This is something I started to write quite some time ago—around January 2006. My dad passed away in early May.

On a chilly day early last November, we lost my dad for 90 minutes.

My parents have always been fond of an afternoon constitutional—a meander around the reservoir in Central Park for a little fresh air and exercise. The day we lost my dad, a friend had made an offhand comment about a walk that my dad misinterpreted as an invitation. When the friend left, my dad thought that he was meant to follow. He put on a thin jacket and went outside, only to become disoriented and unable to find his way back.

Thankfully, he was eventually able to regain his bearings—but not before he was cold and shaken. My mom had already called the police, having panicked upon returning home to an empty apartment. The police told her to consider attaching a GPS tracking device to my dad, so that she would always be able to find him should he “wander”.

My dad is 58 years old. Late last year, he contracted Progressive Multifocal Leukoencephalopathy [PML]—a brain infection that affects people with compromised immune systems. For that reason, it’s most often seen in AIDS patients. Unusually, my dad contracted it after several bouts of chemotherapy—to combat Waldenstrom’s macroglobulinemia, and as a follow-up to surgery for colon cancer.

PML has a relatively rapid progression. Since the walk incident, my dad has become too tired to leave his bed very often. He is unable to articulate things as simple as the date of his birthday, or what day of the week it is. It has been quite some time since he could read, or play even the simplest of games. He has significant difficulty with silverware, preferring to eat what little he does with his fingers. The function of tools confuses him—he does not know whether a bottle opener or a corkscrew is the appropriate implement to open a wine bottle, or whether a spoon or a knife is better for eating soup.

Watching someone succumb to a degenerative brain disorder is heartbreaking. Every single day, another little piece of the person you love slips away. And every single day you have to try a little harder to connect with that person, because they understand a little less of who you are and why it’s important. Why you’re important, and why they’re important to you.

I wish often that I could look inside my dad’s mind and know what he is thinking. Sometimes he seems unable to understand the most basic speech. Other times, he manages something as complex as making a joke. Last week, my mom had the sudden impression that he had forgotten who she was. So she asked him, “Do you know who I am?” After a pause of minutes, he managed to articulate, “Brunhilda”—a name he has called her in jest for years.

But every day, simple things become a little bit harder for my dad: it takes a little bit longer for him to get dressed; his hands get a little bit shakier; he spends a little bit longer sitting on the side of his bed, staring out the window, his shirt lying next to him—apparently because he has forgotten that he was going to put it on.


My dad is smart and witty. There’s more than a bit of clown in him. He likes to hike, golf, and bike. He wakes up early to drink mud-strong coffee, eat his daily cornflakes, and read the newspaper. He can usually beat me at Scrabble, and his computer keeps working despite the fact that he never lets me fix things for him. When I was little, he used to rake up all the leaves in the back yard into a giant pile so that we could jump in them. His scrambled eggs are perfect every time. He has a penchant for odd hats, and never gave up trying to persuade me to drink more.

He has spent most of the past 40 years working extraordinarily hard. Only recently has he begun to really relax and enjoy the fruits of his labor. He plans to do many things—hike in the Himalayas; sail off the coast of Maine; find a house in which to settle down and grow into a cantankerous and somewhat smelly old man who barks at his grandchildren (always one of his dearest wishes).

It gets easier, but not fast.