The clinical psychologist perched on the edge of her chair at the foot of my hospital bed. She glanced through my intake information sheet detailing my answers to previously asked questions: Are you depressed? Ever thought of harming yourself? I guess there was a good reason for asking … I was lying in the bed paralyzed, after all. Finally, she asked, "What is your rehabilitation goal while you're a patient here?" I thought for a moment, and said that with therapy and time, I expected 100 percent restoration of the use of my body. She pursed her lips, tapped her pen and said, "One hundred percent? Don't you think that might be … a little … unrealistic?"
"Oh, lady," I thought, "it is so on."
The trouble started with numbness in my hands. I am not a stomach sleeper, so I hadn't slept on them, but nonetheless, I shook my hands back and forth for 30 minutes as if to dismiss the last vestiges of dreams. Suspecting a neurological problem, I presented myself to the emergency-room doctor, who thought it might be a medication reaction. I was skeptical, as by then my legs had started to feel very heavy and I had this weird, staggering gait. After a normal CT scan and MRI, I asked for a neurologist. The specialist examined me and said, "You know, I think you have Guillain-Barré Syndrome."
I'd heard of the syndrome and already knew it was an autoimmune disorder in which some of your white blood cells attack the myelin sheaths that cover your nerves and control your muscles. It is a rare disorder, affecting one in 100,000 people. I knew that most people eventually recover from it. As befits a member of the It Could Be Worse Society, I remember telling myself, "Well, at least it's not brain cancer."
I wish I could say it wasn't a trial, because it was. Apparently God wanted me to give up walking for Lent. Within 18 hours, I was paralyzed from the shoulders down. The nerve pain was so bad that at one point, my blood pressure shot up to 220/120, and I thought I was going to have a stroke. I had a needle stuck in my belly every day for five weeks to prevent blood clots. I lost 20 pounds of muscle in the first eight days as my body fought for protein to keep functioning. After a week in ICU receiving gamma globulin therapy, I was transferred to a rehabilitation center. My only pity party occurred my first week in rehab, when I was inadvertently left at the "feeding assistance table." Everyone else had been whisked away as the day room's tables were popped up into the ceiling and the noisy room transformed into a physical therapy gym. I couldn't exactly wave anyone down.
I committed to doing one new thing every day. I moved one toe, then another. On my eighth day of rehab, I stood and staggered down the parallel bars. Everybody cheered. When asked to do 20 steps on my walker, I did 30. I exercised in bed. I tried to ignore the stories of Guillain-Barré patients with not-so-good endings. Apparently there are six degrees of medical separation, and visitors love to regale you with tales of someone's cousin's friend's dog sitter having Guillain-Barré.
After five weeks of hospitalization, I was discharged on Good Friday and walked into my church Saturday for the Easter vigil celebrating Christ rising from the tomb. The theological irony was not lost on me.
I count it a miracle.
When people ask me how I recovered so quickly, I have a few ideas. Excellent care, for one thing: I submitted to the process. I never lost my sense of humor and refused to put up with anyone who did. What I did lose was any sense of shame. Think nothing of asking friends to floss your teeth. You'll find this will really cement your relationship.
Facing a major health event also led me to reprioritize my life. At age 45, I've decided to return to school and get a degree in nursing. In whatever ways this illness has shaped who I am now, maybe I can offer the salve of empathy to another.
I once saw a documentary that concluded the one thing people who live to be 100 hold in common is a true resilience against life's adversities. They never wallow in despair. I have since tried to follow that example. My family made a poster for my hospital room with a picture of me standing with my walker and our mantra written at the bottom: "If the bone ain't showin', keep on goin'. "
Susan Brumfield is a Hanover County resident and Virginia Commonwealth University graduate with a bachelor of science degree in mass communications. She and her husband, Dale, have three children.
