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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.

Tuesday, April 09, 2013

Trying Not to Be A Success

Washington DC
The Washington Post carried a significant article on me on Easter Sunday and its web homepage.  Since then this blog has received well over 50,000 page views (compared with a daily average of 80 before that.)  I'm overwhelmed.  The blog is still getting over 2,000 page views a day and 420 people have signed up to receive each post in their email.  For now, the blog is "successful."  As I result, I notice myself worrying about how to keep the “readership.” 

But trying to make the blog “successful” carries an unacceptable risk.

As I wrote last month, "The concern that I have is that all the editing [I do] 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 the face of 50,000 page views, I can feel that temptation very strongly to write more carefully to make it "worth it" to those of you who read it. I’m a writer, and this temptation is powerful.

I’ll do my best to resist.  I thought briefly I could partially solve the problem by just typing spontaneously in my journal and then, when I write the post, go back and show you what I've changed.  (As you can see from the following paragraph in which I’ve tried, that doesn’t work.  It’s not only unreadable, of course; but doesn’t show much of anything about Alzheimer’s: Strikethroughs are deletions and I've capitalized typos within the strikethroughs.)

I will do my best to resist that temptation refuse that temptation at least in my hjournal from which this post my these posts are written.  Already this morning I've noticed this morning Even now I'm carful as I compose this journalmyself going back and correcting as I type.  THIS IS A PARA The problem is that I've always ediGted my work.  and as you can see from this paragraph in which i've stricknI'm TYP Part of this is just correcting typos and grammar (before this disease, I was a good typist) but part of it isW making sure it sounds right to you.  Aand i'm ging going to continue correcting the typos a  and  the problem is that my paragraphs  The One solution would be to show you each time I correct a tptypo, fix, edit the grammar, or go back and write things nbetter.  As you can see from this parapgraph in which I'cve tried to do that, the post would be utterly unreadable. 

I've always edited my work as I go.  I’ve always corrected typos and grammar, editing for content and style as well as developing my thoughts as I write.  Again, this is what all writers do.

It turns out that as I was in the middle of writing this post, David L Smith left a very thoughtful comment on my “State of Consciousness" post.  He points out that the purpose of this blog is to show what this disease is like from inside my own mind, but any editing I might do creates

"a coherence of thought and elegance of prose of someone who doesn't have [Alzheimer’s], and that will mislead your readers into thinking the disease is more benign than it really is."

It's an important issue, but the consequences for me at this point in the disease are pretty benign.  I have Alzheimer’s and I still have a “coherence of thought and eloquence of prose” (such as it is).  I’m not giving that up; it will be taken from me soon enough. 

My task in this blog is to show how Alzheimer’s appears from inside my head.  The shame and embarrassment that keep Alzheimer’s in the closet do great harm. Since the image too many people have of Alzheimer’s is a person wandering around, getting lost and speaking nonsense or lying mute in a nursing home bed, it's important to show that in the early stages of the disease, symptoms are quite mild and there are often years of incremental, almost unnoticeable decline in functioning that the public rarely recognizes because the diagnosis is so rarely public.  (See the previous post “What Happened to My Fears?”) 

If I were consciously to dumb myself down (which I won’t), it wouldn’t really show you anything except a good writer dumbing himself down. 

The much more difficult question is the unconscious censoring that is inevitable.  To retain your trust, I will do my best to show you who I am through my uncensored writing, warts and all? I will be as rigorously careful as I can not to aim for success.

Ultimately, as I said in that earlier post, the issue is integrity.

28 comments:

  1. I love that it is "from inside your head."

    You rock.

    Carry on.

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  2. I don't think editing a piece necessarily creates a distance between you and Alzheimer's. Your ability to edit, to discern typos and more importantly to discern an inelegance in the flow of language, is testimony to the power of your mind. Journals don't have to be first-drafts in order to provide an honest assessment.

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  3. Excellent post. Reading your posts, I thought, 'gee this man has Alzheimer's, yet he write's and speaks so well.' Not anything like the person I cared for with Alzheimer's. Not anything like the ones I worked with in day care or assisted living. He has his mind. He hasn't lost it.

    If anything this is why I listen and watch those with Alzheimer's. I want to know how they think, what they think, and why they think, and for how long. Why? I've seen some who were missed diagnosed with Alzheimer's, having Alcoholic dementia, Thyroid disease, B12 deficiency, and others that can cause dementia if left untreated.

