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Trust me, you are. And you helped me as well.
I read those words in a message this morning and they stopped me completely in my tracks. They brought tears to my eyes. They are still there. Not tears of sadness, but tears of gratitude, perspective and love. And thanks. The kindness of a stranger arriving at exactly the right moment.
I receive lots of incredibly kind feedback, for which I am genuinely grateful, but those words hit me like a train. Not because I think I am a giant or a hero. I truly wish I was. What moved me was the love behind them. That desperate desire to do something, anything, to make life easier for someone you love when you feel powerless to change what is happening.
I want to say categorically that, having come from a place where PSP overtook me yesterday through anxiety, fear and an inability to express how I was feeling, my loved ones were there for me when I needed them most and they helped me more than they can imagine.
Yesterday I had set myself a goal that I desperately wanted to achieve. I thought I was in a good enough place to push a little further and perhaps achieve one of those things that PSP increasingly tells me is unachievable.
I couldn’t.
Instead, PSP occupied my body and mind for hours. There was anxiety, panic and overwhelming fear. There was muscle rigidity, pain and discomfort. Eventually I had to accept that what I wanted to do was simply beyond me that day.
This morning I was still angry and disappointed with myself. I was ready to write about something I had failed to achieve.
Then that message arrived.
And I realised I was looking at yesterday through completely the wrong lens.
The negative suddenly became a positive. For me, certainly. And perhaps for people reading this too.
For me:
PSP means I need objectives. I need things to aim for. I need reasons to keep pushing at the boundaries of what I can still do. Sometimes I will succeed and sometimes I won’t. Yesterday I didn’t.
But perhaps the lesson was not that I had failed. Perhaps the lesson was that I needed reminding why I am fighting in the first place. And somehow, I got exactly that reminder this morning.
My wife. My children. My family.
Yesterday they were there for me. I was angry, upset and not the best version of myself. I even swore, something the old me would never have done. They quietly helped me through it. No lectures. No fuss. No drama. Just kindness, support and some much-needed space.
Sometimes the people who love us know exactly what we need.
Today my daughter went on her honeymoon. We spoke before she headed to the airport and that conversation meant the world to me. It was another reminder of what actually matters.
I am not fighting PSP so that I can tick achievements off a list. Those goals matter because they keep me moving, give me purpose and help me retain as much of myself as possible. But they are the means, not the destination.
The purpose is the people I love.
That message reset something inside me this morning.
I will still set ambitious goals. Some I will nail. I will undoubtedly overreach again. I will still get frustrated when PSP wins a particular round. Fear, anxiety and anger will probably make me lose perspective again too. I am human and I have PSP. But if I stop trying, PSP has already taken something from me.
I do not want to measure myself only by the things I can still physically achieve. I want to measure success by whether I remain engaged with the people I love, whether I can still tell them how much they mean to me, whether I keep finding ways to be part of their lives and whether, underneath everything PSP is taking away, I remain me.
For others:
Sometimes PSP takes over for hours. Sometimes it takes over for much longer. But I want loved ones out there, especially those like the person who wrote to me this morning, to know something.
The patient loves you.
That love may be hidden beneath layer after layer of PSP pain, anxiety, frustration, torment and disbelief at what is happening and how quickly it is happening. But they love you.
I may not be able to prove it in a statistical study, but I know it in my heart for the vast majority of people living with this disease.
And that brings me back to the daughter who wrote, “I wish I could help him.”
I think you already are.
Simply being there matters more than you probably realise. Your patience matters. Your smile matters. Your support matters. Giving your loved one space when they need it matters. Continuing to live your own life matters too.
From time to time, when PSP develops into a fog around me. I become frozen. Powered down. I become angry, distant, apathetic. It happened only yesterday. That does not mean for one second that I do not love them.
When I have a moment of clarity, like I do now, I get the chance to say it. Others do not always have that fortune. But I am sure they feel it.
The person you love is almost certainly still there, sometimes buried frustratingly deep beneath what PSP is doing.
When I look at my wife, my children and my family, I do not worry most about what PSP is doing to me. I worry enormously about what PSP is doing to them. I wish they did not have to travel this road alongside me.
But this morning a stranger reminded me of something else. They are also one of the biggest reasons I keep travelling it.
So I am strangely grateful for yesterday. I did not achieve what I had set out to achieve, but I learned something more valuable.
My objectives needed a small reset. Keep pushing. Keep setting goals. Keep trying to do the PSP-unachievable.
But remember why. Yesterday PSP occupied my body and mind for hours.
Today I know exactly why I get back up and fight again.
P.S. To the couple whose event I tried so hard to attend, please know how much you mean to me and how much I admire the way you face life’s challenges together. I desperately wanted to be there. PSP had other ideas. Mazal-Tov. But in a strange way the experience led directly to the reflections above, so something positive came from something difficult. Thank you for your friendship, your understanding and for continuing to inspire me.
