KosAbility is a community diary series posted at 5 PM ET every Sunday and 8PM ET on Wednesday. It's a gathering place for people living with disabilities, our families and friends, and interested others. Volunteer diarists offer specific knowledge and insight on a topic they know intimately. We invite you to comment on what you've read and/or ask general questions about disabilities, share your own knowledge, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Our diarist this week is indiemcemopants.
Nobody will look at me. I'm invisible.
- Chuck Palahniuk, Invisible Monsters
The easiest way to assure nobody ever notices you is to be different from everyone else. Sure, they'll notice your figure, your body and skin and your disposition, but it doesn't matter. Physical disability makes you one-dimensional, a prop, something to stare at and pity but it makes you useless in every other respect.
In fact, it makes you a hindrance to everyone's daily lives. If you're not in someone's way you're forcing them to confront their mortality by being out in public in their line of sight.
Born in 1984 with spina bifida and hydrocephalus, I've been one of the so-called lucky ones, medically speaking. With the former, most people are born paralyzed from the waist down right off. With both of them, the survival rate is pretty low and there are many complications.
Spina bifida is an open spine. You need surgery to close it. Since I was born in 1984, they were only able to do that surgery in utero after I was born. The doctors told my mother I wouldn't be born alive anyway and if I were I'd die within months. I was born anyway, probably because proving people wrong is ridiculously fun, and they closed up my spine after that. I have tons of scars and my back looked hideous but I was alive.
And I could move my legs. I could walk with crutches around the house, and even short distances without crutches. This was, of course, after much physical therapy and leg strengthening on my part. A lot of pain and struggling.
That by itself is pretty unheard of but coupled with the hydrocephalus, "water on the brain", stuns most doctors I encounter. When you have hydrocephalus, your brain fills with CSF, cerebro spinal fluid, and swells. While this is complementary to my ego, it can be deadly, so it needed operations. They give you a shunt which directs the CSF to abdominal cavities where it can be absorbed. Typically, you need a shunt revision surgery very often. People with hydrocephalus are generally in and out of hospitals yearly. These are serious brain surgeries, but it should be noted they're getting more advanced. They can do them in utero these days.
I've only had one shunt revision and it was a little over a year ago. Mine had worked until then, and it only stopped working due to unforeseen complications from a different surgery.
Like I said, if there were a way to construe anything about my situation as lucky, I'm one of the lucky ones.
When I was fifteen, I had surgery for scoliosis, which had started progressing rather rapidly. After numerous consultations with doctors and spine specialists I was bluntly told that the scoliosis was progressing so quickly that I would fall asleep one night and my organs would finally be crushed. I would suffocate and die in my sleep unless I had surgery.
I know what you're thinking. Dying in your sleep isn't that bad. But still, I had the surgery.
So this doctor person, this spine specialist, had been performing this specific surgery for over twenty years. Two decades. Lots of surgeries. He warned us that there is a three per cent chance I could get paralyzed. That's three out of one hundred surgeries which could result in paralysis. He'd done so many surgeries and had never paralyzed anyone, despite the scant possibility.
Doctors told us not to worry. I'll be fine. Then came the thirteen hour surgery in which I needed so many blood transfusions that I used up the blood I had pre-donated for the surgery and on top of that, used family-donated blood including my notoriously absent biological father's blood.
It was supposed to be a way, way shorter surgery.
I came out of it just fine. That long of a surgery and I was feeling great. Tired and in pain but my legs worked. Then the doctor said he wanted to go back in a few days later, and add a "little piece of hardware" to the top of my spine, because it was so curved he couldn't get to everything. He said there was "no risk" of paralysis. The risk was over. I survived the long ordeal so I was good.
Of course my family consented. It was apparently no big deal.
So that was definitely the surgery which paralyzed me. We should've maybe figured that out at the time but I was too drugged and my parents were too relieved that I'd made it out.
I now realize we should've perhaps chosen the other doctor. Oops.
When they do this surgery - at least when they did it to me - they broke open my rib cage. They removed one of the sides. Also, they had to take out a lung in order to fit the hardware back in. Then after cramming hardware into my open chest and reattaching my lung and my ribcage, they woke me up as soon as possible.
It turns out I had to do painful breathing treatments to keep the lung inflated. So, I woke up, in extreme pain, right? Lots of pain. And instead of getting to rest, I had to immediately start on breathing treatments. Moving this little piece of plastic up a plastic pole-like-breathing treatment thing with just my breath. Given that it was a reattached lung that was pressing against my ribcage, it hurt. A lot.
I remember this of course because I had to be alert enough to do these treatments. And I had to be alert enough to move my legs, which apparently I suddenly lacked the ability to do.
