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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, February 26, 2013

Grace and Joy

Washington DC
I spoke to the staff at Joseph’s House this morning about my Alzheimer disease.  Joseph’s House is the home and hospice for homeless men and women with AIDS and other terminal diseases that I founded in 1990.  I’m still somewhat involved, teaching interns about injustice toward the poor and helping with some fundraising.  For this morning I was invited into a conversation with the staff and volunteers about Alzheimer’s, especially the spiritual changes since my diagnosis.

When I walked into the house, I didn’t recognize one of the people there.  I asked her if we’d met before.  She didn’t think so.  I offered my hand and said my name, but she didn’t take my hand or give me her name.  Thinking she hadn’t heard me, I asked her name a second time but she seemed uncertain what to do.  She stared at me blankly.  Someone else broke my confusion and introduced her to me as Joy and I guessed that she was a new patient with, perhaps, AIDS dementia.

It was a wonderful morning!  Given my position as founder, my years on the staff, and my regular teaching there, I knew almost everyone there, so it was mostly an opportunity to sit with them in the reality of this disease and share with them my journey of the last six months.  Many of them had received my email several weeks ago so they were familiar with my story.  I recounted my history briefly with the disease and talked about the many freedoms it’s given me: letting go, living in the present, the love and support of my community, freedom from shame and humiliation, and others. 

During the meeting, Joy was sitting next to another woman I didn’t know, Grace, who’d apparently been volunteering at the house.  As I was talking about how the diagnosis had deepened the relationship between my wife Marja and me, the kind of future I foresaw for us, and the pain it would cause Marja, Joy’s eyes filled with tears.  Grace told us that they were partners and that Joy had had Alzheimer’s for seven years.  A while later, Grace was sharing that Joy had started some time ago dancing and singing, things she never used to do before.  Joy gave a little embarrassed laugh, looked down demurely, and said something like, “Oh, don’t start on that.”  But she seemed delighted that we knew about that part of her, too.  I felt a little piece of the “real” Joy peeked through the clouds of her dementia.

Grace commented upon how much Marja and I would have to learn as we go through the stages that they she and Joy have already traversed.  Their comfort with one another—even as Grace talked about Joy’s disease—showed me that they had talked candidly about Joy’s dementia and its impact on their relationship

Grace knew about the pain and the celebration.  Her life, too, had been enriched during these seven years of sharing Joy’s journey.  They had discovered, as Grace said, a “silver linings” of this disease, which is no less true for being a platitude.  It was a special moment in the morning.

I recognized with some embarrassment, though, that as I’d come in and tried unsuccessfully to introduce myself to Joy, I had responded in much the same way so many people do to dementia: confusion and withdrawal.  I don’t blame myself: I was confused.  But I also recognized that from Joy’s point of view, such reactions, repeated over and over, must be painful.

Throughout our time together this morning, the people—most of whom I’d known so well—responded warmly to my sharing … and to Joy and Grace’s sharing.  It was part of that terrible and wonderful tapestry of these past months.  I felt so enveloped by love and support.  It was such richness.  I would have missed it all if I’d not “gone public.” 

Other people in the group had experiences with dementia, too, of course.  Dementia can be part of AIDS and other diseases.  Almost 50% of people eighty-five years and older have Alzheimer disease.  At the end of our time together, Sherry, one of the young staff members whom I knew well, asked me whether her mother should be evaluated.  Her mother has wondering herself about evaluation, but Sherry had been ascribing any problems to stress or other causes, and her mother had not yet been evaluated.  I told her that I thought it was important for her mother to be evaluated, and I could see Sherry struggle silently with the implications of the morning.  On a very different level, our time together had been important to her, too. 

Monday, February 25, 2013

Out of the Frying Pan Into the Freezer

Washington DC

A year ago I would have been terrified of this Alzheimer disease.  All I could have imagined was suffering and pain for me and those who love me.  But is it actually painful?  Am I really suffering as the lights go out? 

