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.

I could barely walk and needed to be wheeled to my gate. At Chicago O’Hare, after the airport dispatcher had wheeled me to my gate and helped me out of the wheelchair, I felt a strong urgency to go to the bathroom, which was about 15 meters away. I asked a woman sitting next to me to watch my bag, even though it weighed only a few pounds. I was not strong enough to carry it to the bathroom with me. She obliged me.

When I returned she asked me some questions. “Do you have cancer?” she asked. I was pale as a ghost and all skin and bones. She let me rest my head on her shoulder while we waited to board the plane.

After what seemed like days, we arrived in Indianapolis and a Red Cap worker wheeled me out to the gate where my father greeted me with a big sturdy hug. I knew I looked very ill, but my Dad did not convey a sense of serious anxiety about my health. He was very solid and seemed sure that his doctor friend could help me. We got home around midnight and my little brother and little sister were still awake. They greeted me with smiles and gave me huge, loving hugs. My step-mother also lovingly embraced me with warmth and understanding that brought tears to my eyes. It was a long day and I had made it.

The next morning, My Dad took me to the hospital and I was admitted immediately as I was in need of intensive care. I was severely dehydrated, severely malnourished, and severely anemic. I also had a fever of 104 F (40 C).

I was scheduled for a colonoscopy, a procedure in which a scope is inserted through the rectum to examine and take biopsies of the insides of the intestines. While I was waiting for the doctor to arrive to conduct the procedure I closed my eyes and began meditating. I knew that my colon was in bad shape and there was an increased risk for the scope to puncture my intestines. I tried to focus on my breathing as the thoughts and fears arose and dissipated in my consciousness. My doctor came by and asked the nurse if I had been sedated.

“No, I’m just meditating,” I said and then smiled to him. I didn’t need sedation, I had meditation!

I did stay awake during most of the colonoscopy. And I saw that my intestines were almost battered to a pulp. The photos of my intestines were a hot item among the medical students in the hospital. One of them even stole my copy while I was recovering from the procedure in the stretcher.

A surgeon came to visit me, telling me that it would either be now or at some point in the future that I would need surgery. I did not want a colostomy. I was 27 years old and could not imagine living with a hole in my abdomen. I decided to try medicines in order to avoid a surgery, so the doctors started high doses of intravenous steroids, antibiotics, and other medicines. They also forbade me from eating anything.

I was struggling to survive. I contemplated what had happened while I lay in bed for many hours. I was baffled—how did I become so dangerously sick? I was also amazed and thankful that I was still alive.

It was hard to meditate lying in a hospital bed with high doses of corticosteroid medicines being delivered intravenously to my body. If you have ever taken these medicines, you would understand. They exacerbated every emotion I had. I practiced mindfulness of my emotions and tried to embrace them, but it was very difficult.

The biopsies from the colonoscopy showed that clostridium difficile, a bacteria caused by antibiotics, had attacked my intestines. In addition, a virus had opportunistically invaded my vulnerable gut. The doctors had only read of a few instances of this kind of infection in the literature, usually in the elderly or immuno-suppressed persons. So, they asked me when I last had an HIV test.

It was 1995 when I last had an HIV test and my experience was that it was nerve-wracking to wait for the results, even though I was “low-risk” and there was little real chance of me actually testing positive for HIV. I was already under so much stress at the hospital, so I decided not to take the HIV test then, but to wait until I was on a lower dose of steroids (a test six months later was negative). The doctors were not too pleased with my decision to put off the test, but I knew my mental limits. I could not handle any more stress.

Unfortunately, I did experience many fears of being HIV positive. I thought about every possible situation that could have possibly made me HIV positive. I obsessively followed these thoughts in circles through my mind. I also feared needing an ostomy. My meditation practice was my anchor. I watched my mind and saw that those fears were fears of the future. I still had the choice to be present.

In fact, every day I still managed to feel immense amounts of love. My little brother, Daniel, was 5 years old and he made pictures for me to put up in my room. I looked at them throughout the day and smiled at his sweetness. I also plastered my room with signs that had mindfulness phrases:

“Each moment is a precious gem.”

“Breathe, you are alive!”

“Beauty is everywhere.”

Sangha members (friends in my mindfulness community) called me and listened to my suffering, told me of events in DC, and sometimes even played music over the phone. Others sent me photos and cards. People called and sent me emails from all over the world with blessings of healing and support. I received a bouquet of flowers from friends in Washington that had a note saying, “Erica, we miss your sparkles.” I smiled for about an hour, just feeling their love and admiring the beautiful flowers.

I went to the bathroom mindfully. That means that every time I went to the bathroom, I said to myself:

Defiled or immaculate,
increasing or decreasing–
these concepts exist only in our mind.
The reality of interbeing is unsurpassed.

This phrase is a gatha, or mindfulness phrase, in the tradition of Thich Nhat Hanh (he is also known as “Thay”, which means “teacher”). I had learned it during my time at Plum Village. It helped me to understand that my bowel movements did not define me. They were just events happening in my body. The concepts of sickness and illness were also just concepts. My body was dreadfully sick but my heart was still well.

I was uplifted by the love that people sent to me from afar. And of course my Dad and Dawn came to visit me every night. Sometimes they brought my little siblings, who always made me smile.

I continued to practice mindfulness in the hospital with my awareness of the simple beauties in my room. The lilies in my room had such a wonderful scent. The nurses loved it. I told one of the nurses how much I loved to smell them and she brought me some Darjeeling tea to smell the next day. It was so fragrant, almost better to smell than to taste.

