Letting Go…Again


It's been three weeks since I've written a post. I've enjoyed not only a wonderful Christmas with my daughter and her family in California, but also the three-week respite from this blog. Today Marja and I are on Amtrak traveling to Washington DC: three days of relative solitude across the country.

For the first time, I've been experiencing the need to write for this blog as something of a burden; the California respite was a real relief. In the beginning, fifteen months ago, the blog didn't feel demanding or even like work. There was always something new to write about; my experiences just pushed themselves out, yearning to be expressed. I even worried that I was posting too often. The blog was to be a journal of a mind disappearing; not knowing how much time I had before I could no longer keep it up, I felt some urgency.

As I've written before, finding new material has begun to feel difficult. It's not surprising, I suppose:

  • To date, I've written 161 posts; that's a lot of subject matter under the bridge.
  • The course of my disease has been much slower than I anticipated, which means that the experience of my impairment has not changed radically these past fifteen months. I don't confront new levels in daily life very often; there's little new to tell.
  • Give my more favorable prognosis for a longer period of competency, my sense of urgency is greatly diminished.
  • All the confusion around the level of my impairment, the validity of my symptoms and my diagnosis has shaken the base on which I stand, making it much more difficult to understand the significance of my experiences.

There is, however, a set of more confusing reasons.

This blog is taken from my daily journal. As I get used to my symptoms, however, I don't journal about them as much as I do about other things: playing with my grandchildren, a low-grade depression, or a disagreement with Marja.

Those are important events to me but probably not as fascinating to others; nor are they always relevant to my experience of cognitive impairment. A year ago, almost everything I thought about was related to my impairment and therefore fit into the blog. Now I have to be much more discriminating. Often there's nothing for days.

Perhaps more important, ever since my neuropsych exam was reported as normal, I've felt defensive writing about my symptoms. As I've written before, when the symptoms I experience could be construed as normal aging or something that could happen to anyone, blogging about them can feel almost like a pathetic, last-ditch attempt to convince myself and my readers of the reality of these symptoms.

The fact of the matter is that I still ruminate on my impairment several times a day. I'm still surprised by every new symptom even if it seems no different from others.

In the past two weeks, for instance, it took me forever to understand the fairly simple rules of a new game my grandchildren taught me; I've been unable to find lost my gloves many times; I never found a bungee cord I needed for our suitcase and can't remember even handling it; and so on.

Is it, however, helpful to write about such in a public blog when I've written about similar symptoms previously?

What I keep forgetting is that the intention of this blog has always been to chronicle my journey within this disease. Whether it's interesting or helpful to others, whether it belongs here in the blogosphere isn't my judgment to make.

If I don't have anything at all to write about, then I should wait until I do, rather than feeling pressure to get something posted. If I notice symptoms, "old" symptoms, I'll write whatever is meaningful to me about them and don't worry about whether I'm whipping a dead horse. If I'm feeling conflicted about the loss of my Alzheimer's diagnosis, write about that. If I'm frustrated by an email to me from a reader who wonders why, in the face of all the normal tests, I work so hard to prove something is wrong with me, then I can write about that. This post today is perhaps an example: an interior monologue about finding it difficult to keep the blog up.

I'm thinking about it a lot, so I'm writing about it.

I will do my best to let go of the concerns that fewer people will read the blog, that I'm repeating myself, that I'm posting too infrequently, or that the blog is not valuable to others. The disease persists, whatever it is. And that's what this blog is about.

This is a journal of my experience as a person with cognitive impairment. I can't be the judge of whether it's helpful to anyone else; and trying to be that judge only makes me anxious.

Editor's note: David's journey with Mild Cognitive Impairment was chronicled in "Fade to Blank: Life Inside Alzheimer's" an in-depth look at the real lives of families impacted by the Alzheimer's epidemic. His story continues on his personal blog on AgingCare.com.

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

Watching the Lights Go Out

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I think it is perfectly OK for you to go three weeks or a month without posting and then post something every day for four days. There doesn't need to be a certain schedule. Please don't feel pressure to post often, but please do continue posting when you feel you have something to say. Don't worry about if it is repeating something you've said before. There are always new people coming on board, and many will not go back and check all the older posts. (Who has time?) Thanks for your contributions to date!
youre not the person actually driving the train so im suggesting just relax . everything will be ok..
David, Your insights are appreciated and I respect your courage in keeping this blog going. It just reconfirms that this journey is unique to each individual. Thank you for sharing your experience.