I recently visited with Gordon Cosby, our 95 year-old pastor. He is dying and seems to be looking forward to it.
We were talking about the deep similarities between what he was learning from dying and I from my Alzheimer's. My memory being what it is, I can't remember his exact words, but he said something like: There is no shame, no humiliation.
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I recognized the words as something the apostle Paul wrote, referring to himself, calling himself the lowest of human beings yet finding strength in his weakness. I'd sort of believed it before, but I always tacked on at least an implicit "to those who love the Lord," mostly to qualify the concept so it wouldn't apply to me.
But Gordon didn't tack on anything, just: There is no shame, no humiliation.
I believe it now. With this disease much of my fear of humiliating myself has shriveled.
When I do something outrageous (like add 24,000 non-existent dollars to my church budget projections), I apologize and refer in some way to my deteriorating mind.
Most people seem to accept it and the conversation moves forward. They understand that I'm doing the best I can and that these kinds of things are just going to happen in Alzheimer's. I'm still embarrassed, I suppose, but I no longer feel humiliated (as I would if I hadn't made my diagnosis public), but this illness has given me the great gift of acceptance.
I am who I am; these things happen and they're going to get worse. I feel no shame, no humiliation.
But wouldn't it have been just as true thirty years ago in the prime of my life?
As a young physician, I aborted a live, wanted fetus that I had mistakenly thought was dead in utero. (I wrote about it in my book, Healing the Wounds). There was indeed need to ask forgiveness from the parents; there was need to learn everything I could from the mistake and why it happened; there was need for self-examination into my own weaknesses to see how they contributed; and there was need to acknowledge my error publicly and not hide behind doctor-privilege.
All those I did. But there was no need to for shame or humiliation, no need to see myself as bad, no need to divorce myself from the community.
Mistakes are part of being human; they're part of being a doctor; and they're part of being me.
It used to irritate me when old people, perhaps well into their retirement, would do what I'm doing now and announce their latest philosophical or spiritual discovery. I should have taken more time to smell the roses. More time for relationships. I shouldn't have been so anxious or concerned about what other people thought of me.
The implication always was: And so should you.
It's easy for you to talk, I would complain to myself. I've got a wife, kids, and a medical practice. Smell the roses, indeed.
Yes, it is easy for me as a guy with Alzheimer's to write about this. That's the point.
The importance of letting go of shame and humiliation isn't a great philosophical discovery; Buddha was saying it 2500 years ago, as was Jesus. Alcoholics Anonymous has also discovered that shame and humiliation don't help in getting sober; it's the love and forgiveness of the AA community that makes sobriety possible. I'm not the first one to think about it.
But just because it's easy for me to say doesn't mean it's not true.
Thirty years ago there were so many other pressures on me, so many other expectations. How could I not feel shame after doing something like that? But the reality, that there is no need for humiliation, was the same.
It wouldn't have been easy; probably it would have been impossible, given who I was then. Perhaps I might have been able to recognize the truth intellectually, but actually integrating it into it in my life would have been an extraordinary challenge.
So I'm not saying it's easy.
I'm simply saying that shame and humiliation are a waste of time and soul, and we should do what we can to let them go, whatever letting go may mean in our circumstances.
I've been happier these last 4½ months than at almost any time in my life. I've been given a great gift of letting go of much that made me unhappy.
A retired physician and accomplished author, Dr. Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment, which he says is almost certainly Alzheimer’s disease. His voice offers a profound perspective that will help AgingCare.com caregivers to better understand what it’s like from inside the diseased mind. View David Hilfiker’s profile.