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Doing My Part

At the time of my diagnosis, when I was 35, I had struggled mightily with the question of whether to tell my parents

Ever since I was diagnosed three years ago with multiple sclerosis (MS), a chronic disease that affects the central nervous system,

I’ve been required to undergo MRI scans every few months to monitor the progression of the disease and check for any new lesions in the protective layer of the nerve cells of the brain and spinal cord.

In Eretz Yisrael, appointments for MRIs are hard to come by, so you take what you can get. Because MRI machines here typically run 24 hours a day, taking what you can get sometimes means scheduling appointments for midnight or later.

About half a year ago, when I called Hadassah Hospital’s MRI clinic to schedule my next appointment, I was given an 11 p.m. slot for two months later. I accepted the appointment gratefully; it was certainly better than the post-midnight appointments I’d been assigned on many previous occasions.

Several weeks after I booked this appointment, my mother decided to fly in from Canada to visit us in Yerushalayim. As it happened, the evening of her departure coincided with my upcoming MRI appointment. In fact, her return flight was scheduled to depart at 11 p.m., exactly the time of my appointment. Since my mother was unaware that I had MS, I realized that this would require some careful maneuvering.

At the time of my diagnosis, when I was 35, I had struggled mightily with the question of whether to tell my parents. On one hand, I am very close to my parents, and I generally keep them informed of what’s going on in my life. On the other hand, I didn’t want to cause them undue pain. I myself found the initial diagnosis overwhelming, and I couldn’t bear to inflict that kind of suffering on my parents, both of whom were children of Holocaust survivors and carried plenty of that trauma with them.

In fact, my first thought after hearing the diagnosis was, I can’t reveal this to my mother. It will be too much of a burden on her. I envisioned myself as a disabled person in a wheelchair, and I knew that image would break my mother’s heart.

In the aftermath of my diagnosis, I had learned that multiple sclerosis — especially my form of it, a milder form known as relapsing-remitting MS — is no longer the debilitating, devastating illness it once was. While there is still no cure available for MS, in recent years medications have been developed to halt or slow the progression of the disease, and other medications are available that can mask most of the symptoms, allowing sufferers to function well and live basically normal lives. While I was comforted to hear that I could still go on with my life despite MS, I feared that my parents would not be able to find similar comfort. To me, MS was a manageable condition; to them, I knew, it would be a catastrophe.

Had I lived near my parents, I would have unquestionably shared the diagnosis with them despite the anguish they would have experienced as a result, because it would have been far too difficult to hide my symptoms. By the time I was diagnosed, I had been suffering from tingling, numbness, dizziness, fatigue, and other neurological symptoms for quite a while. At first, doctors thought these symptoms were an autoimmune reaction to a viral infection, but after I experienced several acute attacks of dizziness and numbness that landed me in the hospital, they determined that I was suffering from MS.

While I did tell my parents about my symptoms and the initial diagnosis of an autoimmune reaction, because I lived so far away, I was able to downplay the severity of these symptoms and reassure my parents that I was fine. Had they seen me regularly, however, they would have realized that something more serious was going on, and I would have had no choice but to tell them. I would probably have told them anyway, since they could have helped me by watching the kids when I was in the hospital or by keeping the house running when I had to spend the day in bed.

From a distance, all they could do was worry. And worry they would — especially my mother. No matter how much I might reassure her, from a distance, that I was fine, she would never be fully convinced. Not seeing me on a regular basis, she wouldn’t believe that overall, my house was running nicely, my children were happy and taken care of, and I myself was functioning well. Yes, on days when I felt weak, dizzy, or in pain, I couldn’t maintain my usual standards, so supper came out of a package, the floor didn’t get cleaned, and laundered clothing went into the drawers unfolded. But wasn’t that the case in many other busy houses, at least once in a while?

Excerpted from Mishpacha Magazine. To view full version, SUBSCRIBE FOR FREE or LOG IN.

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