“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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Living with uncertainty

Earlier this week I went to my doctor to have my moles checked out. It had been three years since a doctor looked at them. I explained to the doc that I am at high-risk for melanoma cancer because:

1) I lived in Florida during my teenage years and got so burned that my face looked like it had been microwaved,

2) I was on immunosuppressant medicines for 13 years, and

3) My maternal grandparents both had moles that became cancerous, though the moles were removed early (level 1 or 2).

My doctor looked at my back and then asked me to wait as he wanted to consult with a colleague. Some 15 minutes later (good thing I brought a book) she came in and looked at the moles then asked me how long I had had a particularly  large one.

“Många år” (many years) I said in Swedish. She assured me it was fine then. My doctor said that he couldn’t remove all the moles that all of his patients had. We just have to live with some uncertainty. I told him I knew lots about living with uncertainty.

I’ve lived with uncertainty for so long that coping with a long-standing sense of uncertainty has become a part of my way of life. In the five or so years after I was diagnosed with inflammatory bowel disease (1998) I tried to control everything that I could to maintain some semblance of security. I did not want to get sick again so I washed dishes twice or washed my hands many, many times. I don’t like labels, but you could say it was probably some version of obsessive compulsive disorder (OCD).

It took many years of mindfulness practice, therapy and self-awareness to loosen some of the habit patterns that I developed during the years that my illness was most severe (see the article I wrote: Is Your Need for Control Out of Control?). The illness almost killed me and triggered an enormous amount of suffering and I never wanted to go through that again. Strangely enough, I handled acute episodes of illness quite well, even when I was hospitalized and not allowed to eat for weeks at a time.

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Living well with a chronic illness – interview on “Open Questions Podcast”

In this interview, Irina Almgren of the “Open Questions Podcast” asked questions to me and Andy McClellan about how we live with chronic illness. We discussed the obstacles of living in a society that pushes people to push themselves and ignore their bodies. We also talked about how the hyper-emphasis on “doing” in our society–on being productive all the time–meant that severe illness triggered crises of identity because we could no longer keep up at the insane pace that most of society runs at. At the same time, in letting go of “doing,” we found so much more about who we really are through “being.” In time, both Andy and I came to see our challenges in living with illness as opportunities to develop self-awareness, compassion and love.

Andy lives with chronic fatigue syndrome and writes an amazing blog called The Long and Winding Road.

You can listen to Part 1 here: OQ5: Living well with a chronic illness, Part 1 (download it) and Part 2 here: OQ6: Living well with a chronic illness, Part 2 (download it).

Discipline is Freedom

This excerpt is from my latest post on Elephant Journal:

In January 2001 I almost died from a severe flare of inflammatory bowel disease (Crohn’s colitis). While I was in the hospital, my father brought me a book about qigong. He showed me how to do a standing meditation pose and I tried to do it every day for 30 seconds.

When I was well enough to live on my own again, I lived in Washington, DC, where two dharma teachers at the Mindfulness Practice Center of Fairfax encouraged me to practice qigong. One of them gave me a book and a video and suggested that I try to practice qigong every day for 100 days. So on March 9, 2001 I committed to practicing qigong every day for 100 days.

As of today, I have practiced qigong every day for more than 3,650 days…

Read the whole post here: Discipline is Freedom.

Zen medicine – part 2

During a mindfulness retreat at the end of 2000, I caught a stomach flu and began to develop grave symptoms of inflammatory bowel disease (Crohn’s colitis). I could not sleep more than two hours at night because I woke up throughout the night to pain in my side, telling me it was time to go to the bathroom. I ate only small amounts of the blandest of foods and I was running to the bathroom all day and all night. I managed to get back to my aunt’s house in Connecticut and the symptoms continued to worsen.

My step-mother called me and told me that she and my Dad wanted to help me get to Indianapolis, where they lived, so I could be under the care of their friend, a gastroenterologist. So she set up a flight within just two days.

I had hoped for a good night’s sleep the night before I traveled but it did not happen. I slept only about two hours and started yet another day feeling exhausted. I knew it would be a particularly long day. The whole trip would last ten hours from door to door. But I knew I would only survive if I focused on my sense of peacefulness. I could carry nothing but that peacefulness. I also knew that I would have to rely on the kindness of strangers to get through the day. More

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

Trying out Zen medicine

In December 1997, I was a graduate student in a doctoral community psychology program at Georgia State University. After the end of my first semester I became quite ill and I was bedridden during the whole winter break of three weeks. I was going to the bathroom upwards of 15 times a day and seeing blood in my stools. I had fevers every day. That was when the doctors first diagnosed me with inflammatory bowel disease (IBD). At the time, they said that I had ulcerative colitis, but this diagnosis was later changed to Crohn’s colitis.

Corticosteroid medicines, which suppress the immune system, and “Asacol,” a medicine for IBD, helped me to achieve remission temporarily. But the corticosteroids had a down side; they made me feel restless. I felt wired 24/7 from these medicines. My mind was often racing and it was particularly difficult for me to fall asleep and stay asleep. More

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