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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.

Friday, January 10, 2014

The Community Responds

Washington  DC
I’ve received almost twice as many comments to the last post as to any previous one.  I’m deeply moved by those responses.  Not only did the comments and direct emails offer me much support for continuing the blog, but they also supported my need to write only when I had something to say and not to feel pressure to fill up the space.  Those responses confirm my sense of community with you who have gathered around this blog.  I am profoundly grateful.

Several of the comments offered specific perspectives that I'd not explicitly considered previously and helped me understand better what I and this blog are about.  I’ve responded to each of them personally, but I’d like to highlight here some of their teachings.

One reader emailed me directly with a story remarkably similar to mine.  In 2008, after noticing significant confusion, doing poorly on screening cognitive testing, and having brain scans suggestive of AD, she began quite intentionally to live with Alzheimer’s, joining a support group, writing a memoir, involving herself in advocacy, and so on.  She discovered this past summer that she is, in fact, cognitively normal, and very likely does not have Alzheimer’s.  Her entire story is fascinating in itself, but what she specifically wrote to me about was her difficulty giving up her previous identity as a cognitively impaired person.  It’s been harder than she’d realized to think about her future as a normally competent person.  Even after thorough neuropsych testing showed no impairment, she continued to limit herself as if she were still a person with Alzheimer’s.  So she’s changed her attitude to consciously reminding herself she’s normal and wants to act that way.  It’s made a great deal of difference in her life.  She and I both recognize that our situations are somewhat different from each other’s in that she no longer feels impaired, but her experience raises similar concerns within me: Am I making too much of my impairment?  Should I just act as if I’m not cognitively impaired despite my feeling impaired?  Am I too invested in my diagnosis?  The line between accepting the reality of my impairment, on the one hand and becoming so invested in that reality that I am not open to changes as they occur, on the other, is a fine line, indeed.  It takes wisdom and care to recognize the ambiguity of my situation and not invest myself too deeply in any particular identity.

One person commented that I sometimes seem to be saying, "I’m sorry if I don't, in fact, have Alzheimers!"  It’s a good observation and succinctly put.  I started the blog with a pretty fixed idea of what it would be like: “Watching the Lights Go Out.”  The blog turns out to have become something different.  Flexibility has never been my strong suit.  I have the tendency to feel guilty, as if I’ve promised one thing and delivered another.  It’s an irrational sense that I have something to apologize for.  Many of the comments to the last post have reinforced the idea that I can hold the purpose of the blog lightly, not worry so much about consistency, and let the blog become what it will become.  That’s been a comfort

In her comment, another person suggested that I might “have come to a new stage where less and less are you defining yourself by your ‘illness,’ whatever that may be.”  For me I think I have been defining myself not so much as a person who has an illness but as a person who writes about that illness.  And through the ups and downs of the last months, I’ve been pushed (fortunately) into seeing a broader point of view.  I’ve always been a person who defines himself by what he does; perhaps I can move toward letting go of definitions altogether.

This has been quite a journey.  I’m grateful to have this community of readers accompanying me.


  1. Anonymous1/11/2014

    Hi, thanks again for continuing communication with us! One strange thing about any cognitive issues (which I have had since a car accident 26 yrs ago): One is always having to "assess and control" the other part of oneself. We do this all the time automatically, of course, as humans. But having to 'decide' to do it is an extra step or 'glitch' in this process. This is tiring, but effective. Watching some other friends with impairments, who may have to "assess and control" their spouses or relatives, I've noticed that I use the same methods, but "on myself!". "I" am the one making sure I have chained my keys into my pocket after getting out of the car; putting children's locks on my gas stove so I don't forget it's turned on; adding 'fuzzy' things to my keys as additional proprioceptors so I am sure they are in my hand BEFORE I lock the door on the way out; putting labels on doors so I know which way to turn to unlock them; putting stickers on my clothes washer and dryer so I know which arrow means what; telling new friends to use people's names with a short prompt descriptor [Maxwell, my husband's brother] since I don't do names well; and so forth. Eventually these become 2nd nature. What does exhaust me, however, is people [old and new friends] who want to 'brush over' these issues as though they're not 'real' problems, and who, I think, think I am over-reacting to my difficulties. I, on the contrary, think I'm doing pretty well at KNOWING my issues and working around them as well as I can. [Thanks for listening to this previous poster, retired higher ed administrator, Sodium]

