Weeks before I received my diagnosis of early-onset Alzheimer’s at age 54, legendary basketball coach Pat Summitt died after a five-year battle with Alzheimer’s. She was 64 years young, meaning that she received her diagnosis of early-onset Alzheimer’s while still in her 50s.
I did not understand much about Alzheimer’s at the time. So it is not particularly surprising that I assumed that Summitt’s Alzheimer’s journey would be similar to mine.
In my mind, therefore, I gave myself five years to live. And I believed that those five years were not going to be pleasant as Alzheimer’s speedily spread through my brain.
Today I know that each and every Alzheimer’s journey is unique and that it is in fact quite unusual for someone to pass away so quickly from early-onset Alzheimer’s.
I was reminded of Pat Summitt’s journey this week as I marked my 58th birthday. It’s pretty clear now that Alzheimer’s will not be taking me by age 59. Some doctors have suggested that I may live for decades with an Alzheimer’s diagnosis.
I’m going for quality (of life). And lest you think that I’m currently wallowing in deep dark spaces, I’m enjoying life, resisting Alzheimer’s with all I have.
Of course no one knows what my quality of life will be during those few decades. Alzheimer’s moves slowly but it tends to move steadily. The deterioration can take a long time, but with no cure and certainly no treatment, there’s only so much anyone can do to hold it back.
A year ago, in an essay for The New York Times, I wrote that Alzheimer’s can also lead to thoughts of suicide. “Facing the reality of losing your mind is devastating,” I wrote. “Combine that with the fear of being helpless and dependent on others for everything and, at times, ending it all seems like the smart choice.”
I added that I’ve come to passionately believe that assisted suicide or so-called rational suicide is a human right.
My 58th birthday also reminded me of a thought provoking interview in the MIT Technology Review with Ezekiel Emanuel, a medical doctor and chair of the University of Pennsylvania department of medical ethics and health policy.
I don’t recall Emanuel’s original Atlantic essay titled “Why I hope to Die at 75” in the Atlantic. I may have read it back in 2014, but back then questions of mortality were not top of mind. I certainly didn’t think about them as much as I do today.
The thesis of Dr. Emanuel’s article is that he believes that older Americans live too long in a diminished state. Put succinctly: is our consumption of society’s resources after age 75 “worth our contribution”?
That’s a truly fascinating question and I could argue it many different ways. What really made me sit up and take notice was the following snippet of the interview: “I do fear death. But I think I fear being sort of decrepit and falling apart more.”
There I’m in strong agreement with Dr. Emanuel. If by some chance I am still around in two decades and have enough decision-making ability left, I will follow his advice and refuse any medical treatment at age 75 and beyond. That includes antibiotics and immunizations.
The interviewer pushed back and asked Dr. Emanuel what if a pill was developed that could add a few years of life. “Then the question is,” Dr. Emanuel replied, “what are the downsides of that? There may be a cognitive downside, maybe a little more mental confusion.”
“It’s very funny,” Dr. Emanuel concluded. “Every time I talk to people, it’s like, ‘Oh, yeah, definitely quality of life over quantity of life.’ But when push comes to shove, it’s really quantity of life.”
I’m going for quality. And lest you think that I’m currently wallowing in deep dark spaces, I’m enjoying life, resisting Alzheimer’s with all I have. These days, I’m planting myself on a stationary rower for about 10,000 meters a day and working hard to eat better so I can lose weight and improve my overall health.
I’m also increasing my advocacy efforts for Alzheimer’s. I’ve joined the Board of the Delaware Valley Chapter of the Alzheimer’s Association and hope to speak more on behalf of myself and the 5 million other people living with Alzheimer’s.
Don’t worry. There’s a lot of life left in this guy. I hope to be writing and talking and fighting and loving for a long time yet to come.
Phil Gutis is a former New York Times reporter and civil liberties and environmental advocate who was diagnosed with early-onset Alzheimer’s in 2016.