A Labor Day of Thanksgiving

The sun shines brightly through the delicately laced patterns of cotton adorning the oversized kitchen window. As I stand there, entranced in the repetitive motions of my hands and the soothing warmth of the sudsy water, I glance upward. Through the window I see my children playing softball with their father in the backyard. Focusing more intently, I begin to hear giggling as the girls scurry after the ball. Daddy is looking on and smiling, much as I am from behind the curtains. From the living room a voice from within the television announces the need for volunteers to help with the Jerry Lewis Labor Day Telethon and I am reminded of a time last summer when I first began to truly empathize with those living with muscular dystrophy.

The end of May was fast approaching, and my family doctor remained puzzled by my symptoms. For five months she had watched me continue to steadily lose weight, strength, and range of movement. After what seemed like hundreds of tests, she finally found a problem and called to tell me that I appeared to have "some sort of muscular dystrophy." She said that she wanted to refer me to a neurologist and gave me his name and number to set up an appointment. We were both near tears as she told me how sorry she was. I thanked her for her concern and hung up the telephone. Stunned, I stood in front of my kitchen window staring outside. I hadn't been able to pick up my toddler in six months, and now I thought I never would again. I fell down into the floor and began sobbing uncontrollably, believing things could only become worse.

A few weeks later I had my first appointment with the neurologist, who after an examination and later an EMG, ordered a DNA test to confirm his findings. He informed me that he believed I had one of two forms of MD. The first would eventually leave me confined to a wheelchair; the second would also affect the muscles in my face. Again I was devastated. In the time since that first emotional phone call, I had somehow managed to believe that it was all a mistake. But as Dr. Goodman sat next to me on a sofa in his office and began explaining the symptoms I had and what to expect next, I felt completely hopeless. When the test results came back negative for the "MD gene," we began to take a closer look at the pattern of muscle degeneration and the time frame in which it occurred. He told me there was about a ten percent chance that he had been wrong because of how quickly I had deteriorated and referred me to an out of town specialist.

A few weeks later I had my first appointment with Dr. Nelson. I didn't know how I was or was supposed to be feeling. He tried to encourage me, and I became more hopeful as he described other treatable possibilities. I endured another set of EMGs, and we scheduled a muscle biopsy, which he performed in the exam room of his office. I didn't feel anything except the warmth of my blood as it flowed across my left arm while I watched him slice into it and begin cutting away at the muscle. However, once he got close to the bone the local anesthesia proved useless, and I struggled not to scream as he began pulling and snipping the ligaments away. The pain dulled to a throb as he held up the prize specimen commenting on its beauty and handing it to the nurse. Then he began stitching my skin back together while my bicep was on its way to the lab.

As soon as the results were in, Dr. nelson called to give me what we called "better news," not good, but better than previously thought. I was finally diagnosed with polymyositis. That still fell under the MD category but had several differences. It was not genetic, but autoimmune, meaning there were drug therapies available that had been proven effective in putting the disease in remission. There was a good chance that in time with a lot of hard work, medication, and dedication, I could return to normal.

Fifteen months later, after a long and painful struggle, both physically and emotionally I have been able to come closer to that goal than I had actually believed possible. I have lowered my steroid dosage, but continue to take a high dose of an anticancer drug. The side effects are manageable; I just need a little more rest to combat the fatigue, but I think that's something all moms need. And so today, as I stand again by this kitchen window and hear my children yelling, "Mommy, come outside and play!" I think of how lucky I am to be able to go. Stepping out into the yard and picking up the bat, I realize that in a way Labor Day is also my Thanksgiving. It reminds me to think about what I could have lost and those who have lost or never gotten the chance to have. I thank God for the miracles He has given me and pray for those still suffering, for the father who cannot leave his bed to teach his children to play ball and for the child who will never be able to play.

Tonya Daniel

Return to Voices Table of Contents