HERE I offer my reflections on what it means to live with the loss of your mother and also to live with the knowledge that you might eventually be diagnosed with the disease that assaulted her body and ended in her death. The primary message that I hope to send to all of my readers is that it is possible, and even not too unpleasant, to live with memories of your mother's agonizing death and with radical uncertainty about the way in which you will die. For some of you, your thoughts will turn immediately to cancer. That is not my story. Mine instead is this.
In July 1989, after two months of medical testing, my mother was diagnosed with polymyositis, a rare muscle-wasting disease. She was ill for seven years, and as a result of complications from the disease or side effects of medication, she developed the following problems, among others: diabetes; glaucoma; cataracts in both eyes, with irreparable damage to, and blindness in, one eye; inability to walk or stand for seven years; recurring pneumonia; amputation of the right foot; occasional blood poisoning; trans-ischemic attacks (commonly known as "mini-strokes"); depression; severe weight loss; and extreme fragility of skin tissue. My mother died in April 1996.
Now, my mother knew in the spring of 1996 that she was nearing death. I am sure that she knew, because in what turned out to be the last week of her life she and I talked about her lack of fear and her sense of peace and we said goodbye to each other. Even that week, and throughout her illness, she communicated love to her family and she allowed us to take care of her in a way that we will remember for the rest of our lives. She was a woman of extraordinary courage. Her example is with me now.
And so is her genetic inheritance. I have my mother's freckles and her wavy hair, and my hair is even turning gray like hers. I am three-quarters of an inch shorter than she was before she became ill.
I inherited her left-handedness, her nurturing spirit, her love of language, and her hope, goal, and effort to be a good mom (in my case, stepmom). Whenever I attend the church in northern Virginia where my mother worshiped for roughly 30 years, women friends of hers tell me that it is uncanny how much I look like her. Of course, in some ways, we are different. I am good at math, and as far as I know, she was not. I can be good at speaking in public, if I work at it, and she was a quiet and retiring soul. She stayed married to the same man for over 40 years, whereas I have been divorced twice.
The key thing to say at this point is that I know that all of the ways that I resemble my mother make it more likely that I will inherit her disease. Do I know that I will develop her disease? No, of course not.
Can I say with any confidence that I will be spared her disease? No, of course not. As far as the medical researchers can tell, polymyositis has two causes, both of which must be present for the disease to emerge: a genetic component as the underlying background condition; and a virus as the triggering mechanism that acts on the genetic component and sparks the cancer-like rapid growth of antibodies that in effect eat away at all the muscles in the body (including such organs as the heart), leaving dead tissue in their wake.
Just in case you're wondering how I know these things, let me note that from 1989 to roughly 1993, I made an investment in learning about idiopathic inflammatory myopathies (the class in which my mother's disease is placed), because I was trying to understand the alternatives in experimental treatments for the disease. Once I succeeded in getting my mother included in an NIH study protocol, I stopped reading such journals as the British Journal of Rheumatology; she was finally receiving effective treatment.
This admittedly very limited knowledge of the medical literature reinforces my radical uncertainty about whether I will get my mother's disease.
During one recent winter, I underwent two months of medical tests for symptoms consistent with polymyositis. The diagnosis, thankfully, was fibromyalgia, a syndrome that causes chronic muscle fatigue and pain, which I manage with moderate exercise and the occasional ibuprofren or Tylenol. The next time that I develop such symptoms - if there is a next time - what will the tests reveal? I don't know and I can't know, of course. I have to live with radical uncertainty about the conditions under which I will die.
But that's the case for every single one of us. One of the former ministers in that church where my mother worshiped for 30 years once included in a sermon of his a memorable statement along these lines: "Some of the funniest sentences possible start with the phrase, 'If I die ...' If I die! There's no uncertainty about that event, folks. None of us is immortal. All of us are mortals."
Again, I don't know how I will die. It might be by polymyositis, it might be a car accident, and it might be while I'm sleeping next to my husband. Granted, the third option sounds best to me now. But if it's the first, in a strange way I won't mind. It's not that I'm masochistic or that I believe that pain and suffering are somehow good for you.
No, it's something different. I said it once and I'll say it again. During the week that my mother died, and throughout her illness, my mother communicated love to her family and she allowed us to take care of her in a way that we will remember for the rest of our lives. She was a woman of extraordinary courage. Her example is with me now.
If a stroke of terribly bad luck and my genetic inheritance give me polymyositis, I will have the chance to try to live up to my mother's example. I will understand better what she went through. I will understand better what my father experienced as he took care of her for those seven long years. And those thoughts are rather comforting.
It's a comfort - although also strange and unreal, at least to me - to contemplate dying in a process that brings you closer to the parents whose deaths have preceded yours.
So, my bottom-line message: Be not afraid. We must all live with uncertainty, the death of our loved ones, and the prospect of our own death. We can live with those things, and we can find meaning and joy in them.
(Carol Mershon is a Professor of Government and Foreign Affairs.)
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