The Screening Room

Cross-posted from Flawed But Authentic because I am still coughing too hard to write more today.
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My sister Laura had a highly visible illness, multiple sclerosis. She spent the last dozen years of her life in a wheelchair, progressing from a non-powered one at the beginning to one she could steer with her chin at the end because it got so that the only part of her body she could move was her head.

She taught me a lot and I don’t mean in a “What an inspiration!” kind of way. Sure, she inspired me, but probably not any more than I inspired her. It was real life after all, not some made-for-TV movie where everything comes out fine at the end.

She was wicked and sarcastic and funny about her illness at times. She would say “I don’t know why they call it handicapped – it isn’t handy to me!” or “Don’t call me ‘differently abled’ – I prefer the term ‘gimp.’”

Then there were other periods where whole days passed in storms of tears, anger and regret. Being ill, chronically ill, is a grind like the last 5 miles of a marathon, except that it goes on for years, and it isn’t just the sick person that is running. It is the whole family, the whole tired, fragile group of humans surrounding them.

Because the illness was so visible, it acted like a living Rorschach test. I think the most frustrating thing for Laura was that people stopped reacting to her as a person. Because they saw her as a condition, a handicap, they approached her with their emotional baggage out in front of them, leading the way.

Most people wanted to know what she did to end up in a wheelchair.

“They want to know so they can believe it won’t happen to them if they just do everything right,” said Laura. “You should see how scared they are when I tell them I DID do everything right and I STILL ended up like this.”

Many, many, people wanted to “cheer her up” and gave her their fridge-magnet philosophy.
“Remember, God never gives you more than you can handle,” they would chirp. “Everything always works out for the best!”

This was always occasion for us muttering under our breath.

“God never gives you more than you can handle,” we would say. “Until He does.”

Others would grasp her hand, cock their heads to the side and blink back tears, saying “I’ll pray for you”

Prayer is a good thing, but being pitied is always unpleasant. It was only thanks to our mother’s good influence on our upbringing that Laura could be kind and gracious and not tell people where to put their pity.

“You are so brave,” others would say, making it sound like multiple sclerosis was a burning building she had rushed into.

It was fascinating to watch my sister be used as a projection screen for the fears and hopes of random strangers.

They only thought she was handling it because they wanted to believe they would handle it. They only wanted her to be brave because they hoped they would be.

The problem was that she wasn’t a projection screen, she wasn’t an illness. She was a human, a big, messy, fragile, funny, smart, complicated, miraculous human and she deserved to be treated as such.

It’s natural to want to run from our fears, or to try and fix The Bad Thing. But sometimes things can’t be fixed, can’t be outrun. Then it’s just a matter of getting through each day with all the grace, dignity and humor you can muster. Which isn’t very damn much, sometimes, but you do what you can.