Napa CA
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.
Dear Dr. Hilfiker,
ReplyDeleteA friend recommended your blog to me and I read it regularly. My family carries the gene for a non-curable disease with 50% heredity and I have tried to learn to live with this risk since I was 29. One thing that troubles me is the self-absorption that mortality fear brings. I want to connect more to others and to life, not less. Yet, I try not to blame myself for this self-centeredness. I hope this might help. Lisa
Lisa:
DeleteWhen I thought of Alzheimer's before I knew I had it, my fear was not of mortality but of the process of losing my mind. I guess I've seen enough death that death itself doesn't much bother me. But almost my whole life has been based on my intellect, on usually being the smartest guy in the room. I was terrified of the embarrassment, humiliation, helplessness that cognitive decline would bring. But this has been the best time of my life. I have connected far more to other people because of this disease and feel, if anything, less self-absorbed. It's something I've marveled at many times over the past six months.
David
Dear Dr. Hilfiker -
ReplyDeleteI'm not surprised you have not read other's blogs much. You spent many years working with people who had very high needs, and it can be exhausting work, even if it does have its rewards. (I also work in the inner city, and sometimes feel eaten alive.) I think that once you've been confronted with your own difficulties, you only have so much energy available. I'm guessing that, while you might like - on some level - to be more caring and involved, you ultimately have to save some energy for yourself now, and do what gives you energy. I don't regard that as self-centered.
When I'm in my better mind, I agree with you. The Alzheimer's hasn't fixed my obsession with being good enough, but it sure has helped.
DeleteThanks for writing.
While you might not have read your friends' blogs often enough to soothe you (perhaps) over-active conscience, you have done the good deed of getting me to read Carol Marsh's words. As a sufferer of migraine for over thirty years, it has been wonderful to read about someone who has taken a creative approach to an intractable fact of life for some of us. Thank you.
DeleteI'm delighted you've found Carol's blog (which I am now -- Sep 2014) reading more regularly.
DeleteDavid my heart goes out to you, no advice will be forthcoming from me but I understand and empathize with your thoughts on 'connection'.
ReplyDeleteDr. Hilfiker,
ReplyDeleteThank you for your blog and I will be sure to check in from time to time.
Hello again Dr Hilfiker,
ReplyDeleteIn regards to suicide, I think again of my mother's experiences. I cannot count the number of people whose lives have been enriched by meeting her in the years since her illness - and that is in addition to the people she knew when she was well.
The lights may be dimming here - but they are not going out on your soul. That is true of my mother. I am certain that when all of us leave this world we will know why we lived and died as we did. And there will be no brain difficulties getting in the way.
I am glad you are not thinking of suicide. You are already touching many, many people through this and all of it is good.
Tim