“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).

Milestones and celebrations

Two days ago I celebrated eight years of being hospital-free. As I wrote on my Facebook status update:

On May 3, 2003, I walked out of Georgetown University Hospital with a determination never to be admitted again as an IBD patient. I had been a “frequent flyer” at that hospital for almost 3 years due to severe Crohn’s colitis flares. Today I celebrate 8 years of being hospital-free. To my Crohn’s buddies and friends with health challenges: “Nothing is impossible” ~ Christopher Reeve

It is amazing to me that I actually was never admitted again to the hospital for IBD (inflammatory bowel disease). I was so terribly sick! I’ve written about the different causes and conditions that I believe helped me to recover, but the truth is, I really don’t know for sure. I found some combination of health habits that worked for me. And for almost exactly six years now I have been free of Crohn’s colitis. There are other milestones too: for almost three years I have been free of sciatica pain; for more than three years I have been free of migraine headaches; and for almost one month I have been free of chronic UTIs (gotta start somewhere!).

How do I celebrate such milestones? By eating lots of vegetables, fruits, and high-fiber foods! By thanking everyone who has been with me on my healing journeys. By appreciating the present moment. And by reflecting, at least a little bit, on what illness and pain have taught me.

I read through some of my past journal entries and almost exactly six years ago, I wrote the following in my journal:

Kitten Snickers (the pet name my sister gave to Crohn’s colitis) has taught me about life and death, as I have almost died from severe episodes. But Kitten Snickers has also taught me about love. When there was nothing else for me to hold onto — when I was floating in the moment to moment uncertainty of whether I would survive — when I was overwhelmed by pain and discomfort and feeling trapped — I kept coming back to the experience of love. It was something of a calling. A calling to be right there in the thick of the suffering and to make space within it. And the more I could rest there the more space there was. Sometimes I would close my eyes and feel like there was so much space in my body that I had expanded past the outskirts of the galaxy into nebulae. Only it no longer felt like me. It was the more than me that is love.

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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.

Determined to enjoy life

This past week my father (who loves surfing) visited me and told me an inspiring story about a competitive surfer, Jesse Billauer, who became a quadraplegic after his head slammed into a sandbar during a surfing competition. He cannot move his legs and his arms have only limited capacity for motion. This surfer was not about to give up surfing though. He went back to the waves in the best way he could, lying on board on his front side and pushing himself up. And that must have been an incredibly life-affirming experience, but he did not stop there. He started the Life Rolls On Foundation, a subsidiary of the Christopher and Dana Reeve Foundation, and made it possible for many people with spinal cord injuries to try surfing or get back on the board. You can watch the documentary trailer of Jesse’s life here:

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Toni Bernhard on “how to be sick”

The NPR recently featured an article by Toni Bernhard about her book: “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers.” I have not read the whole book, but it sounds wonderful! Some of my friends with chronic illness have read it and recommended it. You can read an excerpt from her book that is just below the NPR article. Click here: Learning to Life a Full Life with Chronic Illness.

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