A number of years ago, I saw the movie Away From Her about an older couple in which the wife (Julie Christie) was suffering from Alzheimer disease.  (Just to be clear, I remembered neither the name of the movie nor Julie Christie but googled “alzheimer, movie.”)  In the opening scene Christie is putting her frying pan away … into the freezer, while her husband observes with an expression of pained recognition.  Yesterday, I took a carton of soy milk and poured myself a cup, intending to heat it up in the microwave.  I wasn’t until I opened the microwave door to put it in, that I realized that it was the carton in my hand and not the cup.  I suppose I could excuse myself by invoking absentmindedness, but I’m not an absentminded person.  Or, perhaps I should say that I wasn’t an absentminded person and now I am. 

Perhaps that’s emblematic of this disease in its early phases:  

  • A friend tells me she does this all the time, but I didn’t. 
  • Doing my taxes over the weekend I had to use a complicated formula that I’d created a number of years ago.  Luckily, the formula worked, but when I looked at how it worked, I couldn’t even follow my own thinking.  Perhaps others can’t create such spreadsheet formulas, but I could.
  • Perhaps other people couldn’t keep the books for their church.  But I could.
  • Few other people can tell I have Alzheimer’s, but I can.
So, is the present itself emotionally painful?  Actually, putting the soy milk into the microwave was funnier than it was painful.  Am I suffering as the lights go out?  Actually, very few others can tell that my lights are even going out.  And even for me, the dimmer switch hasn’t been moved very far.

No, I’m not suffering now.

I don’t think I’m trying to Pollyanna my way into denial by pretending everything’s okay.  It’s not okay.  I have Alzheimer disease and I know some of what’s coming.  After the frying pan in the freezer comes getting lost, which leads to wandering off who-knows-where, which means having to have someone monitor me, which can lead to paranoia and anger, which pushes me eventually into an institution in which I die. 

The soy milk in the microwave could have pushed me into imagining the entire painful sequence.  But, this time at least, I was given the grace not to go there but to see the humor.  The future will almost certainly be painful; the present doesn’t have to be.

Wednesday, February 20, 2013

An "Excuse" for Fulfillment

Washington DC 
While in Napa CA for the family Christmas, I decided to return in March.  Considering my diagnosis and prognosis, I want to take more time with my family while I can still travel alone and am still fun to be with.  But as the March date gets closer, the three-week period I planned on is feeling short.  For ecological reasons, Marja and I always take Amtrak, which is seven days out and back.  I want to spend a few days with my son in Seattle.  I recently added a stop-off in Minneapolis to visit my sister.  So the original purpose of the trip—time with my daughter and grandchildren in Napa—is getting short shrift. 

In the past I’ve generally confined trips out west to three weeks.  Even taking that length trip two or three times a year, I’ve felt a guilty embarrassment that I was taking too much “vacation.”  I had a vague sense of being irresponsible to my relationship with my Eighth Day faith community, which is important to me.  Up until now, I’ve been trying to graft the new priorities onto the old ones.  But there are only so many hours in a day, so many weeks in a year, so much energy in my spirit.  So I’ve been squeezing more and more into an already crowded space, not only creating more tension than necessary but also feeling guilty and scrimping on what has most meaning for me. But now, as my life changes with Alzheimer’s, I’m giving myself permission to rework my responsibilities.  So I’ve added a week to the trip and will be gone almost a month.   

My life is not the same now: different relationships and activities will be important.  I’ll have to let some responsibilities go to make space for my changing priorities.  In this case, it means less time with Eighth Day and permission to take however much time I need to be with family.

This change is significant.  My diagnosis gives me an “excuse” to live a more fulfilling life: closer relationships, time in nature, less responsibility and more delight.  I suppose I might have made these life-giving decisions before my diagnosis, but I didn’t, and regrets are a waste of energy.  Here in the present, I feel much freer to live with greater fulfillment.

