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Humor appeared in 85% of hospice visits observed in one U.S. study, and in 70% of those cases it was the patient, not the nurse or family member, who initiated it. (Adamle & Ludwick, American Journal of Hospice and Palliative Medicine, 2005.)
The authors concluded: “These findings were consistent regardless of hospice setting. Humor was spontaneous and frequent, and instances of humorous interactions were a prevalent part of everyday hospice work.”
At first glance, that statistic feels almost unbelievable. How can humor possibly belong in places associated with terminal illness, fear, decline and grief?
PSP is not funny. There is nothing amusing about a relentless neurological condition that progressively takes away physical independence and cognitive function. And to be clear, if somebody casually walked into my house making jokes about my PSP or laughing at my situation, I would probably throw them out within about ten seconds.
That is not what this is.
The humor in that hospice study was not cruelty, mockery or a comedy routine. It was patients themselves reflecting on the absurdity of what their lives had become, often with the people who loved and cared for them most. What struck me most was not even the 85%, but the fact that the humor usually came from the patients themselves. It was spontaneous, human and recognisable. I understand that now in a way I never would have before PSP.
When I reflect on the last few weeks alone, the absurd moments seem endless. There was the physiotherapy session conducted while effectively blind. There was the dinner conversation, conducted entirely calmly, about whether I should call an ambulance. There was sitting in the middle of the night writing on my computer while wearing sunglasses indoors to block out the bright light.
And then there was the Botox. I became, as far as I know, the first member of my family ever to receive it, and was then casually offered the option of extending the treatment to my nose as well, on account of a twitch that has recently developed there. Which honestly felt like the perfect icing on the cake. If somebody had described this version of my life to me a few years ago, I would have thought they were insane. Yet despite everything, many of these moments somehow ended in laughter rather than fear.
I keep returning to that hospice study because I think it captures something deeply human. The right humor, at the right moment, can make even terrible circumstances feel emotionally bearable for a little while. Not by denying the reality of PSP. Just by recognising the absurdity that now lives inside everyday life.
So forget the science and forget the studies. I simply know that I am part of that 85%, and I suspect many other patients are as well. I think people should know that, because before PSP, I do not think I would have understood it either.
One final thought for any British or Commonwealth-educated person still reading: I would also bet a reasonable amount of money that you have snarled at my use of the American spelling of humor. If I am right, please let me know. I used it because the study was American and I thought it might wind you up.
