The Beautiful Vulcan Crucible of Getting a Feeding Tube
On June 2, 2008, I had my last meal. It was one of my favorites – a platter of salmon, macaroni and cheese and cornbread. The meal was in a plastic container and eaten with plastic utensils as I sat on the small concrete wall outside the Penn graduate dormitory I was living in while I completed my doctoral studies. I purchased it from the Fresh Grocer supermarket on 40th street on Penn’s campus. I had eaten the same meal several times before. I had sort of a weekly ritual – I would treat myself to a special meal for getting through another week of the rather rigorous Ph.D. program. One week it would be Indian food, the next it would be Chinese, then maybe Senegalese. For some reason this particular meal tasted noticeably less flavorful, almost artificial, almost like plastic.
Earlier that day, I received a phone call from my neurologist. I had been getting sick on and off for years and finally decided to have some tests done. Although I’d had a disabling neuromuscular condition since childhood, I figured it was no big deal but I wanted to make sure. When the phone rang I was somewhat tense but casually optimistic. “You might have to stop eating,” she told me. Her tone was detached and sterile. “We have to wait for the test results to be sure.”
I didn’t quite know how to process it. “What does that mean exactly,” I asked her, not really wanting to hear the answer. “It means you’d have to get a feeding tube.” I had no idea what that was and was terrified to look it up online. When I finally built up the courage to, I was disgusted by what I saw – photos of a long, clear plastic tube surgically implanted in a sick person’s stomach, hanging lazily like a satiated parasitic worm. That’s how I would be getting all of my nutrition. The whole prospect seemed dehumanizing. I mean, human beings “eat.” Animals – like jackals and zombies – or the undead – like vampires and zombies – “feed.” As the hours passed, my limp grip on my humanity was hanging by a painfully gossamer thread.
I had no idea what to do with myself while I waited to hear back from the neurologist. All I could do was stew in my small dorm room, fixated on how terribly my life might be about to change. I was gradually succumbing to the creeping reality that I had denied for far too long. Helplessness and regret were suffocating me.
I had to do something, so in an unbelievably irrational move I decided to drink only chocolate-flavored GNC protein shakes for the next few days. When I would take a gulp, I could feel a small glob splash into my left lung instead of moving downward into my stomach. I would soon learn this was called aspiration. It was the reason I would periodically become sick with flu-like symptoms and would sometimes wake up with a blindness that would last for a few morning hours. I couldn’t walk Chestnut Street all the way down to Center City Philadelphia like I used to, and it seemed like every physical move I made caused profuse sweating and an unprecedented anxiety. Things had been getting worse for a while and I was willfully blind to it. A crucible was approaching, its gravity was dizzying and inexorable, and it was threatening to destroy and remake my insular, neurotic fantasy world I had hidden in for so long.
On June 6 I got the call. I needed to head immediately to the Penn Presbyterian emergency department and have the feeding tube surgery. I called my family, then a friend and I headed to the hospital. A doctor tried to calm my nerves by telling me that feeding tube surgery is one of the most common, but believe me, for the patient there’s nothing common about it. The surgeon reassured me, “I’ll put it in, you’ll get stronger, you come back, I’ll take it out.” His matter-of-fact optimism touched me profoundly. Even after I woke up from the surgery, saw the thick yellow and green bilious fluid floating in my new tube, and felt the sharp pain from the incision in my stomach, I was determined to regain my ability to swallow properly.
After a summer of adjusting to the tube feedings back home in New Jersey, I returned to Penn intent upon finishing my degree and eating again. I had been religiously doing swallowing exercises, moving my tongue around my mouth to strengthen the muscles. To evaluate my swallowing function, I took a barium swallow test that September at Penn Presbyterian. I failed miserably. I was devastated and cried uncontrollably in the small courtyard outside of the hospital. I was still in denial. I even went a Wawa convenience store and bought a small cup of chicken noodle soup, just to give it a shot. I said a prayer and took a sip. As the hot broth trickled down into my left lung I descended into the depths of depression.
I subsequently spent many nights in my little Penn apartment angry and seething. I had to plug into a feeding pump for fourteen hours to get the required amount of nutrition. So every night I sat on the couch from 7 p.m. to 9 a.m. plugged in the dark while the people on the television watched me cry. All of my professional accomplishments were literally and figuratively going down the tubes. I had worked for the most prestigious law firm, won several leadership awards, had several government internships, was at an Ivy League university. I felt as though none of it mattered any more. My body and my psyche were disintegrating. I blamed the world for my misery. Why was I abandoned to fend for myself?
