I have a secret. It starts with my friend Naomi, who has interstitial cystitis (IC). IC is extremely painful and she is in mortal combat with her body every day. Her health care has been no help and has repeatedly denied her treatment. The specter of death hovers over her. It is a weekly struggle for her to not kill herself.
My mother also has IC, has for years, and I know it hurts her. But it took my friend's experience to put my mother's suffering in perspective. My mom has had major back surgery, has had vertebrae bolted together. She's had knee, shoulder and bone surgery in her hand. She broke her hip a few weeks ago as I write this, and after having the femur head surgically replaced, is up and around.
I mentioned the secret because, honestly, I often don't realize what kind of pain my mom is in until I see others go through it and I have no excuse. In my mind, my parents are still 40. This is of course ridiculous, because I am 43. I can only say that no child, no matter how old, wants to consider their parents' mortality. It is my generation's turn to live in denial.
It is sometimes hard to get my mom to talk about her surgeries. She comes from a long line of men and women whose bodies betrayed them. There is a photo of my grandfather, a boy on a front porch in Arkansas, one of his feet completely backwards, the other, twisted upside down. Several years at a Shriner's hospital straightened his feet out, but his body remained a tough mass of muscle and bone his whole life.
People in chronic pain don't want jokes or sympathy. They want us to bear witness, to honor their experience. They persevere. They are warriors in battle against the physical rebellion of their own bodies, one hand gripped around the throat of their disease, the other stabbing at it with a scalpel, until one or both perish.