“It’s not fair to others.”
This is a phrase my husband Noah and I would utter to each other repeatedly, especially throughout the first few years of our relationship. While our fellow medical students were suffering through school, we were having the time of our lives. We couldn’t believe how lucky we were, how good our life was. We wondered what we had done to deserve it.
Noah and I met during our second year of medical school at Tel Aviv University in Israel. There we were-- young, healthy and madly in love. Life could not have been much better: sunset jogs along the Mediterranean after class, long weekends in Italy; our only real stress was that of trying to do well in our studies. Back in the States, our families, both of whom were healthy and well, lived within two and a half hours of each other. Unlike so many other couples, we didn’t even have to agonize over which Coast we were going to move back to. Everything just fell into place so beautifully for us.
Now, I would be lying if I said that when we returned to LA to do our residencies we weren’t rudely awakened from our blissful states-- staying up all night in the hospital every fourth night was far from ideal, but it was the kind of stress to which we could always respond, “Well at least it’s temporary. In time, it will pass.”
It wasn’t until my intern year that people started to make comments on the way I walked. “Are you limping? Did you hurt yourself? What’s wrong?” I shrugged them off, not even knowing to what they were referring. But over time, I started to see it myself. I did have a bit of a funny strut in my stride. I didn’t make much of it, because I was sure that there couldn’t possibly be anything seriously wrong with me. After all, I was a model of good health. I’d been working out for as long as I could remember, I’d climbed various mountain peaks from the Grand Teton to Mount Kenya, I had run half-marathons and I cycled from San Francisco to LA as part of the AIDS Ride. So, naturally I just figured it was nothing; maybe something was “out of alignment” in my hips or maybe I was pronating again and needed new orthotics. Slowly, however, I noticed that I was having trouble running. I couldn’t quite put my finger on how or why. It was as if my legs just weren’t working properly, they were clumsy. I started to trip more often. Eventually, I couldn’t even jog, but even then, I didn’t make much of it because to be quite honest, I never really enjoyed running, so I saw it as a good riddance.
It wasn’t until my third year of residency, about two years later, that I decided I should probably investigate what was going on, especially since I was thinking of becoming pregnant soon. By then, even walking had become effortful. I bounced around from sports medicine doctor to podiatrist to physical therapist to neurologist. Just before Noah and I left for a trip to Thailand, after having had multiple tests done, the neurologist said there was definitely something going on, but it was probably not genetic and likely not progressive. He still wanted me to see a neuromuscular disease specialist at UCLA when I got back, but it wasn’t urgent.
The day after we returned from Thailand, Noah, my mother and I went to see the specialist. The physician who came to see me first happened to be a Persian Jew. After a few minutes of listening to my story and examining me, he told me that he thought I had a progressive neuromuscular genetic disease found among Persian Jews called Hereditary Inclusion Body Myopathy or HIBM, a disease which, on average, leads to severe incapacitation within 10 to 15 years from diagnosis. And at that moment, among a flood of confusing and overwhelming thoughts, all I could think of was that I guess I wasn’t as lucky as I had always thought. That all along I had lived this life thinking that my family and I were immune to the tragedies of life that I had seen befall so many others. In a moment’s time, I was just like everyone else. I just couldn’t make sense of it. It didn’t fit in. It wasn’t part of the plan. This wasn’t the way my life was supposed to go.
It took me a long time to get over the thoughts of “why me” and “it’s not fair, I thought I was a good person.” I tried to remind myself over and over again that it could be worse-- I could be dying; I could have a terminal illness. I still have these thoughts today and on the good days, I can find some comfort in that rationalization. But on the bad days, all I can think of is that a part of me—a integral part of me, my body—is slowly dying. Living with a progressive neuromuscular disease means constantly having to cope with and readjust to new losses of function of various parts of my body. Just when I was finally able to accept that I could only walk slowly because of the weakness in my legs, I started to lose strength in the fingers in my left hand. Just when I thought my symptoms had plateaud for a while, I realized that I had atrophy, or muscle wasting, in my forearms and upper legs.
With a disease of this nature, there’s no such thing as remission; no period of time when you’re symptom-free and get to do all the things you used to love. And there’s no escape, not mentally nor physically. From the moment I wake up in the morning and monitor whether anything’s weaker, to every step I take throughout the day, to trying to lie in a comfortable position in bed at night, it is there. Every time I have trouble snapping my son’s pajamas or lifting him off the floor or carrying asleep from the car to our home, I wonder for how much longer I’ll be able to do even that. My right hand is only minimally weak now, but how much longer until I have trouble turning the key in the ignition or pulling my foot up off the gas pedal? Over the last week, I’ve been watching my son take his first steps. Most mothers would be thrilled to see this and of course, I am, but my joy is infused with fear, sadness and anxiety because I know that at this rate, it is only a matter of time before I won’t be able to keep up with him.
On the good days, I can look at my husband, my very best friend, and I can look at my son, a beautiful, happy, healthy child and say that I still am so incredibly lucky. I can try to intellectualize my situation and say that my body is just a vessel, just a vehicle for my mind and my spirit. But on the bad days, I yearn for my old life. The life where I could buzz around from place to place without a second thought, where I could dart across the street when the light flashed “10 seconds” and not worry about getting stuck in the middle of the intersection in front of oncoming traffic, where I could wake up on any given morning and decide to go for a simple walk with my husband without wondering how long I’d have until my muscles fatigued or my low back ached, where I could go to a concert and dance freely and not be afraid that I was going to fall onto the person next to me, where I could walk into a shoe store and buy a shoe simply because I liked it, not because it didn’t have heels or because it’s safe for me. On a good day, I can have an appreciation for the fact that this disease has forced me to recalibrate my scale and my perception of what real problems were. But on a bad day, I miss my old life, the life where a devastating stressor was something like my computer crashing or losing a favorite piece of jewelry.
One of the hardest challenges for me to face in this process has been trying to find a way to look toward the future with the wonder and excitement that I once felt. I don’t really get to indulge in that pleasure anymore. Plans to one day play my guitar again, go on a ski trip with my husband, hike up the Grand Teton with my son and of course, have another child are permanently on hold. The fun of planning and fantasizing about what lies ahead is tainted for me, as passing time only means that my body will slowly continue to stop working.
The one bright light in all of this is that my family, by founding NDF with friends close to them, has allowed me to rediscover that feeling again. My mother, father, sister, brother-in-law, aunts and uncles-- from the moment they learned of my diagnosis, have mobilized all their resources and have made finding a cure for this disease their number one priority. They wasted no time in organizing NDF. Within months of my diagnosis, my mother, father and three uncles traveled to Turkey for a neuromuscular disease conference held only once every four years. They have met with scientists and researchers from around the world and are funding not one, but multiple labs that are working on various possible treatments and cures. They are raising awareness in the community about a disease that I myself, as a Persian Jew and a physician, didn’t even know existed.
But they are giving hope not just to me, but also to other people suffering with this disease who are less fortunate than I; the people who are not lucky enough to live in a community where others rally to their support.
Tonight, I can walk onto this stage without the use of a cane or a wheelchair. I can wear these pretty shoes without braces around my ankles. But this is me only two years out. And although the speed of the progression of my disease is uncertain, we are sure of two things. First, we know that every young adult diagnosed with HIBM, including me, will slowly lose his or her ability to walk. But second, and more promising, is that with your financial support, NDF will find a cure for HIBM and allow all of us who are suffering to have our futures back.
Thank you for coming here tonight to support our cause.
