It’s hard for me to say when I became fully aware of my mother’s MS. I understand she had symptoms either when she was pregnant with me or shortly after—visual symptoms. She would have been 29, with four kids, and a husband who was becoming increasingly unstable. Within a few months of my birth, they would leave their house in Philadelphia behind and move in with her father back here in Winthrop. I can only imagine how frightening it must have been.
Sometime in grade school, I remember my mother bought this awful hardcover book called Symptoms. It was a big, thick, red hardcover, and was the world’s most efficient path from the most benign symptom to the horrors of the human body. Have a headache? Could be a brain tumor or a stroke or a cerebral hemorrhage. It could have just been a headache, of course, but I sat with that book open in my lap for hours, reading up on every heart disease, cancer, diseases of the skin and kidney and liver. Simple things like toe fungus and ear infections did nothing for me. I was after the big game.
My mother was having hearing symptoms at this point, tinnitus, and balance problems. I was probably 11, and my mother would have been about 40. She never talked to me about it—maybe to my oldest brother or my sister—but I was the youngest, and we wouldn’t talk openly about it until maybe ten years later. We were walking near my off-campus apartment, and I must have shown my exasperation with her not keeping up, because she finally stopped, grabbed onto a pole, and half-yelled, half-cried, “I am sick you know.”
I think when I was 11, my mom was looking for some route out of the diagnosis that she probably knew was coming. Her sister-in-law—my Dad’s sister, my favorite, Aunt Jean—already had MS, and markedly so. The family doctor had said something about Meniere’s Disease, a troubling but far more benign problem of the inner ear that can cause the same symptoms. We latched onto that, even after my mom went in for some tests.
I honestly don’t blame my mom. I probably would have clung on to some combination of hope and denial. Looking back, I think my mom was driven by the job she felt she had to do—which was to raise us to adulthood. She had taken on being a single mother, gone back to school to get a better teaching job, taught summer school for extra money, and steered us through childhood and adolescence. Maybe she worked out a timeline. In something like 11 or 12 years we would all be through college, and she could give in to whatever was coming her way. But not then—not with so much work ahead of her.
If my memory is correct, the first really scary thing for me happened when I was 15. It was a winter day, snow and slush were underfoot, and my mom came home from the supermarket. I came out to help her bring things in, and was a few steps ahead of her when I heard her cry out. She had face-planted, badly. I had never seen my mother cry before, never seen her bloody, but she was cut from the scalp to the cheek. I turned her over, and bolted into the pharmacy next door, where I also happened to work, yelled for them to call an ambulance, and grabbed boxes of gauze from a shelf.
A few minutes later, the ambulance was there, they tended to her, and whisked her off. I was left standing on the sidewalk with a cop who offered me a cigarette—a Lucky Strike it turned out—and he drove me to the hospital. He told me I did a good job, and maybe I did, but I suspect he was just being kind.
That next summer, 1975, was when the illness really broke through for the first time. She was bedridden, vomiting, her head spinning. She would tell me years later that her legs had almost no strength. I don’t remember helping her to the bathroom or anyone bringing a bedpan, but at some point she went to the hospital, and stayed for a few days. She came home stable, the strength back in her legs, the vertigo gone, but she was deaf in one ear and the tinnitus was roaring. We still didn’t speak aloud about it, but there it was, right in front of us.
Years later I mentioned this summer, one by one, to each of my siblings. I was sure I did it all for my mom that summer. That I was alone in the house with her, bringing a basin for her to throw up, sitting with her, reading to myself, or watching the Red Sox on the nearby TV. I had never felt so alone in my life and rarely have since. But then each of my siblings said the same thing, and each of them was mad at the rest of us for not helping out. A younger me would have been defensive, and I probably was at the time, but I have come to see our perspectives for what they are. We were all correct in our memories. We were all alone in our own way, and I don’t doubt that my older siblings did more, including my sister, who was a young mom and was already symptomatic with MS herself or soon would be.
My mother might have finally concluded what she was up against, but she still had a job to do. Only my oldest brother was truly launching. He would have been in college. My sister was a young mom and things weren’t stable for her. My other brother would have quit college a semester before (he would return a year later and finish). I was still in high school. This was not where my mom had planned to give up the ship.
She rallied, in a way that I would come to really admire about my mom. She knew she had to be ready for school in a few weeks, and she was suddenly half-deaf and would be facing a classroom full of fourth graders. She did not want to do a hearing aid. I think she was a little vain, but more important to her was job security. She did not want to show any frailty in work, figuring—and probably correctly—that the whims of a school committee were treacherous. So she got some therapy, learned some techniques for adjusting for the deaf ear, and started to learn to lip read. I don’t think she ever could lip read, but I think she learned enough. She would teach for eleven more years, and would never use a hearing aid in the classroom.
Those of you who know MS will recognize that my mother originally had what is called relapsing-remitting MS, which is what it sounds like. It came and went. I am guessing it first came when she was 29, and come in different ways until that bad summer of 1975 when it came in the biggest way thus far. My mother would tell me years later that the first symptom that scared her was weakness in her legs. How partial blindness at 29 didn’t scare the shit out of her is beyond me, but this was her illness after all, and not mine.
I will write more about this at another time, but in some ways my mother did well with the disease. She taught fourth grade until she was 56, and could have done less strenuous work after that, but she was remarried and would have a pension and the income from the two-family house she owned. She had planned well, been frugal at all times, and my stepfather would work for another ten years, then retire with his own good pension.
Even more important, though, was that my mother’s job was done. Not her teaching, but raising us. My brothers and I were done with college, my oldest brother done with law school as well. My sister was in the early stages of her own MS, but she was in nursing school, and living upstairs from my mom. Things weren’t perfect, but my mom had done what she could do. She could rest.