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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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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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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“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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