When I was 24, I was diagnosed (via genetic testing) with a somewhat rare genetic disorder that predisposes me toward gynecological and colon cancers, among others. It was a bit of a shock, even though I knew these things ran in my family, and I was rather bummed out about it for some time. We come into our lives, for the most part, thinking of our bodies as infallible. For a young person in the 21st century, more than ever, sickness and death seem like things that happen elsewhere, to someone else; we plan to live forever. When we are faced of our own mortality, it can be terrifying. And I was terrified.
Over the years, however, I got over my fears and got my first colonoscopy last September. Low and behold, results came back positive for colon cancer, and the rest of the fall kind of sucked big-time. The good news is that the cancer was small when they found it, and chances were good that they removed everything during that first procedure. The bad news is that the cancer was aggressive, and, due to my genes, a slew of second-opinion doctors recommended I have surgery to remove some or all of my colon, just in case.
I decided to keep some of my colon–I’m only 30 years old, and although one can live without a colon, chances are good that removing it would significantly lower my quality of life. Instead, I decided to go ahead and have a smaller piece removed, along with some lymph nodes, to be sure the disease hadn’t spread. So, on the 2nd of January, while most folk were revelling in a snow day, I spent four hours in surgery at Mass General Hospital.
It’s strange to learn you have cancer, no matter what your age, and in many ways I was more prepared for this revelation than I had any right to be. I knew there was about an 80% chance I’d get either colon or endometrial cancer (or both) at some point in my life, but it still hit me hard. Having cancer once raises the likelihood that I will get it again, and under these circumstances it’s hard not to think of oneself as fatally flawed. I have always imagined living a long, healthy life. Don’t most of us imagine living long, healthy lives?
I am surrounded by healthy family members who have aged incredibly well: my great-grandmother lived to be over 100, and her daughter (my grandmother) is well on her way up there at 94. My other grandparents are in their late 80s and going strong. My parents are young sexigenarians, and I’ve enjoyed watching them embrace their empty-nest with energy and enthusiasm: they have a great social life, an active volunteer schedule, and run their own business, all while still somehow having time to cook fabulous meals every night, attend museum openings, go out to the movies at least once a week, and go on regular vacations with their grown children. They aren’t even retired yet, and their lives are already way more interesting than mine.
These are the things I’ve imagined in my future, after children (more than one) were fledged. And there is still a good chance that these things may come to pass. I still picture myself with grandchildren.
But there has been another, less happy model in my life, as well.
My husband’s mother was diagnosed with breast cancer when he was in high school. Although the disease was in remission for many years, it came back shortly after I met him, in 2003. For the entire time I knew her, she was sick: on medications that made her allergic to flowers, trees, dust, and seemingly all the food she cooked for her family. She was overweight and fatigued all the time–a very slender woman in her youth, she became big and ungainly, her feet hurting when she walked any distance, her petite body plagued with cramps and arthritis. In the end she wasn’t herself: she seemed hardly a person at all, wracked with pain and prematurely aged. She passed away three years ago, after decades fighting this disease. Her life was beautiful and precious–she was surrounded by a large and loving family, and too many friends to count–but at the end it seemed a nightmare.
I am afraid of death; I’m not afraid to admit it. But more than death, I fear a life defined by disease. I am not sure I have the strength to withstand the siren call of self-pity, or the fortitude not to give up hope when obstacles seem insurmountable.
When I decided to have surgery, word of my illness started to get out among my friends and extended family, and I received calls, emails, notes, and a multitude of other well-wishing. My eldest aunt (who looks at least a decade younger than she is–I hope to god I got those genes) called me one day. She told me she so sorry I had to go through this thing, and that it sucked, and when she had breast cancer she had thought it was the end of the world. “But you know,” she said, “if I got it now, it wouldn’t be that big of a deal.” And all I could think was: she had breast cancer?
I never knew. Or maybe I did. Maybe my parents told me and I have blocked it from memory.
My aunt is from the older, English-French side of the family, New Englanders for more generations that I can count, and although they are some of the craziest, most fun people I know, there is a propriety that runs through them all, upheld and abetted by the matriarch, my grandmother. With propriety comes taboo; along the lines of “if you have nothing nice to say, say nothing at all,” there was an unspoken understanding while I was growing up that unless we could help you (say, move our car off of your foot), we didn’t especially wish to hear about your infirmities.
We all go about upholding this taboo in different ways. Taking after his mother, my father gives the epithet “stiff upper lip” new meaning: I used to think he didn’t believe sickness or disease existed. Now, however, I suspect he’s just violently uncomfortable about it, and reacts accordingly. My sister, on the other hand, is of the opinion that health can be earned through veganism and yoga, or paleo and marathons, or Dolce and Gabbana… one of those. Either way, good health and happiness are things that come to those who work for it, and if you don’t have it you must not be working hard enough (she didn’t inherit the Killer Cancer Gene, btw).
I am as guilty as the rest of us in this regard: perhaps from lack of practice, I don’t know how to react when people tell me about their health problems. Even the mention of illness makes me squeamish and uncomfortable. Worse, to my great shame, I find it all incredibly boring. I usually respond with an awkward “oh, I’m so sorry,” and then try to change the subject as quickly as possible.
When my aunt mentioned her cancer, in that off-hand, playful-yet-comforting way, it threw me for a loop. Here was a woman who had experienced countless hardships in her life–medical and otherwise–and had done such a good job hiding them, I didn’t even realize they existed. But rather than scoff at this (as I might once have done) as typical New-English soul-crushing self-restraint, it filled me with great joy: here was a woman who would not be defined by any illness.
The more I look around me, the more I see people I love and respect who are flawed in the ways that I am flawed: a friend diagnosed with polycystic ovarian syndrome, another with kidney problems. My mother has had (and beaten) both endometrial and thyroid cancers. These people are strong and proud and live their lives as if their fallible bodies matter not at all.
Another of my aunts wrote me a letter that I received more than a week after my surgery, after we’d arrived back home and picked up our mail. “This all sounds like rubbish, in a way, because it still stinks,” she wrote, “but the bottom line is you are not alone.”
It doesn’t sound like rubbish at all: the most heartwarming, hopeful, beautiful part of all this is that we are not alone.