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Resistance & Acceptance

When someone is diagnosed with an illness, be it acute or chronic, he or she determines the best strategies to fight the disease. It’s part of our social script: People get sick, but they fight their diseases and get well. OK, some people do live with chronic illness, but only once they figure out how to eliminate their symptoms. These illnesses lurk in the background, not wreaking havoc on their lives.

Does this idea sound familiar? It certainly does to me. In The Not-So-Gentle Art of Acceptance ChronicBabe Editrix Jenni Prokopy describes her resistance and considers the role of acceptance in her chronic illness. Here’s an excerpt from her beautifully written and encouraging piece:

“The idea just seems so shocking; the concept that my body, with fibromyalgia, is in a state of wholeness? That’s crazy talk. The idea that my body is full of wisdom? That those symptoms — those signals — are the easiest way my body has of maneuvering me into a place of total self-care? Whoa. (I’m crying as I write this. This is not an easy concept for me to wrap my brain around.)

“I have always resisted the idea of acceptance, because I always felt my body was flawed. That I was broken in some way. Who wants to accept that? And I have spent many, many years searching for my “fix.” Because it is just so damn unfair, so wrong, there has to be a solution. And I am surrounded by people (and their books and stuff) who believe they have the answer and are willing, for a price of course, to reveal to me their secrets. So it’s very tempting to search and search for the answer. Because it feels like if you stop searching, you’re giving up. It could be right around the corner! I’m no quitter!”

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The Hard Days

Lying in bed last night, I tried to imagine what it would be like to not think about my head all the time. I wasn’t brooding about what my life would be like without headaches, but how other people go through their days without even noticing their heads. How is that even possible?

I kept thinking that my hubby was lying next to me pondering a host of topics, but that his head probably wasn’t one of them. Of course I had to ask him and he was, in fact, thinking about work. A metaphorical headache to be sure, but not the kind I was talking about.

This conversation led to the question of if I ever think about a miracle cure. Generally I just take it as a fact of my life that I will never be pain-free and don’t consider the alternatives. It’s torturous otherwise. Last night was the first time in a while I was struck with grief.

Yesterday was one of the days that the magnitude of my pain was overwhelming. I am grateful that most days aren’t like that.

When I first thought about blogging on headache, I wrote the following text. I didn’t post it because I was afraid it sounded too preachy or that it fit the “just think good thoughts” approach to healing.

For many years I told myself that I would be pain-free one day – and I believed it. About 18 months ago, I recognized that my miracle cure had yet to be developed. I think it’s possible that this cure will be available in my lifetime. But I don’t live my days waiting for my pain-killing prince to come. It’s hard to explain that I see this as acceptance, not resignation.

The Anatomy of Hope, by Dr. Jerome Groopman, draws a line between hope and positive thinking. Groopman, an oncologist and hematologist, has treated patients with life-threatening illness for 30 years, many of whom have survived against the odds. The definition of hope that he offers is that “Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.”

The better future he mentions does not require living without disease. Yes, people often overcome their diseases or are able to live without pain. But the better future Groopman describes can also be learning to live joyously even with debility.

Two years ago I didn’t understand the distinction. I am thankful for the time I spent in denial, but am even more grateful that my current version of being positive is rooted in reality. A reality that means I spend more days than I want in bed, but that I’m not emotionally miserable on those days.

OK, so it’s a little Pollyanna-like. But when I read it today, I saw how comfortable and hopeful I really am. It’s nice to be reminded of that on the hard days.

(By the way, The Anatomy of Hope is a great read even if you don’t have chronic illness.)