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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.

Wednesday, January 29, 2014

Letting Go --Third Time Around

Washington DC
I had my appointment with my neurologist yesterday.  He had reviewed the records from NIH, including the MRI that showed “generalized cerebral volume loss and small vessel occlusive disease.”  He didn’t seem impressed.  He acknowledged that the MRI was consistent with cerebral vascular disease (which I thought was the likely diagnosis) but then said it could be from normal aging, too.  Neither was he impressed by the alternative interpretation of my neuropsych report. 

He sees no good evidence of brain dysfunction or cognitive impairment.  It’s good news.  “Come back in a year.”

Marja heard the note of frustration in my voice as I told her about my visit.  “Why are you so attached to having a diagnosis,” she asked.  Another friend commented: “Sounds like you’re going to have to let go of your ‘self’ again.”

It’s true.  A year ago, as I was getting used to the diagnosis of Alzheimer’s, I wrote about having to let go of self and I’ve mentioned it a lot since, for instance, here and here.  The Buddhists point out that hanging on to one’s sense of self is a sure recipe for unhappiness because our self is always changing.  A year ago I was letting go of my self-image as an intellectual, as the independent, competent one who needed no help.  That was difficult enough, for that self-identity had been a long time in the making.

But the self always changes.  Now I have to give up the self who is the Alzheimer’s patient, the one who would create much suffering for his family as he declined, yet also the one who is losing his intellectual capacities but accepting it with grace, the one who is progressing steadily toward severe dementia yet not being overwhelmed by the pain of it, and the one who is willing to speak and write about his disease publicly.  That identity was an attractive self that I had become very attached to over the past year.  It’s hard to let it go.

The Buddhists are right again: In spite of the overwhelming good news of the last several months, I have felt almost cheated, suffering this loss of identity, unable to embrace the good news in all its fullness.

It seems, however, that my visit with my neurologist today severed most of the cords binding me to that old identity.  It’s curious, for there was no new news, just a reiteration of what’s been said before, yet I feel much more freedom from that tension between who I am and who I thought I was.

I am certainly left with questions but mostly wonderful news.  The question has to do with the cause of my cognitive decline and what it portends.  That’s far outweighed, however, by the wonder of it.  I suppose it’s that I previously had enough cognitive reserve that my decline doesn’t really hamper me in any important way, and it’s rarely noticeable to others.  My cognitive capacity has stayed stable or even slightly improved over the last sixteen months, and there is no reason to believe it will decline further.  My brain scans rule out Alzheimer’s.  Some other people with documented mild cognitive impairment have stayed stable or even improved, so—while there’s no good explanation—I am no rarity.  There’s no bad news here except uncertainty about my future … and who doesn’t live with uncertainty about his future?

The only bad news is my attachment to a self that no longer exists; with a little time I think I can let that one go, too.


  1. Anonymous1/29/2014

    What about leg dragging then? Does your neurologist think that it is also as a result of normal aging?

    1. I should have been clearer about this.
      1. The issue was not exactly leg dragging (as if there was a problem with the legs). Rather my torso would get out in front of my legs so that I would be falling forward and my legs would have to hurry to keep up.
      2. It has happened only a couple of times in the last few years and always goes completely away by the next time out.

  2. Doctors, In my humble opinion, are usually type A personalities. Always have the goal. Diagnosing diseases, trying to improve people's health, etc. they have a set goal in front of them all the time, for a lot of people in just one day or week. I am a pretty calm type B personality. I'd rather lay in a hammock than go to work. LOL.

    I think what is important in this world is "are you happy"? You are travelling, visiting children, enjoying holidays, etc. You should do what makes you happy. If you begin to decline, that would be sad. But even then, if you are happy, it just doesn't matter. I have worked long term care/hospice for over 20 years. There are a lot of content, happy people that have cognitive difficulties, confusion, losses, etc. Of course, someone that has always been a go getter, busy, full of info and statistics, it might be difficult to relax and enjoy. You may have trouble with eat, drink and be merry. But it would be something to aspire to. I tell my brother (who retired last week, and is an engineer), "You should find something to enjoy. Something you love to do for free."

