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I really didn’t want this to become a trilogy. I had a good night’s sleep!
Following yesterday’s wonderfully underwhelming experience with my new hospital bed, I want to share something from a WhatsApp conversation with an old colleague.
She had asked how I was doing. I replied with two short messages:
“Have some good moments but declining but trying my best.”
And then:
“Tonight is my first night in a hospital bed at home. Sort of says it all. Sending my best wishes.”
Her reply was wonderfully simple:
“Sending a big hug. Not sure what to say…”
I answered:
“You could not have said a more perfect thing. Thank you.”
And I meant it.
Sometimes there really isn’t anything to say. No magic sentence can make a progressive neurological disease disappear. No clever advice can reverse what is happening. And no comforting phrase can change the reality of where I find myself at 51.
But there is kindness. There is friendship. There is the reassurance that someone cares.
Sometimes a big hug, even a virtual one, says everything.
The conversation made me reflect on my first night.
The bed itself was a success. I slept well and woke up feeling reasonably okay. Another practical challenge had been overcome.
But what does success actually mean in this situation?
I am 51 years old. This is another milestone in a journey I never chose, another reminder that PSP is progressing and my life continues to change.
I cannot pretend otherwise. Nor do I want to.
But neither do I want to allow the sadness of these milestones to overwhelm everything that remains.
There are football matches still to enjoy, family moments to treasure, my children’s weddings to look forward to and, G-d willing, grandchildren to meet.
These are not abstract ambitions. They are the things that make me want to keep living, fighting and enjoying life for as long as possible.
I have a great deal at stake.
And perhaps this is what accepting reality really means.
It isn’t pretending that everything is fine. It isn’t living in la-la land, ignoring what is happening or putting on a brave face every morning.
It is acknowledging the reality without allowing it to become the whole story.
I can be genuinely delighted that the bed works while being deeply saddened that I need one.
These are not contradictions. Both are perfectly legitimate feelings.
Perhaps that is the real story of this little trilogy.
Part One was about the anxiety of another milestone. Part Two was about the wonderfully underwhelming reality of its arrival. And Part Three is about what happens after the practical problem has been solved.
The emotional reality remains.
But so does my determination to live, enjoy, laugh and love, and to make the most of whatever lies ahead.
And so does the extraordinary kindness of people who reach out, even when they have absolutely no idea what to say.
Sometimes “I’m not sure what to say” is the most perfect thing someone can say.
Hopefully, this really is the end of the hospital bed trilogy.
I have accepted that I need it.
That doesn’t mean I have to be happy about it.
To be continued…
