Have you ever been on a Zoom call where the screen freezes. Well yesterday the person on the call with me thought the screen had frozen but in fact it was me!

I am aware that there are not many people with an advancing terminal disease who are writing about their journey in real time. I find myself in that position, and I feel it is important that people see patients with serious illness as full human beings rather than as objects to be cared for. I published a slightly different version of this on my PSP blog, but I wanted to share it more widely.

Below is a short video clip from the NBC show Zoey’s Extraordinary Playlist, which includes a storyline about the main character’s father, who has PSP, the same disease I have. The show beautifully captures something essential. Even when a patient can no longer communicate, they are still very much present. I want to build on that idea through my own story.

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A Day That Was Anything but Ordinary

To add my own experience, I want to share a single day from my life with PSP. Living with a terminal illness is not one dimensional or even three dimensional. It is surprisingly complex, often absurd, sometimes frightening, and sometimes unexpectedly funny. I want to give a Day in the Life account of an unusually strange day that is not completely unrepresentative of what PSP can do.

The patient is not a thing that needs to be cared for. I am a person with major challenges who is still living, thinking, laughing, and struggling through whatever each day brings.

For readers who may not know, PSP is Progressive Supranuclear Palsy, a rare and aggressive neurological disease that slowly affects balance, movement, vision, speech, and swallowing. There is no treatment and no cure. Most medical literature describes an average life expectancy of six to nine years from the onset of symptoms. I am now in year six.

This is what one day looks like.

It was just after midnight when I sat down to write this. The day had left me slightly bruised but also smiling at its absurdity. What should have been a simple Tuesday turned into a mix of achievement, fear, comedy, and reflection.

I woke at 2:34 in the morning after a little more........

© The Times of Israel (Blogs)