I’m Incredibly Scared

I suppose that, without writing or dictating—which I have agreed to try not to do over the next few days—I’ve had too much time to concentrate on myself. Right now, I need this outlet to process my thoughts. It is completely still. It is about 1 a.m. I have been awake for an hour and a half, most of that time simply lying down and now sitting… scared.

I am at the stage of PSP where degrees matter.

Tiny things make an enormous difference to my life, my dignity and my sense of myself. And I am scared that, degree by degree, they are ebbing away.

Can I still dictate at night? Can I still use my telephone? Can I still see this computer, which is completely blurred at the moment? Can I still get around the ground floor of my house in my wheelchair with even a tiny degree of independence, or will that soon be gone?

This one will sound ridiculous, but will I still be able to turn the air conditioning on and off as I want in this heat?

These are very small things until you begin losing them. Then they become enormous.

I am, at this moment, genuinely scared of what lies ahead.

There may come a time when I cannot do any of those things. There may come a time when I cannot properly communicate what I want, what I need, what hurts, what frightens me or even something as basic as whether I am too hot.

I can put every imaginable contingency plan in place. Communication boards. Technology. People around me who know me extraordinarily well. A wonderful friend helped me install remote-control access to our air conditioning via our telephone this week, which has helped me enormously. And I am immensely grateful to a friend’s son, who helped me automate the publishing process for this post. Both are small acts of practical help that, at this stage of PSP, make an enormous difference.

But beneath all the practical planning is a much more frightening question.

Who will I be?

What sort of person will I be when more of the things that currently allow me to feel like myself are taken away? Will I maintain the strength of character I have tried so hard to maintain so far?

Will I still manage gratitude? Faith? Humour? Love?

Or will fear and suffering overwhelm them?

That is why, despite promising myself that I would rest my voice and not dictate or blog during this week of preparation for Rosh Hashanah, I am dictating this at 1 a.m.

Because in a few days, I will stand before my community, before my Maker, and say words I have said many times before.

Who will live and who will die?
Who at their appointed time and who before their appointed time?

And then:

Who will enjoy tranquillity and who will suffer?
Who will be serene and who will be tormented?

For most of my life, I suspect I concentrated overwhelmingly on the first questions.

Who will live? Who will die?

Now, strangely, those are not the words frightening me most.

Life and death ultimately belong to G-d. I have reached a degree of peace with that which even surprises me.

The second questions are different. They terrify me.

I do not want to suffer. I do not want my family to suffer.

I do not want PSP to destroy more of me than it absolutely has to. I do not want those I love to have to watch me frightened, trapped, distressed or unable to tell them what I need.

And I know enough about my disease to know that there are no guarantees.

That is the truth sitting with me in this very quiet house at 1 a.m.

I imagine that most people are naturally drawn first to the question of life and death. I find myself somewhere else entirely.

My prayer is increasingly about how I will live whatever life remains. I pray for as little suffering as possible. For as little distress as possible. For dignity. For the ability to communicate. For the ability to recognise and receive love. For the strength not to become consumed by fear. And, perhaps above everything else, for kindness.

Kindness from G-d.

I don’t know whether I will be able to articulate any of this when I stand there on Rosh Hashanah.

I will be praying on behalf of a community, not simply for myself.

But somewhere inside those ancient words will be this very personal prayer.

Please let whatever comes be gentle. Please give me enough strength to remain myself for as long as I possibly can. Please give me hope when hope becomes difficult.

I have had an extraordinarily blessed life. I know that. I feel enormous gratitude for it. That gratitude is genuine.

But gratitude and fear can coexist.

Faith and fear can coexist.

Hope and fear can coexist.

And tonight, lying here unable to sleep and unable to think about very much else, I will admit something without trying to make it more inspirational than it is.

I am very, very scared.

One part of me has written a rational article about Rosh Hashanah, Yom Kippur and prayer, which I hope will soon appear in The Times of Israel.

This isn’t that article. This is the version from inside the fear. The 1 a.m. version.