Living with Mild Cognitive Impairment
The regional hospital took nine months to render a diagnosis: I was living with “mild cognitive impairment.” A miserable cold forced me to cancel one test. That sent me back to the end of the two-month waiting list and made the ordeal that much more exquisite.
Diagnosis in hand, I took 18 more months to find acceptance, and still nine more to grasp a scintilla of gratitude and comfort for what it had brought me.
Having lived in the shadow of Alzheimer’s disease for more than 15 years—as a caregiver and helpline worker for the Alzheimer’s Association—I attached a powerful foreboding to the term mild cognitive impairment. (Let’s call it MCI and preserve untold digits.) In the Alzheimer’s world, MCI seems certain to be a prelude to dementia itself. This makes it a misnomer! We should call it “wildly alarming cognitive impairment” --WACI if you will.
People at the hospital were at pains to point out what it really meant. The cause of my condition was not impending Alzheimer’s, but “vascular disease and other risk factors.” I was more likely to have a stroke or heart attack than Alzheimer’s, even with a single copy of the dread APO-E4 gene in my genome. But I found this difficult to take in. They had confirmed my memory loss, blaming it on excessive “white matter” in my brain. Remorse had its way with me—regrets for all the bad habits I had failed to overcome and the good habits I had never formed.
I didn’t know what to call this second new tangent. I started out with re-inventing myself, but that verb feels overused. So let’s just say I am re-imagining myself.
Left to ponder this injury to my once-extraordinary memory, I eventually felt moved to take two new directions. First was to restore internal respect for my memory. One day I heard myself liken my memory to a sieve. And with justification: During a neuropsychological test, I would be asked to repeat several words just uttered by the examiner. I might recall one or two, perhaps not even in sequence. And then a complete blank. I felt I had failed spectacularly, although the psychologist said the results were mixed. And I would still need my memory, however impaired it might be. I opened a meditative campaign to express gratitude for the many times memory had served me well. I began to recognize patterns in my lack of recall. Sure, I might forget what had been said in the moment, but when I could not think of a word or phrase, I would retain an image of the sort of word (verb or adjective, say, or starts with ‘d’—though often there was not even one d) and context. Sometimes days will pass before an answer appears. Companions might help me coax it forth, or my memory would search quietly on its own. Here is one word I almost always fail to recall when discussing my years as a volunteer board member of a local history museum. I can usually describe the word’s meaning, but could require hours to retrieve the word itself, with all its delicious specificity. Provenance: the chronology of the ownership, custody, or location of a historical object—the very qualities that make an artifact valuable. More recently, my relationship to this blog has me struggling with analytics, the term applied to data showing how readers are interacting with a blog. * †
So I have incorporated “memory” in my loving-kindness work, asking that I frequently express gratitude to memory for its salutary service and show confidence it will prove valuable in the future—perhaps even in ways I cannot yet envision. Memory appears to be gratified and encouraged by having new assignments.
Oh, and then—what’s that, you say I mentioned two new directions? I did, didn’t I!
I didn’t know what to call this second new tangent. I started out with re-inventing myself, but that verb feels overused. So let’s just say I am re-imagining myself. This is more challenging than trying to chase memory across a vast, arid plain. Where should I put my energy? What goals will I set? First I would have to overthrow a bunch of resolutions I made just a few years earlier when I moved into the coop. I joined the major governance committees, such as finance and marketing. I pictured myself joining the board and eventually serving as its president, putting to use all the lessons I had learned from writing editorials about city hall. Plus I would rely on my experience as a volunteer leader.
The new me would not cooperate. This me could not draw up an agenda because he didn’t remember what had happened during the last meeting. He still understood the issues and could discuss them intelligently, but as soon as he left the room the details grew vague and hazy. I had no choice but to resign from all my committees. I tried sitting on a committee that was not engaged with governance, but I could not stay on top of its agenda, either. So I retreated to activity groups, as their agendas were more flexible, and my occasional walkabout would cause little harm.
I put more energy into developing my loving-kindness practice, hoping it would help me focus on the qualities I needed to develop and welcome in others. I decided to start this blog and was gratified to see that my writing remained coherent. Oh, of course in rough drafts I would discover writing errors, such as using the same word several times in a paragraph. But patience and a thesaurus helped eliminate these woes. And on the plus side, I found that becoming a blogger drew me to open doors the old me might never have noticed.
There’s so much more here: shelves full of prescriptions, vitamins, and supplements; the search for a new set of doctors, both primary care and specialists, and my struggles with the CPAP machine, so essential to managing my sleep apnea. Not to mention my periodic resolutions to banish certain pharmaceuticals. Now, that discussion could redefine tedium!
And then memory handed me this amazing gift! It was an event that dates back more than forty years—a glimpse of an enduring me that has persisted throughout all my efforts to redefine myself. So while I hate ending a blog post with a cliffhanger, I must do so today. Watch this space, coming soon: “Mild Cognitive Impairment Revisited.”
*I had the word in mind when I started to write this sentence, but it disappeared. As I retrieved a document I knew would contain it, analytics popped into my mind.
† On occasion I have tried to explain my diagnosis to fellow members of my co-op—where the average age is well above 80. They wave their hands dismissively when I come to memory. Oh, we all have that, they are wont to say. Think of all the trouble they save by eschewing a diagnosis!