Night after night, I was being terrorized by the burning vicious creatures that dwelled in my own private purgatory. I was a Vulcan. Not a “live long and prosper,” Mr. Spock, Star Trek Vulcan, but a Vulcan who is a red-faced, ugly god cast out of his comfortable mountain abode, forsaken by his people and filled with vengeance, melancholy and self-loathing. I became filius nullius, an orphan, the child of no one. My new community was a community of one – plastic enteral feeding pump screwed on to a tall metal pole. It beeped when I turned its knob, and it fed me through the artificial silicone umbilical implanted one-and-a-half inches northeast of where my original umbilical was cut off. Although I didn’t know it then, in that dark, humid womb of a living room, I was being reborn.
In Roman mythology, Vulcan was the god of fire and the forge. He was the son of Jupiter, the king of all gods and Juno, the queen. Because he was born with a hideous red face, he was cast off Mount Olympus. He fell for one day and one night, until he crashed into the sea. The impact severely and permanently damaged his legs. He learned to take his frustrations out with his hammer, beating life into his metal creations. He must have been angry at everyone: he trapped his birth mother in a magical chair, split his father’s head open with an ax and could unpredictably cause volcanoes to erupt, imperiling the Roman populace.
He was the only physically imperfect god among a pantheon of beautiful and perfect gods. That’s how I felt for most of my life, imperfect and ugly, a feeling that long preceded any pulmonary aspiration or feeding tube. Since childhood, my muscles were wasted and my body very weak. I had been sufficiently physically functional; I could walk, run, etc, but never as well as the other children I judged myself against.
Like Vulcan, I was determined to transform my tragedy by manifesting my creativity. But unlike him, I had to relinquish my repressed rage and inwardly-directed volatility to achieve the essential optimal me that had been lost when I crashed to earth. Vulcan had largely failed in his crucible. I was determined to be better.
My nights on the feeding tube had been revelatory. I was prepared to exit my lifelong state of denial, and confront my fears and vulnerabilities head on. If I wanted to eat again, I would need to access my creative fire because as far as I knew there was no conventional treatment for my condition. I put together a plan to cure myself of my disease. I would travel to Nanjing, China, for umbilical cord stem cell therapy. One friend said, “are you serious? I don’t know, Rahman, that sounds dangerous. It sounds like a scam. You might want to think about that.”
I knew it was somewhat risky, but it didn’t seem extreme or extraordinary to me. It felt necessary. It felt right. Anyway, I had done my research and, worst case scenario, it would do nothing and I’d be left exactly where I started. I emailed a company in China, sent them the requested medical records, wired them the funds, and prepared for my trip with my mother.
After a 14-hour non-stop flight, we arrived on May 2, 2010. It was one of the best decisions I have ever made. Everyone at the Second Affiliated Hospital of Nanjing University was wonderful, from the chief neurologist who supervised all of my stem cell injections, to the grandmotherly cleaning woman who tried her best to teach me mandarin. I contracted a severe case of kidney stones while I was there, one that had me hobbling around the top floor of the hospital in unholy pain. And I almost died from a bout of pneumonia (it was my fault – I laid down flat and I wasn’t supposed to) that gave me a 103-degree fever and had me coughing up bloody mucous for several days. And there was the physical therapist – she had obviously never seen a Black person in person before – who said I looked like Kobe Bryant. And, yes, I felt somewhat uncomfortable with the gay Italian translator shaving my chest so that the leads to the EKG would adhere to my skin.
But the chief neurologist broke away from dinner with his family to rush to the hospital to graciously treat my kidney stones. And every nurse in the ward (who were all quite beautiful I might add) worked tirelessly to lower my temperature and wipe the sweat from my face. I guess Kobe Bryant and I are both Black, even though I’m much shorter, much lighter-skinned and never played for the Lakers. And the translator turned out to be such a giving, kindhearted human being whom I am unbelievably blessed to have met.
In the end, although the stem cell therapy helped tremendously, it did not cure me. But I did emerge from China reborn, with a strength of spirit I had never known. To this day, I am convinced I was a Buddhist monk in a previous life and my trip to China to receive the umbilical cord blood was God’s way of calling me home to receive the ichor of life from those hundreds of millions of primordial cells, and to be born again.
After returning from China, it took it upon myself to manifest my own reality, one reinforced by my own spiritual truth. My pilgrimage to China had been epiphanous. I had gradually come to understand that my life had been largely built upon a foundation of falsehoods, about my disability, about my sexuality, about my masculinity, about my self, and I had to do everything in my power to do something about it. I had to discover the truth about my disease because I knew full well at that point it wasn’t what my parents told me it was.
That journey took me through a gauntlet of marginally competent doctors who seemed to do their best to mislead or avoid me. One neurologist performed a genetic test and completely fumbled the interpretation. When I told him that I thought he was wrong and I was going to seek additional opinions, he told me, “Go ahead, they’re only going to tell you the same thing I’m telling you.” I sought three additional opinions, including one from a neurologist at the National Institutes of Health. They all agreed he was wrong. I should have known he was inept when he performed a spinal tap that was almost as painful as my kidney stones.
