Thursday, September 03, 2015

September 3, 2015 - We Didn't Choose It

I ran across a remarkable essay today, called "An open letter to healthy people from a former healthy person." The author is Charis Hill, a young woman of Sacramento, California, who lives with a chronic inflammatory arthritis called Ankylosing Spondylitis (no, I hadn’t heard of it before reading her essay).

Charis writes of how she struggles to define herself to those she meets as someone other than a chronic disease sufferer (who wants to be known as a sufferer, anyway?). From her essay:

"Many of us you see who are broken, you know us only in our current brokenness. But remember, many of us once were full of life, full of vigor and energy. Remember, many of us still recall the days we had full control and freedom with our bodies. We desired everything and still believed nothing could keep us from being professional soccer players, chefs, teachers, doctors, parents, ballerinas. Remember when you see us that we once were like you, healthy and full. Remember that we still remember what we’ve lost. Remember we still have hopes and wishes and dreams, and they are no less important, no less meaningful, and no less worthy than yours.

We love. We dream. We hope. We fight. We need. We survive. We succeed and fail. We live. Love us...."

Chronic illness is a life-transforming experience. After the rock-my-world disruption of diagnosis — and after we’ve got some months of treatment under our belts — we find we are different, as a result of what we’ve gone through and continue to go through.

There are significant losses that are sometimes hard to describe to others:

"We are still alive but we grieve the loss of who we were before this weight of helplessness and disease was inserted into our chest, our brains, our backs, our hearts. We have been blessed with the curse of witnessing and grieving our own symbolic deaths as we learn to be something or someone we never imagined we’d see in the mirror. We learn to see ourselves from the outside looking in (while desperately peeking outward) because we are strangers in these new bodies and we may never know how to inhabit their unpredictability. If the pain doesn’t take your body the side effects of the pain medication will."

Charis wisely resists the tendency some of our neighbors have to clap us on the back and tell us how commendable we are for our "courageous fight." Of all the things people said to me during my months of chemotherapy, it was this sort of comment that rang most hollow. I didn’t want to be commended for being sick. I hadn’t chosen it. If I’d had the choice, I would have run the other way and cheerfully claim the label of coward.

It’s hard to own the adjective "courageous" when we have no choice in the matter.

Charis evidently feels the same way:

"We are not strong, we are not admirable, we are not role models because we woke up and chose to be. We are strong, admirable role models because we have no choice but to fight for sanity and purpose every day of our lives, with every beat of our heart, with every step of our feet or our cane or our walker or our wheels. What we do is not commendable because our career dream as a third grader was to become a chronically ill warrior. What we do is commendable because we do not give up the fight against what we did not choose to become. Because we have two choices: give up or fight."