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

How sad - to be judged as a commodity - only valuable if you can "produce" offspring. Survival of the fittest be damned. This is a woman worthy of and missing out on love, the thing that makes all human life bearable. To be part of a community which so closets weaknesses would never work in my life. Also, being 30-ish and not married before this diagnosis likely already put this woman in somewhat of a pariah situation. Better she should look for love within some more progressive Jewish communities where her only worth isn't dependent upon her womb.
Most people - men and women - weigh the kind of life they envision for themselves. It does not usually include having a mate who needs medical assistance from day one of the marriage/relationship. My father, z"l, had MS for over 50 years. He was 32 when finally diagnosed but he died at age 80. My mother, an Eishas Chayil if there ever was one, stayed with him without a word of complaint, and I and his doctors credit her with keeping him alive that long. But, if you were to ask her would she do that again knowing what she knows about the disease, she would tell you that she doubts it. Living with severe and/or chronic illness and all that it implies is a vey difficult way of life. It is one thing to have it imposed on you. It is totally different to choose that way of life. And, contrary to popular belief, love does not conquer all. I hope that your life will still bring you all that you wish for with a wonderful mate to share it with.
I am a frum neurologist with over 100 MS patients under my care. Only a few are Orthodox Jews. I do know that there are support groups out there just for frum women with MS. [Editor--please release my e-mail to the author, if she is interested to contact me.] A neighbor's niece with C.I.S. (Clinically Isolated Sundrome, i.e. one attack of what may ultimately develop into MS) recently got engaged. She is fairly right-wing frum and found a young man who loved her for her strengths. Focus on your strengths, daven, and may Hashem help you among all the many others in search of soulmates.
I try to set up people so if you'd like to email me your info- I would love to look out for you -suribreban@aol.com warm wishes, Suri
I just read this article and am now engaged in a discussion/argument on Facebook about if the writer should have signed her name to this article. I am on the side of her anonymity -- because I have been there, albeit for a different reason. Below is the text of my argument in favor of her anonymity that I posted on Facebook. I would like to issue an invitation to the author, to email me privately. My email address is rstern@qis.net. I would like to invite her to visit me in Baltimore, MD. for a Shabbat or whenever. (I am assuming the author is checking these comments...) Here is what I wrote: FIRST POST: The religious community is NOT kind to single people who wish to get married who are "different" -- whether they be diseased, disabled, or suffering from some other so-called "defect". I speak from experience. However, at this point in my life, age 51, I could care less what other people think of me. But if I were younger -- heck, I would not sign my name either... SECOND POST: (in reply to a comment that really wants the author to reveal who she is) Huh. Still YOU are not that person. In our world there are many very STUPID people. It so happens that a lot of them are "shadchans". In 1996, I was 36 years old, single (divorced), a mother. It so happens that I also wear hearing aids. I spent four years looking for a husband. I used every avenue - shabbatonim, singles events, print and online personals, dating sites, friends/family, and Shadchanim. NOT ONCE was I fixed up by a shadchan with a "normal" man. EVERY TIME a shadchan called me to tell me she had the "perfect match" for me, the first thing she would tell me about him is "he is deaf". Sometimes it would be "he is blind" or "he is crippled". I happen to be an extremely intelligent, capable, socially adept woman. In no way was my disability the whole of who I was/am. I was bore this insult for four years, and it was an insult and I was hurt very much by this. I did NOT meet my late husband through any of these shadchanim. I met him online. He was "normal". After I met him and we were dating and it was serious, I got a call from a shadchan to tell me she had someone "perfect" for me and before I could stop her and tell her I was seeing someone, she began to "redt" him to me. Of course the first thing she said was "he is deaf". I finally got a word in edgewise and informed her that I was seeing someone. Her response, "Oh that's wonderful! Mazel Tov! Tell me about him". I thus proceeded to tell her about him to which she said, "Oh yes, I have heard of him. He is a very eligible and desirable man. He is at the top of all our lists!!" Did she HEAR what she just said? I responded to her, "But not for me, right?" Her response: dead silence. I told her to please remove him from her list as he is "taken", and hung up. It so happens that NOW, I am single once again, this time, not by choice. Initially I intended to keep the fact that I wear hearing aids more of a secret. However, it so happens that things are a little different for me now: for one thing I am now 51 years old and closer to that "old age" wherein which losing ones hearing sort of comes with the territory so I do not seem so "abnormal". For another, I am living in a community which far more readily embraces a diverse religious Jewish community, and in which there are larger numbers of people who are deaf and hard of hearing. And yes, Baltimore IS far more diverse than Teaneck, and Baltimore is HAPPILY diverse, and Baltimore is much more welcoming. So, NOW, I can say all this and my name is known. But, 14 years ago, I could not. I do not know if 14 years ago, I could have done so here, in B'more either. I truly understand what the woman in the article is saying, because even though I do not have MS, I have experienced the dissonance of treatment by shadchanim. I say dissonance, because as religious Jews we are taught NOT to do this --- and yet we do. So, no, she should not feel the need to sign her name. Not until she has been given the opportunity to have a husband, and a family and to live as normal a life as she can -- then, if she wants to speak out, she can and should. But not until then, when speaking out could continue to cost her that ability.
The second paragraph of your comment shows a big part of the problem - ignorance. People with MS, both men and women, can indeed bear healthy children. They are "reproductively, physically, and religiously strong such that they can bear and raise proper children." While some days balance may be an issue, and maybe they can't run after a fly ball their children have hit, they can still be active, involved, loving parents who are everything in their children's eyes. While there are certainly risks involved a person who is kind, loving, caring, makes you laugh, makes you complete, etc. is worth it. Also, while there are some drawbacks to having a spouse/ parent with a disease such as MS, it also teaches the children involved that though a person may not be perfect, they can still be perfect for you - as a mother, as a father, as a spouse. It teaches them that people are not a sum of their diseases and disabilities. People are complex combinations of many things. It is who they are as a person that is important, not which doctors they see. Everybody in life has their "peckel", their "baggage" - what matters is how you deal with it. By the way, I am remaining anonymous simply b/c my husband, who is the father of our 4 children, is currently job hunting and there are others as closed minded about what MS can and can't do.
I was married BEFORE I knew I had M.S. I had had 2 children while I was in my early '20's. My journey was downhill. I lost a teaching job due to the M.S. and - I was teaching in a Yeshiva!!! (I sued them and won!) I was even in a nursing home at the tender age of 32. My children were impacted greatly by my lack of varying loss of abilities. The realities of the disease are like life...you don't know from day to day what to expect. My husband was an angel and stayed through it all...........I had to deal with blindness, deafness, paralysis, needing a respirator, wheelchairs etc., and still - he stuck by me. HOWEVER, there is a reality out there....some high percentage of marriages - like 93% end in divorce- it is just so stressful. But, I would also like to add that WE NEVER KNOW what Hashem has in store for us....when I was at my lowest - emotionally and physically - I had what is called a spontaneous remission!! I no longer needed any devices - I could see - I could speak - I was "cured"...and here I am some 16 years later, having enjoyed my 41st anniversary, and - my 10th grandchild!! Baruch Hashem - we never know!
This is in response to the anonymous author of MS to MRS. I invite you to contact me via email and would love to introduce you to remarkable eligible gentlemen who share your plight.
To the Anonymous author of MS to MRS: I invite you to contact me via email. I welcome the opportunity to introduce you to some remarkable young men who share your plight.
I am in contact with many singles who are open to something like this... I also network with Mrs Leah Speigel (who forgot to include her email!) email me at medicalshidduchim@gmail.com

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