Writing with Memory Impairment by Alison Solomon

“I’m diagnosing you with Mild Cognitive Impairment,” the neurologist said at the end of our appointment. “It can be a precursor to dementia or Alzheimer’s but isn’t always. For some people, it never gets a lot worse.” I’d asked for the consult because of a multitude of concerns, both large and small: How could I go someplace I’d been before and not recognize it? Why could I never remember which drawer my socks were in? Why could my partner remember entire conversations with people from months ago and I couldn’t even remember the people? Dementia concept

Getting tested was a little complicated because it involved a mental status exam—a test I knew by heart since, as a psychiatric social worker, I used it daily in my work with patients, so we agreed to use a different instrument. Not only was I familiar with dementia issues on a professional level, but a personal one as well: my mother was living with Alzheimer’s.

After the doctor pronounced his diagnosis I was so relieved that it wasn’t dementia that it took me a while to realize that it also wasn’t nothing. But I’m an optimist, so I tell myself I’ll be in the group of people for whom it doesn’t get worse. Nonetheless I’ve decided to “come out” as someone with MCI. Up until now, I’ve avoided talking about it although I mention it in veiled references. Please don’t take it personally if you’ve told me something and I forget it I told the Con Virgins at this year’s GCLS conference in Chicago. I’m hopeless with names and faces I tell new acquaintances wherever I go. So sorry I forgot that, I say when someone looks at me quizzically, wondering why I don’t remember something that was important to them. I was hoping to catch a break between menopausal fog and old age but it doesn’t seem to be happening.

I’ve always had a bad memory, so in some ways this is nothing new. Sometimes it’s even a blessing: I don’t harbor bad feelings towards people I’ve had run-ins with because I forget the run-ins happened; I rediscover people, places and things I’d forgotten all about. The part that is harder to cope with is that it’s not just about memory, it’s also about cognitive functioning. I notice that where I used to be an excellent navigator, I can’t seem to follow maps the way I used to, and I find it increasingly difficult to follow written directions for appliances and gadgets. (But to those who know how much I love jigsaw puzzles, let me just say that while Mum eventually couldn’t put together a 10 piece puzzle, I recently completed a 1500 piece jigsaw in two days.)That’s the odd thing about this—I’m  extremely functional in certain ways. For instance, I can learn and incorporate new theories and ideas for trainings I develop and deliver professionally. I often wonder if the original “absentminded professor” was actually suffering from MCI as well as ADD.

The place where I notice MCI the most is in my writing. Words used to flow, but now it’s as if they’re there, but hidden behind a curtain. That tip of the tongue feeling we call a senior moment is constant when I’m writing. My savior is Thesaurus.com, not because I’m looking for a word I would never have thought of, but because I’m looking for a word I know but is temporarily inaccessible. The moment I look down the list of synonyms or antonyms, I sigh with relief. Ah there it is, that’s the word that was hiding behind the curtain.

Devoted_ARS-final (2)I’ve always told people I’m a panster, not a plotter. To some degree that’s true. However, I’ve discovered it’s not entirely accurate. I do sometimes plot things out—it’s just that I forget what I plotted. For instance, I’ll be out walking and come up with a whole new twist for my next novel. I charge home, write it down – and then discover that I had the same idea the week before and have already written it down. Writing a book becomes a fascinating process—by the time I’m ready to re-read it for editing, it’s as if I’m discovering it for the first time. I wrote that? I wrote that? Wow!

I told a writing colleague recently that although my original goal had been to write literary fiction, I had to give up on that dream because I simply don’t have a good enough command of language any more. It’s easier to write genre fiction where plot and characterization might be more important than a beautiful turn of phrase. She looked a little shocked – as if I were giving up too easily. However, as my favorite quote says: “When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us.” I’d never expected to write suspense novels, but I’ve thoroughly enjoyed doing so.

As I watched my mother decline, I thought that if she weren’t my own parent, I’d have found it fascinating to observe how her brain did and didn’t function. She was constantly surprising us, making us laugh, and sometimes saying things that were so poignant the tears came to our eyes. Now I get to observe my own process.

