Image by 'PixelPlacebo' via Flickr
Before my diagnosis, I might have been the last person you'd have expected to not crumble under the relentless hammering of progressive Multiple Sclerosis. I was quite the neurotic, and although I'd made much progress in learning how not to be self-defeating (with the help of a few decades of therapy) and was able to function at a high level both socially and professionally, the inner Marc waged a perpetual battle at keeping my natural anxious tendencies in check. At work I was somehow always calm in a crisis, and perhaps this was a harbinger of how I'd react to a true personal calamity, but my emotional past was littered with quite a few messy episodes following heartbreaks and other blows to the ego. Whenever I would obsessively imagine myself getting a dire medical diagnosis, the scenario in my mind did not end well.
In puzzling over the contradiction between my expected emotional reaction at being confronted with a serious illness and the reality that has come to pass, I know that I grew up with a role model to whom I owe not only my relative emotional stability in the face of chronic illness, but also life itself: my mom. Mom developed type I diabetes while she was pregnant with me, and unlike most cases of gestational diabetes, my mom’s did not go away after she gave birth. At the age of 23, with her first (and, it would turn out, only) child as much of a handful as any infant, my mom also had to deal with a potentially life-threatening illness that not only required the mental toughness to make sweeping lifestyle changes, but to also give herself two injections of insulin a day. In fact, the disease changed the very act of birth itself, as due to her diabetes I had to be delivered by cesarean section.
My mom and dad divorced when I was three years old, and for much of my youth I often felt like it was me and mom against the world. My dad was always there for me, and I spent most weekend days and one evening a week with him, but in my day to day life it was Marc and mom, through sunshine and storm. I honestly don't think I ever saw my mom let her disease get her down; in her chest beats the heart of the lion (an occasionally goofy lion, but a lion nonetheless). Growing up, watching mom inject herself with insulin twice a day seemed no stranger to me than eating breakfast or getting tucked into bed. I remember often playing with mom's syringes, sans needles, taking them apart, using them as little squirt guns, and generally including them in my huge collection of toys.
My mom is a bit of a character, and soon after the divorce, we moved in with my grandmother and aunt, who were quite colorful in their own right. There are many adjectives that can be used to describe my family, but boring is definitely not one of them. My grandmother was 4'11" full of piss and vinegar, a chain-smoking scallywag with a well-earned gravelly voice and mischievous streak wider than she was tall. My aunt was (and still is) quite the fanciful character as well, ill at ease in the real world but exceedingly comfortable in an alternate reality filled with plot lines taken from long forgotten movies and flights of whimsical imagination that the little me found thrilling. In my aunt's world, almost anything was possible, from the power of magic incantations to the notion that a super robot was due to arrive at our little apartment by special delivery any day now, an illusion that I faithfully believed for several years, despite the fact that no robot ever showed up at our door. No matter, the anticipation of the robot was a thrill in itself. We might have been decidedly lower middle class, but I bet most of the kids on Park Avenue didn't spend several years in breathless anticipation that Gigantor (click here) was about to be their best friend.
As I grew older, life with mom did not always follow the path of least resistance. She remarried and we moved away from my aunt and grandmother, though they remained a large part of my life. Mom's second marriage, to a man I never really gave a fair chance, petered out after a few years, and once again it was just the two of us. During her second marriage, mom was felled by two diabetic comas, during which she was hospitalized for extended periods of time. Though I knew that mom was very sick, I was, at age 9 or 10, never told the gravity of her situation, which at times was quite dire. I vividly remember coming home for lunch one afternoon when I was in the fourth grade, on a day that mom had returned from the hospital after one of her coma episodes. When I walked in the front door, mom fell to her knees and hugged me close, sobbing. Despite the often tumultuous nature of our lives, and my mom's own hardships, I think that instance may have been the only time I ever saw my mother cry, and the tears she shed were those of joy. She had been so sick she that thought she was surely dying, and would never see me again.
I wasn't an easy kid to raise, my emotional maturity never keeping pace with my intellect, and among my host of quirks was an extremely well-developed case of hypochondria. If there was a Junior Olympics for young neurotics, I would have easily won the gold in the hypochondria competition. By the time I was 10 years old I had wrestled with several cases each of hepatitis, stomach cancer, leukemia, and in one very dramatic instance, after getting hold of a copy of the novel Papillion, a frightful bout of leprosy. I wasn't a kid who kept such fears to himself, either. Mom was constantly pestered with my asking her to check the whites of my eyes for jaundice or my forehead for fever, and I drove her so crazy during my attack of leprosy that she finally took me to the pediatrician, who had himself quite a hoot over my self diagnosis. No, he assured me, my nose was not about to fall off.
One particular hypochondriac specialty of mine was brain tumors, and at least once a month I would plaintively wail, "Mom, I think I have a brain tumor!", to which she would always reply, in full sarcastic mode, "First you need a brain…" Then we'd both laugh, as was our ritual, and I'd tuck away my brain tumor concerns for another week or so. Looking back, maybe I wasn't such a hypochondriac after all. Perhaps I sensed that there really was something wrong with me, a something that finally manifested itself several decades later as Multiple Sclerosis.
We never had much money, mom almost never had the best luck in romance or business (although, despite her illness, she was an extremely hard worker), and she sometimes didn't make the best life choices, but through it all the memories of my youth are infused with an overwhelming sense of love and laughter. Mom's lust for life is palpable, and her charisma always assured that she would have a gaggle of spirited and wacky friends around to keep her company and join her for nights out on the town. One of the traits I inherited from mom is a love of the nightlife. She and her friends frequented many of New York City's 1970s hotspots, and although diabetes kept her from consuming alcohol, she invented a nonalcoholic drink she called a "Shmendrick", the recipe to which many a bartender around town made sure to commit to memory, lest they suffer the good-natured wrath of mom's fiercely loyal pals.
Even in the face of her sometimes debilitating illness and a life filled with hurdles, mom has never lost her sense of optimism, or her ability to laugh through adversity. A little diabetes was definitely not going to burst her bubble; it just gave her all the more reason to fight, and laugh, that much harder. Our apartment was always filled with music (mostly Streisand and show tunes, and thus my heterosexuality makes me living proof that homosexuality is a function of nature not nurture), with mom more often than not belting out lyrics as she washed the dishes or did other household chores.
At about the same time my MS started making itself apparent (2003), my mom developed Parkinson's. In the intervening years, we've both watched our mobility decline precipitously. Since mom lives in Florida, and I'm in New York, we've been able to physically visit with each other less and less with each passing year, as our illnesses have made traveling more difficult. Still, we talk daily by phone, and although at my best I handle my illness with a Zen stoicism, mom always manages to find the humor in our situations, often joking that between the two of us we couldn't come up with one good body, or that in a race across the living room we could be timed with a calendar. I know that my illness has taken a greater emotional toll on her than her own, and when clouds of doubt darken my horizon, hurricane mom is always just a phone call away, ready to blow those clouds away.
The combination of Parkinson's, diabetes, and advancing years still haven't been able to keep mom down, as she and her friends are frequent visitors to the restaurants and casinos that thrive in South Florida. Mom consciously taught me a set of essential foundational values, always stressing the importance of honesty, loyalty, and integrity, but perhaps the most important lessons I learned from her she continues to set by example, in the form of an indefatigable spirit, and the resolve to never let circumstances dictate your ability to experience joy.