On the train from Seattle WA to Napa CA
As I write these posts about Alzheimer disease, I’m becoming increasingly aware of how much my disease affects my ability to write well. Recently I reviewed several posts I’d already published here and found some confusion. (I would quote it here except that I corrected it on the spot and now can’t remember even what the post was about, much less the difference between the corrected and uncorrected versions.) I notice a tension between wanting to be a good writer and wanting to write as a patient who’s declining with Alzheimer’s. On the one hand, I want my writing to be as clear and easy to understand as possible … as I’m sure my readers want, too. On the other hand, to the extent that I rewrite and polish, I’m losing some of the immediacy of my experience within this illness. The tension can’t be completely resolved, but this blog is to be a journey through Alzheimer’s and I will err on the side of reflecting what it’s like to live within these confines, confusion and all.
Perhaps it’s important to tell you of my process in writing, so that you know what you’re getting. This is not a raw journal. I do try to journal every day and then select whatever seems appropriate for these postings. I then email it my close friend Carol Marsh, who is also a blogger and writes on Chronic Pain and Spirituality. Although she does some editing for clarity, I most need her help in two areas: First, since my memory is deteriorating, I ask her to keep me from duplicating something I’ve recently written; and second, I want her to check that what I’m writing actually makes sense to a reader. (As my dementia progresses, we will have to figure out how to present to the reader the writing that doesn’t make much sense in a way that is nevertheless meaningful … which may prove tough to figure out). Carol then emails her corrections and suggestions back to me. I read through and make other editing changes and then post it both here and on my website.
So these are edited posts and not as spontaneous as they might seem. And the date of posting is at least a day or two and as much as a week after my initial journal entry. The concern that I have is that all the editing will result in my censoring in order to prioritize “interesting” and “well-written” material over the raw experience from inside the world of Alzheimer’s. In my journal I do write spontaneously and try to mirror my actual experience without editing. As a writer, I’ve always edited continuously, looking for the best writing I could create. But now I have to balance that with what it’s actually like to be in this intermittent confusion.
I also worry that this becomes too much a stream of consciousness that’s interesting only to myself. And since my judgment will be increasingly compromised, it will be hard to make those decisions. So I’m trying to find my way through several contradictory tensions.
Ultimately, what’s most important, I suppose, is integrity. I will write about what’s significant to me and try not worry about where that leaves me in the eyes of my readers.
After reading this, Carol sent me the following quote from James Agee in Now Let Us Praise Famous Men: “And if there are questions in my mind how to undertake this communication, and there are many, I must let the least of them be, whether I am boring you, or whether I am taking too long...If I bore you, that is that. If I am clumsy, that may indicate partly the difficulty of my subject, and the seriousness with which I am trying to take what hold I can of it...I am interested to speak as carefully and as near truly as I am able."