As with any public coming out, I’m fearful that people may react in a negative way to this MCI confession. Will they wonder if I’m trustworthy, competent or reliable? Will they read cognitive impairment into things that are just me being my usual scatterbrained self? As a writer, it’s all grist for the mill. My wife is 18 years older than me, and sharp as a tack. She holds onto things I need to remember when I can’t. I used to wonder what it would be like to be on both sides of this relationship: the person who worries about her partner’s failing memory, and the person who has a bad memory and could therefore easily be misled. That’s what led me to write Along Came the Rain. Now I’m toying with writing my memoir. I’d include my most important memories and title it, “This I remember.” (I admit, I’m concerned it will be rather short…) cover.jpg

I’d love to hear from other folks who struggle with these issues and how you deal with them in your daily life. We talk so much about dementia and Alzheimer’s, but little is said about Mild Cognitive Impairment. Let’s get the conversation going!


PortraitAlison grew up in England and lived in Israel and Mexico before settling in the USA. She is author of Devoted (Wild Girl Press, 2017) and Along Came the Rain (Sapphire Books, 2016) and has had short stories published in several Lesfic anthologies, including Bella Books’ 2017 Conference Call, and YLVA’s 2015 Holiday anthology, Do you Hear What I Hear? She lives in Gulfport, FL with her wife and 2 rescue dogs and spends her spare time playing tennis and eating ice-cream.

 

 

 

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25 thoughts on “Writing with Memory Impairment by Alison Solomon

  1. I really admire you for talking about this my wife and I are going through this same thing with her mother. She was diagnosed with mild dementia about 3 moths back and it has become a struggle to watch her go through this and try not to get frustrated because her memory is not what it used to be. it is very sad and i hate that anyone has to go through it, Because what are we if we can not remember our best memories…….

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  2. Thank you, dear Alison, for your great honesty. I am dealing with my mom’s decline from late onset Alzheimer’s and I’m yet to deal with it. I try to help her while ignoring the meaning of it all, but here you got me thinking about it. When she complains about her memory, I tell mom that our mind is a chest of drawers and when you live a good long life full of information, that information starts falling behind the drawer and clogging up everything until the drawer gets stuck and useless to us. So maybe we should start our remedy by rearranging ACTUAL drawers, making order in the mess, as a way of metaphoric organizing of thoughts. Feng shui?

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    1. Well, Vicky, we are in the process of moving, so definitely doing some reorganizing and clean-up 🙂 That’s kinda like when I was trying to get pregnant and was told to start a garden to grow things. I’m an odd mix of being very organized in some areas (I always had a tidy office) but disorganized in others.

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  3. Since the age of 34 I have had chemo-brain. It’s a similar feeling. The words are THERE but I have to go around the block to discover them. When I started writing at 35 I seriously doubted I would actually accomplish anything because of this foggy condition. Now, at 50, nearly 51 the fog is still there, I just cope better…but nature has handed me another condition known as menopause which also creates fog. I watched my mother die of brain cancer, the outbursts, the lack of cognizant function, was debilitating for me too. Then my father had Alzheimers and dementia. I know that someday I may have these and it’s a scary road. Dealing with these things one at a time is very hard. I think your blog on highlights a lot of these hidden things that we all deal with. Good on you.

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    1. Thanks K’Anne. Yes, that unknown thing is scary isn’t it. Before she was diagnosed my Mum often used to say things like, I don’t remember ever seeing that before when I knew she’d seen it. When I hear myself saying those things it’s like, oh yuk! I’ve had this diagnosis for a while now and so far it doesn’t seem to be getting worse. It does help me live in the present and is one of the reasons I retired early — because I want to enjoy life while I can.

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  4. I’m with you on the losing words part. I can handle it in writing because, like you, I know how to find the danged words by coming at them from different angles, but in conversation it’s a real drag to grope for a word and then settle for a weak substitute. Especially when I’m having discussions with my writers after an anthology reading at a bookstore.

    My problem is usually with names, names of people, plants, books, movies, but also with the kind of thing Mark Twain meant when he said something along the lines of, “The right word is to the almost-right word as the lightning is to the lightning bug.” Hmm, I’ve never yet forgotten Mark Twain’s name, but if I do, it will be easy enough to recover.

