that were narrating my situation. They always came with a melody. I eventually started writing them down.

Some people think I’m joking about this, but I am seriously working on…"Narcolepsy: The Musical”. After being so serious about the condition, part of me feels compelled to create something entertaining that’s not so “woe is me” to explain the condition. We live in an age when everyone hurts about something, so it becomes white noise.

Does narcolepsy somehow contribute to your creativity, your desire to create, or your energy around it? If so, can you explain?

Yes, it does. Shortly after my Dad passed away I had a hypnogogic hallucination about my Mom and the house she was living in. A lot of that experience was me expressing anger that I wasn’t being heard and yelling at my Mom about the outcome. I wrote a song “Little Monster.” Most of the lyrics are what I was yelling at her.

I don’t feel the same way now but I can’t change the lyrics. They are what I felt at the time. Now the lyrics humble me because every time I play it I remind myself that in acting like a spoiled brat, I was being a little monster.

Artist tend to write what they know and experience. The experiences narcoleptics go through on a daily basis is a muse that can either destroy us or strengthen us.

You seem like a highly positive person. Were you always this way?

I think I’ve always come across as the happy guy, but even now I’m known to stuff down some pretty dark stuff.

Some narcoleptics feel a sense of relief from sharing a testimony. I don’t. What happened to me sucked and it hurts like hell to think about. It hurts to even talk about. I don’t care how it may help others, I can’t do it. It literally screws with my health. I’m okay with bits and pieces when I‘m talking to other narcoleptics as a reference to whom I can relate. However, I’m a better listener when I don't have to relive my own excruciating moments.

I’m not alone on this either. Many of us can’t relive the past because it already beat us up once. With Bite Size Life, I’m hoping we can realize and share these commonalities without trying to one up each other with dueling crappy pasts.

My novel, Aberrations, includes an underlying message that whether we're healthy or not, life is worth embracing. No matter who we are, life isn't perfect so let's not let the negatives bring us down. Can you relate to this?

I think so but my approach is a glass is half full view. For me, I’ve found the positives bring us up, so chase them (opposed to not letting the negatives bringing us down). They may sound the same, but I’ve found them to be VERY different. Something clicked in my head when I started to think this way.

I was moved by the book The Secret and I started using some of its philosophies. Some of its ideas are completely useless. I don’t think the universe serves as our sugar-daddy to give us whatever we ask for. I think constantly thinking about (and being thankful for) what we want brings us to what we want on a molecular level.

The core idea changed my outlook. When I replaced my worry about what might crush me with thoughts about what I wanted in a future that hasn’t yet been written--life changed for me big time.

I have no doubt that what we think about, we bring about.

You do quite a bit of advocacy work for narcolepsy. How did this start and where has it led?

It started before I was diagnosed. When I was fried out of my brain on anti-psychotics, so many doctors warned me that a sudden change would/could leave me in horrible shape. I finally realized that not much worse could happen. The idea of someone else experiencing this sparked something within me, even before I knew what the name of my enemy was.

Now I’m working on an online community for narcoleptics and the people around them who have been messed over by narcolepsy. I don’t have a forum, and quite possibly never will. I’ve been running Bite Size Life for almost two years now. It started as my personal blog, but while being exposed to more narcoleptics, it became obvious to me that narcoleptics benefit from blogging. Besides the planned chats, we offer free blogs to narcoleptics with sleep disorders.

You've recently parted ways with the Narcolepsy Network, after several years of being their web guru. What's next for you?

I need to get in touch with people on a human level again. I want to help on a level that I can see the faces of people. I hate talking on the phone because the human element of seeing someone’s face seems like a void at times.

There were some rumors that I starting a sort of rival forum. I get a laugh about how organizations think there’s a competition to help others online, as if they are fighting for the eyeball time of people that are looking for help. I've already created a good forum. I don’t have the energy to top what I've already achieved. It couldn’t be done without the help of the moderators any way. They are an amazing group who will always be in my prayers.

I know for myself, the challenge isn’t to top what was already done, but to offer support to PWNs in a new and meaningful way.

Many people still misunderstand narcolepsy. What are the top three facts about it that people should know?

I personally got sick of the usual clichés…life doesn’t end with a diagnosiswe all have our cards life deals us…after awhile these all sound like the adults in the Charlie Brown specials “blahblahwhawhawhablah”

"For the love of God, tell me what no one else will!"

* People with M.D. tagged to the end of their name can do more damage than good, and too many of them know squat about the condition.

* The people in your life that “don’t get it” may never change. Quite often it’s the people closest to us.

* You can’t base your future on your past. You’ve already seen your past. Your future is a book of blank pages. It's waiting for you to write your own story.

Do you have a life motto, and if so, what is it and why?

He who fights with monsters might take care lest he thereby become a monster. And if you gaze for long into an abyss, the abyss gazes also into you. -Friedrich Nietzsche

Nietzsche nailed it. If we’re not careful we can turn into the very enemy we hate. We learn how to hurt by those who hurt us, and true personal growth only happens when we figure out how better off these weapons are left alone.


Related Aberration Nation Posts:

Sleeping with Deuce Bigalow
Living with Narcolepsy: An Aberration Story

Read more →