Determined To Heal

Patience is a spiritual practice.

Recently I wrote about patience as one of the gifts of illness. As difficult as it is to bear the pain, the discomfort, the distress and the deprivation, we grow through these kinds of experiences. I know, it is hard as hell sometimes. We want ease. We want rest. We want peace of mind. We are human, of course we do! And yet our plight is not without fruit. We stretch our patience muscle in ways we never thought possible. We learn about ourselves.

There have been times in my life in which I was not allowed to eat anything at all. The doctors in the hospital forbade me from eating food for weeks at a time because any food at all could have triggered my severely inflamed colon to burst. They decided to give me intravenous food, parenteral nutrition. But I had tiny little veins and the radiologists had a heck of a time getting the “main line” (or pic line) into my arm. I remember one time it took 8 attempts to get the line in. Each attempt was so painful, near unbearable, I wanted to give up. My upper arms were lined with black and blue marks. And yet I made it through that horrific procedure several times.

Then there were the baby food years. My intestines were so sensitive, even after my colon was surgically removed, that I ate only the blandest of foods: rice, pasta, eggs, baby food, tofu, and a little fish (I did not know at the time that I could not tolerate gluten and soy!) for years. Vegetables, beans, lentils — all of those foods were way too fibrous for my sensitive gut. So I ate baby food veggies, maybe one jar a day. There were a few months in which I juiced carrots and beets (and now I can’t tolerate carrots or beets). My physicians encouraged me to drink Ensure, which is a protein drink. I drank hundreds of cans of Ensure and held my nose while it went down. The smell of Ensure now makes me feel nauseous!

There were so many challenges to living with Crohn’s colitis. Sometimes I didn’t make it to the bathroom in time. Sometimes my bowel movements sounded like explosions in public bathrooms, while my colleagues were also taking care of business. I had to explain to friends and colleagues why I couldn’t eat so many foods. I had to ask for special foods. I struggled to get a good night’s sleep and worked full days after tossing and turning in pain throughout the night. There was a year in which I did not sleep through the night on any of the 365 nights. There were years in which I meandered between depression and anxiety. Was it easy? No! Did those experiences change me? Absolutely!

Those challenging experiences are now memories. I still follow a somewhat strict diet, avoiding gluten, dairy, soy, corn, carrots, beets, and a few others specific to my gut. But the other Crohn’s colitis symptoms are gone. Once in a while, maybe every six months, I eat something that triggers my gut to go into a tizzy (for example rice that is not fully cooked). And then I’m up most of the night running to the bathroom and then the next day, everything is back to “normal” (as normal as things can be without a colon!). Each time that happens, I remind myself that it will pass, that impermanence is a fact of life. It doesn’t mean that the disease is back. It just means I ate something that my sensitive gut didn’t like. All signs still show that there is no active inflammation in my gut.

It took years for me to go from being the “mystery of science” patient at the hospital to being free from Crohn’s colitis. It took years to be free of sciatica pain–pain that was once disabling–and it took years to be free from migraines.

I’ve rarely written about the chronic pelvic pain that I’ve endured. I wrote my dissertation about how women cope with chronic pelvic pain and yet it is still difficult for me to “come out” about my own experiences publicly.

The immunosuppressants (6MP) that I took for years to help bring my Crohn’s colitis under control (they were only one of several factors that helped me recover, and you can read about the other factors here) made me super vulnerable to infections. I had many excruciatingly painful chronic urinary tract infections and I still get them, though less frequently than when I was on 6MP. The 6MP also made me more vulnerable to vulvar cancer. I learned about this connection after I had already been diagnosed with vulvar intraepithelial neoplasia (VIN) 2. So I had searingly painful biopsies in this sensitive area of my body every six months. I no longer have VIN, thankfully!

Unfortunately the UTIs and the biopsies contributed to something called sensitization of the nerves in the most private area of my body. Following suit, my pelvic floor muscle became chronically tense and it took a long time–years of physical therapy and a round of botox injections into the muscle–for this muscle to relax. The nerves are still quite sensitive, but I am no longer in daily pain. I’ve loosely followed the interstitial cystitis diet for several years, which means that I added even more foods to my “no-no” list, including chocolate (I still eat small amounts, I am such a chocoholic!).

When I was a teenager, I read about patience as a fourth dimension. I didn’t really get it back then. What did that mean? A fourth dimension? Huh? About a decade ago, I learned about patience as a “paramita” in Buddhism. A paramita is sort of like a virtue, but it also literally means “wisdom.” I like this description of the paramita of patience:

This enlightened attribute of patience, acceptance, and tolerance is not a forced suppression or denial of our thoughts and feelings. Rather, it is a quality of being which comes from having our heart open…(from the Six Paramitas)

The spiritual practice of patience does not mean suppressing the thought of “F#ck this is hard!” (please excuse the swearing). It doesn’t mean that we don’t cry, that we don’t feel frustrated or angry. The spiritual practice of patience means that we do all of these things and that we also find the space of awareness within ourselves that lets the difficult experience soften us, wake us up, and give us eyes of compassion. This may be the space in which people feel a divine connection, if a relationship with God is important to them. It may also be the space in which we begin to find our appreciation for all that we can do and all that we have.

Maybe this “fourth dimension of patience” is the part of our consciousness that serves as the conduit between our ever busy minds and our ever-connected hearts.