I swear this is the last long post I plan to do for quite awhile. But this issue is why I did the other two epic posts. And it ran long.
An old friend of my mom’s contacted her the other day. Since woman knew me as tot, she naturally asked how I was doing. Mom sent a link to one of her wonderfully written posts called You can’t even tell perfect bodies apart. It gives a broad overview of my fun with Guillain-Barre Syndrome.
She was amazed, and she shared the post with her son and sister. They were similarly fascinated. Her son called the story “inspiring.”
To the people who said similar things, please understand that I’m not condemning you. I know that your praise was absolutely sincere, and you meant nothing but the best. That said, it can get awfully tiring to be categorized like this.
I worked on a play in high school called The Plucky and Spunky Show. It was a sardonic take on life with disabilities. Essentially, it explored the “Super Crip” archetype. (Seriously, read that piece, it’s fabulous.)
Essentially, it’s this expectation that people with disabilities should be, well, plucky and spunky. That we have to serve as some kind of role model. That we have to be the Lifetime movie version of ourselves.
I totally get why people want a happy ending. It’s comforting, and it gives hope in case the worst happens to them.
But that’s not our lives. After the credits roll, that person in a wheelchair still has to worry about places that don’t have ramps. Quadriplegics still have to worry about being helped in and out of their chairs, sores from sitting in one spot all day, pneumonia, etc.
Our lives go on, and we don’t necessarily want to be sunshine-y about it. We want to be able to have bad days, break down in frustration. In short, to not be strong.
But healthy people — purely subconsciously, mind you — need to set us up as paragons. They want to think about what we’ve overcome, rather than what we still struggle with.
Why do they need to see us this way? It’s a very natural, very human reaction. I did the same thing when I was healthy and heard about people who had chronic illnesses or who were paralyzed. I’d shake my head in wonder.
The thing is, this line of thinking is based in fear. Fear of being sick. Fear of loved ones getting sick. Fear of all things so purely random and uncontrollable.
So they distance themselves. They set us up as something to be admired. That is, someone with the fortitude, perseverance and an iron will they can’t see themselves having. This creates a perceived gap between us and them.
That gap insulates them from danger. They could never handle what we do, day in and day out. Therefore, they’re safe. Right?
Because God gives us only what He knows we can handle. Right???
If they can just believe that things only happen to people who can deal with this sort of thing, then they’re safe. Because they don’t believe they could.
“You’re so strong”
Again, I hope the people who said this in my previous posts won’t take this personally. It came from a good place, and as already mentioned, I used to do it too.
But the fact was that I wasn’t strong. I threw fits, thrashing my head (the only part I could move at that point) side to side in frustration. I only ever stopped when Mom would start crying. Sometimes not even then.
I often had panic attacks when she’d take a short break to get out of the hospital. When they tried to train me to sit upright more, I freaked the hell out. I only felt safe lying down completely. Just a few degrees upward made me feel vulnerable and terrified.
I also spent as much time as possible sleeping. A drug called Versed would knock me out for about an hour at a time. I could take it every three hours, and, boy oh boy, did I. Eventually, the doctors had to ask me to stop taking it so much.
Strength vs. a lack of options
The point is, I wasn’t strong. I simply had no choice.
I couldn’t speak, therefore couldn’t object to the litany of procedures performed on me. My parents made all the decisions about my care. And it’s not as though I could walk out.
Meanwhile, I was told at least once a day that I was going to get better. In a haze of narcotics, stress and illness, I never considered the option of just giving up.
And so, the next year, I got inordinately frustrated with a classmate. Apparently, having endured a couple of days in jail for a DUI, he’d concluded that if he ever went to prison he’d kill himself.
He probably believed it, too. He must have because he wouldn’t listen to my argument. But he was assessing the situation when he still had a choice. If he went to prison, I feel certain he’d have stayed the course.
See, our bodies have an extraordinary sense of self-preservation. If you try to drown yourself, your body will fight to get back to the surface. If you take a lethal dose of pills, your body will make you throw up. (Though not always enough, unfortunately.)
Even when our minds no longer want to fight, our bodies will stubbornly keep at it.
And since we’re still alive, we have to set about coping with what we’re given. Not always well. I’d venture to say that it’s rare we handle it in a healthy, timely manner. Hence, PTSD, substance abuse, etc.
And given how badly we handle these sorts of traumas — and the fact that we have to live with the aftermath and/or the health conditions every day — it’s quite exhausting to hear how strong we are.
Comedy = tragedy + time
The perspective and grim humor you saw in those posts is the product of a lot of therapy, as well as years of distance from the actual event. Emotionally, I was a mess for years.
To this day, I often flinch or jump if someone touches me unexpectedly. You can imagine what kind of grand romance options that gives Tim.
The fact is that GBS shattered me into a million little pieces. And over the years, I’ve undertaken the gargantuan task of gluing it all back together.
So from a distance you may see a rebuilt whole. But I assure you that the cracks are still there. And that makes the thing more fragile, not stronger. (And, just as with any put-it-together-yourself project, there are pieces leftover that don’t seem to go anywhere.)
What does inspiring mean?
So when my mom sent me an email about those reactions, I replied, “I’m sure her son meant well, but I’d rather be inspired than inspiring. I’m not really sure what it means to be inspiring anyway. Not without trophies or a foundation named after you.”
Folks, you gotta understand: Being inspiring is exhausting. Disabled/sick people don’t want to be shining examples of fortitude. Some days it’s all we can do to exist. Just give us permission to be human. To have good days and bad.
That said, I know people still need comforting narratives. So I’ve come up with a few trophies and foundations to be more inspiring. Without further ado, I present to you:
- The “Abigail Perry Accepting Your Baggage” award
- The “You are More than Your Endurance” ribbon
- The “I Felt Like Crap but Showered Today Anyway” medal
- The “I Didn’t Need a Nap” prize
- The “I Ran More Than One Errand Today” trophy
- The “I’m Far Better at Navigating Insurance than Healthy People” Cross of Honor
- The “Wear Your Scars Proudly” Foundation
- The “Can You Open This for Me?” Scholarship
- The “Apparently, I’m Not Leaving the House Today” Institute
- The “Actually, When Did I Last Leave the House?” Establishment
- The “Too Tired, Let’s Order In” Endowment
- The “I Don’t Feel Good, Can We Reschedule?” Society
- The “I Paid How Much in Co-Pays This Month?” Association
- The “Let’s Just Hide Under the Covers Until It All Goes Away” Club
- The “I’m 37 Years Old, and I Still Get Popcorn, Pretzel and Chocolate Flakes in My Bra” organization.
So to the sick and/or disabled out there — or to their relatives — does people’s praise ever bother you? To healthy people, do you think the above reasons are why you use words like “brave” or “inspiring”?