Who Am I?

It is a question I am increasingly forced to ask myself.

I am obviously, in many ways, the same Ben who, two weeks ago, led the prayers in front of many people, to the pride of my wife, mother, kids and myself. I am deep in faith and still have the same pretty awful humour.

But something is afoot, and I have come out of the denial phase. My behaviour is really starting to change.

I am far angrier and have a much shorter fuse. Other people have noticed and commented on it.

I am far more impulsive. I was on the phone to my brother, who lives in another country, and asked him if he wanted to come over and visit, staying with my mother, who lives about 40 km away. I promptly booked him a ticket and then realised I had not asked my wife. Or even my mother!

That would simply never have happened before.

I am more apathetic and find it increasingly difficult to empathise and listen.

I am changing.

Thankfully, I am holding on to my cognitive function for now—and, please G-d, for a long time—but my behaviour is not always that of the person I knew.

And that is frightening.

I am not just observing these changes. I am living with their consequences.

The loneliness was different as well. Sitting at home, feeling lonely, I found myself wanting to wallow in it. I wanted to be annoyed. I wanted to blame the world. I had to fight so hard to pull myself out of it.

So what exactly is happening?

I can identify at least five components.

There is the Ben I have always been, with my natural personality, strengths, weaknesses and tendencies.

There is the Ben who is ageing.

There is the neurological change that PSP is bringing. In my opinion, this is the biggest component.

There is the impact of taking more than 40 tablets a day, including some powerful medications to counter nerve pain and anxiety, which may themselves be influencing my behaviour.

Finally, there is the psychological impact of all of the above: the terminal diagnosis, the change in lifestyle, the loss of independence, the premature retirement, the loneliness and the extraordinary adjustment that PSP demands.

How much of my behaviour comes from each of these? I have absolutely no idea.

And unfortunately, PSP doesn’t come with a percentage-reading meter telling me how much of today’s anger, impulsivity or apathy belongs to the disease and how much belongs to Ben.

So, who am I?

I will fight to stay Ben—for better or worse—and, on the whole, I think I am. But it is becoming less clear.

My family and friends see me, albeit in a wheelchair. They recognise my face, hear my voice, laugh at my jokes (occasionally) and know that I can still think and understand what is happening.

They hear me describing the impact PSP is having, but I sometimes wonder whether they can fully appreciate what is happening inside me.

I understand why. I don’t entirely understand it myself.

The difficulty is that PSP is progressive. It doesn’t arrive neatly labelled, announcing which part of my behaviour is neurological, which part is psychological and which part is simply me.

And the people who love me are having to work that out alongside me.

It is frustrating. And, if I am honest, annoying.

I want to remain responsible for my actions. I want to remain accountable. I want to remain the husband, father, son, brother and friend I have always tried to be. But I am not—and simply can’t be.

But I am beginning to understand that wanting to remain Ben and being entirely in control of remaining Ben are not necessarily the same thing.

I hate what PSP is doing to me. I hate what it is doing to those around me. And I hate that neither I nor the people who love me can always tell where Ben ends and PSP begins.

I am still here. I am still fighting.

But increasingly, I find myself asking a question I never imagined I would have to ask.

Who am I?