Hauntingly Lonely: Surrounded by Love but Alone with PSP

Last night, PSP reminded me of one of its cruellest contradictions.

I have rarely felt so surrounded by love, yet so completely alone.

I sometimes feel like a journalist on an undercover investigation into this disease. Just when I think I understand it, PSP uncovers another layer I had never anticipated. The contrasts it creates are extraordinary, and often deeply unsettling.

Last night should have been one of my favourite evenings in a long time.

My wife was there. All three of my children were home, one with her husband, another with his girlfriend, and one who had set up the screen and equipment to make the evening work. My wonderful carer was with us too. On the screen was the World Cup Final, an occasion I would normally never miss, even if England were not playing. The house was full of conversation, anticipation and laughter. The children even popped out to buy me vanilla ice cream.

Earlier in the day I had not been feeling particularly well. My wife and I had managed to go shopping for some gloriously unnecessary presents for the children, including a completely ridiculous dancing chicken. Unsurprisingly, they all declared the purchases a complete waste of money. The outing came at a cost. Painkillers during the trip, opiates afterwards, thanks to the horrific leg pain that now seems to accompany almost every journey. But after an afternoon sleep I felt ready for the evening. I genuinely believed I was going to enjoy it.

Then the match began.

Within minutes I realised something was wrong.

The brightness of the television. The constant movement on the screen. The commentary. The conversations around me. None of these things were excessive. They were simply normal family life.

But my brain no longer experiences normal in the same way.

The sensory overload arrived almost immediately. The light became unbearable. Even the physical closeness of the people I love most in the world suddenly became difficult to tolerate. The noise felt overwhelming. Every instinct was telling me to escape.

I fought it. I put in my bright orange earplugs and the volume was turned down. This was not a room I wanted to leave. Quite the opposite. These are the people I love most. I wanted to sit with them, laugh with them, share the evening and enjoy my ice cream. More than anything, I did not want them to feel my absence.

Instead, as quietly as possible, though quiet was impossible, I asked my carer to wheel me into my bedroom. I thought perhaps I could still salvage the evening by watching the match on my iPad.

Sport has always been a huge part of my life.

But even that proved impossible.

Despite wearing sunglasses, the brightness of the screen hurt my eyes. After a few lonely minutes I admitted defeat, put on my eye mask and, unexpectedly, fell asleep.

Almost.

As I drifted off, my own snort startled me. It was the startle response I have written about before, but this time it was not triggered by a slammed door or an unexpected voice. It was triggered by my own body. Wearing earplugs and an eye mask, blind and half deaf, I screamed out loud.

I realised I had two completely contradictory wishes. I hoped nobody in the other room had heard me over the television. At exactly the same time, I desperately hoped everyone had and would rush in to see if I was alright.

The former happened.

Part of me felt even more alone.

For those few minutes, I felt hauntingly lonely. Not because I was unloved. Quite the opposite.

I knew my family were only a few metres away. I knew they wanted me there. I wanted desperately to be there too. We were separated not by distance or disagreement, but by a disease that had quietly decided I could no longer tolerate the very things that make family life so precious.

That, perhaps, is one of PSP’s cruellest tricks.

It does not simply take away what you love.

Sometimes it leaves it right in front of you, close enough to hear, but impossible to join.

The match itself turned out to be rather disappointing, so at least I did not miss a classic. By morning I could once again look at a screen, with difficulty and sunglasses as usual. I discovered the final score almost as an afterthought before dictating these thoughts.

The result no longer mattered.

What stayed with me was the memory of quietly, yet very noticeably, leaving a room full of the people I love and closing the bedroom door behind me. For a few fleeting moments I had never felt so surrounded by love and, at the very same time, so hauntingly alone.

There was no pain crisis. No morphine. No emergency room.

Just a room full of the people I love, only a few metres away, and a disease that quietly took me away from them.

It may have been one of the loneliest evenings of this entire journey.