Building Characters

I just finished reading a new post by The Tawny titled Beautifully Designed. Tawny helped me start seeing a solution to a problem I have been wrestling with over the past few days and got my creative juices running. When these two things happen, the only thing left for me to do is write a new post on my blog. First my problem. My daughter got laid off from a job she really loved and this has left her in a lot of pain because no one gets let go without it touching some nerves but it also brought up a lot of pain from a nasty situation that happened a few years ago. As a mother of adult children I know there is nothing I can do to make her pain any less, and this makes me feel really helpless because I want to kiss it and make it all better – like I could when she was little. It happened Monday and all week I have been feeling DARK. To be clear, my daughter losing her job isn’t my problem to solve, but the fact that I feel DARK and all my writing feels DARK is mine. I have tried working on a couple of posts but have walked away from them because they feel DARK. I have reread some of my previous posts and they sound DARK. Why would anyone want to read my posts on the emotional […]

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Who Volunteered Me to be Sick?

In the previous blog, Being Sick & the Sick Role, I shared Parsons’ characteristics of the sick role that included: a) others recognize that the illness is involuntary, that getting sick was not the intention of the person who is sick; b) when people are sick they are exempted from their usual work, family, civic, and other obligations; c) they are expected to not want to be sick and to do what they can to restore their health; and d) are expected to seek competent help and to cooperate in the process of trying to get well. Parson identified these characteristics to help people understand how life is expected to change for people who have acute illness. I believe that having a chronic illness leaves us in a very strange position of both needing to use the sick role, but also needing to very strongly reject it. This blog is about how a chronic illness, especially one that is invisible, can muddy others’ perceptions of whether our illness is involuntary and our intentions. In fact, they can muddy our own perceptions. Susan Wells tells about her experience of trying to get a diagnosis when she was having frightening symptoms and none of the doctors she went to could find anything wrong. She says that she used what little energy she had left after working and taking care of her family to find out what was wrong – which included trying […]

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Facing Change – Maintaining Integrity

My doctor introduced me to the term “new normal” and it intrigued me – probably because I was well on my journey to finding one. And it was a hard journey, as bumpy and wild as the five-day tour of Kyrgyzstan in a 4-wheel drive van driven by a guide who had fantasies of being a bronco rider – more about that in future posts. The journey to a new normal was full of doubt, fear, pain, sadness, and anger and it required a major change (not just a shift) in how I thought about myself and my life. It took courage and perseverance; sometimes I wanted to give up but I didn’t know how. Even though I became discouraged at times, I always had a strong drive to find a way of living that had integrity. But what does a new normal consist of? I wrote this in my journal in October 2004, ten months after being diagnosed. For many years I have found strength and direction in the following words by James Baldwin (1961, Nobody Knows my Name, p.100):  Any real change implies the breakup of the world as one has always known it, the loss of all that gave one an identity, the end of safety. And at such a moment, unable to see and not daring to imagine what the future will now bring forth, one clings to what one knew, or thought one knew; to what one […]

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Loss of My Doctor

The doctor that I have had for the past 10 years seemed to be a gift from God. He understands how difficult fibromyalgia is for the patient, has an excellent problem-solving mind when presented with a new symptom, welcomes new information about treating FM, cares deeply about his patients, and gives the time a patient needs. There were a few rough spots through the 10 years, but our relationship seemed to be very satisfying for both of us. I thought he cared for me, appreciated how I worked with him, and I knew I respected him so I was dreading when he retired in a few years. When he retired I knew it would be hard but I also knew I would be happy for him and together we would find someone else to take care of my healthcare needs. What happened, however, was totally unexpected and is taking a long time to deal with emotionally. I have Medicare insurance and he made the decision to not accept Medicare reimbursement if congress didn’t stop the decrease in payment to health care professionals, so this meant he would no longer be willing to treat me. Congress did put a hold on the cut but I had already felt the wound of betrayal and after a lot of thought and tears made the decision to discharge him from having responsibility for my primary healthcare needs – I fired him. What pained me most was that he hadn’t […]

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Kindness

In this post I want to share with you the reflections of a doctor going to see her doctor. This was written in a creative piece entitled Kindness by Dr. Scholten, who provides healthcare to refugees in Canada, [i]. It is especially potent because she has experienced being both the doctor who is appreciated by patients and then a patient who feels gratitude towards her doctor. So often we wish that our doctor could be in our shoes, could experience the emotional turmoil we experience, that can only be touched through kindness. Sure we need doctors that are competent and capable but there are times when these qualities just aren’t enough. She begins her story by saying that she had helped an Eritrean couple who were new refugees to Canada and facing an unplanned pregnancy. They come to her office for the last time before continuing with an obstetrician and the husband expresses his deep gratitude to her with a small speech. Obviously she had touched them deeply with her caring and help. She writes, however, that she is “embarrassed that I’m thanked for dispensing something that cost me nothing: no education, no honing of skill, no effort. I’d rather be thanked for diagnostic prowess or a deftly performed procedure.” It is clear in her statement that she underestimates the importance of her kindness and she believes technical skills and intellect are much more important. She writes that she forgets their gratitude as […]

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