PSP Is Winning Battles. Now What?

Last night I openly admitted something that would have been very difficult for me to say even a few weeks ago.

PSP is taking over more and more of my behaviour.

When I got angry yesterday, it simply wasn’t me.

Some people reading this will never believe that. They will think it is weakness, excuse-making, or a refusal to take personal responsibility. The truth is that, until recently, I might have agreed with them.

Today, I don’t.

I categorically believe that the behaviour I saw yesterday was not me. I have never behaved that way. It felt alien. As uncomfortable as it is to admit, I can now see the difference between my response and the disease increasingly influencing it.

That does not mean I have no responsibility for what happens. It means responsibility now has to coexist with the understanding that my brain itself is changing.

In a sense, I admitted something else too.

I am no longer just a person living with PSP. I am also a patient.

So where does that leave me?

On one level, it is a dark realization. For years, I have thought of myself as fighting PSP. Now I have to confront the possibility that I am no longer simply fighting it, but increasingly being shaped by it.

My blog tells the story better than I can. The progression has been frighteningly fast. I do not know what the next stage looks like or when it will arrive, but I have little doubt that it is coming.

PSP does not negotiate. It does not pause because I want more time. It is progressive and incurable, and it continues to move forward.

How does someone deal with that reality?

Yesterday, I received a message from a wonderful woman who cares full-time for her husband, who has PSP. Her words meant a great deal because they came from someone living this reality every day.

She wrote:

“I know it is not him.”

She described her husband as “the most brilliant and talented man I ever personally knew,” but said that his “total apathy, loss of drive, emotional blunting and social disengagement slammed into him with full force.”

Those words landed hard.

He is older than me, but the disease she described felt painfully familiar.

She also told me that, in practical terms, she sometimes feels more like his protector than his wife. She even used the word “toddler,” not to diminish him, but to describe the level of care he now needs.

I understood exactly what she meant. And, if I am truthful, that is exactly what scares me.

Not the word itself. The dependency behind it.

The possibility of reaching a point where the people I love have to protect, guide and care for me in ways that bear little resemblance to the independence I have known all my life.

She added:

“I’m willing to bet your family loves you to the ends of the earth and despite some frustrations that may arise, you will always be their #1.”

Of course, intellectually, I know that. Emotionally, it is much harder.

Another reader, who wished to remain anonymous, offered a perspective that has stayed with me:

“Ben, everything you write about is something that others appreciate. Your blog is invaluable. I don’t know you, but know that you are a good person, someone worth knowing. Your approach to handling PSP is admirable. I don’t know if being totally cognitive and not being apathetic is a blessing or a curse, but you’re still living a life true to yourself and that’s so important.”

To whoever wrote that: thank you.

It genuinely lifted me. But the question stayed with me. Sometimes cognition feels like a blessing. Sometimes it feels like a curse.

I am aware of what is happening. I can see the changes and understand where this disease may be taking me. If my cognition remains intact, I may have a front-row seat to my own deterioration.

That is a frightening thought.

Of course, I pray to G-d that a cure is found. I pray that the disease takes a kinder route than it sometimes does. But prayer alone is not enough. I also have to prepare myself mentally for what may come.

That is why last night mattered.

For the first time, I stopped attacking myself for changing.

For the first time, I stopped assuming every moment of anger, frustration or emotional disruption was a personal failure.

I saw PSP.

Not me.

That distinction may sound small, but for me it is enormous. Today, I feel much calmer.

I am going to try, as much as I can, to separate myself from the disease that is attacking me. I hope my family can do the same. I hope that when difficult moments come, we can all remember that PSP is part of the story too.

Whether that knowledge ultimately helps me remains to be seen.

But I am grateful for it.

Thank you to everyone who continues to offer honest feedback, encouragement and support. I know some of what I write can be difficult to read, but this blog was never meant to be comfortable.

It was meant to be truthful. And the truth today is this: PSP is winning battles. It is influencing my behaviour. It is taking more ground than I want to admit.

But it has not taken everything. I am still here.