From MS To Mrs.: Hiding In Plain Sight

Tuesday, October 26, 2010

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.

 

Comments

I disagree anonymous. I married a women with MS and knew she had it while we were dating. If you find the right person your MS won't matter. Hang one you will find someone.
Incredibly powerful and moving and, for lack of a better word and without trying to be funny, remarkable.
That is such a sad commentary on humanity. The community that rejects the sick, rejects themselves. Sooner or later every human has to face their own mortality,weakness, frailty and imperfection. Those that do not, fool no one but themselves and condemn themselves to a lifetime of loneliness, depression and rejection. The worst rejection of all a self rejection, the inability to come to terms with the inevitable. Think about what we applaud as a society, the super athlete, the super beautiful, the superrich. The only thing we applaud more is the downfall of the super athlete, the super beautiful and of course the superrich. I suspect the reason behind this is it helps bring other people down to the reality of our own lives, it helps us not to feel so bad about ourselves. One more thought, it is my humble yet firm conviction that no group that rejects the sick is worthy of their presence.
I hope you find the love that you deserve.
Hi journey friend. Your story pains my heart. By reading it I realized how generous my husband was with me when we were dating and he asked me clearly, "What can I expect with your MS?" and I talked and explained it all. He nodded and said, "I will always take care of you, I'll push your wheelchair". So, illness is not a stain for all and every religious man. I wish you find your heart's desire.... AND: All is from the shamayim; MS is one huge G-d given shiur (it surely changed my life by becoming my journey's guide). Having MS and finding a partner or not finding it, is another huge shiur for you indeed... And, aren't we here doing just that? polishing our soul, our diamond through our conflicts, pain and tribulations? May the Blessings Be and Shabat Shalom
Bonus to you that you actually dated. You had the chance to develop an emotional connection with this man to the point where he was willing to say "I understand the risks involved, but I like YOU and am willing to plan for the future rather than immediately reject the relationship." Not all communities believe so strongly in the values of love and a relationship. When marriage is placed in the religious context of "you must find a mate with which to produce kids and teach them to live a Jewish life and continue this trend", why would one not come to the conclusion that the mate must be reproductively, physically, and religiously strong such that they can bear and raise proper children? Medical history becomes a crucial factor. Survival of the fittest is indeed the name of that game.
this is eloquent, powerful, and an inspiring reminder of how everything we go through is part of our journey. did you know that there are shadchanim who specialize in helping people with medical issues? i have found them to be sensitive, well informed, discrete and a marvelous support system for us along the way. have you seen this? http://frumsupport.com/ all the best of everything to you.
i have MS and am orthodox and just had surgery for breast cancer-we are out there! and don't you just love the "oh you look so good" you're not handicapped or I have pain too-surely you're mistaken and it's just arthritis! You just keep plugging along and YES you will find someone willing to share your life. Nobody really knows what the future holds so don't despair
Check-out this website for Jewish Singles with Special Needs: www.JSWSN.org and this site has lists of matchmakers, including ones for people with special needs: www.JewishDatingAndMarriage.com click on "matchmakers" at the top of the page. -Glenn www.jewishresources.info
Not everyone can handle living with a disabled partner. I was married to a religious woman who has epilepsy, depression, and asperger's all at once. My family and friends all discouraged me from marrying her, but I was in love and I wanted her to be happy. It was a very difficult marriage. I knew that my social life would be limited, her health bills would eat away at our savings, and parenthood would no longer be a guarantee. I tried my best to make it work. But ultimately we divorced. Before you judge me for abandoning a disabled person, I should let you know that the divorce was her choice. She was unable to handle married life, and she chose to end it.

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