Our Stories

I am just about to turn thirty. I have the most wonderful two-year old daughter. We are blessed to live near the ocean and I love to put her on the back of my bike for the joys of the seaside. Yet my vision is becoming bizarre. My eyesight seems to wobble, then I lose vision in one eye and, thankfully, it returns before I lose vision in the other. My eye doctor refers me to a neurologist. An unfeeling, insensitive, heartless man calls me at work with the bombshell that I have Multiple Sclerosis. The fear that I might not see my daughter as she grows up almost breaks me. And I turn thirty.
……..
And so, I live with M.S. Of course, there have been hospitalizations, emergency room trips, medications that didn’t work and made me look like a heroin user. Steroids that made my weight skyrocket. Drug companies that called to beg me to stay on their gold standard priced treatment. Do people think I’m drunk when I leave a restaurant with weak legs? All the time. Might it keep me in bed for the better part of a week? The truth is, yes.

And yet…There are now thirty years on top of that first thirty with mountains more happiness than sorrow. A warned-against second child who thinks like me and tells me what books I should be reading. A granddaughter. A husband who asked me to marry him when I was bald from chemotherapy. A beautiful antique home where I garden much of the three acres. The most pleasant and whimsical greenhouse I built last year. Twenty years of teaching with accolades I would never have imagined.

The greenhouse

Did the Multiple Sclerosis go away? No. But what I said to myself that first year was, “I have to do ___ now, because who knows if I will be able to do it tomorrow.” So, I went to Harvard and changed careers. I work until every bone and muscle in my body hurts so badly, I have to lie down on almost any surface I can find. M.S., or not, I do more physical work than any woman I know. Sometimes, I cannot do it tomorrow. And somethings, I will never be able to do tomorrow again. I never could ride a bike again. But I have ridden my stationary bike thousands of miles. I can toss weights around like child’s toys. Seeing my daughter with her own daughter brings tears to my eyes. And “I have to do it today,” has never failed me. Perhaps I won’t be able to do it tomorrow, but with a little luck, I am already doing it today.