(For some of you, I’m suspect, my struggle with responsibility will seem masochistic or obsessive.  Let me only tell you it’s very real; I was reared as Dr Responsible, and I’ve never let it go.  Some of you may also wonder how month-long trips away from my wife Marja fit into our relationship.  Well, throughout our marriage, we’ve always given each other space to do what’s on our hearts.  She needs to stay in Washington because it’s important to continue volunteering at the school she started over twenty-five years ago.  I need to go to Napa because my time to be with children and grandchildren is limited.  Besides, we’re both independent and being away from each other isn’t that difficult for either of us.  Marja can bless my absences.)

Sunday, February 17, 2013

Research (2)

Washington DC
Last week, Marja and I went to our first interview at the Georgetown Hospital Clinical Research Center.  I want to enter a study of an experimental drug that is being tested to see if it actually alters the physical degeneration of Alzheimer disease. 

Virtually everything medical science knows about the disease is uncertain, including the diagnosis, which can’t be made with certainty until autopsy of the brain.  But (for the more medically inclined) it may help for me to explain the most commonly accepted hypotheses about how Alzheimer’s develops and what this particular research study is about.

A definitive diagnosis of Alzheimer’s can only be made after death by autopsy evidence of neuron destruction and shrinkage of parts of the brain.  Microscopic examination of the neurons and the spaces between neurons (synapses) reveals “neuro-fibrillary tangles,” which are threads of intracellular proteins that have been snarled by another protein called tau.  These tangles impair the communication between neurons that is essential for all brain functions.  There is also an “amyloid plaque” that is involved—sort of a protein goop that builds up around the synapses—that also interferes with communication among nerve cells.  Presumably the neuro-fibrillary tangles and the amyloid build up over many years causing progressive impairment of brain function.

(For the non-medically inclined, the cause of Alzheimer disease seems to be the destruction of neurons by two proteins [amyloid and tau], both manufactured by the body itself.  Only an autopsy of the brain can definitively identify this kind of brain destruction.)

In practice, however, the diagnosis is usually made first by testing for impairment of memory and other cognitive abilities and then excluding the possibility of other causes of dementia, such as strokes, Parkinson’s disease, or vitamin B deficiency.  Such a diagnosis by exclusion, however, tends to seem vague and uncertain to non-medical people, which can cause stress, not only for the patient but also for friends and family.

Recently there have been new developments to help in diagnosis.  Positive Emission Tomography (PET), a brain scan somewhat similar to an MRI, can show the build-up of amyloid plaque in the brain.  A spinal tap (lumbar puncture) can show increased levels of the tau protein in the spinal fluid.  Neither test is definitive but, when added to abnormal cognitive tests, each gives objective evidence to buttress the diagnosis.

The drug being tested in this study has the potential to actually change the underlying pathology of the disease.  The only drug currently approved for treatment of Alzheimer’s, Aricept (donepezil HCl), and the others waiting in the pipeline for approval may lessen the symptoms of the disease, at least for a while, but they don’t slow down the build-up of amyloid or neuro-fibrillary tangles, so the brain continues to deteriorate even though symptoms may temporarily improve.  According to the Federal Drug Administration, Aricept isn’t even terribly effective at ameliorating symptoms; advertisements for its efficacy exaggerate what’s been found in controlled studies.  Because my symptoms are not yet disruptive, I haven’t been taking it.  But both the study nurse and my neurologist have recommended it, so I’ll begin now before the research study gets underway. 

The research I’m trying to sign up for, however, will study whether an experimental drug (that doesn’t even have a name yet) could halt or even reverse the build-up of amyloid in the brain.  The research is very early; it’s only in “Phase 2,” which it’s primarily being studied for safety and tolerance; a later Phase 3 would test for effectiveness.  It would be an exciting breakthrough.

