Behavioural Change: Frightened, Determined and Out of Denial

I feel the beginnings of behavioural change, and I know others around me feel it too. At times I am angrier, at times more impulsive, and at times more apathetic. I’ve talked about it before, but until now it has been abstract. Now I see it. It is a passenger with me in the car, not in my rear-view mirror.

Yesterday it really hit me. Today is Day 1 of the denial phase being over.

I ride this journey with my family, whom I love more than anything, and my friends, and I am truly sad to see this passenger join us.

It is part of me. How much, I have no idea. I also do not know how much comes from my natural tendencies, my huge lack of sleep, the side effects of 40-plus pills, or the psychological impact of living with a terminal illness, quitting work, and not being able to go out much. In one way or another, though, all roads lead back to PSP.

I will do everything I possibly can to fight it, compensate for it, avoid its worst effects, step back when it is taking over, and hopefully learn how to manage it better.

Right here, right now, I am letting go of denial. I accept that this passenger is part of my journey. Now I must learn how to live with it, adapt to it, and do everything I can to remain the one in the driving seat.

Of all the changes PSP brings, this is the one that frightens me most. In some ways, it feels far worse than the physical changes because it threatens something even more fundamental: who I am.

I pray to G-d that I can get through this with as little damage as possible, with my family and friends firmly beside me.

Because underneath it all, I need to hold on to one thing.

That is me.

Not the PSP.