“Never give up”

“No matter what is going on
Never give up
Develop the heart…”

H.H. the 14th Dalai Lama (to read the rest of the poem, click here)

Earlier this week, someone found this blog by typing in the search terms “severe chronic pelvic pain=want to die.” I don’t know who this person was but I felt deep sorrow when I read those words. I thought about how many others there are out there who feel the same way but did not type in the search terms into Google. It made me determined to do something, even if that person never returns to read my blog. There are a lot of people suffering tremendously from medical conditions like pelvic pain and they can’t really talk about their pain and suffering much with others. I’ve been there. I know it is hard.

I’ve written about the severe depression that I went through in 2001, but I didn’t go into great depth about the details of my story.

As I wrote in the earlier entry, I had just survived a life-threatening episode of Crohn’s colitis and I was living with my family in Indiana. I was on disability and was in a lot of physical pain and discomfort.

The doctors in the hospital had never seen a case like mine before. At first, I was a “mystery of science” patient but careful “Dr. House”-like sleuthing showed that it was inflammatory bowel disease in combination with a virus and a bacteria from antibiotics (c. difficile) that had nearly pulverized my intestines. While I was in the hospital, the doctors said that they had only read of similar cases in the medical literature and that in all those cases the patients were immuno-suppressed. When was the last time that I had had an HIV test, they wanted to know. Would I be willing to have another HIV test?

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Patience is much more than a virtue

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!

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Depression, rumination and compassion

I recently read an article in the New York Times about depression. The author, Johan Lehrer, discussed a new theory in which depression is thought to have an evolutionary purpose, gaining insight. The crux of the theory is that people who are depressed ruminate and rumination involves highly tuned analytical thinking. So even though some depressed people have a hard time functioning within society, they are hyper-focused on working something out, at least according to this theory. And eventually, they may come to some understanding about their situation or about themselves.

In 1973, the year I was born, Chogyam Trungpa Rinpoche gave a talk in which he talked about the energy of depression:

“Well, try to relate to the texture of the energy in the depression situation. Depression is not just a blank, it has all kinds of intelligent things happening within it. I mean, basically depression is extraordinarily interesting and a highly intelligent state of being. That is why you are depressed. Depression is an unsatisfied state of mind in which you feel that you have no outlet. So work with the dissatisfaction of that depression. Whatever is in it is extraordinarily powerful. It has all kinds of answers in it, but the answers are hidden. So, in fact I think depression is one of the most powerful of all energies. It is extraordinarily awake energy, although you might feel sleepy.” More

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