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It is fourteen months since I was diagnosed with Progressive Supranuclear Palsy (PSP), albeit it has really been with me for 6 years. But recent events have given me pause to reflect on where I am a year and a bit later, and for better or worse, the bottom line is that – I am still me.
Last night I wrote about being blinded for something over an hour. Recent posts have covered moving downstairs after we renovated, the pain in my legs, having a full-time carer, and the freezing that has become a feature of daily life and has caused me to back away from the synagogue I loved, the progression from a walker to an electric wheelchair to now being pushed, and the radical changes to diet to avoid the neurologist’s recommendation of a Feeding Tube. The evidence is not subtle. PSP is progressing at a clear rate.
Yet I’m still me. That makes me very happy.
In the time since diagnosis, I have seen my younger daughter married and very happy with her new husband, who is wonderful. I have watched my other two children grow into wonderful young adults who are decidedly no longer children, played a great deal of chess, written and published four books on Amazon, and produced more posts than most people could keep up with reading. I have even written and published two poems. For those who know me, and who knew me before, that last sentence will require a moment to absorb. In some ways I found a second wind. I’m not entirely sure how. I’m not entirely sure it was a conscious decision. But there it is.
I am an accountant by training—and by heart and data mean something to me. Since diagnosis there has been a truly astounding (to me) 121,000 views of my website by 69,000 people from 131 countries, each one a person probably touched in some way by this disease or similar. For a niche topic like PSP, that is something I simply could not have ever imagined. And yes, the most popular post remains the one about Diapers, Botox, and red lines, which in the light of yesterday’s post amuses me.
Writing matters to me (dictation largely if I am honest) and I hope to go on for a long time, although I can’t pretend that my weeping eyes are enjoying this too much. It is therapeutic and gives me meaning and purpose which is so key for me.
More than anything, reaching out has given me something more than filling all of the time I had, having been forced to retire. I have met the most remarkable people (almost all online, because I can’t deal with noise, crowds, and lots of people, as it causes me to freeze). People living with PSP. People caring for someone with PSP. People navigating similar diseases and their carers. I have myself been inspired by the stories of strength and hope and the messages I have received. And yes, saddened by the loss of people to PSP and the tales of the pain of caregivers
My good friends, who have shown up exactly as the friends I have known and many who have gone above and beyond anything I could have expected. A number of old friends and family have also become part of my picture which has been really a lovely benefit.
These encounters have given me strength and comfort in ways I could not have anticipated and did not deserve to assume. A strange gift inside a very difficult reality.
I want to be direct: I do not like this experience. I did not want this experience, and I still wish I did not have to go through it. It has been especially hard for those who love me, who have had to watch and witness and absorb and integrate something that does not get easier with time. Knowing what they carry, and having to watch them carry it, is the hardest part of all of this for me.
What I can say is this. A year in, I am here. I am thinking. I am writing. I am connected to more people than I was before. I have contributed something. I am not done. I have a second wind.
As always, I place my faith in G-d. I know that the expression “man plans and G-d laughs” is absolutely spot on and I simply don’t know what the next twist will be. But I trust in G-d.
And that, is enough.
Postscript:
A year ago, I posted this image with the first three columns, in the early days of my experiments with AI-generated images. Among my many challenges with PSP, I had apparently also lost count of my children, depicting two where there are three. The fourth column corrects this. My accountant’s brain clearly had an off day, which given everything else going on, I think is forgivable.