My next doctor was better, but still gave me a diagnosis that didn’t make sense. However, proceeding upon the veracity of her diagnosis, I found a drug in clinical trials that might help. She agreed to submit the requisite paperwork to the Food and Drug Administration but then blew me off for 13 months, refusing to return phone calls and emails. I was afraid to push her for fear she might stop helping me. I knew she had already decided the drug wouldn’t help me and that the only reason she decided to take my case was so she could publish a paper in an academic journal. I wasn’t human to her, I was just a tool she could use to advance her medical career.
After putting The Pharcyde’s “Runnin’: Philippians Remix” on repeat to motivate me to act, I decided to do whatever it took to get that drug. I told my family members to leave messages on the doctor’s voicemail. I contacted my state senators and asked them to call her. I contacted my member of the U.S. House of Representatives and had his office call her. I emailed senior members of the hospital administration and told them of her dereliction of medical duty, and her incessant intransigence in the face of my many pleas to get the trial going. A previous me would have never done those things.
My plan worked, and unsurprisingly, she was none too happy about it. When I met her in her office to receive my first dose of the drug and she yelled at me because the Chief Operating Officer called her into his office for a “chat,” I wore a quiet smile across my ugly red face. I held no animus toward her, and I believe that deep down she respected my relentlessness. Everything I did had nothing to do with hating her. It had everything this to do with loving myself. It was about breaking the perverse dynamic of conjuring an adversary upon which to project my Vulcan disability hatred, whether that adversary be a parent, a doctor or humanity writ large.
The drug didn’t work, but I know now that it didn’t matter. The true victory wasn’t in a cure from that drug. The victory was over the un-god-like vicissitudes of my own old Vulcan self.
After realizing I had hit a medical dead end, I decided to largely forsake conventional medicine and go an alternative route. I got rid of my old genetically-modified Abbott Labs and Nestle formulas – which unbeknownst to me were actually exacerbating my condition – and replaced them with organic fruits and vegetables. I tried anabolic steroids and testosterone therapy that I was prescribed by a Florida anti-aging clinic. I tried antibiotics, antifungals and antiparasitics (I know they worked to some degree because of the five six-inch worms and the 20-something two-inch worms that landed in the toilet). I tried every nutritional supplement, vitamin and mineral injection, kombucha, kefir, miso paste and sauerkraut juice. I even tried Siberian pine nut oil, government-unapproved subcutaneous synthetic human peptides, bovine colostrum and human breast milk. The radical spirit within me was taking firm root and its fruits were sweet and satisfying. With every success and with every failure I could feel myself healing – spiritually. That small Penn apartment had become my laboratory and my cocoon.
At the same time I was experimenting with my alchemical nutritional concoctions, I was working to complete my dissertation on the sexy subject of constitutional precommitments to affirmative action. My advisor didn’t believe I could finish – he told me so later. In 2007, one professor confided in me “academia is coming around to gender issues. It’s even getting better with race. But it has no idea what to do with disability. They’re not going to know what to do with you.” Her tone was sympathetic and direct, and her sentiments reverberate within me to this day. She was right – few people there knew what to do with me. I was saddened but undeterred. Somehow, and with the help of my most angelic friend, I managed to do the research and make the edits necessary to have a defense scheduled for November 2015.
By that time, my health had deteriorated so much that I could no longer walk and was very weak, so the defense was to be held in my apartment. I had three of my closest friends on one side to cheer me on, and my three committee members on the other side to oversee my initiation into the doctoral fraternity. I was peppered with questions for an hour and a half and answered them as best I could. I knew that speaking for an extended period of time would make me dizzy, but I had to persevere.
After the questioning, the committee members exited the apartment and deliberated in the hallway. My friends were proud of me and I was proud of myself. The committee re-entered and my advisor shook my hand. Like a proud yet absent father, he proclaimed “Congratulations, Dr. Ford.” It took me 10 1/2 years to complete that degree. To my surprise, at the political science department’s end-of-the-year holiday party, my advisor – definitely inebriated – gave a teary-eyed toast to my achievement. I even started crying. Everyone congratulated me and it felt phenomenal. A special congratulations from a professor who scolded me for missing classes; I only missed them because I didn’t have the courage to tell her how sick I was. In achieving that degree, I felt victorious and free.
Although my body is more dilapidated than ever, I feel I’ve come a long way in curing my true affliction, my spiritual affliction. Exiting my Vulcan crucible was never about having my feeding tube removed and returning to my previous insecure, self-destructive life. It was in fact about the journey. It was about expunging and exorcising the repressed volcanic fury that my red face and crash into the sea had wrought. It was about love, courage and forgiveness.
Getty image by Graf Vision.