    Some words get lost time and time again. I’ve even developed mnemonics to remind me. What’s that plant? Um, pink. Cyclamen pink. (I’ve actually seen that phrase used to describe a color.) Right, it’s a Cyclamen plant! Weirder is the one I use to remember the name of the useful shade plant Hosta; I think of Star Trek, and the Horta creature (living stone,) and then Hosta is an easy next stage.

    Actually, today I had no trouble remembering those names. More importantly, the word I was searching for last night while writing and had to place-mark with “hesitantly” came to me easily today. “Tentatively” is the right word. I hope I don’t lose it often enough to have to resort to thinking “Tentacles” to get to it. Still, tentative tentacles is a potentially useful image.

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  5. Yes, the name thing is terrible. Because my partner is a lot older, a lot of people we mix with are older than me. (I’m 57.) So with them I openly say how I can’t ever remember names and they are relieved when they hear it because we all agree to keep reminding each other. But it’s worse when I can’t remember names I should, like my nieces!

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    1. Allison, I applaud your courage being so open about this. I must have missed your announcement at GCLS being so blown away when I rounded a corner down ‘our hallway’ toward the registration table and you called out to me by name, ‘Anne Hagan, welcome’ and greeted me with a hug. I know my picture is on Facebook but, come on,,,there were 350+ women there, many, like me, you’d never met in person. You might be impaired, but you compensate for it in so many other ways.

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      1. You do yourself a disservice Anne. We had a LOT of interaction prior to the con, not just because you were a con virgin but because you’ve given lots of great info on the marketing page. I definitely did better with those women who had posted their photos though. I understand why some folks don’t but that definitely made it harder!

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  6. Hi Allison, About two years ago I was so scared because I, too, had memory issues. The scariest moment happened when I attended a neighborhood picnic. Someone asked me which street I lived on in the neighborhood. I blanked. I couldn’t remember the name of the street I had lived on for the past 10 years. I panicked and made some excuse that I had to check on something or other. The next day, I made an appointment with an integrative medicine doctor. I needed to know why I couldn’t remember the names of my best friends kids, my street address, my phone number, etc. This has been going on for quite some time and getting worse. I was ready to face what I feared most because I felt not knowing was even worse. I’m happy to report after just a few short weeks, I found out the cause. I had a severe allergic to gluten. I suffered severe brain fog. After eliminating a food I’d ingested my whole life, I very quickly regained my memory. All problems cleared. On occasion, I have had gluten. I suffer days later with memory loss that last until it leaves my system. I know what to expect now if I eat it, so no panic sets in. (I had some at GCLS con and, yeah, I was off for a week or so later!) I was so scared to admit I had these issues, even to my better half. What this taught me was that knowing is better than not knowing. There are treatments and ways to ease the anxiety of memory loss. I am of the belief that knowledge is power, even if that means accepting that God has unique plans for us. It’s so much easier to move forward when we have peace and support behind us. Thank you for being open and honest about this. I have the feeling you will touch many people with this. Hugs Allison!

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  7. I am curious, after your diagnosis, did the doctor give you any tips on dealing with it, improving it, etc. I too have some of the symptoms you confess. I’ve often said I had “sometimers” but now some of my family say I have “mosttimers”. Dementia and the big A are a real fear for many of us when we know it can be inherited. My mother’s mother had the big A and my father plus 3 of his siblings suffered with the big A. I don’t think I have a chance! My biggest frustration and embarrassment is when I am looking at someone and I can’t come up with their name. I’ve never been able to read and understand and follow written directions. Currently i am trying to learn some new knots with paracord. Even with video instructions, I have to see it over and over. I wonder why I even keep trying! I know the journey gets complicated for those of us who are frustrated and fearful with memory loss. I am blessed to have a partner who seems to be functioning just fine and I never forgotten her name! I’m glad you do too! Blessings on your journey. Trinka

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  8. You’re a brave woman, Alison. I admire your honesty and recognize your struggle. There are so very many things I wish I’d written down over the years, gone forever. Plenty of post-college courses were never recorded anywhere and now are no longer even remembered. What else is missing and how will I ever know?

