Do I Compare Myself? And To What?

I asked myself this question this morning, somewhere around 3 a.m. Why? I have no idea. It is just one of the ridiculous things I do when I wake up so early with nothing much to do other than ponder, think, and dictate.

There are so many ways to look at life, and I guess even more of them when you live with a disease like PSP.

I could compare myself to the person I was just a year and a half ago — running five Ks and even one 10K, driving vast distances on a whim for my children or to take people places without a second thought, hurtling around the world. Logic tells me I should feel an enormous sense of loss. But I don’t, actually. Not in the way you or I might have expected.

As for a comparison to the future I once assumed I’d have — travelling with my wife after years of hard work, enjoying grandchildren, finally slowing down enough to enjoy life — logic again tells me I should feel an enormous sense of loss. And I am, honestly, incredibly sad. But it strangely doesn’t define how I feel from day to day.

I could compare myself to people living with harsher forms of PSP or worse conditions altogether. I should feel blessed, or as some people say, lucky. Objectively, maybe that is the case against a tiny population. But that comparison feels ridiculous to me and offers me nothing: no comfort, no hope, no real positivity. So I don’t make it.

What I’ve realised is that I don’t actually compare myself to anyone. Not my past self. Not the future I once imagined. Not others carrying the same diagnosis. I look at my situation as it exists today, and from there I have two thoughts about the future and three about the present.

The future holds two things that contradict each other, with the second one, mostly, winning.

The first is fear. I won’t pretend otherwise. I read the accounts of caregivers living through the later stages of PSP and I have, at minimum, the beginning of an understanding of what may be ahead. That limited knowledge carries weight. The fear becomes most real during the moments of freezing, those moments which are increasingly common and longer, when I am fully conscious but completely unable to move or communicate, walled in behind an invisible shield of silence. These are moments which I used to be utterly terrified of, and which still scare me on some level.

And yet, concurrently and not sequentially, I find in those same moments of freezing that I am increasingly calm. Less prone to panic. More at one with myself than I would ever have predicted. I’ve said this before and it remains true: my fear of what this disease might become has been, by a very significant margin, worse than the reality I am actually experiencing. The second thought keeps overriding the first. Just.

The present contains three things, each battling with each other, from the mundane to the spiritual.

First, the pain, annoyance, and discomfort, because it’s unavoidable and I won’t skip past it. PSP hurts. My legs. My knees. My neck. My shoulders. And increasingly, my eyes, giving me vision troubles that add a particular frustration to everything else. Walking without falling has become almost impossible. The other day, my carer and I did three circuits of the downstairs using my old walker as an experiment, in ten to fifteen minutes at an incredibly slow shuffling pace, freezing often, nearly falling three or four times each circuit. If it wasn’t for being held fully and continuously, I would not have made it. It is humbling in ways I don’t always have the right words for.

Then there is the fight against boredom, which I’d argue is underrated as a challenge. Not long ago I had a diary so impossibly full it regularly stressed out my secretary, and I was moving constantly, multitasking badly, always somewhere. My cognition is largely intact. The calendar is not. When you’re awake from 2 or 3 a.m. with nothing filling the day ahead, bound to a chair, unable to get something simple from the kitchen without calling for help or attempting the wheelchair yourself, time becomes something you have to actively manage. This is especially true as I’ve limited going out to places I used to love: the synagogue, the cinema, restaurants and cafes. The bright lights, the noise, the people, almost always cause me to freeze. Writing, or rather dictating, has therefore become one of the only ways I give myself structure, meaning, and somewhere to put my thoughts. Being a control freak for fifty years does not make this transition easier. In many cases it makes it considerably harder.

And then, most importantly, outweighing both of the above when my mind is directed towards the source, is this: I am genuinely grateful. Not only for what I’ve achieved, but for what I have. The simple things. Family. Home. Close friends. The ability to communicate, in an era that actually makes that possible. I am still, recognisably, myself. Still occasionally annoying. Still finding humour, though some would dispute my use of that word, in absurdity, and choosing hope in the face of something serious.

So, do I compare myself?

No. Not to my past. I try not to compare myself to a future that no longer exists. And I don’t compare myself to others in the same situation.

As PSP narrows my vision, narrows my interaction with the world, narrows my ability, narrows my capabilities, I try to live with the condition I have, as it is today. With gratefulness. With honesty about the fear. And with the quiet, persistent hope that the fear will always turn out to be worse than the reality. Grateful for every moment I can still enjoy my absurd humour, my family, my home, and today.