Rivka’s Story: Strong As Ever
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.”
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.”
As she walked me through her room while telling me her story, she showed me her rack of Tae Kwon Do belts and a stack of wood with that she had fractured with her own strong arms, many years ago. Listening to her calmly explain to me the things that have happened to her physical strength, I can see that Rivka’s emotional stamina is strong as ever. When I commented on this, Rivka remarked, “The membership oaths of my Tae Kwon Do training have served me well through this process. ‘I strive to achieve and live by the following principles: I am polite, honest, sincere, and straightforward. I control my emotions and continue what I start in spite of any difficulties. I foster an indomitable spirit’ – ‘I am dedicated, motivated and determined. To develop myself to the maximum of my potential. In all ways. To be the best that I can be.’
I am still that girl. She lives inside me and I continue to push myself and achieve milestones just as I would have. I graduated from Stern and Revel, I have a career as a Judaic Studies teacher to middle school students. I have friends and a great social life.
I don’t let my condition get in my way.”
Her usually upbeat tone changes when we change the topic. “I had always figured that I would meet a guy at some event, we’d talk, hit it off and *magic!*, that’d be it. That clearly hasn’t happened.”
“My having a disability did not impact my first date. It was with a guy, who I had met on the YU program of Torah Tours. Nice guy, good looking, but I just didn’t feel “it”- that tingly, butterflies-in-your-stomach feeling I thought I should. I wasn’t excited. And I told myself that I was so young at the time, I felt, and balancing 6 courses, VP of the Torah Activities Council, plus 2 Fellowships– there’d be time for dating later. I figured I had time, and that my friends would set me up, or I’d meet someone on a program.
That has yet to happen. I signed up for YUConnects, thinking ‘I’m getting out there, I will be dating in no time because I’m smart, cute and I’m a relatively good person’…but the pool of guys is quite small on YUConnects. So I signed up for JSwipe, and I still don’t have anything, but it’s hard to get out there…especially if people know about my disability. I don’t view myself as damaged goods, but I feel that’s how others sometimes look at me.”
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.’”
Then she added something from her unique perspective. ‘I’m nervous that a guy is going to be a ‘chassid shoteh’- or as I’d explain, think he is too frum to do the mentchlach thing, and that if I were to chas v’shalom fall, he’d be too “frum’ to help me up.But more than that, I’m nervous that no guy is going to want to go out with me in the first place.I’m nervous that if I do end up going out, it’ll end because of my disability, not because we aren’t shayach (appropriate match) for each other.”
Rivka summed up her resolve and resiliency in terms of how she interacts with the world. “I do not let my situation define or limit me to the best of my ability, in any realm of my life.
I am a committed Torah Jew through this challenging experience. I am a dedicated friend, daughter, and employee, and I can be counted upon. I put in 110% effort into everything I do, and I do not believe that trying too hard, is a bad thing.”
I asked her what she wanted people to know about who she was as a person. “I wish people knew that my disability does NOT define me, my abilities, capabilities and that I have exceptionally high expectations for myself. I do not take the easy way out of anything. I overthink to the point of certainty, and I think that like all things in life, the effort that a person and that I will put into our relationship will yield only good.”
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.’”
Shira Lankin Sheps graduated from Hunter College School of Social Work with an MSW in clinical social work. After working in the clinical field, marketing and photojournalism, she decided to start The Layers Project to help break down stigma and promote healing within our Jewish community. She feels strongly about presenting women, who are so often shown as shallow characters or fully removed from Jewish media spaces, as three-dimensional individuals whose lives are full and rich with resilience. Shira is the founder, Publisher and CEO of The Layers Project Magazine.