No moving. Just like that. They said it could come back but not after a year. It's been way, way longer than a year.
So, yes. Paralysis. No lawsuit because, in fact, the doctors documented the surgery really well and between that and the release forms we signed, lawyers said we didn't have a case. They said that the need to close off a certain amount of blood vessels is valid and... whatever. Sucks for me that they closed off too many.
So flash forward past the "rehab" hospital I had to attend to learn how to do everything from a chair, flash past trying to console my freaked out family and reassure them I was okay. Flash past my mom finding out she was pregnant the day after I got paralyzed.
Jump past going home, trying to console my family for years. Trying to convince everyone else that it wasn't the end of the world. That I'm okay. Really, I am.
---
The first thing you notice is that people notice you more, but they're scared of it, because it's not you. It's some prop they don't know and they're not curious enough to know. Like a car crash, they can just view you out of the corner of their eyes and make up their own stories. If you catch them they turn away. If you act like you're going to talk to them their eyes widen in a fit of inner panic. You have to tread lightly with your basketcase family, with strangers, with everyone.
And getting disabled wasn't even your fault.
To combat this, I occasionally wear shirts that say "Keep staring I might do a trick" and other such jabs at my peers. Usually it gets red faces but, especially from the younger generation, it gets comments such as "DUDE! That is the most awesome thing I've ever seen!" I still don't understand why older people stare and why people my age stare but 13-17 year olds think I'm awesome for my big "Fuck You's" to everyone on my t-shirts.
Then of course there's the terrorism I inflict upon poor old people at Wal Mart, which is pretty much our only grocery store nearby. I go with my sister sometimes to get my groceries. When it's packed out with people and the number of those staring reaches critical mass, she'll slap me across the face and yell at me, "KEEP UP, RETARD!" to the stunned faces of the onlookers. Sometimes it's, "God, mom should have aborted you!" So fun.
I'm invisible until I scare people so much that they have to wake up. They have to see me as more than just a caricature of your stereotypical disabled person, whatever they think it means.
Most of the time people express pity. They're always sorry. They always see me as less than themselves. I hate pity. Empathy is much more difficult, I know, but it is better for you. When you pity someone, what you're thinking is "this could never happen to me, they aren't as good as I am" and that's not true. This could happen to you, your kids, anyone you know. Why not try to understand it?
This is at the root of it. I know it is, yet I still can't shake the fact that having no friends really sucks, even if it is based on everyone else's insecurities. Nobody wants to face the thought that this could be them. This could be someone they love.
I had a friend once who stopped being my friend after I got paralyzed because it made him question his faith in God, something I never did. He put all of his religious insecurities on me and couldn't bear to be around me anymore. I'm a constant reminder that the world sucks and that maybe there's not something better. Maybe it only gets worse. I don't know why, but nobody looks at that and tries to make anything better. They just pretend I don't exist and everything is fine.
And I end up being unable to educate anyone, friendless, bored and depressed. Go my life!
---
All I want is somebody to ask me what happened. Then, I'll get on with my life.
- Chuck Palahniuk, Invisible Monsters
I don't want to speak for every disabled person alive today but please, instead of staring at a disabled person and making up your own, admittedly likely much more exciting story, go ask them what happened. It at least works for me. In the ten years since I've been paralyzed I've had exactly one person come up to me and ask why I'm in a wheelchair and it was the best day ever.
Ask questions, get to know people. It's how you would treat anyone else. Don't tiptoe around someone's obvious disability or ignore it. Don't pity them. I wouldn't advise going up to someone and saying "Hey armless dude, wanna go see a meatgrinder? I always wondered how those work" but asking questions is fine. It's kinda weird not to. It's one thing when people I've known have forgotten, mid-conversation, that I'm disabled, but it's something else to never ask.
It feels good when people want to know you, and when they go beyond their misconceptions about what they see. It's intensely hurtful when the opposite happens. I've been more stressed and more depressed (I was diagnosed with depression, I don't use it in the "waahhh I broke a nail" sort of way) over the fact that I get ignored-by-not-being-ignored than anything else in my life. It is traumatic. It is tiring. If there's one thing you take away from this, don't ever stare at a disabled person. We're just like you.
Well, I could beat you in races. And I always have a seat wherever I go. And an up-close parking spot. But other than that, just like you, yep.
UPDATE by Fr. John-Mark (jgilhousen): I inadvertently published this diary three full hours ahead of schedule. I'm sorry for the inconvenience to our "regulars." Please help me mitigate this by reccing up this diary, so that it is easier for people who expected it to be published later can find it. Besides, I think you'll agree that it deserves the extra attention.