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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.

Saturday, July 06, 2013

A Paradise Built in Hell

Washington DC
In A Paradise Built in Hell, Rebecca Solnit writes about that special sense of community, of altruism, of love, even of joy that can arise out of disaster.  We’re all familiar it.  It’s quite obvious in major disasters but happens here in Washington even when we get a big snowstorm that locks down the city.  People are friendlier on the street, young people shovel off the sidewalks of older people, people with four-wheel drive vehicles make them available for emergency transportation, and so on.  We who can wander by each other in the neighborhood without even saying “Hello” suddenly recognize a sense of community with each other; we pause and marvel with each other at the beauty.  Time can stop.  Our day-to-day concerns drop away; our schedules are put on hold.  We can move into the present moment, and life is, for the time being, different, richer, more joyful.

It can happen when someone dies even, when someone is very sick, when any tragedy strikes, really.  Not always, of course, but out of tragedy can come joy. 

I wonder if that isn’t part of the explanation for this joy I’ve felt since my diagnosis with Alzheimer’s last September.  It’s felt bizarre to write about these last months as one of the happiest times in my life, but that’s been the truth.  Perhaps it’s the tragedy itself that has created the joy.

Certainly when I received my diagnosis last September, normal life stopped.  Suddenly I found myself in a tragedy that had previously invoked terror.  Many of the concerns of routine life, of my schedules, of my responsibilities became suddenly of secondary importance.  I moved into the present, which can be a place of richness.  From the responses of other people, too, I could tell that something was different; many sought deeper relationships, richer than before.  My children and I experienced (and still experience) a closeness (here and here) we had not previously known.  Marja and I moved closer to one another … and have remained there.  My relationships with people from my faith community are stronger. 

Perhaps, as Solnit suggests, Hell can birth paradise, when suddenly community deepens and the humanity of both others and ourselves is revealed.

Alzheimer’s could never be called good.  Like Hurricane Katrina, or 9/11, or a tornado, or an earthquake, Alzheimer’s could not be wished on anyone.  Yet out of it can come a joy that has taken me by surprise.

In the last month or two, some of that special feeling—my ability to live in the present, my sense that my life is worthwhile even if I can’t accomplish that much, my sense of joy in living—has been diluted, and I’ve wondered why.  Had I slipped back into old patterns, lost the new sense of emotional richness?  I wonder now if much of that loss comes from my recognition that the course of my disease will be slower than I’d anticipated.  My symptoms don’t interfere much with everyday life.  I’m getting used to having Alzheimer’s.  It doesn’t shock me into the present.  I’ve become again more emotionally invested in day-to-day events and responsibilities.  Some of the usual pressures return.  It’s a normal response, I guess: my day-to-day life now contains Alzheimer’s.

Some of that special feeling has declined but not all of it.  Life is more precious.  I still have closer relationships with my family, my friends and my community.  Solnit suggests that tragedies can change who we are, give us more compassion, bring us into the present, make our experience of life deeper.  I am very grateful.


  1. Good comment. I've worked with hospice patients off and on. And one woman said something that really stuck with me. She was laying in bed, her family had just left after a visit, she had lost a lot of weight, on some strong pain meds, and she said, "I didn't begin to live until I knew I was dying."

    With AD, I think, there is a sort of reprieve. At first, its scarey. But as you realize life is the same, you just have an end line somewhere out there in the future. We all have that same endline, whether or not we are aware of it. My Grandma said, on my last visit, "I may not be here next year." I told her, "Grandma, I may not be here next year either." She nodded, and said, "That's true."

    1. Our cultural expectations and fears make it difficult to acknowledge the joy in tragedy, especially with AD, but it's certainly there.

  2. HI David: do you know your APOE status? Many individuals are getting their genetic traits for $99 and learning of APOE4 status. Could you address this?

    1. I have one copy of the APOE-4 gene, which doubled my risk of AD. If one has both copies, I've been told, there is an 80% change of developing AD.
      Another advantage of getting into a study is finding out all this information without having to pay anything.

  3. When you enter Dementia World you enter an entirely new paradigm. Everything that was isn't anymore. It is all new! Ken Follet an author said in one of his books: "when you have lost everything you have nothing more to lose." This invokes freedom, you can do anything because you have nothing to lose doing it!

  4. You have lifted my spirits yet again Dr Hilfiker. I am so glad I found this blog. It is informative and joyful (and I sure didn't expect the latter!)

  5. David, wonderful post. Very inspiring. Since receiving the news that I have the 4/4 gene, my life has improved exponentially. I’m healthier. I’m happier. I’m more relaxed. I savor life.

    Not always. The first two years after learning the news were the best. Had a little blip earlier in this year….depression has been my default setting since my teenage years. I’ve learned over the decades that depression—an old habit—can periodically knock me down, but I can get up again.

    Now that I have diet, exercise---and at least temporarily, my depression---under control, I really need to work on connection with others. Just finished reading The Gift of Imperfection, by Brene Brown. Very helpful as it talks about fear and shame…two emotions I think are often entangled with Alzheimer’s.

    I’ve been looking for role models. People with Alzheimer’s that I can emulate. Thank you for this blog.

    1. I can imagine the tension would be somewhat different in your case, since you still have a significant chance that you won't get it. In some ways, knowing for certain is easier than knowing you'll probably get it but not necessarily. Good luck on your journey.

    2. Anonymous7/17/2013

      I would like to thank you for the inspiring insight of dementia. I being diagnosed with vascular dementia have been shown by your writings that I am not alone in this world of dementia. It has been very helpful to me in understanding this experiance as I decline further. Thank you very much.


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