    1. Thanks, Sodium. That's a pretty good list of "tricks" to deal with your level of cognitive impairment. I expect quite a few people would find them valuable.
      Does anyone know of a similar list put out by one of the Alzheimer's institutions? If not, does anyone want to get started on it such a project?

      In terms of being "brushed over," there are at least several things going on:
      1. Cognitive impairment has been stigmatized; we both affected person and others get embarrassed and we don't want to talk about it.
      2. People know so little about Alzheimer's. Typically, people have a very black-and-white view: Either you're demented or you're not. They don't understand that one can appear, speak, and act perfectly normal while still being significantly impaired. This is an especially significant problem for previously highly intelligent people: Their so-called "cognitive reserve" means that they still be less impaired than other people yet they've already lost a lot, which may be obvious to them but not to others.
      3. To acknowledge that the other person who seems so normal (ie so like me) has cognitive impairment means that I have to consider the possibility that I do or will have it, also.

  2. Anonymous1/11/2014

    I really find this blog and your journey interesting. Please keep up the posts! Not being a doctor myself, I've often wondered about the power of the mind and the things that set us apart from the animals. Along those lines some questions come to mind that maybe, over time, you might explore. One is about the power of the mind. Is it possible that our preconceived notions can be a sort of self-fulfilling prophecy, at least to an extent? Following along with one of your other posters, I'm wondering if thoughts focused on being normal (despite these periodic episodes) can actually improve daily life even if is to take away some of the anxiety? Is it possible, just as some people are better multi-taskers than others, that some people's brains are better able to handle a lot of cognitive activity throughout the day than others and some people's activity traffic sometimes hiccups? Could what you (and others) are experiencing be a condition all by itself? Sorry for my ignorance, it's just that when it comes to the human brain it seems like one of the most complex things in the world to me.

  3. Anonymous1/11/2014

    I'm so glad you have decided to continue your posts. I understand what you must be going through as I have some similar feelings about what I'm experiencing with my husband. He was initially diagnosed with AD and we were told he would have only about 7 more years to live. Each year I watched for the symptoms of decline prevalent with AD but over time there didn't seem to much sign of this being his disease. However, I clung to the belief that I would be loosing my husband in a very short time and mentally tried to prepare myself to be able to cope with the statistic of a 7 year timeline of remaining life. It turns out he doesn't have AD but a kind of dementia that shows itself in many different ways. However, I now find myself trying to retrain my brain and behaviors to accept the fact that he doesn't have AD, will live much longer than the predicted 7 years, and, in many ways, we will be able to live a relatively normal life albeit with certain glitches along the way. I'm thrilled that we have more time together but it certainly is a mental shift in thinking!

    1. Thank you very much. I hope you won't underestimate the task of the readjustment. My guess is that at least some others will wonder why it's so hard to switch tracks. The news ought to be so wonderful (and it is, of course) but changing our perspective is not simple task.

  4. Anonymous1/11/2014

    Only in the spirit of fun, might I suggest: "Watching the Lights Flicker During Intermittent Power Outages"? I always look forward to whatever you post. No pressure - just appreciation for your observations.

  5. Anonymous1/11/2014

    That's a good one! AD is a flicker to many. They are still the people we love, that just have a few power outages. I have to make a copy if this post

  6. Hi, I am mostly inspired by your story and at the same time I was moved emotionally. I hope that I can be as strong as you. I really need some help on being strong right now.

    the power of the mind


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