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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Tuesday, March 26, 2013

Why Don't I Read My Friends' Blogs?

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.


** I once read that guilt is the recognition that I did something wrong; shame is the sense that my whole being is wrong.

7 comments:

  1. Anonymous3/30/2013

    Dear Dr. Hilfiker,

    A 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

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    1. Lisa:
      When 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

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  2. Anonymous3/31/2013

    Dear Dr. Hilfiker -

    I'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.

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    1. 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.
      Thanks for writing.

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  3. David my heart goes out to you, no advice will be forthcoming from me but I understand and empathize with your thoughts on 'connection'.

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  4. Anonymous4/01/2013

    Dr. Hilfiker,

    Thank you for your blog and I will be sure to check in from time to time.

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  5. Hello again Dr Hilfiker,

    In 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

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