Meeting Rivka, I was immediately swept up into her warmth, great sense of humor, sharp intellect and measured explanations of the more complicated aspects of her life. When we first spoke on the phone, she said, “You may have heard of my family. We needed a specialized van a few years back, because all my siblings have a degenerative muscle condition. I’m not just the girl from the van.” (see: http://childnervoussystem.blogspot.com/2015/06/mystery-illness.html)
I did remember her family, and immediately was fascinated with her story. Rivka explained how it began for her, “When I was younger, I was an athletic kid. I swam and I did Tae Kwon Do for ten years, eventually receiving my black belt. I was unscathed by the mysterious condition that my siblings had. One night when I was a senior in high school, I was at an event where we were all dancing in high heels. As the dancing got faster and faster, I couldn’t keep up, and I fell. As I sat on the floor, unable to get up, my worst fears caught up with me. Did I too, have this condition?”
At that point, Rivka was already planning to attend Midreshet Moriah for her gap year in Israel. She had never been in Israel before, and was nervous and excited. With the possibility of the mysterious condition that affected her siblings looming over her, but without receiving any confirmation, she was resolved to go and experience as much as she could. “I told myself, 'Ok, this is scary, but you're probably going to be fine...you have to be fine, because you're going to be alone- no friends, no family...maybe your sheer will and determination will make it be fine.' She hoped no one would notice when her muscle strength started to falter. Even more, she didn’t want to acknowledge to herself, what was happening.
As part of the Israel seminary experience is hiking, it became undeniable to Rivka that she too, had the same muscular condition as her siblings. “When I phoned home from Israel to say I was having difficulty walking and couldn’t go on a mountain hike with the rest of my school, there was no doubt that I had the perplexing condition, too. It’s obviously genetic, but nobody can tell us for certain what it is. And because we don’t know, we can’t treat it.”
Rivka explained how this condition manifests. “For me, it means muscle weakness in my extremities- it affects my gait and speed of how I walk. I like support while walking sometimes. I can get up from a sitting position on my own, but if I fall, I need help to get up. Primarily, it means that while certain movements are a one step process for most people, for me it can be a two or three step process.”...
The stories Rivka shared with me about some of her dating experiences made me cringe. It’s hard to imagine that people could be so insensitive and hurtful. “I've had guys ask me point blank 'What's up with your walking?' or better, 'So can you, like, even walk?' asked with incredulous horror. Ironically, it was I, who should have been incredulous.”
Rivka continued, “How dare anyone a) Ask a question like that of a person he does not know, b) Ask such a question in that manner, c) Feel that he must know the deepest, most intimate and vulnerable part of my life in the first 5 minutes of having met me. But these discriminatory experiences have been few and far between, as I don't get dates in the first place. My family was recently in an online contest to win a handicap accessible minivan, and we got baruch Hashem, a lot of exposure. The Jewish community worldwide came out to vote for us to win that van. However, because of the exposure, any random guy feels that he can look me up not only on Facebook, but good old Google, and feel he can get a picture of my life and make judgements, calculations, evaluations and eventually make the decision to not go out with me, without my side's having been explained or detailed in any way, shape or form. In the end, it's not fair to me.”
She shared the complicated nature of dating with a disability. “Everyone is afraid of being judged or that her flaws will somehow come to light & be magnified on a date. Multiply that by a thousand for me. I am nervous that a guy is going to judge me for, blame me (somehow, though, I know it is not in my control and therefore not my fault) for my predicament, not want to date me because it's ‘too hard.’”
It’s important for Rivka to find someone who is a good match for her for who she is as a whole person, not just someone who will accept that she has a disability. “I am looking for someone who is a committed Jew, but also go out into the world and have a job. I need someone funny, logical in thinking, intelligent and not afraid to be silly sometimes. I'm a very outgoing person and connect with people who are similar. Someone who is honest and kind. I am the quintessential YU model of Torah u'Madda; I like to learn Torah, but I also watch TV- I daven and have emunah, but also try to see a realistic perspective of the world. Sometimes I like to be wacky--that's part of who I am, and I get along best with people who are genuinely themselves. I like to talk about anything and everything: literature, science, music, food, history and I like to learn new things.”
I asked Rivka what she wanted from her her future, and her eyes lit up with hope. “I see my future as unlimited; disability or not. I see adventures; I dream of seeing the world; the Great Wall of China, the Safari, the rainforests, Niagara Falls, and anywhere and everywhere in between. And yes, I see an incredible amount of calculating, planning and even worrying. But I think that as great American poet Robert Frost once wrote: ‘I shall be telling this with a sigh; Somewhere ages and ages hence:; Two roads diverged in a wood, and I—;I took the one less traveled by,; And that has made all the difference.’ Being with me will be the proverbial one ‘less traveled by’, but the life we build together might ‘make all the difference.’”
Courtesy of my daughter