Living, Dying? Which? Both.

A follow-up to “Being a Friend to Someone Who Is Dying”. The feedback to my recent post was extraordinary – genuinely one of the most widely-shared things I have written, and it gave me a real sense that I had added something to people’s thoughts. But alongside the warmth came a debate I had not quite anticipated: my use of the word “dying.”

Some found it premature. Some found it defeatist. Some were notably silent – people who are usually the first to give me a thumbs up or comment simply didn’t. And some said the opposite: it is very important you used the term and named it for what it is. And if this was the debate that got to my ears, it was probably a much larger pool who thought some of these things. I am no J.K. Rowling, but over 1,100 people have read that post so far and more saw the heading, so it must have done something.

It opened a major debate, and it made me reflect. Hard. Because this is not a philosophical exercise. It is a really important practical question for the patient, for the caregiver, and for the friend – and how you answer it shapes how you show up.

So here is my answer. Just my answer. Living? Dying? Both! Not as a cop-out, and not as some diplomatic blend of the two. Both. Loudly. Fully. Simultaneously.

So: living or dying?

Yes, everyone is dying. From the moment you are born, you are consuming a finite supply of time. This argument was used by some, and of course it is true – but at 51, most people have no idea of their approximate timetable, and are not actually living through a progressive terminal disease with no cure. I am not going to hide behind “well, technically, we’re all dying.” That is the conversational equivalent of changing the subject.

I am living. Yesterday I had breakfast, lunch and dinner. I dictated a blog post. I had a terrible game of chess and watched my football team throw away a victory. I laughed. I got upset and stressed. None of that had anything to do with my illness and everything to do with the kind of ordinary life that makes so much of what we do normal and worth showing up for.

I am also dying. Not abstractly. My neurological system is progressively deteriorating, PSP has no cure, and it will shorten my life considerably. Male life expectancy in Israel averages 80.8 years. For a healthy 51-year-old it is estimated at the mid-80s. PSP brings that down to a handful of years, much of it in a very poor state – which I worry about considerably more than the actual end. So even ignoring the truly horrific nature of the later stages of PSP, it shaves approximately 90% off my average life left.

Both of these things are true. Fully true. Not diluted versions of each other. Just uncomfortable to hold at the same time.

It is a critical debate, because as I have said many times before, Viktor Frankl tells us that attitude is the key difference in how we face what life puts in front of us. How you view this question – living or dying – informs that attitude enormously.

Why this matters practically

The frame you choose changes behaviour. It changes how you see yourself as a patient, how caregivers show up, what friends feel permitted to say. It changes whether the person with the terminal illness feels like a person, or a verdict.

For the patient

There are three ways to cope with a terminal diagnosis: accept it, fight it, or deny it. There is arguably a fourth – hope – which is more complicated than it sounds.

I refuse denial. I find it dishonest, exhausting, and useful to nobody.

Between acceptance and fighting, I pick and mix. I prepare physically and emotionally – difficult conversations, documents reviewed, practical matters faced. That is the acceptance side, and it is not defeat; it is responsibility. It has also brought with it a certain calm, and in fact a significantly added sense of meaning and purpose that I did not expect and am genuinely grateful for.

But I also fight. Not naively – I cannot hold back a tsunami with my hands. What I can do is exercise, work hard to avoid falls, manage my diet, maintain a positive attitude. Guerrilla warfare. I cannot win the war. I can make the enemy work harder for every inch of ground.

As for hope – I am a person of great faith and I trust in G-d, and that includes hope. I pray, and I do so not as denial but as genuine belief. I am in no way expecting a free pass, and nor would I ask for one – I receive miracles every day as it is. Hope and realism are not incompatible. What I will not do is use hope as a reason to avoid looking clearly at what is in front of me. That is where hope tips into denial, and I have no use for that version.

For the caregiver and family

There is a real and well-documented phenomenon called anticipatory grief. Trust me, it is real. Grieving someone who is still here – still talking, still occasionally impatient, still watching football and losing at chess – but who you know you will lose. Exhausting, disorienting, and deserving to be named rather than tidied away.

A caregiver who sees their person only as dying will over-protect and over-manage, and however lovingly, start to extinguish the life that is still very much present. A caregiver who sees their person only as living may under-prepare and be blindsided by deteriorations they could have anticipated. Both-at-once is harder. It is the right one.

For the friend

Visiting me is not the same as visiting a mate in the pub at 51 who is not thinking about any of this. It simply is not. Friends who come in pretending otherwise are not being kind; they are being avoidant, and I can tell the difference. And while I am here – yes, as I have said before, toxic positivity, the term for the unhelpful platitudes that well-meaning people reach for, genuinely upsets and hurts me. “You’ll beat this.” “Stay positive.” “Everything happens for a reason.” I want people to know that a lot of people in my situation feel exactly the same way. It is not the thought that counts when the thought erases the reality.

At the same time, I am not only a patient. I am not only dying. I still want to hear about your life, argue about football, complain about politics. The friend who gets it right is the one who does not flinch from the reality and does not reduce me to it. Sensitive to what I am dealing with, and simultaneously refusing to write me off as someone whose real life is already over. That takes courage. Most people have more of it than they think.

What “both” looks like, day to day

It is not a philosophy. It is a practice, and it is sometimes exhausting.

I make short-term plans – something to look forward to next week, next month – because investment in the living part is not optional. I have difficult conversations about what comes next, because responsibility to the people I love demands it. I tell people I love them, including people I might previously have been too English to say it to. I write – a lot, and with urgency – because what I am building will outlast me. That is the living part and the preparing part happening in the same act, at the same desk, on the same day.

None of this is heroic. It is just what “both” requires.

I called the previous post “Being a Friend to Someone Who Is Dying.” I stand by it. Pretending I am not dying would be dishonest, and I have no patience for dishonesty in a piece meant to help people. But my website is called Living Life with PSP because I am also doing that. Fully. Loudly. Every single day.

The tension between those two things is not a problem to be solved. It is simply the life I am living.

So – living? Dying? Both!

The post that started this conversation is here.