Then the LORD said to Cain, “Where is your brother Abel?”
“I don’t know,” he replied. “Am I my brother’s keeper?”
—Genesis 4:9 (NIV)
Cain, we need to talk. Being brothers is special. A gift. I have pledged to my brother that I will be there for him. Always.
My brother Mark’s doctor smiled at us, an uncomfortable smile. He placed an MRI scan of Mark’s brain on a view box. There was an ugly, ominous black circle on one side. We just stared at it. My brother was frightened. And confused. So was I.
Earlier, the doctor had shown Mark pictures of people he would know. President Obama. Abraham Lincoln. George Washington. All famous. All people a fourth grader would recognize. Only my brother didn’t recognize any of them.
Mark has a bachelor’s degree from Stanford. A law degree from Georgetown. He passed the California Bar Exam on his first try. Years later, at 50, he was admitted to graduate school in architecture at the University of Washington. He designed and built his own home. See what I’m saying? Stanford. Georgetown. U. of Washington. One smart guy. One impressive brain. Only now, he didn’t recognize George Washington. Or Honest Abe. Or Barack Obama.
“It’s called frontotemporal dementia,” said the doctor. Specifically, semantic-variant primary progressive aphasia, a type of FTD that primarily affects the areas in the brain responsible for speech and language. “That’s why you have trouble with words. And with names and faces.” A beat, and then: “Any questions?”
The doctor continued. Untreatable and irreversible. Those were the words he used. He delivered the news like he was giving a college lecture. But he wasn’t. He was giving my brother a death sentence.
“How did this happen?” my brother asked.
“Just dumb luck,” said the doctor.
Dumb luck? Spending $5 on the SuperLotto and winning a gazillion dollars is dumb luck.
Any questions? You just told us that my brother is going to suffer a very slow death. That he will lose control of his body. That he will start acting out, losing the part of his brain that knows right from wrong, acting on impulse, possibly doing strange, embarrassing things in public. His ability to understand his actions, the filter we generally have, will be gone.
He was giving my brother a death sentence.
We sat there for a moment. I’m not sure how long a moment is, but it’s an eternity when you’re talking about your brother’s life and death. Cain, are you listening?
The doctor told us again: There is no treatment. None. Zip. Nada. He told us that FTD is rare. That we don’t know what causes it. That it’s not Alzheimer’s, though people often confuse the two.
“What do we do now?” I asked.
“FTD won’t affect Mark’s motor skills, at least not for a while. But keep an eye on his driving. Maybe come back in a year and we’ll reevaluate. Gotta run. Got other patients. Have a nice day.” Pretty sure that’s not what he said. But that’s what I heard.
I started doing my research, and I learned that FTD is the most common form of dementia diagnosed in people under the age of 60. Mark was 64. The disease had probably started years earlier.
In 2010, five years before his diagnosis, Mark came to me and said, “I have Alzheimer’s.”
“No, you don’t,” I replied. “That’s ridiculous.”
He went to several doctors. They ran tests and told him he did not have Alzheimer’s. I was relieved. He was not. He was still convinced there was something wrong with him, that his Stanford–Georgetown–University of Washington brain was no longer doing what it was supposed to do.
In 2013, while we were visiting our sister in Los Altos, Calif., Mark took me into her backyard, where she raises chickens. He pointed at a chicken, and asked, “What’s that called?”
The chicken?
“Yeah, that’s it. Chicken. Chicken.” He repeated the word as if he were trying to memorize it. Over the next few weeks, he would ask me the names of several other common, everyday things.
It would be another two years before we learned that his difficulty naming objects was a sign of FTD.
They ran tests and told him he did not have Alzheimer’s. I was relieved. He was not.
A year into his diagnosis, my brother’s condition had not affected his behavior. At least not much. The only change I’d noticed was that, now, when we played golf, he had to clean his golf ball after every hole, using one of those green golf ball washers located at every tee. Once, while I was driving our cart, I forgot and just drove by the washer. Mark jumped out.
“Be right back.” He ran to the washer. I smiled. If this is as bad as it gets, I thought, I’ll thank my lucky stars. But I knew it would probably get worse.
Very few of us spend our days as an Albert Einstein, a Michael Jordan, a Mother Teresa. Many of us live years in quiet desperation. That was Mark. He searched for meaning. We all do. That’s what makes us human. But I fear his search is over. His brain simply no longer works that way. It no longer searches. Maybe that’s a blessing.
For about six years after his diagnosis, Mark lived a relatively ordinary life. But in 2022, I realized that my brother, my best friend, no longer recognizes me. He shows no emotion. He seems neither happy nor sad. And I suppose that, too, is a blessing, because when he was first diagnosed with FTD, he was terrified.
Now that actor Bruce Willis has been diagnosed with the same form of FTD as my brother, I hope there will be more of a focus on this terrible disease. A cure will probably come too late for either of them.
To answer your question, Cain, yes, you are your brother’s keeper. Or at least you should be. Give thanks for that bond. I know I do.
Stan Wilson, ’74, is a retired Peabody Award–winning broadcast journalist who lives in Stateline, Nev. His brother, Mark Wilson, ’73, lives in Seattle with his wife, Gloria, in the house he designed and built. Email Stan at stanford.magazine@stanford.edu.
