I may come to regret writing this. It may hurt some people. People I love may fundamentally disagree with it. Some may even be offended by it.

And I admit from the outset that what I am about to say is deeply selfish.

Before anything else, let me say this clearly:

Progressive Supranuclear Palsy is a rare, progressive neurological disease. I am 51 and six and a half years into living with it.

It is 2 a.m. as I write this. I am sitting in my wheelchair. It took what felt like forever to pull myself from lying down into a sitting position. A hoist, or if we are being less polite, a winch, is arriving today because I can no longer reliably manage it myself.

My eyes were glued shut with the gunk PSP so generously provides. Before I could write, I had to clean them with wipes, soap and water and put on my special lenses.

Getting to the bathroom, negotiating grab bars and wheelchair, took the better part of half an hour.

My little 2 a.m. triathlon.

I don’t know how much longer I will be able to do it. Sometimes, already, I simply can’t.

And the reality is that PSP will almost certainly get worse.

Already, I miss things that matter enormously to me. Last night, I could not attend a memorial event for the mother of a friend because I could not manage the stairs and crowds. I backed out of a wedding I desperately wanted to attend.

At my own daughter’s wedding, the greatest day of my life and one for which I am eternally grateful, I froze and eventually had to be taken home well before the end.

PSP has taken a great deal from me.

It has made me dependent on people I love. Sometimes I become angry with them when I should not. I make their lives harder. I cause worry and sadness.

Financially, it has made our family’s journey considerably more difficult than the life of plenty and retirement we might otherwise have expected.

So please........

© The Times of Israel (Blogs)