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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.

Sunday, February 02, 2014

So Now Nothing

Washington DC
In my last post I wrote about the good news that’s been coming during the last five months: no evidence of Alzheimer’s disease; stability of my symptoms during the past year and even perhaps some improvement; cognitive decline but, for practical purposes, no impairment; the reasonable possibility of a stable future; and general happiness with my current situation.  The “elevator version” goes something like this: “I’m doing pretty well.  We discovered that I don’t in fact have Alzheimer’s.  I’m still a bit slower than I was, but it’s not worsening and I’m fine with it.”  A couple of days ago, such a summary still seemed a little scary—a more complete letting go than perhaps I was ready for—but it seemed to be the next right step.  In that post I ended with: “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.”

Miraculously, it seems, the letting go has already happened.  I’m no longer attached to the person-with-Alzheimer’s identity.  At first, I didn’t notice the attachment fading, but, in our conversation Wednesday, my spiritual director recognized the difference immediately.  I’ve changed at a deep level, and I’m ready to move on.

So, now what? 

So now nothing!  I feel no hurry to rush off somewhere and find something else.  One of the great gifts of this 16-month experience has been a significant freedom from the trap set for me by my intellectual gifts and my sense of duty and responsibility.  In these past months, I’ve continued to respond to the pain of this world (mostly, but not entirely, through this blog), but, with that freedom, my work has for the first time felt mostly joyful.  It’s been really wonderful for me, and I don’t want to give it away. 

I can trust myself, my deeper self (and not just the intellectual self that has been so long trapped by “should”).  I don’t feel my usual need to search desperately for the “right” vocation, for a work that should be fulfilling. 

I can wait.

So I’ll continue the blog as long as I have something to say, and I’ll keep an eye out for what may come my way.  But a new vocation can’t be just the thing-that-needs-to-be-done or the thing-that-I’m-good-it.  That new vocation also needs to be something that brings me joy. 

Will this freedom be permanent?  Of course not!  It never is.  We always bind ourselves again, and I’m sure I’ll find something.  Nevertheless, I’ve been changed and won’t ever be the same.

Where will that lead me?  I don’t know.  Right now I’m not very concerned.  As long as the path seems firm and right under my feet, I’ll just follow it out and allow most of the worry to remain at rest.

18 comments:

  1. Anonymous2/01/2014

    The brain is so incredibly complex. Even the most knowledgeable neurologists don't know what they don't know.

    The best advice I've ever received: "Do the best that you can -- no matter what comes. And always remember 'This too shall pass.'"

    Take care.

    I have subscribed to your blog and will receive updates whenever you see fit to post them.

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  2. David, I've been following your blog all along but have not posted for many months. I am so glad you continue to share your insights. You certainly have been on a roller coaster ride. Attachment to self and not living in the present moment has caused suffering in my life too. It is difficult to change ingrained habits. But definitely worth the effort. The Serenity Prayer seems to help me. I like to notice and do things that will make a difference in the world. If I am all wrapped up in my identity and worries I am not aware and miss the opportunity. I have my annual cognitive testing this week and I expect my MCI is progressing, but life goes on. (Am I experiencing a time warp? Your post is labeled for Sunday the 2nd but I am commenting on the 1st.)

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    1. No time warp. I intended to publish it tomorrow but the blog service labeled it for tomorrow and posted it today.

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  3. You've already given your neighborhood many gifts: this blog, passed to me by a friend and passed by me to numerous others, vast food for thought. Met Patty Wudel at Joseph House in Dec, a thrilling experience to be there and another of your gifts. A low bow. Friends and I work to strengthen the spiritual connections in a CCRC in VT, and your work has inspired us.

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    1. Patty and Joseph's House are indeed thrilling to experience. (It's a home and hospice for homeless folk with AIDS and cancer, for those of you who don't know.) It's one of those places (and Patty one of those people) that remind you that suffering is not only destructive. We, the caregivers, and they who suffer can turn towards the suffering instead of cringing away. It can be a source of beauty, creativity, and love. (To be clear, it's also ugly, evil and destructive.) Suffering, too, is a part of life.

