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Yesterday was a day of enormous contrasts. A day of battling PSP, poor sleep, rigidity and frustration. And yet, looking back, it was also a remarkably good day.
I had a terrible night’s sleep, spending much of it awake dealing with the new and really unpleasant symptom I wrote about yesterday. My Garmin recorded no sleep at all.
I powered down in synagogue after just seven minutes. Almost completely rigid and unable to speak or move, I was wheeled home and helped into my new bed. Yes, the hospital bed, albeit a comfortable and wonderfully underwhelming one. People still try to convince me it isn’t, but I don’t buy it. I’m 51, sleeping in a hospital bed at home and, remarkably, I’m actually quite comfortable with that.
But the day continued.
I went for a very pleasant walk (well, roll for me) with a friend, my carer and our two dogs, until I powered down again and needed a rest.
I played chess with a friend and enjoyed a chat, although I was slow. I also spoke with other friends, had a lovely coffee with my aunt and spoke to all my children.
I continued writing, working on an article about the weekly Torah reading, with significant help from one of my children, and another, much more serious article about PSP.
I even did some drawing to relax for a bit.
And perhaps most importantly, with the help of many others, I seem to have brought the biggest health challenge of this week—constipation—under some kind of control. I have started a new medication and continued making changes to my routine. I cannot begin to describe the relief. I don’t know how long it will last, but for now, it is an enormous weight off my mind.
I returned to synagogue in the evening and even managed four episodes of The Diplomat.
Not a bad day, really.
Of course, I didn’t work, drive or do the hundreds of other things I used to do. I was slow, had many moments of discomfort, took my 44 pills, experienced real frustration and needed to rest frequently. I spent the day in my wheelchair, dealing with whatever PSP decided to throw at me.
But you know what?
It was life. My life.
And in many ways, a privileged one.
I am surrounded by family, friends, kindness and opportunities to do things that still matter to me. I can still contribute, enjoy myself, laugh, write and participate in the world around me, even if I do so very differently from before.
I’m increasingly trying to live in the present rather than constantly comparing it with the past or worrying about the future.
Yesterday was not an easy day. It certainly wasn’t the retirement I planned for or wanted.
PSP has changed so much about how I live my life.
But it hasn’t stopped me living it.
Yesterday had plenty of good bits and bad bits. But it was a good day.
It was life. And I want more of it.
