Feb 1, 2003
Real Living with Multiple Sclerosis
A version of the following lyric, author unknown, can be found in several different sources. The first six verses perfectly describe how I felt when I was first blindsided with an MS diagnosis. I added the last two verses as I pondered my MS experience today.
Thirty years ago, I experienced my first MS symptoms. It was a sunny, warm morning, and I ran to the tennis complex to reserve a court. Without warning, I stumbled, lurched forward, corrected myself, staggered backward, and fell. My leg strength vanished. My finely tuned, 28-yearold body no longer seemed to belong to me. My brain didn't seem connected to my body. I tried to stand, but my legs didn't move. Seconds later, inexplicably, my strong legs reappeared. I jumped up, reserved a court, played for 2 hours, and then went home and prepared a gourmet dinner for 8.
Sometimes, my tennis game was great. Sometimes, I didn't perform as well. Since my will and athletic prowess often proved superior, my competitors were unaware of any of my physical problems. They only noticed my inconsistency. My physical coordination decreased slowly and steadily, until athletics were no longer an option. I still appeared healthy and strong. I reassured myself that no one knew. Surely, the progression would stop and my disease would be kept secret forever.
During the next 10 years, I gave up aerobics, skiing, jogging, my beloved tennis and, finally, bike-riding. I buried my anger and grief and returned to teaching after a 15-year, childrearing hiatus. I didn't consider my health, but doggedly made and implemented lesson plans for about 50 educationally, economically, and emotionally distressed 5- to 11-year-olds.
I often tottered home, weak from fatigue. More than once, I fell asleep at a red light while driving home. I attributed my exhaustion to lack of sleep, not MS, and told associates and friends the ankle-foot orthotic on my left leg helped to lift my dropped foot.
My compulsion to disown my disease drove my joyless life. I didn't want to drop things or forget appointments or struggle with fatigue. I appeared busy, busy, busy. At least, that's what I hoped others observed. My glib responses thankfully hushed questions about my frequent symptoms.
Even in my personal relationships, I believed nondisclosure would miraculously cure me. Neither of my teenaged children knew I had a secret. Like me, my husband chose denial and isolation. I endured my MS, lonely and alone.
Nine years ago, I cautiously revealed my secret to family and friends. My chronic anger and self-absorption dissipated at once. To be honest, there are times when I feel imprisoned by my body. But the truth had set me free, and everyday I'm still me...
"To do the things I do, With thoughts now Sometimes a verbal struggle.
To love my family And them to love me back."
© 2003, Real Living with Multiple Sclerosis