Mixed Messages: The Conflict Between Acceptance, Fighting, and Denial

Living with PSP comes with no shortage of advice, much of it well-meant, much of it contradictory. I’m told to accept it, to fight it, and sometimes to ignore it altogether. What’s harder to admit is that I hear the same competing voices inside my own head. This is my attempt to make sense of those mixed messages, not to resolve them once and for all, but to find a way of living honestly among them.

You probably know the three positions.

Acceptance: learn to live with it, focus on quality of life, make peace with where you are. Fighting: put everything you have into extending the time you have, push back against the disease with everything available. Denial: ignore it, focus on the miracle, assume science has got it wrong and that somehow it will all be okay.

I don’t say any of this disparagingly. I have been in all three camps at different times. Sometimes on the same day. Sometimes before breakfast.

So how do you get the balance right? How do I get the balance right? This matters for patients and caregivers alike, because well-meaning messages pull us in different directions, and without a framework, it all turns into noise.

I’ve been thinking about this a lot lately, and I want to share where I’ve landed, at least for now.

Fighting makes sense, but only for the right battles. The mistake I have definitely made before is defining the fight too broadly. If I decide that fighting means defeating PSP, I have already lost, because that battle cannot be won. It is as a therapist once said to me: it is like trying to fight a tsunami with your bare hands. But if I define the fight more honestly, maintaining function, staying active, accessing the best treatment available, remaining present in the lives of the people I love, those are battles worth everything I have. Pour it all in.

Sun Tzu wrote: “Victorious warriors win first, and then go to war.”

Define what winning looks like before you start fighting, not in the heat of fear. As a person of faith, I find that question sits comfortably alongside my belief that life is precious and worth fighting for, but that the final chapter is not mine to write. Fighting with everything you have, while holding the outcome with open hands, is not contradiction. That is, for me, what faith actually looks like in practice.

Acceptance is harder than it sounds, and I think widely misunderstood. It is absolutely not giving up. It is not sitting quietly waiting for the end. It is something that has to be actively worked towards, and the biggest obstacle, in my experience, is the grief over the person you were before. The body that worked differently. The life that looked different. The version of you that didn’t have to think about any of this. That grief is real and it deserves to be named. But holding onto it too tightly is precisely what blocks the peace you are looking for. This is particularly hard for me right now, as I move towards needing full-time care and losing the ability to do the basic things I once did naturally and independently.

Sun Tzu again: “The supreme art of war is to subdue the enemy without fighting.”

Sometimes the path forward is not more resistance. It is release. For me, as someone whose faith is central to everything, acceptance has another name, trust. The deep, hard-won belief that whatever is happening is held within something larger than my understanding of it. On the days I can get there, even partially, it is the most peaceful place I know. I am by nature a controlling person, and without that trust, the anger and resentment of fighting what cannot be fought would simply be too much to carry.

Denial I cannot recommend, though I understand it completely, because I have lived it. It whispers that it’s not really happening, that it could be something else, that the doctors have got it wrong, even when everything, absolutely everything, points in the same direction.

Sun Tzu is direct on this: “If you know the enemy and know yourself, you need not fear the result of a hundred battles.”

Ignorance feels like protection. It isn’t. I want to be careful here, because for a person of faith there is a version of denial that can look like faith but isn’t. I believe in miracles, genuinely. But using the possibility of a miracle as a reason not to face reality honestly is a different thing. Faith and honesty are not opposites. That said, I allow myself the occasional hour of denial. I don’t think that’s the worst thing in the world. Just don’t set up permanent residence there.

And then there is hope, which is different from all three, and which I think is the missing piece in most of these conversations.

Rabbi Jonathan Sacks drew a distinction I have carried with me for years: “Optimism is the belief that things will get better. Hope is the belief that, if we work hard enough, we can make things better. Optimism is a passive virtue, hope an active one. It takes no courage to be an optimist, but it takes a great deal of courage to have hope.”

Optimism, if I am honest, is not available to me. PSP is progressive. The trajectory is what it is. To pretend otherwise is not optimism, it is denial in nicer clothing.

But hope, active, courageous, clear-eyed hope, is something else entirely. Viktor Frankl, who survived Auschwitz and came out the other side with a philosophy rather than a breakdown, understood this as well as anyone who has ever lived. He wrote: “Everything can be taken from a man but one thing: the last of the human freedoms, to choose one’s attitude in any given set of circumstances, to choose one’s own way.”

That is where Rabbi Sacks and Frankl meet, and where I find myself returning again and again. Hope is not about the outcome. It is about what you do with the time and the capacity you have. It is about choosing, every day, to keep fighting the battles worth fighting. To stay present. To give something. To remain, for as long as possible, a person and not just a patient. For a person of faith, hope is not a feeling. It is a practice. And it is, as both of these men understood from very different places, one of the most courageous things a human being can choose.

So where does this leave the mixed messages? They are not actually mixed. They are talking about different things, and the confusion comes from applying the wrong one to the wrong moment.

Fight, but fight the right battles, and define what winning means before you start.

Accept, but actively, not passively. Grieve what needs to be grieved, and then release it.

Deny, occasionally, briefly, and with full awareness that you are doing it. And know the difference between denial and genuine faith.

Hope, always.

I am not always good at any of this. It is, after all, an impossible balance to get right. I have my fighting days and my accepting days and my days when I just want to pretend none of it is real for a few hours. What I try to do, increasingly, is simply name which one I am in on any given day. Not judging it. Just naming it and dealing with it accordingly. Sometimes fighting, hopefully the right battles. Sometimes accepting, but not giving in. Sometimes denying, but not for long. And always hoping. Because this is the challenge that has been given to me, as so many people have their own unique challenges, and how I meet it is the one thing that remains entirely mine to choose.