From MS To Mrs.: Hiding In Plain Sight
Look up. Yes, right there where the byline should be. The bland “Anonymous.” The mark of journalistic integrity gone. Absent, not because my words lack conviction, but out of fear that if I print my name, I’ll never get married.
I have multiple sclerosis. I was diagnosed just after my 30th birthday. It was erev Yom Kippur. As I was walking out the door for Kol Nidre, my doctor called to let me know that my spinal tap results were “remarkable.” In medicine, words like phenomenal, remarkable and impressive are not often augurs of excellent news.
The next month was filled with doctors’ appointments and the weighing of options. A mix of altruism and intellectual curiosity tipped the scales in favor of experimental medicine, and I spent two years engaged in a clinical trial. During that time I learned a thousand things about being a patient, about being myself, and about growing comfortable with a diagnosis and a disease.
I also spent two years coming to terms with the public perception of disease. I felt infected — not by my misdirected T-cells — but by the stereotyping and misapprehensions of those around me. So I hid. There are thousands like me. We look “normal.” Sometimes we’re tired. Sometimes we have pain. Sometimes our hands or legs aren’t working their best.
But lots of times, almost all the time, we give ourselves an injection in the morning before leaving the house, and the rest of the day we are doctors and teachers, real estate agents and artists, moms and dads. We are unremarkable.
But I am single and unremarkable. An informal polling of the guys I hang out with produced this unifying theory on dating me: “I wouldn’t date a girl with MS, but, that’s me; I know you’ll find the kind of special guy that will be OK with that.” I nod my head and think to myself, In 20 years I may be the same sweet, smart, ambulatory chick I am today, or I may have a scooter or a walker as an accessory, and I’ll still be fine, because I have learned the lesson of the unpredictable life.
And you. You’ve never been forced to confront the reality of an interrupted life. So you sacrifice the potential of a thousand good days on the imaginary altar of a predictable future.
Our reality is that there are no guarantees. We can spend our lives chasing perfect, or we can face the actuality that each day stands alone as an opportunity to learn something new, call an old friend, love out loud, watch bad TV, or date someone that may challenge our definition of perfect. Surely, Utopia has some handicapped parking spaces.
I know that I am not the only Orthodox woman with MS, but I have yet to meet another. In fact, I don’t know any single Orthodox man or woman with MS, or Lupus, or remitted cancer, or diabetes, or bipolar disease. In fact, but for pervasive lactose intolerance, we seem to be a group of perfectly whole and startlingly healthy people; all of which begs the question of what we are not talking about.
In my adulthood I’ve witnessed the Orthodox community begin to talk out loud. The whispers of gender identity, feminism, sexual abuse and divorce have become a chorus for social change. I’d like to add disease. I would be proud to be a part of a community where being the brother of someone with cerebral palsy or the daughter in a lineage of breast cancer survivors, or the young woman living with MS is just one part of our narrative. Where we can speak freely of our life experiences without weighing this freedom to be ourselves against the fear that we will be confining ourselves to singlehood.
I want badly to end this article with my name. But I am not brave enough to be the first. I’m not confident enough to believe that a byline reflecting my name will not impair my chances for love, companionship and motherhood. I fear that I live among people that will define me by my disease, and so, I hide. I’m lucky that I can. I’m not marked with a wheelchair, or hair loss or disfigurement; instead, I carry it on my soul. And it’s weighing me down.
The Jewish Week granted anonymity to the writer at her request.