My husband Michael and I were big fans of the television show The West Wing. One could say that we watched it religiously. In the summer of 2001, one of the prominent storylines coursing through the weekly series was about President Jed Bartlet’s struggle with multiple sclerosis. It was while watching the show one night that summer that I turned to Michael and said, “Maybe I have multiple sclerosis.”
For a number of months, I had not been feeling “like myself.” I was often bone-wearingly tired. When I looked down, stretching my neck, it felt like electric shocks were coursing through my legs to my feet, and I often felt tingling and numbness in my legs and arms. Thus began a series of doctor visits and medical tests that did indeed lead to a diagnosis of multiple sclerosis.
As I have come to understand, multiple sclerosis is an autoimmune disease affecting the mylene sheath surrounding the brain and spinal column. For whatever reason, perhaps set off by a virus and perhaps related to genetic issues, the immune system begins attacking the sheath, creating scleroses, or lesions, in which the sheath is damaged – thus the name “multiple sclerosis.”
There are four types of MS. Relapsing-remitting, which I have, is the most common, diagnosed in approximately 85% of patients with MS. There seems to be no rhyme or reason to symptoms, which come and go in a way that is often unrelated to the lesion activity registered by MRIs. Within this category, perhaps a third or more patients are diagnosed with benign disease, as I am. In other words, my symptoms are not debilitating and have never caused significant disability. I have never opted to take any of the various drugs on the market to combat MS, believing, in consultation with my doctors, that the possible side effects from the drugs would only be warranted if I reached a point when I was not able to function “normally” due to the disease.
Yet living with MS does create ongoing periods of a “new normal” as disease symptoms come and go, and although I have refused treatment by medication, I remain very aware of holistic methods of care. Exercise, appropriate diet and sleep, stress-reduction, vitamin D and Omega 3 are all integral to my health and well-being.
What I don’t believe is that this illness was visited upon me for a reason. In my own theological belief system, God set creation in motion but then retreated in the mystical notion known as tzim-tzum; chemistry, biology, and the physical world, both within and outside of our own individual bodies, proceeds of its own accord. For many years, I have found comfort in the image from Lamentations Rabbah suggesting that when bad things happen here on earth, God has a secret place where God goes to cry along with us.
I have been blessed these 11 years with excellent medical care and medical practitioners. My doctors understand my case and are always available to me. When a pre-holiday weekend, Friday morning brain MRI showed increased activity, my neurologist tried to reach me three times that afternoon by phone before sending an email to share the results. We corresponded by email that Sunday, and I was in his office on Tuesday morning to discuss the findings. For that level of care and concern, I am enormously grateful.
I am also grateful for my family, who support me and watch out for me (sometimes to my consternation!), trying to make sure I get the rest and relaxation that is necessary.
For all this and more, I know that I have been blessed. My favorite prayers in our liturgy have always been from the morning blessings, particularly those blessing God for our body, our soul, and the gift of Torah, and from the Amidah, thanking God for the bountiful blessings bestowed on us. In our tradition, they serve as daily reminders that we are blessed and that the healthiest way to live is with a sense of gratitude for all that is positive and good in our lives.
This is the first time that I have written or spoken out about my diagnosis. For many years, I was reluctant, concerned that the diagnosis of MS would yield a kind of stigma. Yet I have come to realize that by speaking out, I can add my voice to that of so many others serving as guides along the journey of living with MS and other chronic illnesses. My disease does not define me. Only I can shape that definition through my own thoughts, words, and actions.
