Walking the line

Today is the last day of Crohn’s and Colitis Awareness Week in the US. So I am writing a post today to raise some awareness about what it is like to live with inflammatory bowel disease (IBD). I have been really lucky to have stayed in remission for so long (now 8+ years).

Earlier this week I had a virus in my gut that could have triggered an episode of IBD, as it did almost 13 years ago. I was lucky this time around. Thirteen years ago, I needed to be hospitalized for two weeks because of the flare that the virus brought on in my gut. This week, I recovered my health within just a few days.

I walk on the line between the healthy and the sick. I am in remission, yes, and I can eat many more kinds of foods than I could when I was sick. I can go outside of my home without the fear that I won’t find a bathroom in time. I rarely have pain in my gut anymore, and if I do, it is usually due to gastroparesis, another gastrointestinal condition I have.

I have not been hospitalized for a flare of Crohn’s colitis in over ten years. In these past ten years I have not been confined to my bed for weeks on end nor have I had to worry about malnourishment or elevated liver levels. I can breastfeed my son without worrying about him getting any small dose of immunosuppressants, since I have been off of these meds for almost four years. The fecal calprotectin tests that my doctor orders still show no signs of inflammation in my gut, and I don’t worry about this test, I know what the results will show. I can feel it in my gut.

But those years of illness took a toll on me. More

Birthing the unknown

The day finally came. After over 280 days of nourishing the growing baby in my belly, the time came for the inception of his passage into the world.

The beginning of my baby’s passage into the world was marked by the trickle of amniotic fluid out of my body and onto my bed. My water broke shortly after 11pm on Monday, March 12. I was not having regular contractions, only weak Braxton Hicks-type contractions.

We called the delivery ward and a nurse invited us to come in to check on the baby’s status. We gathered the bags we packed for the hospital, just in case, and we headed for the hospital. I continued to lose amniotic fluid, but I noticed it was stained with meconium, the baby’s first bowel movement. At one point I stood up in the examination room and a contraction pushed a gush of amniotic fluid out of me and onto my socks and the floor. I pointed out the greenish color and the doctor in the room said we would be staying at the hospital, instead of going home and coming back in the morning, which would have been the case if meconium was not staining the amniotic fluid.

At around 2am, the hospital personnel showed us to our room in the delivery ward. We were exhausted, and yet it was very difficult for us to sleep in a hospital room. I’m a light sleeper. The clock made really loud sounds, the bed was uncomfortable, and then there were the blood-curdling screams coming from a woman in the throes of labor next door. I slept about 20 minutes in total. My partner slept perhaps an hour or two. I was not hooked up to any equipment to monitor the baby. There was essentially no reason for us to be there.
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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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Accepting the challenges we’d rather avoid

“A further sign of health is that we don’t become undone by fear and trembling, but we take it as a message that it’s time to stop struggling and look directly at what’s threatening us.” ~ Pema Chödrön

“The cave you fear to enter holds the treasure you seek.” ~ Joseph Campbell

It’s December 31st and I have decided on but one aspiration for the New Year: to see difficult feelings and situations as opportunities to learn about myself and go beyond my comfort zone; in other words, to grow.

It’s easier to stay in the comfort zone and distract myself with projects and leisure activities, and yet I know that staying in the comfort zone of distractions and self-delusion contributes to a sense of complacency, of doing the same things again and again and expecting different results (the definition of insanity for some people).

No matter how much I might wish for things to be otherwise, there will always be challenges in my life. I will give birth to a baby boy in 2012. There’s no easy way to deliver a baby or to adjust to being a new parent. And pregnancy has not been easy since I’ve had symphysis pubis dysfunction and restless leg syndrome among other pregnancy-related ailments.

For many women, pregnancy is the first major physical challenge they face in their lives. For me, pregnancy is the first major physical challenge that I willingly chose to undergo. After years of living with chronic illness and pain, I have developed a “toolbox” of coping strategies, learned to navigate medical systems, and learned to advocate for myself. I know where to find credible medical information on the Internet. I know how to make sense of contradictory medical opinions. And I know how to take care of myself when I feel like crap. So I’m applying what I learned from living with Crohn’s colitis and chronic pain, but pregnancy still challenges me.
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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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