For me, what was most interesting about going in for the study was all the information and attention we received.  The study protocol require Marja to accompany me throughout, so we biked over to Georgetown, and a nurse spent over an hour with us, exhaustively explaining the study, answering our questions, taking blood samples, and repeating a cognitive test.  During our interview Marja had mentioned that she, too, was concerned about cognitive impairment, so she took the same test.  But both of us received perfect scores, which, the nurse said, was not unusual early in the disease with this basic screening test.  I found it all fascinating.

But the best thing about the research is that I will be studied quite intensively and followed for two years.  It means that I will get not only the PET scan (very expensive and not covered by Medicare) but also the spinal tap.  So, assuming those tests are positive, I’ll have as definite a diagnosis of Alzheimer’s as is possible before autopsy. 

That’s important to me because so far, honesty has compelled me to inform people that I have mild, progressive cognitive impairment and that the diagnosis of Alzheimer disease is not certain.  That’s technically true, but—since neither my neurologist, the nurse at Georgetown nor I doubt it’s Alzheimer’s—the tests will allow me to feel more comfortable telling people I have Alzheimer disease and avoid the equivocation that so often leads to annoying conversations about whether I really have the disease.  I get sick of it. 

I suppose in some small corner of my mind, I have some doubts, too.  I’m mostly participating in this study because I believe that, ultimately, medical studies are the only way to discover an effective treatment for Alzheimer’s.  But I’m also happy I’ll be getting this PET scan and the spinal tap (three times each no less), which will finally nail the diagnosis down.

Thursday, February 14, 2013

Letting Go

Washington DC
I have to give up the bookkeeping that I’ve been doing for our church community for the past ten years.

In addition to Marja’s and my personal bookkeeping, I also keep the books for our little housing co-op and for the church.  Reconciling our accounts the other night, I discovered I’d deposited one set of checks meant for our personal account into the co-op account.  It was not a big deal, and I could fix it easily.  But, as I wrote earlier, in December I also made a huge mistake in my church bookkeeping.  So this mix-up between our personal account and the co-op account is further indication that my capacities are declining.   The actual day-to-day details of the bookkeeping are not yet too difficult, but some of the other tasks that only the bookkeeper can do—spreadsheets, for instance—have felt too confusing.  A week or so ago, as I was trying to figure out how much money the church had in its regular account at the beginning of the year, I got confused between the regular account and the money market account.  That kind of thing is going to lead to more serious mistakes.  So I asked Kate Lasso several weeks ago if she would take over the books, told the church leadership team a week ago, and told the entire church this past Sunday.  I’ve begun to make arrangements to get everything transferred.

It seems unexpectedly easy to give up the task.  In fact, I keep surprising myself with how easy it’s been emotionally to give up different kinds of responsibility.  Part of it may be the apathy that is part of the disease, but mostly, I think, I’ve received an unexpected gift of being able to let go.  Even as I think about future kinds of control that I’ll lose (having to let Marja make our important decisions, for instance), it doesn’t seem to bother me as I would expect it to.  Of course, it may be completely different when the actual time comes to give those things up, but, at least for now, this is the season of my life to give things up, to live in a very different space that allows more to happen rather than requires me to make it happen.  I’m happy not to be in charge of so much.

The ease of it amazes me, actually.

Tuesday, February 12, 2013

Courage?

Washington DC
Many of the responses to this blog and to my email to friends and acquaintances have referred to my “courage” in making it all public.  I certainly don’t mind my friends thinking me courageous, but my making things public is not an act of courage.  To call me courageous because I acknowledge my actual physical and mental condition implies that there would be reason to fear other people’s knowing.

Why is it courageous to invite my immediate and wider community to share in my pain, to give them the opportunity to support and comfort me and my wife Marja, to lessen their fear over and embarrassment over the disease, to prepare themselves for a similar pain?  Really, what’s to fear?  Mockery?  Rejection?  Abandonment?  What?

