Shortly after I began this blog, I received an email from a fellow writer, Ellen Painter Dollar, a woman I knew almost two decades ago at Potter’s House when we attended church there together. Ellen has osteogenesis imperfecta (OI) or “brittle bone disease,” a genetic disorder in which bones break easily. In addition to the normal pain and disability of broken bones, OI also leads to bone deformities if some of the multiple breaks don't heal properly. Despite the fact that there was 50% chance that any child would have the disease, Ellen and her husband Daniel decided to have children. Their first child was born with the disease; the second two were not.
Ellen has written a book* about her journey. Her blog, Parenthood, Disability, Ethics, and the Crooked Way of Grace explores disability in the context of parenthood, spirituality, and ethics. I’ve known about her blog for some time but have never looked at it. And when she emailed me several months ago, I responded with only a short note. Then, a few days ago, Ellen wrote me again to re-establish contact. After this second email, I find myself feeling guilty for never having responded to the first or even checked out her blog.
It's not the first time. My good friend, Carol Marsh, who’s been of immeasurable help to me with these posts, also has her own blog, Chronic Pain and Spirituality that has been born of her chronic debilitating migraine headaches. I have only skimmed it briefly two or three times.
My lack of interest is embarrassing. Why would I not be interested in the experiences of two friends who are also writing out of their severe disabilities? I've felt a vague sense of guilt, even a little shame**, although I know that neither Ellen nor Carol has any expectations. Perhaps it's just the apathy that is typically part Alzheimer’s, but I think there's more. I suspect I didn’t look at their blogs before my diagnosis because I didn’t really want to look at such undeserved disability, the same way many people don't want to look at Alzheimer’s. I also didn't want to feel obligated to respond meaningfully to them. I never thought about it consciously; I even intended to return Ellen's email with a more meaningful response and to look at Carol's blog some day.
But, now, even my own diagnosis has not prodded me to examine their writings.
Why have I continued to ignore the writings of my two friends, even when I know how important it is to me that others that share my situation? Part of it is probably not wanting to face more suffering. Perhaps I don’t want to examine with different eyes this "most beautiful time" in my life for fear of tipping things off balance. Perhaps I am afraid that, if I read about my friends' suffering, I will discover more suffering in myself. It may very well also have do with wanting to maintain the self-deception of my own unique position. In Ellen's case, I probably don't want to face my envy of her wide readership. I don’t want to read about their discoveries, perhaps thinking they would compete with my own.
I’m not sure of any of this, but my behavior still strikes me as self-centered although after this writing, it's perhaps more understandable. When I don’t look at my friends’ worlds, I’m certainly limiting my own. I know how important it is to me to have others read this: I don't feel so alone.
It’s more than a little embarrassing, especially since I've asked both of them to read this before I posted it. Will my exploring these reactions here change my behavior? I hope it’s not just my guilt that forces me to their blogs.