Tragic Optimism: Refusing to Let Tragedy Have the Last Word

Today, my friend Rabbi Nikki Liss sent me an article detailing an interview Rachel Goldberg-Polin gave to Anderson Cooper. I read it almost immediately. After everything she has endured following the kidnapping and murder of her son, Hersh, I expected to read about grief, resilience and hope. Instead, I came across a phrase that stopped me in my tracks.

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Rachel spoke about rejecting what has become known as toxic positivity, the well-meaning insistence that everything will somehow be alright. She connected the idea to Viktor Frankl, whose writings have inspired me for many years. As soon as I read those words, I realised she had given a name to something I have been trying to describe for a long time, ever since Progressive Supranuclear Palsy entered my life.

Over the past year I have written several articles arguing against toxic positivity. Not because optimism is wrong, but because false optimism can become its own form of cruelty. When someone is living with a progressive neurological disease, telling them that everything will be alright may be intended as encouragement, but it asks them to ignore reality. PSP is progressive. It is incurable. It will continue to take things from me. Acknowledging those facts is not pessimism. It is honesty, and I have come to believe that genuine hope begins with honesty rather than denial.

Frankl never suggested that suffering was somehow noble or desirable. Quite the opposite. If suffering can be relieved, he believed it should be. Seek treatment. Reduce pain. Accept help. But when suffering cannot be removed, he argued that one profound freedom remains: the freedom to choose our response. That is what he called tragic optimism. Not optimism because life is easy, but optimism because life can still possess meaning despite its tragedies.

The timing of Nikki’s article could not have been more appropriate. The past few weeks have been among the hardest I have experienced since my diagnosis. Physically, I have endured severe nerve pain unlike anything I have previously known. Pain has an extraordinary ability to shrink your world until it occupies almost every waking thought. My eyes are weakening at a quick clip and seeing my phone gets harder every day with eyes streaming with tears and wearing sunglasses and a cap to protect against sunlight. Emotionally, yesterday brought another reminder that PSP affects far more than movement. For about an hour I experienced an overwhelming wave of anger, one of the disease’s least understood symptoms. It wasn’t directed at anyone in particular. It arrived suddenly but didn’t leave for hours as I sunk into a hole. It also kicked off a bout of nerve pain because I got so irate.

Reading Frankl after those experiences, I realised I was not simply reading about tragic optimism. I had been trying to live it.

Frankl described what he called the tragic triad: suffering, guilt and death. Eventually every one of us encounters each of them. The question is not whether tragedy enters our lives, but whether we allow it to become the only story we tell about ourselves.

I cannot choose whether I have PSP. I cannot choose what it will take from me next. I cannot choose whether I wake tomorrow with less balance, more pain or greater dependence. But I can choose whether I continue writing (to a point). I can choose whether I encourage someone newly diagnosed. I can choose whether I remain grateful to the extraordinary people who care for me. I can choose whether I continue to laugh with my kids, to enjoy time with my family and to search for purpose in days that look very different from the ones I once imagined.

Those choices do not remove the tragedy. They simply refuse to allow tragedy to define the whole of my life.

Frankl believed that even when life strips away almost everything else, it cannot completely take away our freedom to choose our response. I find that deeply comforting. PSP may continue to shape my circumstances, but it does not get to decide my values, my purpose or the kind of man I want to be.

One consequence of this illness has surprised me.

In some ways, I think the people around me suffer more than I do.

Of course my wife, my children and my family carry an enormous burden. But today I also heard from a friend who has known me for decades. He remembers the younger Ben, When he sees me now, the contrast is understandably painful.

I realised that many old friends carry that same comparison.

I don’t.

Not because I don’t grieve, but because I have travelled this road one small step at a time. Every adaptation has gradually become normal. Every loss has quietly found its place. Looking back over six years is shocking. Living those same six years has been something entirely different.

Writing this blog has probably helped more than I realised. Somewhere along the way I stopped thinking of myself only as the person living this disease and became, in part, its observer. I still experience the pain, the frustration and the fear, but I also step back and ask what this experience is teaching me. I write almost as though I am describing another person’s journey, even though it is unmistakably my own.

Perhaps that distance is not denial.

Perhaps it is acceptance.

Frankl believed happiness cannot be pursued directly. It is the by-product of meaning. I think our culture often gets that backwards. We tell people to stay positive, when perhaps we should be encouraging something deeper: stay purposeful. Purpose survives pain. It survives fear. It survives uncertainty. Sometimes it even survives happiness itself.

That is what this blog has become for me. It is no longer simply a record of living with PSP.

It is my way of making sure that whatever this disease takes, it also gives something back to someone else.

So no, I don’t believe in pretending everything will be alright. Some things won’t be.

PSP remains a tragic disease, and acknowledging that truth is not surrender. It is simply refusing to lie to myself.

But neither will I surrender to despair. Perhaps that is what tragic optimism really means. Not denying the darkness. Not allowing it to become the whole sky.

Perhaps I have spent many months writing about what PSP has taken from me.

Today I wanted to write about something it has not.

It has not taken away my freedom to choose who I will be.