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Reclaiming body acceptance: a disability perspective

November 4, 2010

"I used to be a morning person, and now I have narcolepsy." Intaglio print, 2008.

Becky wrote a really excellent piece about body acceptance as a process a few posts ago.  I thought I would contribute my perspective as a person with a disability.

First, a little bit about me.  I have narcolepsy.  I have narcolepsy and it is really bad.  It’s ok with medication, but I am still nowhere near normal levels of wakefulness.  I read a doctor’s analogy that said narcolepsy is sort of like a normal person getting a maximum of 3 to 4 hours of sleep every night for a year.  Narcolepsy is commonly mistaken for poor sleep habits, recreational drug use, and laziness.  I have fallen asleep during exams in college and I once fell asleep while riding my bike.  I was diagnosed after my first year in college, and it took a few years of it getting steadily worse to start thinking about it as a disability.

Before I even saw the diagram about the continuing process of recovery, I had talked to some of my disabled friends about how acceptance comes in waves.  Some of the time I feel so good.  I am a whole person.  There is a part of my brain entirely out of my control, but that is part of who I am.  And there are other days when it is just the hardest thing ever.  The kinds of days where I can’t stay awake.  I miss appointments and I am always late for class.  People look at me like I am an inconsiderate failure, like I am deliberately wasting their time by not being able to control the part of my brain that keeps me awake.  Sometimes you just have to wait out the bad times to get to the good times, but sometimes you have to really work for it.

I encourage you to watch the first few minutes of Aimee Mullins’ most recent TED talk where she reads the thesaurus entry for disabled.  It is heartbreaking.  When I first watched it, those words just cut right through me.  I looked it up today on thesaurus.com and this is what I found:

disabled (adj.) – broken-down, confined, decrepit, disarmed, hamstrung, handicapped, helpless, hurt, incapable, infirm, laid-up, lame, maimed, out-of-action, out-of-commission, paralyzed, powerless, run-down, sidelined, stalled, weakened, worn-out, wounded, wrecked.  Ant: able, healthy.

It hurt me because on bad days that is exactly how I feel.  Powerless, incapable, weak.  Those days I contemplate what my life would be like without this huge burden.  If I could get rid of it and be normal, would I?  It’s hard because I can remember a time before I was narcoleptic.  I used to be a morning person!  I can remember normal wakefulness, which is something I will never again achieve.  It’s days like that when I feel so guilty because I missed a meeting or slept through a class.  I feel terrible because not only did I miss out on something, but every time it happens I feel like someone loses a little faith in me.  But this is my body.  Sometimes I try to accept my body in spite of my disability, but that’s just silly.  Narcolepsy isn’t something I need to accommodate in order to resume living my life.  It is part of my life and it is part of my struggle with body acceptance.  Accepting my body and my life is going to be a one shot deal.  It means constantly thinking about myself and my limits, and not moving past them but moving with them.

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4 Comments leave one →
  1. November 5, 2010 5:15 AM

    This is such a powerful post. Thank you so much for sharing.

  2. konkonsn permalink
    November 8, 2010 2:31 PM

    I don’t have a lot of friends with disabilities, specifically mental disabilities, so this post helps me out a lot. I have OCD/GAD, which has been under treatment for nearly four years. And when I first heard, “You won’t solve this in a day,” or “We don’t cure, we manage,” I was like, “Oh, ok, so I’ll be back to ‘normal’ in a year or so.” And new problems just kept coming up every year, and then, like you said, there are days when it’s like, “Woo hoo! I’ve got OCD, but you know what, that’s just who I am, and it’s cool that I overthink things because that makes me analytical.” And then there are days where I just want to throw things at a wall because I’m so damn frustrated this isn’t solved and it never really will be.

    It’s always nice to know you’re not the only one going through these cycles. Thanks for sharing.

  3. not about OCD permalink
    December 30, 2012 2:58 PM

    I have been diagnosed with OCD 15 years ago. using all the tools available. life only gets better. 2 years ago i had severe car accident and it is miracle i am a live. I am thrilled. however the car wreak has increased my disability to OCD combined with being a paraplegic and the 1% of horrible case of neuropathy that the drs cannot eliminate that will stop you in your tracks,. there are days i can only take it 5minutes at a time and pray. i am reduces to a wheelchair that increase the entire dynamic of being able to make the 5 minutes at time. being a paraplegic, you literally have to relearn how to do almost everything how your body has to function. all this being said i would love just have my OCD disability. my family does not accept OCD and surely does not encourage,offer any assistance with my added disability. It is the big white elephant under the rug. i have had multi dialogues with my family and the family dialogues with the drs about the huge change both of my parents are deadi . I feel like I am in a prison at best. continued work with doctors, meditation, reading and lots of praying. I do have good days with huge limitations finally have met a gentleman from kenya at the end of our conversation he said “pray for what you have and what don’t have”

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