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.
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 diagnosis…we 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.
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.
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