Because I’ve been open about my diagnosis, many people in my small town know of my condition. Although I’m retired, have given up my past commitments of serving on boards and committees and no longer drive, I still get out into the community. I go to the grocery store, local shops, the library, religious gatherings, and attend many of the unique and cultural events our small town is known for.
Whenever I’m out I encounter people from my past community engagement or professional life as a management consultant and trainer. It’s always a pleasant surprise to see a face from the past (faces which I usually remember, although not always with a name). Still, I’ve been taken aback several times when someone I haven’t seen in a while says—with a subtle but distinct tone of surprise—“You look great!”
I realize the comment is probably meant to be positive, encouraging, maybe even supportive. The first time it happened, I wrote it off as such and ignored the nagging feeling of defensiveness. But when it happened again…and again…I started to dig in to the discomfort I was feeling.
Upon reflection, it’s not the comment (or some might say, compliment) itself that bothers me. It’s the tone of surprise that rubs me the wrong way.
While I don’t expect my acquaintances to understand the condition of MCI to the extent that I do; I find myself questioning what physical changes people expect to see based on my diagnosis. Reacting with surprise that I still “look good” suggests some have anticipated a significant alteration in my appearance. Perhaps my facial features should have been affected in some way, like more wrinkles and sunken eyes? Or that I should look haggard, tired and drawn? Maybe my hair should have lost its luster, or gone completely white?
I find myself after these brief encounters feeling misjudged and dismissed. My initial reaction is to take a defensive stance. I want to retaliate and spit back, “What did you expect me to look like? Like a crazy hag? Yes I have memory issues—but I can still think! I can still carry on a conversation. And I’m still cognizant of my appearance and capable of dressing and grooming myself.”
I’ll be honest; the reason these assumptions strike me so deeply is that they echo the fears I used to grapple with—and still do. Fears I shared when I discussed learning about my diagnosis for the first time, and fears I think most people have at one time or another, as they get older and their health begins to change and gradually decline. Will I become an old hag, difficult to look at and dismissed by all? Living alone in my deteriorating world, needed by no one?
I do my best to bravely face these fears and remind myself to come back to the present—my health is good; I feel capable most days; there are people who love, need and respect me; and there are steps I can take to maintain my highest possible level of function and independence. But after regaining this sense of sanity for myself, it feels shocking and jarring to hear those same fears I thought just vanquished, echoed back to me from another person’s words…and in the guise of a compliment that feels like anything but.
After I calm down and recenter myself, I realize there was no insult intended, but rather, a lack of knowledge. A lack of knowledge I once shared.
I would like to respond calmly with facts, and somehow convey the entirety of the new mindset I now carry. I would love to share that while there is a great deal of media these days about memory decline and especially Alzheimer’s, the reality is there is very little general understanding about the degree and stages of memory loss and the wide spectrum of intensity. For instance, there is a huge chasm separating Alzheimer’s from MCI. There are a million steps between where I am today and the feeble, decrepit “old person” you’re picturing in your mind’s eye.
But of course, a chance encounter with an old acquaintance is no place to launch into a lecture. So instead I swallow my indignation, say a polite ‘thank you’ and the conversation usually ends with a courteous ‘It was good to see you again.’
I’m still struggling with finding a better way of dealing with these encounters, that would feel more true to my experience. Perhaps a way ‘to inform without insulting’ especially during a casual encounter in public places like the grocery store, or while checking out books at the library, or passing someone on the walking trail.
I would love to hear from you, the reader. If you have any suggestions, please offer them in the comments or in an email to me—because I haven’t been able to come up with anything satisfactory yet.