My Dad brought me his portable CD player and some compact discs and I listened to some truly lovely music. He is a musician himself, so he has a fantastic collection. I immersed myself deeply in Miles Davis and Mozart and “Drops of Emptiness,” a CD of songs sung by Thay and the monastics from Plum Village.

My favorite track on that CD was a poem written by Thay that he recited. Sister Chan Kong, from Plum Village, also sang the words of the poem in Vietnamese. Her voice is so beautiful and warm, I absorbed the beauty of her voice when I listened to the song. It was:

The two leaves of the pinewood gate fall shut
An arrow speeds upwards, splits the sky
Until the courtyard is carpeted with orange blossoms

There flickering
A reflection of infinity

The poem reminded me to look outside, to watch the birds and the sky. The beauty of nature seemed removed, but it was never far.

Every day I looked in the mirror at the ghost of myself in the reflection. My eyes were so deep in their sockets. My hair was falling out because of malnutrition. I had dark circles under my eyes. And I was all of 98 pounds (44 kg) at 5 foot 4 inches (163 cm) tall. I gazed at my reflection with compassion and bewilderment. I was amazed that I had survived, that I was surviving the ordeal. And I heard a little voice that became louder and louder repeating, “You’re doing okay, Erica, you’re doing just fine.” I was seeing my true self, my vulnerability and mortality, and keeping the door open to my heart.

I took “mindful baths” every night as my IV made it difficult to shower. Every night I would bathe each part of my body with tenderness and care. I would just focus all of my attention, energy, and love on taking care of each toe and ankle, leg, arm, and my whole body.

One day, my father brought a book to me in the hospital. It was about chi gong, a branch of Traditional Chinese Medicine that I had practiced on occasion. He showed me one of the stances called “standing at the stake” where a person stood with knees bent and arms looking as if they were embracing a tree. I was very weak, but I tried to hold that pose for thirty seconds every day. And soon, I was able to walk through the halls. So I practiced walking meditation on the hospital floor. I had an IV attached to me, but it didn’t matter. I could still arrive and feel the ground under my feet.

I remembered what Thay had said at Plum Village before one walking meditation. He was instructing us to really feel the earth under our feet, to be attentive with each step. And then he said in French, “C’est facile, pas cher.” The translation is, “It is easy, not expensive.” When I was really focused, mindful walking was very pleasurable and I felt a little half smile emerge on my face.

It was, of course, difficult to maintain feelings of love and awareness of the present moment throughout the day. I felt the institutionalization of being in the hospital. Nurses checked my vital signs and sugar levels at all hours and took my blood at 5:30 am. They talked to each other on the loud intercom starting at 7:30 am each morning. I was fed up with wearing a hospital gown and constantly being attached to an IV.

As I felt discomfort with my circumstances, I thought about my time in Washington. How many hours of the day did I truly enjoy when I worked? I was often in front of a computer screen going from one task to another in “cerebral” mode. I often felt limited by time constraints. But in the hospital, I was not limited by time. I could write and read and listen to music to my heart’s content. I looked back on my work in Washington and asked myself if it was satisfying my sense of purpose. No, I decided.

Being in the hospital brought me back to the basic purpose of my life—to love. I had more time in my day than I ever thought possible to focus on love (especially as I never turned on the television!). As disconnected as I was from my life and “normal” ways of living, I could still love. I could feel the love of others—family and friends, nurses and doctors–taking care of me. I just had to open my heart to receive it. When I transcended my fears and acknowledged they were only creations of my mind, my heart opened to a love that is ever-present.

Almost two weeks after my hospital admission, the physicians allowed me to “eat.” That meant that all of a sudden I was expected to drink 3 or 4 cans of “Subdue” (a protein shake like Ensure) each day. It took me about 3 hours to drink each can of Subdue. Subdue did not taste so good! But I mindfully sipped and sipped until the whole can was empty.

A few days later, the doctors signed my discharge papers and allowed me to leave with my father. I walked mindfully and joyfully out of the hospital as I celebrated my survival and my new freedom. I was free from being captive to a highly institutionalized milieu. Yet leaving the hospital marked the beginning of a long road to recovery, one that I almost did not live through…(to be continued)

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7 Comments (+add yours?)

  1. Andy
    Nov 10, 2010 @ 22:10:05

    Thank you so much for sharing your story, Erica. It sounds like you went through a lot in those early stages and I can relate to that. I had to drink those protein shakes too when I was too ill to feed myself.

    I so wish I had a dharma practice before I became ill. I am glad that your mindfulness practice and Thay’s gathas served you well. ‘Present Moment, Wonderful Moment’ was my companion for a time and I had various verses stuck up around my house.

    Is good to know there is a happy ending to your story.

    Reply

  2. Trackback: Befriending anxiety « Determined To Heal
  3. Trackback: Trying out Zen medicine « Determined To Heal
  4. Praveen
    Aug 10, 2011 @ 05:31:48

    Erica I am an Indian and also suffering with ulcerative colitis and living in india.
    Do a Pyramid Mediation and you will be defenitely healed completely.
    All the Best

    Reply

    • Erica
      Aug 10, 2011 @ 16:37:22

      Hi Praveen, Thanks for your comment. I have not had any symptoms or signs of inflammatory bowel disease in six years, so I am already healed! Hope your healing journey continues to go well. Take care, Erica

      Reply

  5. Clive Sherlock
    Jan 29, 2013 @ 23:14:49

    Hello, Would you like this blog to be mentioned or linked to The Zen Gateway (http://www.thezengateway.com/wellbeing) If so please let me know.
    Thank you
    Clive Sherlock

    Reply

  6. Trackback: Walking the line | Determined To Heal

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