Today has been a truly uplifting one, and I wanted to share it.
No – there is no cure or even treatment.
No – the basic realities of PSP remain unchanged, and the challenges are immense.
No – I am still the same me, a choking attack away from a feeding tube, but I just drank a glass of water with added thickener (which had been mixed in the fridge for a few hours), and it tastes like… water. But that’s not why I am full of hope—just a pleasant surprise, maybe.
And no – I have had no supernatural interaction, nor am I on any hallucinogenic drug.
So Why? It is because of the responses I received to my article on “They” – from some people with PSP but mainly those caring for partners and loved ones with PSP. There were, of course, replies and comments about the awfulness of PSP and how it has impacted many patients and their carers in their connection and relationship. To all those people (and all facing PSP as a patient or caregiver or loved one), I send my deepest love and prayers because I know there are no easy answers here. It has been a tough road so far, and I know it will get harder.
So, this is not a false hope article – it is hope in the face of tremendous odds. I re-read a quote from Viktor Frankl just now in the simply amazing book “Man’s Search for Meaning,” which he wrote after surviving three concentration camps, including Auschwitz. He says: “Once an individual’s search for meaning is successful, it not only renders him happy but also gives him the capability to cope with suffering.”
Tonight, I fully believe that and it is based on four sets of responses from people:
Firstly, many of my family and friends – whom I never doubted – found different ways to triple down on the fact that I will never be a ‘They,’ and I believe them. It is however relevant to say that not one disagreed with the fact that I am, and always was, a pain in the back, neck and worse.
Secondly, a number of people sent incredibly touching messages, responding in a way that brought tears but real hope from people, some of whom had been through the process to the bitter end, telling me that despite all odds, they believe that until the very end, their loved ones were never ‘They.’
Thirdly, I received replies saying that in many cases, their loved ones remained present and compassionate – each in different ways, many despite terrible symptoms. Some talked about their loved ones in the past tense, and some in the present – but those who replied this way reflected that PSP has varying degrees of impact on behavior (as it does on physical and cognitive decline), and a number didn’t suffer the total loss of the ability to engage and show empathy and understanding.
Lastly, a few people reached out to thank me for raising this topic, saying it gave them a little more understanding of the journey their loved ones are going through. It helped explain that many of the symptoms they see are medical and not the patient’s fault or doing.
Whilst this doesn’t alter the practical realities of PSP, it gives me a much stronger sense of hope – that there is a path forward to a life with meaning and connection. And this is my biggest fear by far.
As a person of what I hope is deep faith, I shouldn’t need it – trusting in G-d should be all I need to know. But this sure helps, knowing others are living and experiencing it. That gives me more strength – and yes, hope.
To borrow a second quote from Frankl: “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”
I choose to be positive, to live life to the extent I can to the fullest, to take precautions to reduce the risks I face, to continue to try to give especially to my loved ones, and to be grateful for being able to find meaning within a community that includes truly inspiring people dealing with the most difficult of circumstances.
