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Perhaps courage is not pretending that PSP doesn’t break you sometimes. Perhaps courage is allowing yourself to admit that it does, and then carrying on anyway.
I am sitting here listening to a song I have heard many times before. “I’m only human after all.” Today, those words feel different.
For a long time, I have written about PSP with determination. I have written about fighting it, adapting to it, planning around it, finding purpose through it, and refusing to allow it to define every part of my life. All of that remains true, but there is another truth I have been much less willing to write.
Sometimes PSP is just s**t. There. I said it. And strangely, writing those words makes me feel slightly better.
It almost feels like a crime to admit that this disease gets to me. As though, because I write about faith, resilience, gratitude, and choosing life, I somehow surrendered the right to feel devastated by what is happening. I haven’t.
People facing far less cry. They become frightened. They ask for help. They sometimes say life feels unbearably hard. Why should I be any different?
The difficulty is that I have never quite known where to put those feelings. I do not want to unload them onto my family because they are living through PSP too, and I do not want to complain endlessly to friends because they did not cause this and they cannot fix it. I have also never been particularly comfortable bringing those darker emotions here.
Part of me worried that if I wrote honestly about them, people would think I was losing it, that I was depressed, that my positivity had disappeared, or that something fundamental had changed. Something fundamental has changed. I have PSP, and sometimes it is soul-destroying.
There are moments of extraordinary loneliness. There is illness, isolation, and dependence. There is the loss of simple freedoms most people barely notice until they are gone. There are foods I no longer eat because swallowing them may be dangerous, physical changes I cannot completely prevent because my body no longer responds the way it once did, and things I need help with that I never imagined another human being would have to help me do.
Perhaps hardest of all, there is watching parts of yourself change. Not over decades, but sometimes over months and sometimes faster.
People wisely tell you not to think too far ahead, and most of the time I try not to. But I know what PSP can do. I find myself praying not for career success, wealth, or achievement, but for things most people rarely think about: the ability to communicate, the ability to think clearly, and the ability to remain connected to the people I love.
Those are unusual ambitions at 51. And somewhere, however much I try not to stare directly at it, sits the knowledge that this disease will continue progressing and, unless something else intervenes first, will eventually kill me. That is sad. Of course it is sad. Why wouldn’t it be?
The more interesting question is not why I sometimes feel frightened, angry, or low. The question is why I have been so reluctant to allow myself to feel those things. Maybe somewhere along the way I confused resilience with invulnerability. I am not invulnerable.
I believe deeply that life has meaning. I believe there is purpose beyond what I can always understand. I believe every day still matters. I love my family beyond words, and I want them to know I fought for every conversation, every laugh, and every remaining piece of myself. None of that requires me to pretend this does not hurt. In fact, perhaps pretending is the opposite of courage.
I am trying not to allow PSP to dominate my life, but admitting that the fight is hard is not surrender. It is honesty. As I write this, I can feel something shifting inside me. The sadness has somewhere to go, and that, I suddenly remember, is one of the reasons I started writing in the first place.
There is another uncomfortable truth. For years, I have asked people to treat me normally, and I still want that. I do not want every sharp word excused because I have PSP. I do not want responsibility removed from me, and I do not want my family permanently walking on eggshells around me.
But “treat me normally” cannot mean “pretend nothing neurological is happening.” PSP does not only affect movement. It affects behaviour too. Anger, impulsivity, and apathy are no longer symptoms in a medical textbook. They are realities that occasionally enter my life, whether I welcome them or not.
That does not excuse poor behaviour, but perhaps it should earn me a little compassion when I struggle. And this is where the song suddenly hit me. I’m only human. Not a saint, not a prophet, not an inspirational quotation, and not the permanently positive person some readers may imagine from this blog. Just a man doing what he can with circumstances he never asked for.
That sentence is surprisingly difficult for me to accept, not because the people around me lack compassion. The opposite is probably true. There are plenty of people willing to show me grace. The person least willing to do so is probably me.
I still measure myself against the man I used to be. I expect myself to absorb every new loss calmly, to respond perfectly, to control every emotional surge, and to navigate a progressive terminal illness while remaining endlessly composed. When I fail to meet those impossible standards, I judge myself.
Perhaps that is what needs to change. Not my standards for how I treat other people, because those matter enormously, but my willingness to offer myself the same grace I would immediately offer somebody else.
I need to acknowledge that this is incredibly difficult, to be sad without assuming I am depressed, to be frightened without deciding I have lost my courage, to be lonely without believing I am unloved, and to sometimes admit, quite simply, that I hate what this disease is doing to me.
There may be something else I have unintentionally denied the people I love. If I constantly insist that everything is fine, controlled, and manageable, perhaps I make it harder for them to admit that they are frightened and sad too.
They love me and they want to help, but sometimes there genuinely is nothing useful to say. Sometimes the truth is simply terrible. Perhaps we are allowed to acknowledge that together without allowing it to consume us.
So this is partly for me, but it is also for anyone living with PSP or caring for someone who is.
Fight incredibly hard. Protect every ability you still have. Adapt. Exercise if you can. Communicate. Laugh. Love fiercely. Stay curious. Stay engaged with the world. Make plans. Find purpose. Give life everything you have.
But please do not confuse fighting with never feeling sad. You are allowed to be lonely, scared, and angry. You are allowed to grieve for things you have already lost and things you may yet lose. You are even allowed, occasionally, to say that it is s**t. Then tomorrow, you fight again.
It is also OK for your loved ones to cry. In many ways, this journey is almost as hard for them as it is for you. Allowing them to acknowledge that reality does not mean you need to maintain a false bravado for their benefit or for your own. Perhaps loving each other through illness sometimes means allowing everyone to admit that it hurts.
When I started writing this, I wondered whether admitting all of this meant that, in some small way, I had finally lost it. I think I have reached the opposite conclusion.
Maybe I have spent too long believing that strength meant carrying everything alone, that resilience meant never showing the cracks, and that compassion was something I should freely offer to others but somehow deny myself.
I have not lost it. Perhaps I am finally giving myself permission to be human. I am not fully there yet. My stubbornness still gets in the way, but perhaps learning to show myself compassion is part of the fight too.
Something odd has happened while I have been writing this. I started by finally allowing myself to say how bad this can feel, and somehow I have ended up feeling lighter. Perhaps that is the point: sometimes admitting that you are struggling is not giving in to the darkness. It is how you begin to find your way back towards the light.
