June 25, 2000
The diagnosis came with a perfunctory phone call. There was no mention of treatment, no helpful advice. I could feel the neurologist’s shrug through the wire. I sat alone and in silence. I was only 25, and did not know what to do.
All these years later, I’m still not sure what to do, except to live my life. No neurologist I’ve come across has much to offer, beyond a few new drugs. I reach out, but with nothing to touch.
Whatever my difficulties, I know I am fortunate. Some people with multiple sclerosis, a degenerative disease of the central nervous system, are confined to wheelchairs or to their beds, unable to fend for themselves. I move slowly, hobble a bit and sometimes stumble and fall in the street, but at least I can walk. I try to remain upbeat; my neurologist once accused me of living in denial, but I denied it.
Still, there is much I cannot do. I no longer drive. I have to cede control and admit dependency. I lean on others regularly, and I hate it. Days are arduous, small tasks difficult. I take five minutes to button a shirt, five more to tie a necktie. And I can barely stay awake to go out in the evening. The betting at dinner parties these days is whether I will drop and drown in my coffee.
For me, living with M.S. is all about navigating an obstacle course. Crossing the street when I cannot see the other side, finding an address when I cannot read numbers at any distance, climbing stairs with feet that drag. Shooting baskets with my kids when my right arm has no strength.
And mine is a mind game, a matter of maintaining emotional equilibrium and holding onto optimism. Self-esteem suffers with the inability to perform simple tasks. I just cannot get used to admitting that I am unable to do something.
Cognitive problems are on the increase. My confusion with a child’s homework can be humiliating; I know the kids prefer now to do math and spelling with their mom. The black holes where there were once specific words and thoughts make up a map of frustration and anger. Why is this so difficult? What was I thinking? These questions come with greater frequency.
Ambiguity and uncertainty are parts of life, of course, and I have learned to live with them. But not every worry is so manageable. I am the third generation in my family to stumble and fall with multiple sclerosis.
What about my children?