The Screening Room
Written by Suet: illness, multiple sclerosis, projection, sue 7 Comments
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 uncomfortable. 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.
March 20th, 2008 at 7:36 pm
I know what it’s like to be on the sidelines of watching of loved one with an illness and I am not saying that so I can say I feel your pain… but I wanted to thank you for putting that into words, it is beautiful, inspiring and truer than anything.
March 20th, 2008 at 9:25 pm
Thank you for that … a real and gritty perspective. one that the ‘tempted to hold their hand and say something pointless’ crowd, of which I am one sometimes, need to hear. i’ve seen the power of simply acknowledging the ‘visibly different’ as a fellow humans, and it’s stunning sometimes.
March 21st, 2008 at 12:04 am
This is a great post. My father and husband are oncologists, and I’ve spent a lot of my life around people dealing with cancer. It’s hard to articulate that not everyone with a disease is a Lifetime Movie hero, they are just people, but this post does it well. Thanks.
March 21st, 2008 at 2:13 pm
Nicely said. Patronization is just denial from another angle.
March 22nd, 2008 at 2:21 pm
“You do what you can” Yeah.
March 23rd, 2008 at 9:37 am
Yes! When my mom was dying there were two things I liked to hear: “This sucks,” and jokes about our Republican governor’s peccadilloes.
March 27th, 2008 at 1:49 am
I am a nurse and have taken care of numerous people with numerous chronic and terminal illnesses. I had 2 very close friends who died of MS in the last 2 years. I miss them! What I miss about them is different for each one- they were individual human beings as different from each other as night is from day. I have seen even nurses do those patronizing things, and worse. Thanks for sharing your perspective as a family member. Helps me to keep my perspective as a nurse.