Apparently, I’m Like Simon Cowell – Breaking the Spiral

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An amusing comparison made me laugh this morning. I needed it far more than my friend could possibly have known.

“You’re like Simon Cowell.”

Those were the words of a friend who visited me yesterday and saw my tinted glasses.

There are many things I have been called in my life. Simon Cowell has not generally been one of them.

Sadly, my friend was not referring to my ability to discover international music stars or build a television empire.

He was talking about my glasses.

As someone who respects Simon’s humour and clear talent, and is a fan of Britain’s Got Talent and America’s Got Talent, particularly the endless clips that somehow find their way onto my YouTube feed and give me the occasional much-needed smile and distraction, I’ll happily take it.

It turns out that Simon Cowell and I do have something slightly unusual in common. We are both British men who have found ourselves wearing strongly tinted glasses because bright light can be extremely difficult for us.

Simon has spoken publicly about photophobia, migraines and the intense studio lights he faces while filming programmes such as Britain’s Got Talent and America’s Got Talent. He wears red-tinted lenses that he says act as a filter.

My problem comes from PSP. Light can sometimes become almost unbearable for me, and tinted lenses have become one of the tools I use to make it manageable.

Different causes. Different lives. Different glasses, probably.

But a surprisingly similar solution.

And that is approximately where I will end the comparison between Simon Cowell and me.

I know my limitations. There is, however, a reason this silly little comment mattered so much.

I wasn’t having a particularly good morning. Sometimes PSP gets to me. Actually, sometimes everything gets to me.

There is the gradual, and sometimes not remotely gradual, effect of PSP on me physically, mentally and behaviourally.

There is the knowledge of what it does to my family. There is the lack of sleep. There is disability itself. And there is the accumulation of all the small losses that arrive one by one and eventually stop feeling small.

Career. Independence. Privacy. Physical space. The ability simply to decide that I want to do something and then do it.

Usually I cope with all this remarkably well. This morning, at 1:30 a.m., I wasn’t.

There had been a minor disagreement with somebody I love. Nothing dramatic. Nothing unusual in any family. The disagreement is not the point of this blog. Hopefully, that will work itself out once I deal with my own annoyance at myself for letting it happen.

It was simply the tiny thing that happened to land on top of a much bigger pile of PSP, exhaustion, frustration and loss.

Sometimes the thing that lights the fuse has very little relationship to everything sitting behind it. I could feel myself beginning to spiral.

Frustration became anger. Anger threatened to become more anger.

And then, for some reason, I remembered:

“You’re like Simon Cowell.”

I laughed out loud.

The spiral broke.

Not permanently. Not magically. Simon Cowell has not, as far as I know, discovered a treatment for PSP.

But from that moment, the direction changed. And that made me think about something much more serious.

I am extraordinarily fortunate.

I can get these feelings out. I can write. I can dictate. I can talk. I can analyse what is happening inside my head and quite often turn something painful into 1,000 words and press “publish”.

Writing has become one of my pressure-release valves. My therapy.

Not everybody with PSP gets to keep that outlet.

That is something I have become increasingly aware of over the past few years.

Look at many PSP support groups and you notice something striking: there are remarkably few people with PSP actually participating. Unlike many Parkinson’s groups, which I used to participate in actively, PSP groups seem to be overwhelmingly populated by carers, partners and family members.

There is a reason for that.

As PSP progresses, speech may become difficult. Communication may become difficult. Cognition can be affected. Technology can become difficult. Mobility can make participation increasingly hard.

Some patients gradually lose not only parts of their independence but also the ability to tell other people what that loss feels like.

I want to be extremely careful here. This is not a criticism of carers or families. It is certainly not an argument about who has it worse.

Carers have it extraordinarily tough. They live with exhaustion, anxiety, responsibility, disruption and their own sense of loss. I see that in the people around me, and I know that my PSP affects their lives enormously.

But carers often retain something that the patient may gradually lose: an outlet.

They may be able to speak to a friend, join a support group or simply say to somebody:

“This is incredibly hard.”

The patient may be experiencing the same fear, anger, frustration, humiliation and grief without having the same ability to express any of it.

That doesn’t mean the carer has it easier. It means the experiences are different.

And it makes me realise how fortunate I am. I can still tell you, and myself, when I am frightened. I can tell you, and myself, when I am angry.

I can tell you, and myself, when I am embarrassed, exhausted, frustrated or simply fed up.

I can even analyse afterwards why I reacted badly to something which, viewed in isolation, really wasn’t very important.

Many people with PSP cannot do that.

Yet the fear, anger, humiliation, grief and exhaustion may all still be there.

Sometimes we see the behaviour without being able to hear the thoughts behind it.

That is perhaps the real point of this article.

There is a danger, as disability progresses, that somebody slowly stops being seen as a complicated person who happens to have a disease and starts being seen simply as the patient.

But the person is still there. They may be frightened. They may be furious.

They may know perfectly well how much their illness is affecting the people they love and feel terrible about it.

They may be grieving for the life they had.

And they may simply no longer have the words, energy or physical ability to explain any of that.

That is why kindness matters. Communication matters. Patience matters. And mutual empathy matters enormously.

Not because patients are always right. We aren’t.

Not because carers are always wrong. They certainly aren’t.

But because everybody involved in PSP is dealing with something extraordinarily difficult, often from completely different positions.

This morning, I was lucky. I could recognise what was happening. I could write about it.

And, thanks to one wonderfully ridiculous comparison, I could laugh at myself and interrupt the spiral before it went somewhere I didn’t want it to go.

So thank you to my friend. Thank you, rather unexpectedly, to Simon Cowell.

And most importantly, thank you to my family.

We will have disagreements because we are a family, not because anybody is failing anybody else.

PSP will sometimes make me frustrated, exhausted and probably more difficult to live with. It also places demands on the people I love that none of us ever asked for.

I am deeply sorry for the impact that has on them. But occasional disagreements do not alter the fundamentals.

I love them more than I can properly express.

And apparently, I have something in common with Simon Cowell.

I have had considerably worse news.