How Far Would You Go to Feel Better? One Woman's Incredible Search for a Cure
"And you can do that from 2,000 miles away?" I asked.
"I just need a photo so I can channel my energy your way."
And so began the first in a series of long-distance phone sessions with a bioenergy therapist. She lived in Canada, I lived in New York, and while I would have preferred that my healing happen in person, she worked for free, so who was I to complain? When she said she was ready, we'd hang up, and for the next 20 minutes I'd sit on the edge of my chair while she worked her magic. Or made a sandwich. Or jumped up and down in her underwear. There was no way for me to know, and I didn't much care.
Six years ago, I was diagnosed with ulcerative colitis (UC), an inflammatory bowel disease with no known cause or cure; the conventional treatment involves drugs so toxic they make the disease look good. And so for six years my life has been overtaken by the tragedy of my intestines. Some days I have gone to the bathroom every hour; some nights I have gone to the bathroom every hour. Over the years, I have been so exhausted, crampy, and anxious about my symptoms, I haven't wanted to leave the house.
Things started to go badly when I was 32 and staying at an artists' residency in upstate New York, where I'd gone to work on my second novel. But I couldn't work because I was preoccupied with my body. I had massive diarrhea and an uncontrollable urge to relieve myself. I was also bleeding, and not from where a woman normally bleeds. Bleeding and expelling a purple substance so gory, it was like watching a horror flick in my toilet.
When I got home from the artists' residency, I sought help from a gastroenterologist, who diagnosed me with UC and prescribed cortisone enemas and an anti-inflammatory called mesalamine. The problem only got worse—more bleeding, cramps, urgency. At my next appointment, the doctor suggested the problem was all in my head—that I was "just stressed"—but that if I insisted it wasn't (it's not in my head, Doc, it's in my ass), I should eat more broccoli.
Essentially, he was leaving me on my own. At the time, I didn't realize that when you have a disease with no known cause or cure, you're basically on your own anyway. No two patients respond the same way to treatment for ulcerative colitis, and many patients relapse frequently no matter what drugs they're on.
Enter gastroenterologist number two, Daniel Alpert, MD, who is my dream doctor—smart, attentive, kind. I was grateful to have found someone who was willing to discuss with me, at length, every option Western medicine had to offer. Alpert prescribed steroids, which can be effective but which often come with grim side effects: osteoporosis, diabetes, weight gain, and so forth. And so forth. No one wants to be on steroids for long. In my case, I felt better at first, but the instant I'd taper the dose, my symptoms would return. In the end, it didn't matter because the steroids stopped working entirely after about 18 months. For the next two years, I spent most days thinking about the bathroom the way Tarzan thinks about the vine: "Where is the next one, and will I catch it in time?"
That might sound cavalier; in truth, it was awful. I couldn't go to restaurants for fear of having an accident. An accident, like a toddler. I was panicked about flying. About dating—who could date under these circumstances? About being on the subway. About giving readings and teaching my writing classes. Eventually, things deteriorated to the point where I had to be within three feet of a bathroom at all times. Any longer and I wouldn't make it; even when I did make it, the pain was almost unbearable. Alpert said my intestines had become so inflamed and ulcerated that they could perforate any day. He said I had to do something. But I absolutely did not want to try the options he had in mind: a class of drugs called biologics and another class that the pharmaceutical industry optimistically calls immunomodulators, some of which are categorized by the International Agency for Research on Cancer as Group 1 carcinogens—a group that includes arsenic, asbestos, and plutonium. Plutonium!