Why Me? Why Us?

It is 3am. I am sitting in my wheelchair asking myself a question I try not to ask too often, because I don’t know the answer. It is as simple as that.

Why me? Why us?

Us, as in my family. My wife. My kids. My Mum. My siblings. Why do I have to go through this terrible disease in my 40s and 50s, and why do they have to be passengers on the journey?

I should say at the outset that I am not a rabbi and I am not offering theology. I am an ordinary person wrestling with a question, and this is a personal blog, so I speak for no one but myself. I don’t think any human being gets through life without asking it in some form. Some ask it about illness, some about loss, some about a life that simply didn’t turn out the way it was supposed to. You don’t need to be religious to know the question. You just need to be human, and probably be awake at 3am.

PSP is not the journey I would ever have chosen. It is one of the kids selected last when playing sport in the school playground: people simply don’t want it. It comes with pain and discomfort, a progressive loss of your faculties, and it slowly locks you into a cage: unable to travel, wheelchair-bound, eventually a hospital bed, with a far shorter life expectancy.

And I thought, like so many people, I had a happy future to look forward to. I had worked so hard to build it, with no gifted childhood or golden ticket. I have such a wonderful wife. I have the best kids (no offence to anyone else’s, especially my nieces and nephews whom I adore). I was looking forward to smothering grandchildren with gifts that annoyed their parents. I’ll admit I was looking forward to the occasional cruise, safari, or spa hotel. I was looking forward to a lot of things. I have already missed out on many of them. Even our joint 50th cruise last year, which I spent far too much money on, was only semi-enjoyed by my wife and daughter because I couldn’t go.

So why me? Why us?

There are two good reasons for not even asking, and I’ve heard both. Sometimes from others, sometimes from myself, like right now.

The first is that it is futile. There is probably no answer to be had on this earth, and it wouldn’t help anyway, as there is no cure and no treatment. I have effectively already been bitten by the snake; I am just living through the slow but somehow quick delivery of the venom. It has no antidote. It is too late. The present, and much of the future, have to some extent been written.

The second is that it is self-centred and indulgent. I just read about a four-year-old who drowned on holiday – that is a true tragedy. People die every day, many after lives far harder than mine. As more than one person has said to me, I could die in a car accident tomorrow. We just don’t know. More than that, I have already had so much for which I should be grateful. Truly. So who am I to demand an explanation?

Both arguments are valid, yet despite them, I am still sitting here asking. It is not the first time I have asked it, and it will not be the last. It seems to me that it is only natural. I have written before about trying to push off the question – I have tried, but today it came back and I decided to work it through, despite its futility.

I am far from perfect (far, far), but to my knowledge I have not killed, stolen, committed adultery or willingly done harm to others. In business I made many decisions which impacted people. Alongside all the good things (helping people grow, helping businesses grow), I also had to fire people and advise on job cuts, but I always tried to do so fairly, with caution and care.

I have tried to live with integrity and to set a good example, as a husband, a father, a boss, a person, and I admit I have often failed. There is plenty I have got wrong, in my dealings with people (yes I have gossiped, told a white lie occasionally for which I am sorry) and, for those who share my faith, in my service to G-d. But I cannot isolate a single thing that would explain this. Nothing stands out. The calculation is way above my pay grade.

Those who don’t believe in a god would say it is simply random. I don’t believe that. I believe that G-d, for His own reasons, which I trust, has set me on this path. Either way, we end up sitting in a similar place, with no answer to the question at hand.

So perhaps alongside the futility there is a parallel story. Perhaps, alongside all the blessings I have received to date, I am still here for a reason. Perhaps I am now here to achieve something different, a purpose unique in some way to me. I have to make the best of the situation I am in and do as much good as I can. I am trying. Whether I am succeeding is not for me to judge.

And why us? Why does my family have to carry so much of this? I can’t answer that either. I pray it doesn’t scar them, and that somehow their lives are shaped positively in the long run. And I am truly sorry for any pain of theirs that traces back to me.

My favourite book of the Bible has always been Kohelet, Ecclesiastes in English, written, tradition says, by King Solomon at the end of his life. Whatever you believe, it is one of the most raw and beautiful pieces of writing about mortality ever produced. His advice to the young, which I pass on to anyone far from my position, comes at the start of his final chapter:

“So appreciate your vigour in the days of your youth, before those days of sorrow come and those years arrive of which you will say, ‘I have no pleasure in them.'”

In other words: take advantage of life before the days arrive when you can’t. You never know when that will be. Treat every day as an opportunity to do good, to achieve your objectives, and to have fun.

For myself, I take Solomon’s conclusion at the very end of the same chapter, and I hold onto it: revere G-d, do what is right, and leave the accounting to Him.

So why me? I will never know, and I don’t think I will ever come to a different conclusion. Do I mourn a lost future? Yes. But dwelling on it is futile, and, if I am honest, a little self-centred. I am one of billions of people on this planet, and I have had a better life than most of them. All I can do is carry on, and do the best I can with what I have.

As for the cruise ships, as for the grandchildren, I guess I am not destined for that future.

But then, neither are so many, many others. And they got no explanation either.