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I may come to regret writing this as it may cause hurt to some people. People I love may fundamentally disagree with it. Some may even be offended by it. And I admit from the outset that what I am about to say is deeply selfish.
Before anything else, let me say this clearly: I hate PSP.
It is 2 a.m. as I write this. I am sitting in my wheelchair. It took what felt like forever to pull myself from lying down into a sitting position. A hoist, or if we are being less polite, a winch, is arriving today because I can no longer reliably manage it myself.
My eyes were glued shut with the gunk PSP so generously provides. Before I could write, I had to clean them with wipes, soap and water and put on my special lenses. Getting to the bathroom, negotiating bars and wheelchair, took the better part of half an hour.
My little 2 a.m. triathlon. I don’t know how much longer I will be able to do it. Sometimes, already, I simply can’t.
And the reality is that PSP will almost certainly get worse.
Already, I miss things that matter enormously to me. I could not attend a memorial event, last night, for the mother of a friend because I could not manage the stairs and crowds. I backed out of a wedding I desperately wanted to attend. At my own daughter’s wedding, the greatest day of my life and one for which I am eternally grateful, I froze and eventually had to be taken home well before the end.
PSP has taken a great deal from me.
It has made me dependent on people I love. Sometimes I become angry with them when I should not. I make their lives harder. I cause worry and sadness. Financially, it has made our family’s journey considerably more difficult than the life of plenty and retirement we might otherwise have expected.
I am 51 and six and a half years into a terrible, life-limiting neurological disease. So please understand the context of what I mean when I say what comes next.
There have also been extraordinary blessings within my PSP journey.
If, years ago, I could somehow have submitted a request to G-d saying, “If hardship has to come into my life, please let it avoid the things I fear most,” my list might have looked something like this:
Not my wife or my children. Friends I love are marking the anniversary of losing a child. I cannot begin to imagine that pain. The control freak in me would always choose for the suffering to land on me rather than on the people I love.
Let me retain my principles – Whatever mistakes I have made in life, I have not knowingly sacrificed my fundamental sense of integrity, ethics or responsibility to the people around me.
Do not leave me for years and years with almost nothing recognisably me remaining.
Allow me, when my life eventually ends, to leave my family without overwhelming debt or severe financial hardship.
Let me hold on to my cognition and my ability to communicate for as long as possible. More than six years into PSP, I remain profoundly grateful that I can still think, write, argue, joke, pray, communicate and annoy people, at least some of the time.
Give me purpose beyond my career – For decades, much of my energy went into professional achievement and personal success. I loved my career and remain immensely proud of it, but PSP has forced me to find another form of purpose: writing, helping, sharing and trying to give something back.
Give me time for faith and reflection – My former life was unbelievably busy. At times the stress of being a partner in a large consulting firm was suffocating. PSP has taken almost everything familiar about that life and, strangely, replaced some of it with simplicity. I have more time to think about G-d, family, purpose, mortality and what actually matters.
To that end, and, in a strangely selfish sense, PSP has brought a simplicity and clarity to my life that I never had before.
And perhaps protect me from becoming the author of my own tragedy: I drove too fast. I took stupid risks. I once drove legally at 235 km/h on the Autobahn with my family in the car. I once fell asleep at more than 100 km/h after a long working day and was woken by the technology in the car, which applied the automated lane control and automatic braking, before something terrible happened. I continued driving with PSP longer than, looking back, I probably should have, although I did eventually make the decision to stop voluntarily.
I was lucky.
Finally, let me show my children something worthwhile – Not perfection. They certainly do not see that in me. But perhaps some physical, mental and spiritual determination in the face of adversity. Perhaps they will remember that their father was frightened, that he struggled, sometimes behaved badly, sometimes fell apart, but kept trying.
Let me say this again because it matters:
**I did not want PSP. I do not want PSP. I would not wish PSP on anyone, and I absolutely would not wish it on somebody I love. I want to work, I want to travel, I want to have fun, I want to live, I don’t want to suffer. **
This is not a statement about what PSP patients should feel. It is a statement about me.
As I approach the Jewish High Holy Days and look at my own balance sheet, I cannot honestly look only at one side of the ledger.
There is undeniable suffering. There is also undeniable blessing.
I am a person of deep faith. If you are not, you may interpret all of this completely differently. Other PSP patients and caregivers may read this and profoundly disagree. I understand that.
But from where I sit tonight, I cannot escape the feeling that G-d has given me an extraordinary burden which, terrible as it is, has so far avoided some of the tragedies I have always feared most.
Those tragedies could still come. None of us knows what tomorrow holds. That does not make me thankful for PSP. I am thankful for what has been preserved despite PSP.
I still pray for treatment. I still pray for a cure. And personally, I pray for a soft and long landing. I pray to see grandchildren. I pray to watch my children continue to grow into remarkable adults. I pray for more laughter, more family celebrations and more completely ordinary days. I pray that I retain the ability to see goodness in people and in the world, and that I do not become the worst version of myself that PSP can sometimes bring out.
And if PSP eventually claims me, I pray that my family moves forward into happy and healthy lives, knowing that I fought it with everything I had.
There is a reason I felt compelled to write tonight. Friends I love are remembering the anniversary of the death of their child. They do not know, in advance, I am writing this and I hope they are not offended. I will not pretend to understand their loss. But watching the way they have somehow continued to love, give, raise their family and live has quietly taught me something about perspective, courage and gratitude. This article is dedicated to the memory of their beautiful son and to the comfort and wellbeing of this wonderful family.
Tonight, my thoughts are far more with them than with myself.
I don’t know what G-d has planned for me. There may be considerably harder days ahead.
But right here, at 2 a.m., after the struggle to get out of bed, clean my eyes and make my way to the bathroom, I find myself thinking something that I would struggle to say aloud and would never want another person to tell me I ought to feel:
I believe with deep faith that G-d, in a way I can’t understand, has a plan for all of us. In an undeniably selfish sense, G-d has been incredibly kind to me.
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Out of respect for people living with PSP, and for their loved ones whose experiences may be very different from mine, I have chosen not to share this in PSP support groups. This is a deeply personal reflection on my own journey.