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    1. That’s why I’m grateful to have Carol as my memory. We’ve been together 25 years so she helps me remember a lot of things from the past. I can’t tell you how often she’ll say, remember that woman we met who… or remember how so and so told us such and such… and I’m just amazed.

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  9. Alison, to be honest, your blog left me feeling a bit shaky. While I’ve never had it diagnosed, I’ve always wondered about my own memory. Well, not always. Since an extensive series of electroshock treatments nearly 20 years ago. I was in a fog state so badly that twice they had to stop the three times a week treatments and send me home from inpatient hospitalization to wait out my cognitive impairment’s setting itself right again. Then they would start back up. I guess I can say the ECT (Electro Convulsive Treatments) saved my life from a horrific depression but it left me so cognitively impaired that I couldn’t write a sentence for a year and totally quit fiction writing for nearly seven years, till a lover goaded and teased me back into it. The real problem is that over the last year, it has gone backward…I am feeling progressively more impaired rather than maintaining. I could attribute that to the Fibro Fog or menopause, but this has a different tenor to it and it’s frightening. Your blog dredged all of this up and out of me in record time and while I try not to decenter the author and shove myself into an answer/comment/reply totally, you did ask. Oh, dagnabit there is a prime example. in all the digging up of 18 years ago, I forgot that 2 weeks ago, I was diagnosed with a brain aneurysm. Wonder if those could be related? Anyhow back to you….thank you SO MUCH for this. I apologize in advance for the next several emails/FB messages I might send you about this and the writing, particularly the editing and revising. Thank you for your courageous outing of yourself and for making the space for us to out ourselves! It is a good thing. I actually told a Microsoft employee last year that I have a memory impairment and we had to walk through something point by point and it worked for me and wasn’t excruciating. And she gets paid by the hour decently she said so it wasn’t for her either, Keep coming out! Now if I don’t chicken out and hit delete all, It will be in honor of your bravery. Brava!
    Ona

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    1. Brava to you Onamarae. I know there are lots of folks out there with all kinds of memory impairments for a whole variety of reasons. Some of them talk about it more, others don’t. This isn’t a brand new diagnosis for me so I’m not even sure why I chose to do it at this time, but I do a lot of work around memory issues and I see so many people struggling with them that I felt it was time.

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  10. Kudos to you Alison for taking your next step “out of the closet”. My grandmother had early onset Alzheimer’s and her daughter, my mom, developed metabolic dementia. Basically she couldn’t intake enough food after a gastric bypass that she kept losing weight till she was 72 pounds, chronically malnourished. I watched them both waste away in front of my eyes.

    I have fibromyalgia and neurological deficits from having it since my early 20’s. I’m now 53. Fibro fog really screws with my ability to hold a conversation. I feel aphasic when I can’t figure out what word my brain is searching for. It makes me feel stupid and I hate that feeling!! I’ve always felt smart but it is hard to remember this has nothing to do with my intelligence.

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    1. Gosh Dian, what a terrible thing to have to see. I’m not sure if I feel stupid when these things happen because I know why they’re happening and that I don’t have much control over them. I don’t even care if other people think I’m stupid (like the person I introduced myself to at the Con on Tuesday evening and then again on Wednesday morning and she said very politely, yes, we did this yesterday!) I just don’t want them to think I’m dissing them or that I’m not interested in what they have to say. So yes, hold onto that fact that this definitely has nothing to do with intelligence. In fact, Alzheimer’s is more prevalent amongst intellectuals…

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  11. Yep, me too. No test, but those are my symptoms. It gets pretty scary and I sure appreciate your helpful, well thought out and expertly expressed blog. A couple of things. One, I mostly now use http://www.powerthesaurus.org, a crowd-sourced resource. Often, though, all I need it for is to focus me and I’ll come up with the words I’m looking for on my own. This tells me that I haven’t lost my memory, that I should slow down and give myself more time to access it today than I required at age 30. Two, when I am stressed/overwhelmed, as I always am in social situations, even in pleasant social settings like GCLS, my memory slows to a mere crawl and stays there for weeks after the event. It’s no big news that stress, or illness, can impair memory and function, but it is reassuring to acknowledge that’s what’s happening. I agree it’s also helpful to let people know what we’re dealing with to avoid hurt feelings. I compare it to losing one’s hearing: it’s only fair to explain why I’m sitting like a log in a noisy restaurant and everyone around me is animatedly talking. Like you, Alison, I am very fortunate to have at my side a woman who, in Lainie’s case, has more wits about her than I’ve ever had. She calls me, of course, her absent-minded professor.

