Recently a good friend of mine, whom I haven’t seen in almost a year, invited herself over for lunch (a common occurrence, now that I’m no longer driving). She is my daughter’s age, with two children in college; one just finishing a year in Italy and the other in his last year at school on the East Coast. I well understood her absence, recalling how when our own children went to college out of state, and we also tried our best to keep in touch and visit as frequently as we could.
Our conversation flowed easily as we caught up on one another’s families, Joan’s job, and our mutual interest in our community’s growth and changes. I knew Joan was aware of my memory and cognitive issues, not only because of the published interview of me in our local newspaper but also because we have so many mutual friends. So when the conversation eventually turned to my health, I wasn’t surprised.
“How are you doing?” Joan asked as she leaned forward, emanating care and concern.
“I’m doing pretty good,” I said. Joan smiled, then said, “I’m so glad. But really, you seem great, like there’s nothing’s wrong.”
I’ve heard this same surprised remark many times. Usually during a situation similar to my lunch with Joan: I meet someone who I haven’t seen for a while…we spend some time catching up…then at some point I will be asked, “How are you doing?” Before I have time to give a full reply, they add, “You seem just fine.”
I know my ability to converse in most conversations seems “normal,” and I’m aware that I’m able to participate in most discussions; I can respond correctly and appropriately to questions, ask for pertinent information and interject ideas and logical thoughts—most of the time.
What is not apparent to the untrained eye is the unseen effort and work it takes for me to stay focused, to find the right word, to put together a coherent sentence, and then actually verbalize fluently. These days I’m a better listener than a conversation starter. And I’ve certainly lost my ability to recount a news item with accuracy, relate facts, or tell a story fluently. I get started and then realize I can’t retrieve germane details or recount the sequence of a story line.
Before my diagnosis—before I understood the degree of degradation, variation and loss associated with the memory and cognitive condition of MCI—I’m certain I would have uttered the same phrase, “You seem fine,” to someone else with a similar condition. So there is no blame being placed as I write this piece.
I understand it is impossible for anyone who isn’t affected by significant memory decline to really appreciate how frustrating it is to not know, what you know you know. The feeling of frustration is always accompanied by a shadow of sadness and, of course, loss.
I began my career as a special education teacher. When we lived outside the United States, I was the lead teacher in a school for non-native speakers of English. I continued to do the same when we returned to the U.S. After getting my MBA I entered the business world and taught management and communication programs to employees and managers.
Teaching is in my blood. I’ve had a natural gift of being able to translate, adapt, modify and transfer information. This is the definition of teaching: to know and transfer knowledge. While I can no longer teach, I continue to love learning new information. It feels as much of a nourishment to my mental health as food is to my body. I always have a book nearby. (Although these days I’ve realized I need to read on a very regular basis. If I skip a couple of days, oftentimes I have to reread portions to be reminded of the story line).
I know I still have a lot of information in my cranium, which I’m certain is why I so often hear: “You seem like nothing’s wrong.”
I mentioned before in one of my posts that early on after my diagnosis, I asked my therapist why I can still write. He answered, “You can still write because you’ve been doing it all your life. Its call Hardened Memory.” This term has been a godsend to me, in that I think hardened memory is also a partial answer to why I can, at times, carry on a conversation—that seems normal. Because as a teacher, I was good at giving examples, sharing stories, and using specific language.
But alas, unlike my friends, I can see my hardened memory is also now beginning to falter and fade. I can feel how much more work, concerted effort and concentration it takes to sort, retrieve, and verbalize.
It makes me deeply sad. Even though I “seem just fine.”