The Two Kinds of Decay

Mary

Before there was much of an Internet, I wrote a letter to “Confidential Chat” in The Boston Globe saying I would appreciate hearing from others who had Guillain-Barré syndrome or who knew anything about it.

I received fifteen letters in response. Most were handwritten, and a few were typewritten, with plenty of whited-out errors.

A woman named Gayle wrote this to me:

Prior to GBS I was into weightlifting and Truck Driving. I could lift well over 100 lbs. After GBS I couldn’t lift a 2 lb sand bag, it was very discouraging at first but then I kind of got angry and started working really hard to get my self back to where I was prior well I am half the way on the weight lifting, and back to every activity I was in prior, I just don’t have to much strength I get tired out alot quicker, sick alot quicker. It doesn’t happen as quick as you’d like it to, but patients it will. I do remember the one thing that really got me frustrated though, it was the soda cans, I couldn’t open them, for the longest time.

Besides the fifteen letters, I received a mesh rectangle of gray and white embroidery spelling the word JESUS.

In 1999 I found an online bulletin board for people with CIDP Its posts described even the weirdest and rarest symptoms and side effects, and each post had drawn dozens of responses.

Plenty of adults wrote on the board about themselves or their children.

One poster asked whether there were any young adults on the board, people in their teens or twenties. The woman who’d written the post was named Mary, and she was from Dublin, Ireland, and she was twenty-one years old.

And I was twenty-five, and so I wrote back. We wrote to each other almost every day.

Mary wore metal braces on her legs and lived with her mother and saw her neurologist only once a month or so, and it was only then that she could have apheresis. That was the best her country’s health-care system could do for her.

Mary and I exchanged photos many years later, after she’d moved to Spain and then to France, and had undergone apheresis in four countries, and after she’d taken the braces off her legs so she could try pressure stockings instead, and then put the braces back on after the stockings didn’t work, and after she’d dated two Parisian men at once and done mountains of cocaine and got blind drunk in more countries than I have even visited, and I saw, without surprise, that she is an absolute knockout.