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  12. Alison, I can emphasize with you regarding your Mother. My Dad had Alzheimer’s before they called it that. I was still in high school. It’s how I got to move to Florida. It was an interesting experience. My Mother had dementia due to TIAs and mini-strokes beginning a few years before she died in 2002. With both of them having issues with memory and cognition I worry about MCI as well. Your “coming out” with this is a good thing. Coming to terms with our humanity is always risky. I believe that being more open with these type of issues demystifies them. We can learn to cope better, others can be aware and hopefully we can help each other along the way.
    I have never been good with names of people so I can commiserate with that issue. As a teacher, students would always give me a hard time about that. Anytime I can’t remember where something is or what I said to my students (I’m a college prof in MD now), I think about getting tested. I haven’t been tested yet but probably will in the future. But it’s scary since I get to think for a living these days…..
    I look forward to your telling of tales along your journey. I know I have learned from my experiences and learned to examine myself and others in a different light now.
    Keep the faith and keep writing!

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  13. Alison you are a wonder and I am so sorry you are going through this. I have no experience of it other than Deborah Hoffman’s very telling documentary. All my friends tell me I have a fabulous memory, but it isn’t the same anymore.
    You have great courage to tell your story, although now you have, I hope maybe the albatross of not saying anything has lifted. I am thinking of you and you know you have many, many friends supporting you. 🌷

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  14. Alison, thank you for sharing your story. I understand your post, and totally get it as well! I’m sure you have many people suggesting things that may help with tracking and keeping some information. I don’t have MCI. I have an Acquired Brain Injury. I had brain surgery and subsequent massive brain bleed causing me and my brain to be without Oxygen for 2-3 minutes. I’ve come back after a lot of rehab and a hell of a lot of work every day since 2009 relearning everything. My biggest problem was coming back with good memory! I learned a lot of tricks, techniques, and tools. I’m glad you have your wife for back up. I started over at a 3rd grade level in ’09. I’m running a nonprofit organization now. If you are ever interested in any of my tools and ways I have made up to help me remember things. I realize in your former profession you probably know more than I. Even if you just want to kibbutz let me know.
    Layne

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  15. Allison I appreciate your being so open. I have the same problem due to a neurological event 2 years ago. No one can tell me what happened so they call it a CVA who knows. I too had a good command of the English language but now not so much. Thank you for carrying on with your writing. Hang in there.

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  16. This was sort of a relief to read, in the “WOW I’m not alone” sort of way. I noticed in 2009 that my vocabulary was dwindling, and as that escalated, in 2015 I started having more severe memory problems. Thinking it was June when it was November, and being really disoriented trying to understand how it *could* be November. Being on the freeway 5 miles from home and not quite lost, but not sure how the freeway connected to my home. Hearing about a great book and then looking it up on Goodreads only to see that not only had I already read it… but I had read it the day before. A 9 month chunk of 2015 is pretty lost to me. I read a few books about Alzheimer’s and realized I would fail most of the tests. So I went to the doctor and had a battery of brain tests, only to come up with nothing – and at the same time my memory started working again. So Alzheimer’s has been ruled out (since that doesn’t get better) and a tumor was ruled out, but my neurologist could only come up with “memory loss due to possible seizures”. We have no real explanation of what happened, but your description matches mine right down to the puzzle ability. And though my memory is mostly back, I rarely review theater now, don’t always write book reviews either… the words only flow occasionally. But even though the scary parts aren’t happening, they still did happen and no one knows why. I’m not even sure what I have to say here, other than thanks for writing about your experience, and I understand, and I’m glad there are others out there who understand me.

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