29 Apr 2013
by Erica
in Crohn's disease, Inflammatory bowel disease, Mind-body medicine, Mindfulness, Ulcerative colitis
Tags: Crohn's disease, Inflammatory bowel disease, Mindfulness, Ulcerative colitis
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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18 Aug 2011
by Erica
in Cancer, Chronic illness, Chronic pain, Compassion, Coping, Crohn's disease, Rheumatoid arthritis, Ulcerative colitis
Tags: Coping with illness, Darlene Cohen, Inflammatory bowel disease
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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23 Jun 2011
by Erica
in Awareness, Cancer, Chronic illness, Chronic pain, Compassion, Coping, Social support
Tags: cancer, communication, Inflammatory bowel disease, NVC
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.”
**********************
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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12 Jun 2011
by Erica
in Awareness, Buddhism, Chronic illness, Chronic pain, Chronic pelvic pain, Compassion, Coping, Crohn's disease, Death, Depression, determination, Inflammatory bowel disease, Mental health, Mindfulness, Ulcerative colitis
Tags: Buddhism, Crohn's disease, Depression, Inflammatory bowel disease, Mindfulness, Ulcerative colitis
“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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04 Jun 2011
by Erica
in Awareness, Buddhism, Cancer, Chronic illness, Chronic pain, Compassion, Coping, Crohn's disease, Inflammatory bowel disease, Mental health, Mindfulness, Ulcerative colitis
Tags: Buddhism, Chronic illness, Chronic pain, Coping with chronic disease, Crohn's disease, Inflammatory bowel disease, Mindfulness, Ulcerative colitis, 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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18 May 2011
by Erica
in Awareness, Chronic illness, Chronic pelvic pain, Coping, Crohn's disease, Inflammatory bowel disease, Mindfulness, New meanings, Ulcerative colitis
Tags: chronic fatigue syndrome, Coping with chronic disease, Crohn's disease, immune dysfunction syndrome, Inflammatory bowel disease, Myalgic encephalomyelitis, Ulcerative colitis
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).
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06 May 2011
by Erica
in Chronic illness, Crohn's disease, determination, New meanings, Ulcerative colitis
Tags: Crohn's disease, Inflammatory bowel disease, love, Ulcerative colitis
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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26 Feb 2011
by Erica
in Awareness, Buddhism, Cancer, Chronic illness, Chronic pain, Chronic pelvic pain, Compassion, Coping, Crohn's disease, Depression, New meanings, Patience, Ulcerative colitis, Uncategorized
Tags: Chronic pain, Crohn's disease, Inflammatory bowel disease, migraines, pelvic pain, Ulcerative colitis
Patience is a spiritual practice.
Recently I wrote about patience as one of the gifts of illness. As difficult as it is to bear the pain, the discomfort, the distress and the deprivation, we grow through these kinds of experiences. I know, it is hard as hell sometimes. We want ease. We want rest. We want peace of mind. We are human, of course we do! And yet our plight is not without fruit. We stretch our patience muscle in ways we never thought possible. We learn about ourselves.
There have been times in my life in which I was not allowed to eat anything at all. The doctors in the hospital forbade me from eating food for weeks at a time because any food at all could have triggered my severely inflamed colon to burst. They decided to give me intravenous food, parenteral nutrition. But I had tiny little veins and the radiologists had a heck of a time getting the “main line” (or pic line) into my arm. I remember one time it took 8 attempts to get the line in. Each attempt was so painful, near unbearable, I wanted to give up. My upper arms were lined with black and blue marks. And yet I made it through that horrific procedure several times.
Then there were the baby food years. My intestines were so sensitive, even after my colon was surgically removed, that I ate only the blandest of foods: rice, pasta, eggs, baby food, tofu, and a little fish (I did not know at the time that I could not tolerate gluten and soy!) for years. Vegetables, beans, lentils — all of those foods were way too fibrous for my sensitive gut. So I ate baby food veggies, maybe one jar a day. There were a few months in which I juiced carrots and beets (and now I can’t tolerate carrots or beets). My physicians encouraged me to drink Ensure, which is a protein drink. I drank hundreds of cans of Ensure and held my nose while it went down. The smell of Ensure now makes me feel nauseous!
There were so many challenges to living with Crohn’s colitis. Sometimes I didn’t make it to the bathroom in time. Sometimes my bowel movements sounded like explosions in public bathrooms, while my colleagues were also taking care of business. I had to explain to friends and colleagues why I couldn’t eat so many foods. I had to ask for special foods. I struggled to get a good night’s sleep and worked full days after tossing and turning in pain throughout the night. There was a year in which I did not sleep through the night on any of the 365 nights. There were years in which I meandered between depression and anxiety. Was it easy? No! Did those experiences change me? Absolutely!
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06 Nov 2010
by Erica
in Awareness, Buddhism, Chronic illness, Chronic pain, Coping, Crohn's disease, Healing stories, Inflammatory bowel disease, Mental health, Mind-body medicine, Mindfulness, New meanings, Poetry, Social support, Ulcerative colitis
Tags: Chronic illness, Coping with chronic disease, Crohn's disease, Inflammatory bowel disease, Meditation, Mindfulness, Ulcerative colitis, Zen
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. More
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25 Oct 2010
by ericashanehamilton
in Awareness, Buddhism, Chronic illness, Compassion, Coping, Depression, Healing stories
Tags: Chronic illness, Coping with chronic disease, Crohn's colitis, Depression, Inflammatory bowel disease
I recently read an article in the New York Times about depression. The author, Johan Lehrer, discussed a new theory in which depression is thought to have an evolutionary purpose, gaining insight. The crux of the theory is that people who are depressed ruminate and rumination involves highly tuned analytical thinking. So even though some depressed people have a hard time functioning within society, they are hyper-focused on working something out, at least according to this theory. And eventually, they may come to some understanding about their situation or about themselves.
In 1973, the year I was born, Chogyam Trungpa Rinpoche gave a talk in which he talked about the energy of depression:
“Well, try to relate to the texture of the energy in the depression situation. Depression is not just a blank, it has all kinds of intelligent things happening within it. I mean, basically depression is extraordinarily interesting and a highly intelligent state of being. That is why you are depressed. Depression is an unsatisfied state of mind in which you feel that you have no outlet. So work with the dissatisfaction of that depression. Whatever is in it is extraordinarily powerful. It has all kinds of answers in it, but the answers are hidden. So, in fact I think depression is one of the most powerful of all energies. It is extraordinarily awake energy, although you might feel sleepy.” More
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