More than mindfulness

I have practiced mindfulness meditation for almost 20 years. I started practicing mindfulness meditation way back in 1994, after reading the Vietnamese Zen master Thich Nhat Hanh’s book, Being Peace.

Between 1994 and 2000, my sister and I gave each other Thich Nhat Hanh’s books, and we tried to apply his teachings on mindfulness to our lives. In 2000, my sister and I went on a retreat at Plum Village, the monastery where Thich Nhat Hanh lives and teaches. We were there for several weeks, and our experiences there were life-changing. I’ve written about the retreat in my post: Trying out Zen medicine.

I credit mindfulness meditation with helping me to become healthy again after years of struggling with debilitating flares of inflammatory bowel disease. With mindfulness, I learned to listen to my body and to my intuition in ways that supported my physical and mental health. I also learned how to relate to strong emotions, even if they still take me for a roller-coaster ride at times. Importantly, during some of the most difficult times of my life, I felt the support of the Sangha, the community of mindfulness practitioners.

I am something of a poster-child for how mindfulness can help people to experience less stress, less illness and more joy and freedom in life. But I want to be clear — especially with the upsurge of mindfulness as a panacea for just about every ailment in modern life — it wasn’t just mindfulness that helped me. More

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Ten years later

Almost exactly ten years ago, I was in the hospital for a flare of Crohn’s colitis. On May 4th I will celebrate ten years of being Crohn’s-hospitalization free.

When I think back on that time of my life and see images of the past, my eyes well up with tears. My life seemed to be in pieces so much of the time. But paradoxically, those years were also rich with love, joy and compassion. People were there for me in amazing ways. I was there for me in ways I never thought I could be.

I took nothing for granted. Every morsel of food that I ate was a treasure. Sleeping through the night was a gift. Just feeling the energy to do what healthy people did would make my day.

I haven’t forgotten what it was like to be a person with a disability. I haven’t forgotten the mortal fear of death or writhing in pain with no hope of relief. I haven’t forgotten the debilitation nor the emaciation that I experienced. There were weeks of being starved by doctors, months of eating baby food, and years of not knowing if I could plan anything in my life without a whisper of fear in the back of my mind saying, “But you could get sick again.”

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Fear is a guest

The Guest House

This being human is a guest house.
Every morning a new arrival.

A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.
~ Jalal al-din Rumi

My grandfather used to cite a Yiddish proverb about guests. The English translation was something like, “Fish and guests begin to stink up the house after two weeks.” I’d like to be able to openly welcome the guest of fear whenever it appears on my doorstep, but sometimes it seems like it takes over the “house” of my mind and I feel paralyzed by its power.
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The meaning of pain

The other night I started to have extreme pain in my abdomen. I couldn’t find a comfortable sitting or lying position and walking was out of the question. I knew that I was not having labor contractions because those are short-lived and I was experiencing near-constant pain. I started to wonder if the pain meant something terrible was happening in my uterus, for example, if my placenta was becoming detached. And then I decided to clear my mind of what the pain could “mean” and to really focus on my body.

With mindful attention, I felt that the pain was not in my uterus, it seemed to be behind my uterus. I decided to experiment with more positions, including some Yoga poses. When I went on my hands and knees, I felt immediate relief, and then the cause of the pain was clear to me. A lot of gas was caught in my squished and shortened intestines (my colon was surgically removed in 2002). I remembered that I’ve felt similar pain during colonoscopy procedures in which air is pumped into the intestines (to ensure the scope does not puncture them). (I usually choose not to be sedated during these procedures.)

I had to temporarily let go of my drive to make meaning of the pain in order to discover the actual cause of my pain, and subsequent relief.
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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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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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“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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