Even the Stupid Carrots!!

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I have reached the point where even chopping carrots can drive me out of the room.

Yes, carrots.

I’m sitting in the lounge this afternoon, not feeling particularly well. The last few days have been difficult, and last night was truly awful. I won’t go into the details because I’m British, and there are limits to what even I am prepared to share publicly. Suffice to say it was a critical all-night battle, which I’m pleased to report I eventually won!

This afternoon, though, brought home to me, in a rather ridiculous way, just how far PSP has progressed.

I was sitting in the lounge wearing my eye mask and what I had previously considered to be a very good pair of noise-cancelling headphones. Someone in the family was in the kitchen, innocently chopping carrots. The sound of the knife hitting the chopping board was enough to drive me to distraction.

Not irritation. Not mild discomfort. Something far more overwhelming.

Despite the eye mask and the headphones, I simply couldn’t tolerate it. I had to retreat to my bedroom.

Nobody was doing anything wrong. Nobody was being inconsiderate. Someone was preparing food, for goodness’ sake.

And yet I couldn’t cope with the sound of carrots being chopped.

That is where PSP has taken me.

It is difficult to explain quite how disturbing that feels. Your home is supposed to be somewhere you can relax. Your family should be able to go about their ordinary lives without worrying that preparing vegetables might become a neurological assault.

And I should be able to sit in my own lounge.

Apparently, today, even the carrots had other ideas.

Preparing for What I Hope Won’t Happen

Over the last few days, I have frozen, powered down and become unable to communicate on multiple occasions. Throughout these episodes, I remain conscious and aware of what is happening around me, but unable to respond. Sometimes my eyelids shut automatically. Sometimes they remain open.

Either way, it is frightening, not least because the people around me cannot always tell what I am thinking, feeling or needing.

Some degree of freezing, powering down or communication difficulty has occurred every day this week. That doesn’t prove anything about the future, but it is difficult to ignore.

Recently, someone close to another person living with PSP suggested that, given the trajectory I have been describing in my posts, I should prepare for the possibility of losing my ability to communicate actively sooner rather than later.

It was not something I wanted to hear.

I sincerely hope they are wrong.

I hope I have many years of writing, speaking, laughing, arguing, expressing opinions and telling the occasional dreadful joke ahead of me.

I hope today’s difficulties prove to be another particularly unpleasant episode in the extraordinary roller coaster that PSP has become.

But I cannot simply dismiss the warning.

One person’s experience is not a medical prediction about another person’s future. PSP varies enormously, and I have learnt repeatedly that a dreadful day does not necessarily predict tomorrow.

Nevertheless, the warning struck a nerve because it touched something I am already frightened of.

The possibility of being fully conscious, with thoughts, feelings, ideas and love for the people around me, yet becoming increasingly unable to express them.

I find that prospect terrifying.

So I have started preparing.

I’ve finally printed my communication board.

This is something I have been working on for a while. After several iterations, I’ve reduced it to nine black-and-white pages, large enough to be useful and manageable enough to keep nearby.

It contains ways of expressing basic needs, feelings, choices and messages to the people around me.

Naturally, there is one fairly substantial complication. It works best if I can actually see it.

And seeing is becoming increasingly difficult.

Even so, if I can see part of it, it may make an enormous difference. If I cannot, my wife or someone else can read through the options and give me time to indicate what I want.

It isn’t a perfect solution. Far from it.

But it is something.

And right now, something matters.

Am I Still Me?

Today I found myself looking through the page of the communication board dealing with feelings, people and choices.

I was struck by how many of the statements applied to me simultaneously.

I am scared.

I am frustrated.

I am overwhelmed.

I need reassurance.

I want you to stay with me.

I need some space.

I want to be included.

I still want to choose.

Some of those statements appear contradictory. How can I want someone to stay with me and also want space? How can I want to be included in family life when the ordinary sounds of that family life can become unbearable?

Yet that is exactly how I feel.

I want the people I love around me, but sometimes I need quiet. I want reassurance, but not false reassurance. I need help, but I don’t want every decision made for me.

And then I came across one statement on the board that made me stop.

“I am still me.”

Am I?

I would love to say, confidently and without hesitation, that I am.

But today I’m not entirely sure.

I know that the person I was is still here fighting. I know what I believe, whom I love, what matters to me and what I want from life.

But when my body freezes, my eyes refuse to cooperate, my voice disappears and my tolerance for the ordinary sounds of family life collapses, it becomes harder to recognise myself.

Perhaps the more accurate statement, at least today, is that I am still trying to be me.

And perhaps that is enough for now.

Nine Pages of Hope

There is something rather strange about looking at a communication board designed for yourself.

On one level, it is simply a practical document made up of ordinary words and simple choices.

On another, it is an acknowledgement that life may become more difficult.

That is not easy to accept.

I have spent much of my life communicating. Speaking, writing, presenting, advising, singing, debating and, occasionally, talking far too much.

Communication has been central to my career, my relationships, my faith and my identity. It is not simply something I do. It has always been a large part of who I am.

And now I am preparing for the possibility that some of those abilities may become increasingly unreliable.

Yet I have come to see these nine pages as more than a preparation for loss.

They are a declaration of what I am determined to preserve.

My ability to express discomfort.

My ability to ask for help.

My ability to say no.

My ability to make choices.

My ability to tell someone I am frightened.

And, perhaps most importantly, my ability to say, “I love you.”

Those three words matter enormously to me.

I love my wife. I love my children. I love my family and the people who have stood beside me throughout this journey.

Whether I say those words aloud, point to them on a page or communicate them in some other way, I want them to be heard.

And I want those around me to know that when I cannot respond, it does not necessarily mean I am not listening, understanding or feeling.

Sometimes I may need patience. Sometimes I may need silence. Sometimes I may need someone to read through a page of options and wait for the smallest indication of an answer.

But I still want to have that answer.

I still want to choose.

The Carrots Haven’t Won Yet

I don’t want this to be another entirely negative post.

The truth is that I am frightened, frustrated and overwhelmed today. I cannot pretend otherwise.

But I have also done something constructive.

I’ve finally completed and printed the communication board. I’ve reduced it to nine pages. I’ve ordered better noise-cancelling headphones. I’ve taken practical steps to make life a little more manageable, both for me and for the people around me.

And I’m sharing the communication board as a PDF below in the hope that someone else might find it useful.

Perhaps another person living with PSP, or another neurological condition, will be able to adapt it to their needs. Perhaps a family member or caregiver will find something in it that helps them communicate when words are difficult.

If it helps even one person, the effort will have been worthwhile.

I also refuse to assume that the worst-case scenario is inevitable tomorrow, next month or even next year.

I know PSP is progressive. I know what that means. But I also know how unpredictable my days have become, and how often a terrible morning has been followed by a surprisingly good afternoon.

I am preparing for a future I don’t want, while continuing to hope for a future I very much do.

A future in which I can still write, still speak, still laugh, still pray, still contribute and still be part of the conversations happening around me.

And perhaps that is the most important distinction of all.

Preparing for the worst is not the same as surrendering to it.

Today, I may have lost a battle with a chopping board and a handful of carrots.

But I’ve also gained nine pages of ways to make myself heard.

I’ll take that as a small victory.

And tomorrow, with a little luck, some better headphones and perhaps a slightly quieter kitchen, I’ll be back in the lounge.

Still listening. Still hoping. Still choosing.

And, I hope, still talking for a very long time to come.