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).

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.

Getting through the “why me?” days

I think we all experience moments of wondering why we have to deal with a particular health challenge — what is the purpose of it? We might see ourselves as “abnormal” and wish to just be more “normal.” We might look with envy on others who seem to have it “so easy” and wish that we could have some of that ease. When I did my dissertation research, “Why me?” was a commonly reported thought among women with chronic pelvic pain. Some even wondered why God had given them such debilitating pain and illness.

Sometimes we just reach a threshold of not wanting to deal with chronic illness or chronic pain anymore. All of our excellent coping strategies fall by the wayside because we’re just too tired to apply them. We feel mentally defeated in those moments. And we can’t seem to just talk ourselves out of them. The sense of defeat and demoralization is too strong.

When we are absorbed in the “why me?” of coping with a health challenge, it just seems awful. Suffering isn’t rational! The “why me” comes from the feeling of being sucked into a “me bubble” of despair.

So how do we get through the days in which despair seems overwhelming? Here is what I do: More

The gifts of illness

Please click on the following link to read my article on Elephant Journal: “The Gifts of Illness,” I wrote about illness from an unconventional perspective, as something that offers us a way to wake up and develop compassion. The gifts in the article include: tolerance, mindfulness, transcendence, contemplation, moving toward embodiment, letting go, and compassion.

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

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