    It's good to see it coming from the so called, 'horse's mouth'. How else can we learn what it's like to have Alzheimer's/dementia except this way?

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    1. This past weekend there was a large article on Alzheimer disease in the Washington Post. As is almost always true in the media, the people they wrote about were deep compromised cognitively by their disease. I suppose I can't blame the editors or the writers, but virtually all articles in the media are about end-stage disease. So we don't know that some of us can write and speak well for years after the disease begins. I suspect there are a lot of us very normal-looking and -acting people that we don't recognize as people with Alzheimer's. As a consequence, we are much more afraid of this disease than we have to be. The single most important goal of this blog is to bring Alzheimer's out of the closet, to reduce the fear, embarrassment, and shame that surrounds this disease.
      Thanks for writing.

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  4. Anonymous4/10/2013

    My mother suffered and later past away with Alzheimer's. Her diagnosis was not as early as yours but we could look back quite a ways to see her personality had changed many years before.
    I hope you write from your heart. As for editing as you go? You are where you are and you are showing those of us who fear it, that there is life WITH Alzheimer's. Keep on....Great job! Erin O.

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    1. Indeed, there is life with Alzheimer's. I'm am not the only living proof. The comments I've received over the past several weeks have been beautiful examples of the life that continues far into the disease.

      Delete
  5. Anonymous4/10/2013

    perhaps I've missed it but are you taking any drugs like areocept?

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    1. I'm not taking any drugs for Alzheimer disease. None of the currently available drugs actually changes the physical deterioration of the brain. The most commonly used and most accepted Aricept, for instance, may help cognition for a while, but it doesn't alter the underlying pathology. While some people find it a great help, controlled tests show it to be overall only somewhat worthwhile. The drug's effects may also be time-limited so I am waiting until I am more deeply affected before starting.
      I will shortly be entering a very early study of a new drug (so early that the drug doesn't have a name, just a number) that might actually change the underlying pathology and course of the disease. It will be unlikely to be of help to me, but there's always a chance. More importantly, the real possibility is that the drug would prove to be helpful VERY early in the disease by melting the amyloid plaques that are a cause of Alzheimer's. (Alzheimer's may actually start some 25 years before its symptoms start showing up. It's far off, but they're even talking about a vaccine that could prevent the formation of the amyloid. So the research is very important.) For a little more information on amyloid, put this link in your browser URL: http://www.brightfocus.org/alzheimers/about/understanding/plaques-and-tangles.html

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  6. I was introduced to your blog today by my friends at the Alzheimer Society of Washington and I'm deeply impressed by your story. I've not been personally touched by dementia, but have rheumatoid arthritis myself and both my mother and younger brother suffer(ed) from depression. Unfortunately my brother took his own life in February and I hate that no matter how we tried to help him in the end his decision was irrevocable.

    I found your biography fascinating and deeply admire the contributions you've made to society in your professional life. I worked in Tribal Health for many years as a records and health IT professional and felt it was important work that matters.

    I've subscribed to your blog and look forward to following your journey. Our diseases have nothing in common except they're interrupting the lives of human beings, and that along with your compelling story make me look forward to your next posting.

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    1. I've been receiving some emails and some comments that suggest that there are common threads among the disabilities. To what extent do we fight against them? To what extent do we see them subtracting from our selves? To what extent can we accept them and live with them? How are we changed, both positively and negatively by our disability? The answers of course are different for each one of us, but the questions are often very similar .
      As terrible as I usually found my depression, for instance, it also gave me a sensitivity to others that made me a better doctor; somehow people knew intuitively that I had suffered, and they were willing to open up to me more.
      Thanks for writing.

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  7. You have my prayers and my admiration. My mother would not tell my father about his Alzheimer's. She did not want him to know anything was wrong. Thank you for confirming my opinion that he should have been told, and allowed to work his way through things. Thank you for you honesty. This evening, it is a very big help. Reading your blog makes me realize how much we have robbed my father of what he has needed to say, and now it's basically too late. Bless you!

