At the age of three my parents noticed that something was wrong. Because the doctors had no clue what it was, they ignorantly called it “muscular dystrophy,” a purportedly incurable genetic disease. The illness left me weak, thin and stunted, both physically and emotionally. For most of my life I believed there was nothing I could do but live my life, as my body slowly degraded into nothing. Like many others, I fell for the trap of fatalism and fabricated helplessness. I became one of the multitude of mice who ran toward the processed cheese that lay so persuasively on the spring-loaded mechanism, and before I could even complete my first tug the spring had sprung and my head was separated from my body. Without a head I was as suggestible and programmable as an automaton, without independent thought, forced to completely rely on physicians to answer questions about what I was capable of. I now know that they are miserably unqualified to answer those questions, for me or for anyone else.
Indeed, that moment of decapitation was the moment I became an unconscious slave to the nihilism of the modern medical complex. I was addicted to mindlessly obeying the dictates of medical orthodoxy and its physician purveyors, who, more often than not, revealed themselves to also be quite mindless. It took an unexpected traumatic experience to finally awaken me from my coma of servility. I learned to trust my body, trust my intuition and trust that I had the courage to navigate the distractions, diversions and detours of the road to health less travelled. In the end, organic food became indispensable to my journey.
My Abusive Relationship to Food
As a child, the marriage between food and health was not a part of dinner conversation. We more or less ate a standard American diet, with a salad, a dose of cod liver oil and a multivitamin thrown in. As I grew into adolescence and into my twenties, I considered the importance of nutrition even less, as my body grew weaker and weaker. Nights at university were consumed with five-dollar half-chicken and rice delivered by the local Chinese food restaurant, or five-dollar pizza (probably delivered by the same Chinese food restaurant), all drowned down with a cola from a non-descript can from some non-descript company. The food in the dining hall wasn’t much better, and I continued to gorge on it, even as it became more and more difficult for me to lift my dining room tray and place it into one of the narrow horizontal slots in the large tray receptacle in the front of the room. Often in solitude, and always in embarrassment, I was forced to either leave my tray of half-eaten food alone on the table for a cafeteria worker to remove.
During law school in Washington, D.C., my eating and health grew worse. Each Friday, after a long week of classes, I would venture to the mall and “reward” myself with (you guessed it) Chinese food. It was a delectable a combo plate (actually a Styrofoam container) of General Tso’s chicken, orange chicken and fried rice, all drowned down with a nauseatingly phosphorescent green liquid in the largest size cup available. Things were becoming more difficult. For example, when I gave my law journal Editor-in-Chief election speech I began to feel a fire in my lungs, get light-headed and dizzy, and almost pass out. Rather than wait with my peers for the results of the vote, I retreated to the student lounge so that no one could see me struggle to recover. I won the election, which, at the time, I thought to be a monumental achievement. In hindsight, and in all of the ways that matter to me now, I know that the victory was a pyrrhic one.
A few years later, during my Ph.D. studies in Philadelphia, I continued my Friday ritual, replacing Chinese food with pizza, buffalo wings, food-cart cheesesteaks and hoagies, and food-truck Indian food straight from the can. In 2005, I ate some under-cooked chicken from a Jamaican restaurant and began throwing up. After a day, I thought the illness had ended. I was wrong. The deterioration of my overall condition began to accelerate, manifesting in increased muscle weakness, chronic fatigue, and a profuse uncontrollable sweating. I did my best to hide it from everyone, either carefully orchestrating or simply avoiding any social interaction in which my symptoms might be made apparent. I felt alone and depressed and was in complete denial. Somehow I managed to finish my coursework and pass my comprehensive exams. Again, those victories were pyrrhic.
From Devastation to Revelation
In 2008, I was a volunteer attorney at a local public interest law firm when I received a phone call from my neurologist. All afternoon I sat patiently in a small, dim, cluttered closet of an office waiting anxiously for the call. The test results were in and the conclusion was clear. My body had become so weak I could no longer swallow safely. I was aspirating into my lungs every time I ate, causing recurring episodes of pneumonia which were only exacerbating my condition. I would no longer be able to eat or drink. I sobbed, in devastation and in private. My last meal was on June 2, 2008 – salmon, macaroni and cheese, and cornbread from the local supermarket. For the next few days before my feeding tube surgery I drank only protein shakes the color and consistency of dirty wallpaper paste. After the surgery I stared in disgust at the new plastic appendage protruding mockingly from my abdomen, and glared in distress at the nauseatingly phosphorescent green bile that filled it.
