“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?
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.
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…)
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!
Alison 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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