    I am a type

    1. It's also more likely that we Type A's will get into medical school and through residencies.
      I would agree with the question about happiness. The caveat I would have is the question: Have you recognized the pain of the world and the extent that privilege (racial and economic) has caused that pain" If you has recognized your real place in the world and desire to respond to it, then "Are you happy?" can become the next important question.

  3. Anonymous1/29/2014

    I am glad to read (from my interpretation of your words above - correct me if I am wrong) that you have ruled out many conditions and are now more at ease about whatever known or unknown future lies ahead. Your post today and your interesting journey (that you documented in your blog while trying to find out what "the answer is...") reminds me of the words of T.S. Eliot

    We shall not cease from exploration
    And the end of all our exploring
    Will be to arrive where we started
    And know the place for the first time.

    1. Thank you for the lines. I'd never applied them to me before, but they fit.

  4. You are so insightful Dr! And, if you needed further proof of the value of this blog, I offer myself as an example of someone who benefits from your comments: I am a new widow (2 1/2 months) and I am struggling with finding a new role in life. I hear the truth in "let go and let God" but the reality is that I feel quite at sea. Like you, I need to find a new role for myself, or a view of my life that I can adapt to. This column was very helpful to me.

    1. I think the other side of the coin is that while letting go and letting God it's often helpful to keep doing the smaller things that--while not your real calling--nevertheless make the world (yours and others') at little bit better. I know people who, while waiting for THE calling in their life, miss out on a lot of the other life.
      All easier said than done, of course.

  5. David, the feelings you express are continuously interesting to read. It helps to read this post, as it underscores for me the amount of time, patience and process it takes to adjust to identity changes, that like you say, keep happening.

    Makes me more patient with myself, when I read what you've been going through. Thanks for continuing to write.


  6. Anonymous8/10/2014

    Dear David Hilfiker,

    I am very grateful I found my way to your blog. Your exploration of the subtleties of identity, and the grace that can be found in "loss", are valuable.

    I have only skimmed your posts about the equivocal diagnosis of your cognitive situation, so I may have missed something. But in case this is relevant:
    Neuropsych, educational psych, and IQ tests are normed for people with IQ's of 100. Therefore, they do a poor job of measuring cognitive strengths and struggles in people whose IQs are considerably higher or lower. David Weschsler, who devised the WISC and all its variants-- basically all the IQ tests there are-- said himself that they should not be used for people with IQs over 130.

    Further,he states that it is not appropriate to calculate a single score when there are more than two standard deviations between the highest and lowest sub-score--but professionals do this all the time, regardless. (For example, if someone scores a 16 in analytical ability but an 8 in processing speed or working memory [normed for 10], averaging them is meaningless. But this may well have happened with your testing. )

    The implication is that someone who started out with a high IQ would have to have a pretty major cognitive loss before it meets criteria for cognitive loss, because it is not measuring the difference between that individual now and that individual before; it is measuring the difference between that individual and the "average" individual.

    All of this is beside the point in some important ways. You have chosen to take this change of life as a gift--the best any of us can do in such situations. You have, to some extent, dis-identified with yourself as a smart achiever, and found freedom thereby. It seems you have separated your sense of worth from your intelligence and mental acumen, to your joy.

    But I sensed, perhaps incorrectly, that you are wondering about the contradictory nature of these assessments, so I thought I might write you. Ultimately, as you have learned through your efforts, your understanding of your strengths and struggles is more relevant than anything anyone else can tell you. But if you are wondering about the discrepancy, the limit of our psychometric tests for high and low IQ individuals is probably the cause.

    I wish you continued discoveries and grace,

    1. Your analysis that it's difficult to interpret tests where there is a big difference between one item and another is probably what happened to me. After the NIH psychometrics interpreter told me that my tests were normal, I saw a friend who was also skilled in interpreting the tests (see the post "When Experts Disagree" from Jan 13, 2014). She said something quite similar to what you've written. Since my subjective cognitive experience of decline is so definite, I have to believe that the official interpretation is wrong ... for whatever reason.


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