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When I See Other People in My Life Joining the Disability Community

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Several years ago I took myself off Facebook. A combination of the inevitable slew of wedding pics and the fact that my life was turning out like nothing I had planned drove me off social media. The production of my most recent play drove me back on. The theatre’s artistic director strongly encouraged all of us involved in the production to push the social media front, and since I was playwright and lead actor, I had no excuse. It took me three tries to remember my Facebook password. I gritted my teeth, and I was in.

Yes, there were slews of people who had gotten married during my four-year hiatus. A few of them had even gotten married and divorced at astonishing speed. My heart went out to them. Cute baby pictures and ultrasound images now littered my feed, and I found that I didn’t have pangs of jealously but twinges of joy as I saw old school friends find a kind of love they never knew existed. (That, and I figured these friends were more exhausted than they ever thought possible, so really how could I ever be jealous now?) But then the unthinkable happened.

We just found out that our baby has half a heart. We won’t know the prognosis until after she is born.

Back at the hospital with Sam today after another gand mal seizure. Still can’t find the reason.

Apparently I have lupus. No more hoping I’ll feel better someday. This is life now.

Anybody out there know what Dandy Walker Syndrome is? We really need hope…

It’s official, I have MS.

I used to think, as silly as it seems now, that I filled a quota. You know the statistics: One in X children are born with a disability. Such and such percentage of the population considers themselves to be physically disabled. Illness X affects how ever many people a year. Sure, the numbers change but the numbers and stats all give the same impression.

A certain quota needs to be met. Society gets a set number of disabled people and the rest of us are “safe.”

In my logical brain, I know this is not how statistics work. I am fully aware that numbers don’t play nicely, and that at the end of the day any figure we come up with is pretty much guesswork.

For the most part, people I knew didn’t have new confrontations with disability as I was growing up. My disabled friends, even those who acquired their disabilities later in life, were all disabled by the time we met. Many times that’s how we met, at some camp for special needs children, or playing wheelchair basketball on a Saturday morning. Sure, my best friend’s grandpa started using an oxygen tank when his lungs gave way, and his mobility declined as he approached his end. It made us sad to watch, but he was old, dying and losing mobility at that age is just another part of life.

It never occurred to me that my friends at school could become disabled while we were still relatively young. The idea that my cousin would get breast cancer, the high school cheerleader would have a daughter with Down syndrome, the girl next to me in health class would get Ehlers-Danlos syndrome, the friends of friends who ended up together after college would have a disabled child was never on my radar. I never dreamed that a friend who used to help me get out of bed in the morning would someday deal with severe vertigo and spend days on end in bed herself. And I’m sure these life changes were never in their plans either. While I refuse to see disability and chronic illness as inherently a tragedy, I feel heartbroken for my friends who have let go of plans, dreams, and expectations because of a disability or illness.

One day a friend from college called me. After years of not talking, we were eager to catch up. Talking about another close friend of ours she asked me: “Did you know about her first baby?”

“What do you mean her first baby? Did she have a kid without telling me about it?”

“Well, kind of.”

The answer was yes. Our friend had a premature baby. He lived for two hours and his parents held him that entire time, fitting a lifetime of love into one hundred and twenty minutes. Born so early, there was nothing the doctors could do to make him survive the world.

I dropped the phone and collapsed on the floor sobbing when I heard the news. It shook me to the core in a way I never thought possible. My heart breaks with each of these stories I hear, and in a very weird way, I feel like I’ve failed.

Although no one actually told me I was some sort of statistical sacrificial lamb, keeping everyone else safe from disability, I believed I was. My friends already had disability touch their lives, through me. Like some sort of talisman, I thought that connection should be enough to keep them safe for several decades.

When we are young, we are told over and over again to enjoy our bodies and their amazing physical capacity. Someday, our elders tell us, our bodies will be much less cooperative. Over the past few years I have spent numerous Christmases sitting around a table with a friend as his elderly father whined on and on about no longer being able to run up a fight of stairs properly. He wanted to be shipped off to Dignitas. I wanted to throw the Christmas turkey in his face.

At 32 the chronic aches and pains are already beginning to creep up on me, but for the most part, I’ve always assumed I would get off easy when it came to aging. I already know how it feels to deal with challenges and limitations. That’s just life.

I was in no way prepared to watch the people I grew up with, the friends who supported me, facing these issues for themselves or their children.

When I see their frustrations online, the pain meds that aren’t working right, the pig-headed insurers who come up every trick in the book imaginable to avoid paying for life-saving surgery, the schools who still insist on doing what’s easiest for them and not what’s best for the child, it drives me to weep. My family fought these same battles decades ago, in hopes that the fight would be over by now.

Seeing my friends face these obstacles now inevitably rips my heart out, but it also forces me to fight harder, to refuse to give up, whereas a few years ago I would simply back down and call it “grace.” I push for disability rights and justice more now because I know some of the people who are coming along behind me, people who don’t have a lifetime of stamina and endurance as I do. Many were lulled into the belief that the safety nets were there, the system worked, and that by 2016 our society had learned to deal with with one of the most basic human conditions: disability. Now they know the truth, and they need my support more than ever.

I get onto Facebook and social media now, for the most part, without dread. Sure, there are those days where my girlfriends post sappy engagement photos and I can’t help but think of Gollum as they flaunt their rings, but usually I can look past that. I’m looking for updates; first steps at the age of 6; pain-free days for the first time in months; children with disabilities achieving milestones; and friends who are just starting to let go of their false sense of entitlement to having a “normal” life.

I log on now, looking for who I can encourage, who I can love, and who is finding that fighting their body and the system is a nearly impossible war to wage.

And when the time comes, I will post photos from opening nights, articles published, good news and wedding announcements, even though I swore I never would be like that. You can call my a hypocrite or Gollum all you want. I won’t mind.

Because numbers may give us all a false sense of comfort, but when the numbers don’t work out in your favor, it’s often the stories from people you love that give you the strength to go on.

Originally published: September 2, 2016
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