Rants and Silver Linings

You Can’t Survive a Chronic Illness

My son running full TILT with no end in sight.

My son running full TILT with no end in sight.

“There is obviously no finish line with chronic illness, literally or figuratively; we just live with symptoms that wax and wane and will continue to do so. Without that finish line that denotes survivorship, there is not the same level of cultural awareness or acceptance of our diseases, no backdrop of success with which others can judge our journey. Our survival is more subtle and nuanced; it entails adaption and negotiation, and is as fluid as our disease progression and symptoms are.”

This was a powerful insight for me, written in a book whose research and perspective I find so trustworthy. In the Kingdom of the Sick is a social history of chronic illness in America by Laurie Edwards the health writer. I found it fascinating and wish I had read something, or anything, like it back when I was first diagnosed. Of course, at that time I was necessarily immersed in reading that saved my life, but I could have used some larger introduction into chronic illness and its place in society. My place in society. I will write a thorough review of this book soon but in the meantime think on this…

We may all be influenced by what Samantha King, in her book Pink Ribbons, Inc. calls “the tyranny of cheerfulness”. In considering the impact of this phenomenon, Edwards writes “We know how comforting and necessary images of empowered survivors are. However, such emphasis doesn’t leave room for people who don’t see this diagnosis as a lucky gift, who aren’t ready to point out silver linings – and, of course, for those who endured treatment and did not survive.”

While I do believe our society definitely relies heavily on the “tyranny of cheerfulness”, I’m not sure that is my only motivating factor as I look for finish lines in my own health journey. I suspect I have inherent character traits that demand a sense of progress. Regardless of the source, I know I struggle to see this illness in any other terms. I always have a set of health goals, a year plan, and a five year plan. The day to day is indeed filled with adaptions and negotiations but when I think about my self, this illness, my life…I still find that, by default, I frame it within the culture of survivorship. It is also much easier to discuss it within that framework because that is the language that other people understand so much better than one of small battles fought every day with no end in sight.

I know it would be a good thing if I could slip in the occasional “I am not going to beat this” or a “There will not be an after I am healthy phase of my life” into both my internal and external dialogs. As long as I am never the victim in that attitude adjustment, a little reality check should be grounding not depressive. In fact, maybe it will be easier to be the hero of my own story if I take away the finish line.

An interesting thing happened when I went scanning through iPhoto for pictures to illustrate this post. I was looking for images (I only use my own) that would show the feeling of an unclear or impossible path. But for every photograph that fit my idea, I found another one, taken a few moments later, that showed the best kind of finish line. Special moments shared with people I love. I don’t need to change what I am doing, just how I see it.

Some family members unsure at a crossroads.

Some family members unsure at a crossroads.

My son and I, just happy to be there.

My son and I, just happy to be there.

My friend and I, thwarted by low water, large rocks and the absence of water shoes.

My friend and I, thwarted by low water, large rocks and the absence of water shoes.

But it was a good health day so after we got off the water I actually had a rice bowl from the taqqquria and split a beer with my friend!  I never do that!

The very rare beer I allowed myself to share with my friend as a celebration afterwards!

My daughter on a slippery, rocky path on a a day so overcast there was not much of a view.

My daughter on a slippery, rocky path on a day so overcast there was not much of a view.

But we were on an adventure together.

But we were on an adventure together.

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