It Would Be So Easy

It would be so easy to look down the road and feel only trepidation. I see where PSP patients go, and it is not, in general, a good place. What frightens me most is losing my dignity, losing control of my own destiny, and being trapped behind a wall of silence, unable to express what I think and feel.

It would be so easy to sit on the couch, turn on the television, and fade. To lose the will to exercise. To lose the will to write. To stop reaching for purpose and meaning. My calendar is almost empty now, apart from two physio sessions a week. I made it to my daughter’s wedding and had the most extraordinary night of my life. I have watched my family grow into something truly special. And still, I am afraid of becoming a burden to them.

It would be so easy, now that I have a full-time carer, to simply be the one cared for. To put the computer away. To rest. To stop sending messages into the world.

The truth is simple: it would be easy to give up.

But I won’t.

My physical abilities have diminished. My world has narrowed to downstairs, the floor of this house, and the occasional walks with my carer and others. But I will not let it stop me, not while I still have a choice. Until then, I will keep pushing to make a difference, to stay useful, to keep giving.

I can no longer go on holiday. I can no longer manage full days out. I can no longer enjoy the synagogue that I love. Crowds, noise, bright lights, too many people in a room: these are now beyond me. Most days, I am at home.

At my daughter’s wedding, I danced. I stood under the chuppah. I had the most extraordinary night of my life. By 10 p.m., I had frozen completely. Friends and my son got me into a car. My sister and others got me into bed. Only after some time did I come back to myself.

Recently, at a weekday service outdoors, I sat quietly at the back in my wheelchair, keeping to the edge to avoid the noise and light. Then, slowly, I powered down into a freeze. For ten or fifteen minutes, I was fully conscious but completely unable to move, to call, or to signal. I did not panic. I waited. Eventually, my carer noticed and came to me.

That is what PSP feels like from the inside.

I do not know why these episodes happen or how they resolve. I do know that if I rest, limit noise, and avoid crowds, I can get through most of a day without them. So that is what I do.

I have stopped fighting PSP on its own terms. The freezing, the sudden loss of control, the public helplessness: it is soul-destroying. So I redirect the fight. I protect my cognition, which I am fortunate still to have. I maintain what strength I safely can through exercise and physio. I choose the battles I can win.

I rest more. I watch television when using a computer or dictating is too hard. These abilities will continue to fade, and I do not know what I will do when my eyes and body no longer allow me to write or express myself. People say, “Just relax. Just enjoy yourself.” They do not have PSP.

I know I am lucky. I live in an age of technology that gives me tools I would not otherwise have had. I have skills that still allow me to reach people. I have real blessings, and I count them.

But this accelerated old age is not fun, and what lies ahead is frightening. I am not in denial. I accept it, and most of the time I am calm. PSP only goes one way. At times I surprise even myself, as I did when I said to a friend yesterday, “My bags are packed and I am ready.” I do not mean I want to go. I mean I have made my peace.

My fight is simple: to be a force for good, or at least a force, for as long as I can, and to protect myself so that time stretches as far as it will go.

Sometimes that fight shows up as too much writing. Too many messages sent to people who did not ask for them. I know I overdo it. I accept the criticism. It is, I think, a defensive reflex: the need to stay relevant, to stay present, to prove that I am still here. If I err, I would rather err on the side of too much than too little.

Life is precious to me. Fiercely, unmistakably precious. A few moments each day with my family, watching them grow, is enough to keep me smiling.

I just hope I am not too great a burden to the people I love most.