During the December holidays I found some time to read a few books, one of them being The Man Who Couldn’t Eat by Jon Reiner.
The Man Who Couldn’t Eat is a memoir based on a story of the same title Jon wrote for Esquire which won the 2010 James Beard Foundation Award for Magazine Feature Writing, was nominated for a National Magazine Award, and was translated into multiple languages.
Jon has had Crohn’s since he was 20 years old, and in The Man Who Couldn’t Eat he writes about his life-threatening experiences in a humorous, non-enteric coated storyline, filled with flashbacks of Katz’s deli pastrami sandwiches, and the irony of being deprived of one of the great pleasures in life.
Jon was kind enough to answer some questions for Comfy Belly readers.
I found it quite cathartic to read your point of view, having been in the caretaker’s seat for so long. My son was sick at the age of 6 (he’s 17 now), but it wasn’t until he was 12 that he was diagnosed with Crohn’s. Some of the events he remembers, but he has blocked out many of them, especially the more “catastrophic” ones. How have you managed the stress of illness, NPO, diets, and dealing with a myriad of doctors? Are you ever fed up?
During the episode of acute illness that sparked me to write The Man Who Couldn’t Eat, one of my very wise doctors said to me, “Living with chronic illness means living with uncertainty. That’s your lot. You can either accept it and move forward or let it imprison you.” He was right, and I do find that the hardest part of living with illness has been accepting the inevitability of uncertainty. Nothing is more frustrating than doing everything right for your health, yet still winding up sick. So, I confess, my level of acceptance has not evolved to its fullest. I seem to inhabit two worlds psychologically: When the illness is active, there’s no escaping the presence and constant managing of symptoms. When the illness is quiet, I put as much distance between it and my mind as I can. That’s a form of functional denial that I don’t think is terribly wrong. No one wants his life to be consumed or dictated by illness and the limitations that it imposes. I have ambitions and goals that I haven’t stopped pursuing despite the health issues I have to manage. And I know many people whose determination trumps challenges far more severe than my own.
There are many experiences in which you are deprived of pleasures and let’s face it, food is up there as one of the ultimate pleasures. I used to tell my son that, hey, in the end you’ll be healthier by not living on HFCS and processed stuff. But that’s not full-proof with Crohn’s. It can be a deceptively sneaky little condition. Has changing your diet helped you?
Food Eating is the body’s second-greatest pleasure, and I am a pleasure seeker. In the months that I was in a Nothing-By-Mouth situation, I missed the pleasure of food — flavor, taste, satisfying cravings, the joy of sharing — as much as the sustenance. For various reasons — diet, health, cost, geography — most people make food choices that weigh pleasure against other considerations; my situation just happened to be more extreme, one which crystalized the existential conflict that is embodied in our relationship with food. During my recovery and return to eating, I attempted to adopt a strict macrobiotic diet, having been advised by a nutritional coach and friend about its health benefits. Like all diets, it required complete adherence and discipline, and I managed it for a while until I chose to keep what I was enjoying and what was practical about this particular macrobiotic approach and add to it the many other foods I missed and loved. As my supermarket cheesemonger said to me, “You have to live.”
“You are what you crave” – I thought a lot about this since I crave sugar and veggies, and occasionally eggs and cheese. So it seems to balance itself out, but with Crohn’s the balance seems to be elusive, or at least a very long hall when you try diets. What keeps you going? Besides your great sense of humor? Does it seem elusive to you?
I’m glad that “You are what you crave” stuck with you. The phrase, my variation on “You are what you eat,” didn’t occur to me until later in the writing, but it then opened-up the narrative for me. I should have it printed on T-shirts. If anyone is interested in co-marketing, just give me a call. While it’s true that the balance between craving and sacrifice can be trickier for someone with an autoimmune condition, I believe that all people live lives that pivot between the two. Fortunately, most of the time, the ramifications of the balancing act don’t present themselves as life-or-death mandates. However, it was interesting to hear what Christopher Hitchens had to say about his cravings, before he passed away last year. When asked if he would still have chosen to smoke and drink if he’d known to what degree his habits would shorten his life, he said, “yes.” Not only did his habits bring him great pleasure, but he believed they also fueled the life and work he loved, without which, his life would have been unhappy. I’m not a smoker or much of a drinker, but I can understand his point of view.
I found it amusing that you were told there will be a cure one day. We recently heard the same thing from a doctor at Children’s Hospital. Today the drug menu is a bit longer than when you were first diagnosed, but the same categories exist and the side effects too. Are there any drugs that have been effective for you and were you on drugs when you experienced your emergency?
Yes, I was 20 when I was diagnosed with Crohn’s disease and was told by the world’s leading physician that there would be a cure discovered in the next 20 years. Without confessing my age, let me just say that we’ve gone into overtime on the doctor’s timeclock. Unfortunately, the only drugs that have been effective in my case have been limited to the few that I’ve taken during periods of severe illness and hospitalization, that have helped nurse me back to better health, but they are short-term solutions. None of the so-called “maintenance medications” have ever benefitted me; I have tried them all and was taking a maintenance medication when my emergency occurred. I don’t think there’s much to be gained from continuing down this road. If a cure is to be discovered, I believe it will come from understanding the specific DNA markers and how they are affected positively and negatively by diet and environment.
How are you now, and how’s the macrobiotic diet going? Have you made any other changes in your lifestyle?
I’ve been in relatively good health since the life-or-death situation of The Man Who Couldn’t Eat. Some of the internal damage was so severe that its effects appear to be lasting, but, overall, I’m well and am in a period of the positive healthy denial I mentioned earlier. Aside from the integration of some macrobiotics into my diet, the change in my lifestyle has been psychological. The challenges I faced before my emergency are still present in my life, but my view of their priority is much different now.