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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.)

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