Certainly people may reject me (although that’s not at all my experience so far), but wouldn’t those people abandon me later, anyway, when my symptoms became more obvious and there was more to fear or be embarrassed about?  And wouldn’t they be even more likely to do so if they didn’t know that I knew I was impaired?  Inviting people into my reality, it seems to me, makes it considerably less likely that they will ultimately abandon me.  And inviting them in now when I’m still pretty competent at least gives them and me a chance to learn from each other and become more comfortable with each other before my condition deteriorates.

Refusing the label of courageous is not false modesty on my part.  In fact the emails and comments I’ve been getting since letting people know have been full of love, admiration and respect, making my disease considerably easier to live with.  And, to tell the truth, I’m not above reveling in all the good things people have said about me in their emails.  It’s been a little like being able to listen in on your own memorial service.

Before the diagnosis, my embarrassment over praise and fear of appearing conceited would have made it difficult to accept their compliments.  Now I say to myself: Yes, my life has been good; I’ve accomplished important things; I’ve made the world a better place.  Making the diagnosis public is much less courageous than it is confidence in what will give me the greatest joy and satisfaction.

Sunday, February 10, 2013

Denial

Washington DC
When I was working actively as a physician, my patients rarely came to me with symptoms of early cognitive impairment.  In fact, I can’t think now of a single one.  Family members did occasionally bring in the patient when the dementia was more advanced.  I remember Joseph, for instance, who brought his wife and told me that there was “something wrong with mama.”  Anyone had only to take a brief look at mama to know that she was pretty much out of it.  Perhaps, I thought at the time, mama’s day-to-day changes had been so imperceptible that Joseph just hadn’t noticed.  Perhaps, but I now doubt it.  At her stage in the illness, I can’t imagine a husband not noticing. 

I was aware of my symptoms several years before other people would have noticed.  True, I didn’t have it checked out with a neurologist for a while, either, but I noticed the changes right away and asked Marja, my daughters, and a couple of other friends about it.  If they had mentioned anything, I would certainly have followed up with a doctor.  Are other people not aware of their cognitive changes?  If not, why not?  Marja and one or two others have suggested that my previously high IQ made the losses apparent to me before others could become aware.  But that seems unlikely.  I see no reason why memory loss and confusion should be more noticeable to people with high IQs than to others.

None of us wants to hear bad news, of course.  People with cancer symptoms put off seeing doctors, too.  But the reluctance to find out more about cognitive decline seems so much stronger.  We humans have amazing denial mechanisms, of course, but why are they almost universally so powerful in dementia.  It’s shame and fear, I suspect: shame so strong that one can’t bear to entertain the possibility and fear of isolation so overwhelming that telling others—even intimates—terrifies us. 

Whatever the cause, the failure to share deepens the shame, intensifies the loss, refuses the love and comfort of human accompaniment, and smothers the chances to express the many levels of goodbyes so necessary in this disease.  It only exacerbates the isolation.

There is a real price to silence.  If this writing brings only one person out of the closet, it will have been well worth it.

Thursday, February 07, 2013

Call

 Washington DC
In our faith community, we often speak of “call,” what others might name “vocation:” the kind of life I am called to now.  A few of the marks of call are: first – the task seems impossible; second – one has the personal gifts to do the work of the call; and third – the work involves both the pain of the world and one’s deepest joy.  It seems a perfect description of my desire to change the way I, my community, and the world think about people with Alzheimer’s disease.

As for the first mark of call, the task of changing the way the world thinks is obviously impossible and I’m not even sure about being able to change me or my own community.  As for the second mark, my two memoirs on doctoring, Healing the Wounds and Not All of Us Are Saints suggest that I have the gift of exploring my own inner world and making it accessible to others.  And finally, this vocation explores the pain of the world—not only as my family, community and I will experience it but also as the circles of people that form around any person with Alzheimer’s experience that pain.  To my delight, writing these blog posts over the months has been a great joy.  Sometimes, it seems that, here in the present, Pollyannaish as it sounds, the disease itself is a great joy. 