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  4. Thats good news. I am very happy for you. I will be continuing to follow your blogs as I find the honesty and depth with with you write leaves me contemplating the meaning of life etc

    Thank you for taking the time to share who you are and your life challenges.

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  5. Good for you! Now stop being a disease and be who you really are, a good man who likes to do things :) I speak from experience - i have a rare disease called unicentric castlemans disease - i had a debulking surgery and because of where it was located they couldnt get it all, nor did they remove all the lymph nodes in the area. They treat it like a blood cancer, its rare. Every 6 months for 5 years I have scans and blood tests to see if its going to stay dormant, or come back. after the 5 years, they dont know because since they couldnt get it all, i can only be called "in remission" im only 50. But its not what defines me. Nor does any diagnosis define anyone.

    LIVE.

    and i will still read your blog...:D

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  6. please do keep this blog up.
    I first read your book Not All of Us Are Saints almost 3 years ago this month. It continues to inform my decisions, my feelings, my desires. Last March I was in D.C. exploring grad school options and I stopped by Joseph's House and had the most lovely chat with a nurse there, Blossom, and some of the residents. Thank you for your example of struggle and seeking. Thank you a lot.

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    1. It's wonderful to hear that a book I've written (even 20 year ago) and an organization that I've been deeply involved in have inspired a person. There's no greater reward.
      Thank you for letting me know.

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  7. This is lovely to read, David. And I'm so glad you'll still be posting here because I love reading whatever you write in this space.

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  8. Anonymous2/02/2014

    This post made me think of this quote I saw on another blog just a few days ago:
    "My feeling about the journal is that sensitive, progressive people are in danger of grief, of being atrophied by grief and fear and anxiety. So that the journal, I mean, I can literally say that I would not have survived the life that I've been given without this faithful companion in which I do rejoice and in which I do suffer, work on myself and sit at the table with the suffering. So the journal has that kind of function. It's sitting at table with the questions we carry."

    The quote is from 80+ year-old artist Paulus Berensohn. It's easy to find more about him including a lovely short video.

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  9. Thank you so much, I echo appreciation for this blog. I reach for it as a comfort and always find that and more. I wish there was a resource (or I was aware of) to help in dealing with my confused mother. It's so hard to know what will comfort her at this stage. So far we just keep trying, keep heading onward into the unknown.

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    1. This community of readers who have been in conversation through these comments of the past year have shared with me several resources that you may or may not be aware of.
      There are a fair number of books out there by caregivers who have have been in relationship with parents with confusion. I just googled "books alzheimer's confusion caregiver" and got as many as I could read. The Alzheimer's Association (www.alz.org) has many resources for caregivers; perhaps the most important resource that it has is a list of caregiver groups sorted by geographical area. Some caregivers writing here have said these groups have been essential to their emotional health. (I realize that these aren't dealing specifically with confusion, but there will be lots of space devoted to confusion in anything written for caregivers.)
      One book that I found very interesting is Contented Dementia by James Oliver. It's about a system developed by a women specifically for dealing with confusion. I'm not a caregiver so I can't guarantee the methods, but I'm sure they would be at least helpful.

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  10. David --

    Such a great update. I'm so very glad for you, and looking forward to further posts!

    David Johnson

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  11. Dear David,
    I've learned so much about myself from reading your blog, especially the post preceding this one. The attachment to an image of oneself, especially defined by the "gifts" that we possess (as identified by ourself or others) is so comforting that, at least for me, it has been hard to see how it is also limiting. Reading your blog at the same time I have been following Richard Rohr's Stages of Spiritual Development has brought this limiting aspect clearly into focus. I can only hope for a letting go of "self" that is as freeing as the one you seem to have experienced. I do look forward to as many postings as you are willing to give us. Peace, Joanne

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    1. There's nothing like a crisis to bring things into sharper focus; some of the limitations of my self-image dropped away pretty quickly when I began to experience my cognitive decline. The crisis made it much easier to let it go; it was clearly going to bring me suffering.

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  12. Anonymous2/02/2014


    David, I was so happy to read your wonderful news. I can't imagine the mixed emotions you must be feeling. Your blog in any fashion will be well received by your followers. Thank you for all you do.

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  13. This is lovely to read, David. And I'm so glad you'll still be posting here because I love reading whatever you write in this space. great post!

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