    SJR
    The Pink Flamingo

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    1. As a physician, I kept to the belief that honesty was the best policy, and I never regretted it. What I found was that if a person wasn't ready to accept the diagnosis, they would generally find a way to deny it. If they chose denial, I limited my responsibility as a physician to making sure they knew the facts and were aware of my opinion; after that, I shut up and let them work with it themselves.
      I agree with your opinion. It seems to me that between the two risks of 1) feeling devastated by learning the truth, and 2) feeling isolated because it wasn't permissible to talk about the painful truth that one was very aware of, #2 is the far greater tragedy ... and most people will not be devastated by the truth, anyway. I would be surprised if your father didn't know that something was wrong.
      Thank you for writing.

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  8. Anonymous4/11/2013

    As a person living with this illness for over 10 years now I have gone through every dimension of this wicked blight. I wake each day and fight to do things I once took for granted. Have a thought; want to find it on internet? Forget that. It does NOT work anymore. I cannot sight read and transpose music fast enough to play anymore. BUT I now know MORE about each of my eight grandchildren than I would without the disease.

    ReplyDelete
    Replies
    1. Before getting comments like yours, I would never have believed a person could be ten years into the disease and still be able to write a comment or even think about transposing a piece of music.
      I have not yet experienced the "wicked blight," but I will, of course. I hope that I can then say that I know more about each of my grandchildren than I would have otherwise.

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  9. Kerrie4/11/2013

    Thank you for sharing your experience. My mother has had dementia for 9 years. I never knew what she was going through in her early stages and still don't really know how much of her is still there. It would have been so helpful for her and for us, her family and friends, had she been open about what she was going through. Instead we all felt alienated and she felt isolated because of her silence.

    ReplyDelete
    Replies
    1. I fear that the isolation and alienation are a near universal story and a tragedy each time. I hope that you will find a way to be with your mother, not necessarily as her child (if she doesn't recognize you) but in the present moment, trying to experience her. Perhaps it is too late for that, but I keep hearing stories in which a person who seems out of it will come back, if only for a little while.
      Thanks for writing.
      David

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  10. Hello,
    I am one of the 50,000 and counting that was directed to your blog from the news article in the post.

    And quite simply I want to say "Thank You"

    For committing to write about your experience.

    It is well worth it,
    Gina

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  11. Abuelalynn4/11/2013

    It is so wonderful that you have decided to share your journey with Alzheimers. As a wife/care partner for an Early Onset Alzheimers husband I find myself hungry for information about this sad disease. For you to be willing to share the challenges and even good things that happen, is a gift for us.

    That being said, I was a bit sad to see that you were so concerned about the technical, grammatical details of your posts. As your blog will become more difficult to write, somehow worrying about the appearance and flow of your writing could sap your energy and possibly end your wonderful blog.

    So I say GO FOR IT, in any format. We'll get your meaning and in turn will benefit greatly. Every day I make myself "go to the Alzheimer's world" and leave my reality behind so I can figure out what my husband is doing or trying to tell me. It would be so helpful to really get the insider's view of the Alzheimer's world.

    Thank you for being brave and insightful. I will read your blog with every update.

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    1. Abuelalynn:
      Thank you for writing. I hope that these comment sections can be a place where different ones of us can share "information about this sad disease."
      I think you're right about being less concerned about the technical, grammatical details. But I'm still a writer, I still have most of my cognitive abilities, so it would not be honest at this point not to write as clearly as I can. There will be time enough for other kinds of writing.
      David

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  12. I am excited about all of the new research that is going on, and feel hopeful that something can be found to at least stall the decline. I too have been depressed for long periods. There is a current study to see if a lack of sleep contributes to the onset of dementia. Our brains are more active when asleep and that is when memories are stored. After a sleep study, I have been outfitted with a CPAP machine that helps to relieve the sleep apnea. In 6 months, I will have more cognitive testing to see if things are progressing or improving. I have not noticed cognitive changes but my mood is better and I feel less anxious. As far as your blogging, David, please know that this is a special calling just like when you wrote the book on mistakes you made as a physician. You are already helping so many people. It is possible that writing at this point is more difficult for you than speaking. Maybe you could try software like "dragon" You talk and it types what you said. then it might be less work to "clean" up afterwards. Also use your editor if need be. God bless her for volunteering to help.