I was prescribed a calorically-dense pre-packaged processed enteral formula as my sole source of nutrition. I had to plug into a machine every night for 14 hours, from 7:00 PM to 9:00 AM. As soon as I began using the formula, my health began to decline at an exponential rate, which I feeble-mindedly attributed to the natural course of the disease. When the machine’s alarm blared in the morning, I would unplug and begin my tube unclogging ritual. The formula was so viscous it would clog the tube, and I, in my terribly weakened state, would rise from the couch, place the length of my feeding tube on the counter that separated the living room from the kitchenette, and spend up to an hour mashing the clogs out with my elbow while tears filled my eyes. I was urinating twice a day and moving my bowels once a week. I continued to lose weight, lose coordination and lose myself. I still clung to the belief that there was nothing I could do but get sicker and sicker and eventually die, even though my intuition was whispering something different.
In desperation, I flew to Nanjing, China for stem cell therapy. Not only did the stem cell treatment fail (I now know why), but I could have easily died from pneumonia I contracted while there, not to mention a severe bout of kidney stones. However, the trip was not a complete failure. While sick in bed, and with polite Chinese nurses watching over me, I had a revelation. In that moment of sickness, I knew with absolute certainty that the doctors were wrong. I knew that it wasn’t muscular dystrophy and I was going to prove it. Once I returned to the home, I decided to start from scratch and, matching my constellation of symptoms with results from online searches and medical literature, I compiled a list of the universe of possible illnesses I could have. I probably spent more time reading medical literature than I did reading for my doctoral dissertation. It was time well spent.
Taking my Control Back
After countless tests and misdirection (and sometimes outright lying) by several physicians from many specialties, I finally found the answer. I was right. It wasn’t muscular dystrophy. It wasn’t genetic. It was infections, that I had somehow contracted during childhood and over the course of my life, and that had led to the onset of several, sub-acute food allergies that caused inflammation. The inflammation primarily affected my nervous system and metabolism which is why I was always uncoordinated, weak and skeletally thin. This discovery came in July of last year, at 38 years of age. And why did my deterioration accelerate after I started using the feeding tube? It happened because I was having severe allergic reactions to the chemicals, preservatives, pesticides and gmo in the processed enteral nutrition formulas the doctors had been prescribing me. The moment I made the correlation I felt like a fool. Every time I ate that Chinese food I was killing myself. Every time I ate wings and pizza I was killing myself. Every time I plugged into my feeding machine I was killing myself. My Friday rituals of reward were actually rituals of destruction. I was actually – albeit unwittingly – being complicit in my own death.
Early in 2015, I had food allergy testing conducted and began slowly switching from my prescribed formula to an organic diet. The results have amazing. I had more energy and strength. Many of the “minor” allergies – skin issues, hair falling out, bleeding gums – have gone away. The staples of my diet are now kombucha, dandelion greens and kale, which are helping me eliminate my almost four-decades-old infections and repopulate my gut with good bacteria. Because my allergies are so extensive, recovery has been slow and uneven, and my metabolism has not yet normalized. However, there has definitely been progress and I know that a full recovery is possible.
Don’t be a Reverse Samurai
The Japanese term seppuku describes the ritual of abdomen cutting performed by a samurai in conformity with the dictates of Bushido. It is performed with a short blade called a tantõ. Seppuku is an honorable death. For most of my life, I had been a samurai in reverse, engaging in a sadistic, gluttonous performance, partially motivated by shame, partially motivated by escape and partially motivated by willful blindness. My ritualized reward of processed, preserved “food” was, quite literally, a short, sharp chemical cocktail dagger, plunged repeatedly into my gut, killing my good bacteria, killing my spirit and killing me. Unlike the samurai, there was absolutely no honor in what I was doing. With every bite or gulp I became mired deeper in abject dishonor. My organic, plant-based diet has removed the dagger from my hand and replaced it with a needle and thread. It may take years for me to sew up my wound and for it to completely heal, but I know for certain that the bleeding has stopped. The scar that will remain will be a symbol of honor to my body and spirit.