Note from Marie:
Originally I posted my MS story on another blog. It offered with transparency and humility. Those who live with chronic illness will relate to my story. I hope in the future that others will share their stories here.
I don’t know why I have had such a hard time putting my story in writing. I have lived with Multiple Sclerosis for decades, and freely talk about my limitations. I walk with an arm crutch because distances of about 30 feet will cause me to limp. I drive a car with handicap plates. I use an electric cart in big stores. It’s obvious that I have mobility issues. I have often counseled individuals with newly diagnosed MS.
The problem is that I don’t quite know where to begin my story. Let me start by saying that MS is a quirky disease, and every MS person I know has a different set of quirky symptoms that can appear at random. When most people hear of Multiple Sclerosis, they envision a lifetime of wheelchairs and handicap assistance. Though true for some, many of us have symptoms that are not visible, but which limit our lives significantly.
My MS story begins in Anchorage, Alaska. I’ll describe the medical story here, but will blog about the family and spiritual lessons in other posts.
Jim and I were married for almost six years before our first son, Scott, was born in February 1977. Years of infertility, surgery for endometriosis, counseling with my physician, and hundreds of prayers prepared us to welcome our first-born with joy. He was born a month early. I lost the baby weight quickly, and had the usual new mom adjustments. Scott was a delight, and after a couple of years we wanted another baby. We began another round of basal thermometer charts to help with fertility, and were thrilled to find out we were expecting!
We welcomed our son Chris in January 1980. This had been a difficult pregnancy. I was exhausted. I had frequent Braxton-Hicks contractions throughout the third trimester. In early December I was admitted to the hospital for premature labor. I was put on bed rest to protect our baby. Jim was working a night shift at Anchorage International Airport field maintenance. For our safety, I stayed at my parents’ home while waiting for our baby. My mom (Nana) took care of our active toddler and tried to keep me lying down. Jim would come see us when he woke from day sleeping.
Chris was also born a month early, after a precipitous delivery. Labor was very quick and I felt pretty good after delivery. We went back to Nana’s while I recuperated. I was up on my feet, but was feeling some odd numbness and tingling in my left arm and hand. I attributed my fatigue and weakness to the pregnancy, a toddler, and a new baby.
We planned to take our little family home three weeks later. Jim carried baby Chris down the steps in his carrier. I followed him with the diaper bag, and little Scott was behind me. Near the bottom of the stairs, my leg suddenly buckled, my ankle rolled and I fell the rest of the way down the steps. I could not stand on the injured ankle, so was carried by ambulance to the hospital. A badly sprained ankle and tingling numbness in my legs sent us back to my parents’ home for another few weeks.
Something was not right. Limping on a sprained ankle didn’t explain my loss of balance. My hands were so weak I was afraid I would drop my baby. I couldn’t seem to recover from exhaustion, despite lots of sleep. I had plenty of help with the boys, I didn’t even have to prepare meals or take care of the house. Again I lost the baby weight quickly but I felt drained, tired to my bones. The only thing I could do was nurse our baby and play gently with our toddler.
We finally took our family home, and I learned to live with the symptoms. When Chris was ten months old, we made arrangements for someone to watch the boys while my mom and I flew to Virginia-Mason Clinic in Seattle for a full battery of tests. These included a spinal tap, nerve conduction velocity, evoked potentials, and electromyogram. I was even given a psychological evaluation to determine if I was imagining the symptoms! The tests showed some numbness and loss of nerve conduction, but because the symptoms were sporadic, no diagnosis was made. I flew home with a severe spinal headache which, yet again, put me on bed rest at my parents’ home for a week.
For the next three and a half years I went from doctor to doctor, trying to find out what was wrong with me. A bout of severe eye pain sent me to the ophthalmologist, and was diagnosed as optic neuritis. Weakness in my legs was dismissed by an orthopedist as “bored housewife syndrome”! Because symptoms would come and go, it was difficult to find a diagnosis. Recurrent bladder infections were a nuisance. Fatigue was a constant. Migraines were appearing frequently.
I even questioned whether the problem was in my mind, not my body. These were the days before home computers. Internet resources were not available yet. This was before the widespread use of Magnetic Resonance imaging. I had to rely on the few books and articles that could be found locally. I read everything I could find at the library. I determined that I would find the diagnosis – whatever it was. I’d rather know the “enemy” than to fear it.
I began thinking about Multiple Sclerosis. I wondered how I would be able to raise two active boys while dealing with MS.