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    1. Thanks, jmojo:
      I, too, feel it is a special calling for which I am very grateful. I am convinced that we are happiest when we are touching both our own joy and the pain of the world. Right now I seem to be at that place.
      David

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  13. I wanted to comment before I read the other comments. I'm afraid that you might try to write that "stream of consciousness" stuff that James Joyce got away with foisting on a gullible public who thought he was "so fresh" and "so frank." To me it was rubbish and showing off by using crude language and telling us more than we really wanted to know about himself.

    I liked your writing as it was. We all edit while we write and I assume you do, too. A few crossed-out words here and there may show the process of the mind, but, you're right, too many of them render the work unreadable. So, do what you feel comfortable doing. I was on a television game show once and I was completely at ease. I was not worried at all about the studio audience -- I didn't know a soul there. But, minutes before the cameras started rolling, some guy with a clip-board approached us, the contestants, and began trying to calm us down. Speaking only for myself, I had no qualms, but this guy kept waving his pen at me and saying over and over, "Don't let it bother you that twenty million people will be watching you, looking at your hair, your make-up, your clothes. They'll see every blink of your eyes, every gesture you make." Well, of course, I began to sweat. I was wearing a borrowed dress and it didn't fit quite right and I was worried that my eye make-up might be running with the perspiration beginning to dot my face. Finally I could think of nothing but wanting to get out of there as quickly as possible. I was tongue-tied, no longer the cool young lady I had been when I walked out on the stage. I did poorly playing the game. I answered all my questions correctly, but had difficulty speaking up and I knew everyone thought I was a dud and had no business even being there. The questions I received were for lower dollar amounts than my opponent and so, even though my answers were all correct, I lost the game. To this day I am convinced that they purposely gave me the lower-valued questions to get rid of me. The Master of Ceremonies of the show had been part of the game show scandal back in the fifties and I didn't doubt that the show was rigged against me.

    Well, whether it was or wasn't, my point is that those of us who are reading your blog have a vested interest in your story. And, even though we know it is silly, we are pulling for you. We are on your side, whether you want us to be or not. So, just try to forget that we're here if it makes you nervous. We all have some stage-fright in the mornings, but we still get up and put our shoes on.

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    1. In the moments when I'm actually writing, none of you is before me and I feel quite calm. It's in the middle of the night when I get afraid that something didn't make sense that I remember all of you. You are right, of course. I will do my best to write as my, from my heart.

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  14. LBlock4/13/2013

    Dr. Hilfiker, Thank you for sharing your journey. Every life has a story. And, while universal feelings (such as pain) touch us all, we are unique in our perspectives, perceptions and responses. Thank you for sharing your unique, individual response to Alzheimer's Disease.

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  15. This information helps individuals and their families deal with Alzheimer's disease and memory loss.

    Alzheimer’s clinic

    ReplyDelete
  16. Anonymous4/27/2013

    Back on March 20,you referred to going back to precious posts and making corrections. My dad, a fastidious engineer, perhaps fearing he was getting forgetful, decided to write his autobiography. Some years later, but still before his diagnosis, he went back and "made corrections". Fortunately, he had made many copies of the original and we all have our original copies. His later editing often was garbled and nearly always different from family memories of the same event. After diagnosis and beginning on Aricept and later Namenda, he continued on for 10 years. My best memory of his disease progress was that he laughed more easily, more often and did indeed seem always happy for a beautiful sunset, a long ride in the country or the fantastic new invention of the cell phone on which we would call his grandsons as of by magic.

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  17. Thanks very much for your story of your dad's going back and editing his previous posts and how he garbled them. I apparently was not clear. The only editing that I do (or plan ever on doing) is before I actually make the post. Once it is up, I only touch it if I notice some formatting mistake or egregious factual error or something like that. No, this site is meant to be me as I am in the present without later editions. If I ever go back and start mucking around with previous posts, I hope someone will keep me away from the computer.

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    1. James C. Gray7/15/2013

      I've been looking for your response to David Smith's suggestion that you publish your initial rough draft. I'm glad you have decided to continue doing your own editing before you publish....then leave it alone....except for the immediately recognized need for touch up. You are doing an excellent job of showing your ability to accurately describe the disease from the inside. It is reassuring that you are able to identify and correct errors that you might make before the final blog is published. Please do not post corrected rough drafts with strike-through editing, etc. That would not accurately reflect where you really are. I wish I had your gift for writing and expressing thoughts and emotions.

      Delete

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