The one thing I like about pain

Just to be clear, I’m not a masochist or a sadist or anything like that. I curse as much as the next guy/gal when I have high levels of pain. But I also see that pain has a redeeming feature: it pushes me to shut off the never-ending discourse in my mind and listen to my body, if only for seconds at a time.

When last I wrote, I was sick with a chest cold. It took a month for my body to fight that dreadful cold virus, and I thank my lucky stars I didn’t get bronchitis. I wrote that I couldn’t take any meds for the cold virus. Now here is the reason:

I’m pregnant!

Today marks five months exactly that I have been on the journey of being pregnant. It is a wonderful and challenging journey. It seems that just about every week I have another pregnancy-related ailment with which to contend. About a month ago I started to have a lot of pain in my butt. It was keeping me from getting a good night’s sleep and the intensity had me almost in tears. I suspected it could be sacroiliac joint dysfunction so I visited my physical therapist. She confirmed my suspicion and gave me some tips for reducing the pain: walking like Charlie Chaplin, sleeping with three (yes three) pillows between my knees, and sitting with my knees far apart. Within a few days, the pain subsided substantially, and I am really thankful for that, but I’m also thankful for being highly attuned to my body because of the pain.

How often do we really sink into the everyday sensations of sitting, standing, walking, and rolling in or out of bed? I have practiced mindfulness meditation for over a decade and yet I am often not present to the minute sensations that occur while I’m carrying out these basic movements. When the sacroiliac joint pain was intense, I was fully aware of every slight feeling involved in each movement: lifting a foot, the shift of weight from one foot to the other, balancing, swinging my legs off the bed and touching the soles of my feet to the floor, and the “apex” of sitting in which I let go and trust that the couch or chair would support my bottom. How often do I take these movements for granted?
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Self-care on the tough days

I really like Darlene Cohen’s description of “down ‘n’ dirty comfort” on the days in which you’ve hit your limit. Cohen lived with painful rheumatoid arthritis for many years, and unfortunately she is no longer with us. She died from cancer earlier this year. She knew what it was like to hit bottom, and she had some wonderful ideas about what to do about it. Cohen wrote in “Turning Suffering Inside Out: A Zen Approach to Living with Physical and Emotional Pain:”

Even though it’s an ideal time to “embrace the suffering” or learn to “dance with disaster,” you don’t care. Furthermore, you don’t care that you don’t care. You’ve had it with trying to expand your consciousness. You hate your life and everybody in it. Nobody else cares; why should you? You’re at the end of your rope. It’s time for down ‘n’ dirty comfort. What you need is whatever will get you through the next few hours. (p. 36)

Now, I’m a big fan of reframing, of seeing the lessons in our suffering that help us to develop more wisdom, compassion, and love. But I think that on the days in which we feel most frustrated and downtrodden, we find our greatest compassion in our compassionate actions toward ourselves. If it means pampering ourselves for the day, then so be it. Cohen wrote that when we feel this crappy, we can “start with a refuge, a place to which to retreat when you can’t cope–just to find out what relief feels like.”

She advised us to write a list of activities that can help us feel like we have a refuge:
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Befriending anxiety

Before I had a chronic illness the situations in my life that triggered the most anxiety were going on dates, difficulties in relationships, and taking academic exams. Back in those days, one of my closest friends in college used to call me “the Big Easy” (and no, I was not promiscuous!). I was really easygoing and it took a lot to unnerve me.  Starting at the age of 24, chronic illness and pain altered my nervous system in a way that made me much more susceptible to chronic anxiety.

The first time chronic anxiety hit me hard was in 1999, about a year after I had first been diagnosed with inflammatory bowel disease (IBD). I re-washed dishes after they had been through the dishwasher because I was scared that there might be some bacteria left on the dishes that would trigger another flare. I knew that my fears were irrational and yet it was so difficult to stop my behaviors. So I sought help from a counselor.

The counselor helped me see that I was trying desperately to control my circumstances. The flares of IBD that I had experienced scared me and I wanted to prevent them in any way possible. But my mind had made the error of thinking that doing things like rewashing dishes would somehow protect me from future flares of IBD. The corticosteroids that I took during that time did not help as they exacerbated every emotion I felt and made me jumpy.

In 2000, I visited Plum Village, a Buddhist monastery and meditation practice center in the south of France. You can read about my experience here. It was there that I experienced a deep sense of inner peace and learned some wonderful techniques for coping with my anxiety. The practice of mindfulness meditation helped me to see my fears more clearly. I saw how much I feared losing control, and one day I wrote the following in my journal:

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“What to say to someone who’s sick” – A blog response

Ideally, you would be able to take the time to learn good communication skills (see below) before talking to your sick friend/family member.

But what if you don’t have time to learn good communication skills before visiting or talking to your sick friend/family member?

If you are going to visit a sick friend or family member very soon and you want some ideas about what to say, my suggestion is to focus more on your presence than your words. Your presence speaks volumes. Try to focus on listening to the person with 100% of your being. In the moments that you are with your friend or family member, listening to him or her should seem like the most important thing in your life. If your mind wanders to your “to-do list” or to some concern in your life, catch it, and focus on being there for your friend/family member. If there is an “awkward silence” don’t worry about it. Breathe deeply during the silence and then let your friend or family member know that s/he doesn’t have to say anything, you are there to support him or her in whatever way possible and you are glad just to be there with him or her. If you can’t think of anything to say then be honest, say something like, “I care about you and I’m here for you, even if I don’t know what to say or do.”

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A blog response to “What to say to someone who’s sick,” an article by Bruce Feiler.

I went through hell when I was really sick and in a lot of pain, but it was my own unique hell.

The blogosphere tends to oversimplify the complexity of serious issues with clever titles and tips. Five ways to resolve conflict. Ten ways to be happy. Eleven ways to be unremarkably average. Just read a blog post and your life can be so much better afterwards. But I was surprised to read a clever tip list like this in the New York Times concerning “what to say to someone who’s sick.”

The author, Bruce Feiler, a cancer veteran, wrote two lists with the do’s and don’t’s of communicating with friends and family members who are ill. I have no doubt that Feiler had the best of intentions in writing his article. He went through the hell of cancer and he didn’t want others to have to deal with the same kinds of frustrations he dealt with. But Feiler forgot that his hell was unique and that his preferences as a patient were unique.

Let’s start with his first “don’t” tip, “What can I do to help?” Feiler thinks this question unnecessarily burdens the patient. But that is just his opinion. Personally, I loved when friends asked me this question because I was often in need of help and it was hard for me–Miss super independent–to admit it. When I was severely ill, I frequently needed a ride home from the hospital and I was so glad when someone asked me what they could do to help. “Pick me up,” I would respond. Sometimes I had to take a taxi, if it was, for example at 6am or if I couldn’t find a ride. It meant a world of difference to me to have a friend or family member pick me up instead of taking a taxi. I basked in the care and warmth of my friend/family member the whole way home.

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“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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