One Day Inside My Head: From Prevention to Faith, via Emojis and Death

I used to think I lived an insane life before PSP. I’ve taken it to a whole different level. Yet rewinding yesterday reveals something strange: how normal all that insanity felt at the same time.

I suspect many people living with PSP, and many caring for them, will recognise that too. Life becomes simultaneously smaller and larger. Smaller physically. For some, like me, who are fortunate to retain cognition, it can become larger intellectually, emotionally and spiritually. I am fortunate that I can express it. Many others live it nonetheless.

Yesterday was a good example.

So much of the day was what you would call average. I played four games of chess against three friends face-to-face and lost three of them. I watched an episode of Person of Interest with my wife. My mum came for lunch.

Physically, I travelled almost nowhere. A short walk. Synagogue.

As this was happening, PSP was making its presence very clear. I had enough pain in my legs to require an opioid, on top of my regular pain medication.

At one point I was so rigid, with so little sensation around parts of my face, jaw, arm and feet, that my carer ran a strong massage gun across my cheek muscles, neck and shoulders, and the soles of my feet to help unlock them, and I could barely feel it.

Normal people would call it torture.

Yet bizarrely, I still managed a round of yoga, 20 sit-ups, 15 press-ups and a one-minute pike.

If physically my day was a little abnormal, mentally it was a whole different game. I covered an astonishing amount of ground. My mind travelled from the sacrifices I have made to stay alive, to the relative value of an emoji, to a very real period of fear and back to meaning.

Most of that journey happened through writing. Or, more accurately in my case, dictating.

The day began with a blog and my thoughts on the prevention methods I take to avoid dying earlier than I otherwise might and to avoid having to go onto a PEG feeding tube.

I have given up my career, travel, walking and much of the food I love. Yet that too has become simply what it is. I have accepted it for the greater good.

Then, out of nowhere, a pivot to emojis.

Following a discussion with a friend, I became fascinated by whether a simple ❤️ can sometimes be a more genuine expression of care than asking somebody, “How are you?”

It piqued my interest intellectually and had me reading research papers. In the process, it reminded me of something PSP has not touched.

My body has changed dramatically. My curiosity has not. In fact, it has probably grown.

Within hours, that curiosity carried me somewhere much darker.

I was having lunch with my mum, trying to convince her to stay off the PSP support groups because I want to protect her, when I came across a post written by a widow. Her husband had suffered severe behavioural changes, and during the hardest periods she repeated six words to herself:

“Give him the best death you can.”

Fear, in fact terror, was ignited.

The possibility that I may become that person, and what my wife and family might one day face if PSP reaches parts of me it has not yet reached, truly scared me.

Then, after a rest to calm down, a segue to faith.

I joined a video call with two people involved in a Parkinson’s and PSP charity, and as we talked about faith and illness, something came alive in me.

Faith is my core, and probably my only real defence against the fear. Not because it removes fear, but because my trust in G-d gives me certainty. Yes, in my mind, certainty. Certainty that there is a reason, even if I cannot understand it, and that somehow I will be able to come through it.

The emotional swings between emojis and death, between fear, anxiety and faith, were, looking back on it, simply staggering.

My writing is my process not just for recording them, but for keeping my mind active, thinking, questioning and finding some comfort. Yesterday it took me to the most unexpected places.

This article, for example, has taken at least twelve drafts and probably six different directions, and helped me process yesterday. The writing is truly helping me get a handle on the changes I face and the bizarre sense of normality that has set in, even as that normal keeps changing.

Yesterday felt relatively normal to me.

It wasn’t.

It was the journey PSP is taking me on, and my resolve to face it.