Multiple sclerosis is a terrible way to die.
Sonya was Dad’s second wife. They married a couple of years after my parents’ divorce. I can’t say that we were very close, really, because of the nature of that relationship and the fact that I moved away soon after they were married. But I never had any reason not to like her. She was loud and silly and kind. To my eyes (and ears) she was the stereotypical Southern American, and I couldn’t help but poke fun at her American flag quilts, gun-totin’ relatives, collectible figurines, and Arkansas accent. She didn’t mind, and sometimes even cranked her drawl up a notch just for me. She seemed to make Dad happy. I’m pretty sure she was the one picking out Christmas presents for me and my siblings the whole time she and Dad were together, and she always chose better than Dad would have on his own.
I never knew her without her wheelchair. Her MS had already knocked her off her feet by the time we met, but she was tough and optimistic and open to new treatments. She made appointments with the best specialists at the Montreal Neurological Institute. She tried pills and injections, and clinical trials for new experimental medications. Both she and Dad kept up on the latest research online so they could point at a new study and ask the doctors if there was any hope there. I saw Sonya puff up from steroid treatments, and then shrink away as eating became difficult. She started visiting the hospital more often as her condition worsened. Despite regular physical therapy, her body got weaker and weaker, until even a wheelchair was too much for her. She spent days and nights in a hospital bed in her living room, watching TV with a pile of cats on her legs. Eventually, she deteriorated enough to need full-time care, and so Dad reluctantly found her a spot in a long-term-care facility.
She died yesterday.
I got to visit her a few weeks before the end. Her pillow, embroidered with “An American Princess Sleeps Here,” was carefully propped up to keep her head from dropping to the sides. She wore new PJs, and hugged a plush cat doll to her side. That is, Dad had placed the cat by her hip and put her arm over it – she no longer had any control of her limbs. She smiled when she saw me, and opened her mouth to speak, but no sound came out. Just a hint of breath. It was heartbreaking to see her reduced to a smile and a whisper.
Multiple sclerosis is a disease of the central nervous system, and the central nervous system controls everything. That makes MS a progressive, debilitating disease of the whole body.
Your nerve cells need a protective layer around the long axons they use like telephone wires to get messages to their neighbors. MS eats away at that layer, leaving the lines weak, frayed, and full of static. Depending on where the damage begins, your disease may manifest itself in blurred or double vision. You may stumble as you lose your sense of balance and develop involuntary spasms in your legs. You may feel numbness in your hands, and find yourself dropping things as you lose your dexterity. Maybe you need a cane at first, but over the years you may move to a walker as your legs get weaker. Then a wheelchair when they stop working entirely. You might lose conscious control of your bodily functions, depending on a caregiver to keep you comfortable with diapers and catheters. Solid food can become a choking hazard as your throat muscles stop receiving commands, so you may need a liquid diet or a feeding tube. Your voice becomes a whisper as your vocal cords shut down. You’re trapped in a body that can’t hear your brain.
They’re not sure what causes it, or why some people progress so much more rapidly than others. There isn’t a cure yet, and most of the treatments only offer short-term relief of some of the symptoms. MS is a mystery, and it’s terrifying.
As I sit around today, waiting for news about funeral arrangements for Sonya and consoling Dad over the phone, I’m making a donation to the National Multiple Sclerosis Society in Sonya’s memory. I can’t stop MS from squeezing the life out of people. But someone out there will find a way someday, and I want to help them get there.