So creating this blog or my website and any speaking or teaching that I do are my call at this point in my life.  I am to be the voice of this illness in the present moment. To communicate it to the world.  To stay in touch with my reality and share it with others.  To invite people into less fear and embarrassment around questions of this illness.  I’m finding a joy and contentment in this process that has been absent the last few years, when I’ve had to struggle to do the hard work of writing.  It flows fluidly and easily.  For now, as I have said repeatedly over past posts (“Shame and Humiliation,” “Joseph’s House and It’s Interns,” “Telling My Sister Laurie,” and others), I am finding great joy in my life, something that had not been true much before this diagnosis.

I'm not Pollyanna; I know there will be much else to this call and to the disease, some of it ugly.  Not everything is sweetness and light, even now.   I can hardly trust myself to put anything down—backpack, gloves, hat, slippers—even for a moment.  If I take off my gloves to tie my shoes and turn to put the gloves back on, they’re not there.  I have to look around.  It’s not that I put them in weird places (yet) or that they disappear forever.  It’s that I have to make a conscious effort to remember where I’m putting something; the remembering doesn’t happen automatically.  No, it’s not all sweetness and light.

So there’s joy in the presence of pain; for now that’s enough.

Tuesday, February 05, 2013

Losing Confidence (2)


A young couple from our church visited yesterday for an extended conversation.  I enjoyed talking with them.  At one point I mentioned that when Marja was away, I sometimes watched movies that she didn’t care for.  “So what doesn’t Marja like,” they asked.  “You know,” I said,” action movies, sex, violence … no, that’s wrong; she likes sex, but not the violence.”  It was my little attempt at humor.  In the conversation it was inconsequential; I’m not sure my friends even noticed it

After they left, however, I wondered whether I had been too flippant.  Did I reveal a beginning lack of judgment, a common symptom in Alzheimer’s? 

I’ve always been  pretty loose in my conversation, often saying things that others might not say, that are personally revealing, or that are just non-sequiturs meant to be funny.  Sometimes they’re inappropriate, but usually they’re fine, showing a lighter part of myself that doesn’t get much expression, otherwise.  It’s a part of my personality that I like, actually, and that others (well, some others) appreciate. But I skate a thin line between appropriate and inappropriate, between intimate and offensive.  While I occasionally skate over it, I can usually trust myself to stay in bounds.  I have confidence that my intuitive judgment is pretty good, and I don’t need to be particularly careful or to censor.

But if I’m beginning to lose my judgment—even just a little bit—then I will begin censoring, being much less spontaneous in conversation.  That would be a great loss, an important piece of myself crumbling away.

Several times in these posts I’ve mused about what happens to the “self” as such pieces fall away.  Does my sense of self change as my capacities decline?  I’m still very early into the disease, but despite my recognition that some of my cognitive ability has declined, I feel no different as a person.  Some of my conversations with others who have loved ones with Alzheimer’s indicate that the ability to relate person-to-person is maintained until late in the disease.  So I’m wondering if perhaps the sense of self remains constant, but that the person with Alzheimer’s isn’t always conscious of it.  Perhaps it’s simply forgotten for increasingly long and increasingly frequent intervals.  And finally it’s simply gone … no, not really gone but forgotten. 

My former therapist told of her husband who was late in his Alzheimer’s, actually shortly before his death.  He had been quite out of it for years.  But suddenly one morning “he” was back, and they had a short but intimate conversation together.  And then, just as quickly, “he” was gone.  So during that period of return, did he then remember himself only to forget a while later?  This is all my speculation, of course, but that’s what much of my mental life is these days, wondering what impact this disease will have on my very experience of “self.”

Saturday, February 02, 2013

No Shame, No Humiliation

Washington DC
I 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.  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, 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 others 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.