I was diagnosed with FSHD when I was sixteen years old. I was living in New York at the time. That is where I was born and grew up. I moved to Israel in my twenties.

No one else in my family had been diagnosed with FSHD or any other kind of muscular dystrophy, so this came as a shock to us all. From as far back as I can remember, I could not pucker my lips, blow up a balloon, or make a proper smile. But no one thought much of it. I had been born a month premature, so we assumed that was the reason. And I could live without doing these things, so we did not pursue it further.

Then, when I was a teenager, suddenly I could not lift my arms. This was cause for concern. My parents took me from doctor to doctor and test to test, but no one knew what to make of it. Finally, my cousin who is a pediatric neurologist sent us to another pediatric neurologist who he thought would be able to diagnose me. As soon as I walked into his office, he knew exactly what I had. 

Back then, almost 40 years ago, there was no genetic test for FSHD. But he gave me a clinical diagnosis and said there was nothing he could do to help me except suggest regular swimming and joining the FSHD Society. I took his advice on the swimming and started doing so once or twice a week. I am now 53 years old and swim two kilometers every day. I thank Dr. Shapira for that advice. I believe the swimming is what has kept me in as good condition as I am. 

The FSHD is now throughout my body, but I am still active and live a rich life. I walk but slowly and with difficulty, and only with walking aids. I can still use my hands and arms, but they are weak, and I have pain in my hands, fingers, arms, and shoulders. I also have lower back pain, and my stomach protrudes like I am five months pregnant. My whole body feels heavy and weak all the time. Exerting myself in any way leaves me feeling like I just did a triathlon. But I keep moving while I can, as I am told the alternative is worse for the muscles.

Two of my seven children (six biological, one adopted) have FSHD, and in some ways that is harder than having it myself. There is some guilt about having passes the disease on to them. On the other hand, if I had not, they would not be here at all today. 

Life is not easy no matter how you play it. I have struggled with this myself, and even written about my journey in three memoirs, the most recent of which came up in December 2021. It is titled Dreaming Against the Current: A Rabbi’s Soul Journey, and a significant part of the book is about my own coming to terms with this illness. In fact, aside from being a writer (I also wrote two novels), I am also a spiritual companion and a rabbi. I run a mikveh (ritual immersion pool) and have taken my love of water and belief in its healing powers into my professional life.

And as much as FSHD has been the biggest challenge in my life, it has also been my greatest teacher. Life is not fair for any of us, but I was awoken to that fact earlier than most others are, which has made me a more compassionate and introspective person, I believe. It has also made me a seeker – a seeker of meaning, answers, and connection. If FSHD has taught me one thing, that is that perhaps there are no answers, but meaning is something we have the power to create. And one of the ways we do so is through connection – with other humans, with nature, with animals, and with the flow of life that is greater than we are.

Life is a journey of learning and growing. And sometimes just being with what is. I am trying to sit with that.

But it is also about working together to create a better world and a better reality. FSHD has taught me that as well, through the inspiring FSHD community around the world. At first, I did not take Dr. Shapira’s advice about joining the FSHD Society. I did not want to see people who were further along in the development of the disease than I was. Back then, I had the luxury to be in partial denial. But once my FSHD went to my legs, I felt I no longer had that luxury. I went to my first FSHD Connect Conference, back in 2014, and it was life-changing. Meeting others with the disease was a bit scary, but it also felt in some ways like coming home. I had never met anyone with FSHD before. Finally, there were others who could empathize and offer advice and support.

About five years ago, my daughter Hallel and I started FSHD Israel. Since then, I have been involved in the FSHD World Alliance. She and I went to the first FSHD World Alliance conference in Marseilles, France, too. That was an amazing experience. Meeting people from around the world with this same disease, seeing the symptoms on faces with different ethnic features and on people speaking all different languages brought home our shared humanity in a way it had never been to me before. In some ways, I have more in common with these people who look so different and speak differently than I do with people who look and speak like me.

We humans are all connected in more ways than we often realize. A disease that has made me feel an outsider in many ways has also brought me into a special club, None of us want to be part of this club, but we are also a group who makes the best of what we’ve been given and who work hard to fight for a better future for generations to come.

I hope one day we will have no need for the FSHD Society or FSHD Israel, but as long as there is a need, I feel blessed to be part of this inspiring group of humans. FSHD Israel has a lot more work to do to make care for people with FSHD better in this country. But working together we have a better chance than trying to do it alone.