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Steve Wessler of Bar Harbor is a human rights educator, trainer and advocate specializing in conflict resolution. He teaches at College of the Atlantic. This column was first published by the Boston Globe.
I have Alzheimer’s disease. Of all the diseases I could contract, Alzheimer’s was the one I feared most. It strips you of who you are. Your memories drain away, for some with speed and for others over a longer period of time.
My trajectory from the first sign that something was wrong to where I am now has been several years. I teach courses on human rights issues at the College of the Atlantic in Bar Harbor, where I also live. Before my diagnosis at 71 years old, I found that I struggled to find words during class. I became adept at simultaneously talking and searching for a word. I developed this skill while working in Kosovo and other countries. I had excellent interpreters, but I realized that every time I spoke a sentence with three or more words, the risk of there being a translation mistake increased. Over time, it has become increasingly harder to find words.
I then went to a neurologist. He described my condition as mild, but when I took a 90-minute test of word associations and a range of other tests, I felt miserable, as if I had failed because I had not worked hard enough. I had a choice: to hide my disease or to talk about it. I chose to do the latter. At first, not to everyone but to many. My sons, my partner, my brothers and my closest friends, some people I work with all know about my situation. They keep me afloat when I feel low.
I’m particularly vulnerable in those moments when I’m home alone. I’ve listened to jazz for my entire adult life; it takes me to soaring heights of beauty and can also leave me feeling great sorrow. Over the past year, I have sometimes struggled to name the jazz musicians whose music I love, the exception being John Coltrane. I worry that at some point it will be difficult for me to recall his name, too.
Every new thing that takes away my memory is hard until I talk with my sons, my partner, or a few others and find comfort in their support.
Now I’ve decided to share my diagnosis with as many people as I can. I do this because when we don’t talk about it, people with Alzheimer’s like me become isolated. It’s been my experience that many people don’t know what to say when they talk to someone with the disease. They talk about many things but not about my Alzheimer’s.
Recently I was at an event where I knew everyone there. Though they’re wonderful people, we talked about everything but Alzheimer’s. I think that if I had cancer, my friends would probably have asked about my disease or even asked if they could help. Another time, I ran into a casual friend at a store. I had previously told her about my Alzheimer’s disease. We talked for a few minutes, but she never mentioned my diagnosis.
Why does this happen? Perhaps they think it will cause me to be upset or remind me of my disease. Perhaps they do this with kind intentions.
But while I don’t think about Alzheimer’s all of the time, it’s always there. Always there.
I recently had a conversation with Meghan Lemay, the regional manager at the Alzheimer’s Association in western Massachusetts. She told me that what I experienced with my friends occurs all the time. She gave an example: In a small town where a woman with Alzheimer’s saw a friend in the grocery store, the friend completely ignored the woman. Lemay said this can isolate Alzheimer’s patients. But even worse, the fear of stigma can lead some people to avoid telling anyone about their symptoms, including their doctors. This is particularly serious because patients may not learn about a set of new treatments available only to people in the early stages of Alzheimer’s that can reduce the speed of the disease.
What would I want my friends to say? It’s simple: “I am sorry you have Alzheimer’s disease.” Or “How are you feeling?” Or “Can I do something to help?”
Not long ago, I was on the phone with a friend. I explained that I will need to drive from Bar Harbor to medical appointments in Portland. This is about a three-hour drive each way, a trip I will need to make every other week. My friend said, “I like driving. And I usually like you.” I laughed. He was offering to be my friend just as he has always been.
When I decided that I needed to tell the provost at the college where I teach that I have Alzheimer’s, I thought the school might decide it did not want me to teach any longer. Instead, the provost said he wants me to teach as long as I can, and he offered to hire a teaching assistant. His response sent the message to me and to my colleagues and students that just because I have Alzheimer’s, I’m not incapable. He offered the support I needed to teach with confidence
Not long ago, I made the decision to tell my students about my disease. I thought it was important for them to see that Alzheimer’s has stages and that behind the disease is a person.
All of us can do what my provost and my students did for me. All of us have the capacity to support Alzheimer’s patients, whether it’s by saying hello in the supermarket, offering to drive a friend to an appointment, or supporting them so they can continue working until they need to stop. Only by breaking the silence can we end the damaging stigma around this disease.
I’ve spent most of my life trying to reduce bias, degrading language, and violence around the world, from Northern Ireland to Kosovo to the United States. I have done this by bringing to life the people who are torn apart by violence and discrimination. But this challenge is different. I know that Alzheimer’s will take my life unless something else comes along sooner.
At the end of the fall term, I told my students how much I appreciated their work in the course and how they treated me not as a patient but as a teacher. I then said, some of you will come back to this school in 20 years for a visit. If so, you might see a small, hunched man of 92 walking into class to teach about human rights.
There was silence. Then they laughed. And I laughed, too.