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If the Ben of ten years ago had passed me in the street today, I think he might have pitied me.
In fact, I’m pretty sure of it.
He would have seen a 51-year-old man in a wheelchair, probably being pushed by his carer.
If he had known a little more, he would have known that I could no longer walk, drive, work or travel independently. That I had been forced to give up my career in its prime. That I may not live to see all of my future grandchildren, please G-d. That I needed full-time care. That I had a terminal neurological disease about as brutal as they come.
And I think he would have made an enormous assumption.
Not simply that I had lost abilities. That would have been true.
I think he would have assumed that somewhere along the way I had also lost much of my value. Yes, I think he would have used that word.
That I had become a cost and a receiver. That I had become someone to pity. He would have been completely wrong.
And that is what surprises me.
Ten years ago, my life looked very different.
I had younger children. I was at the height of my career. There is a video on YouTube of me speaking at a conference in Barcelona, standing on a stage, travelling internationally, doing the sort of things that made a life look full of momentum.
From the outside, that Ben looked considerably more capable than this one. He could walk onto the stage and perform with charisma. This Ben couldn’t get onto it without substantial help.
He could travel to Barcelona. This Ben barely travels at all, and when he does it may well be to the hospital for an injection of Botox.
He had a significant career. This Ben is retired through illness.
Put photographs of the two Bens next to each other and I don’t think there would be much debate about which one appeared to have the fuller life.
But photographs are dangerous things. They only show the outside.
And ten years ago, I think I would have made exactly that mistake.
I would have looked at somebody like me and measured his life largely by what I could see.
I would have seen what had disappeared and assumed I understood what remained.
What I could not have seen was the person inside.
I would simply have missed him and filled in the gaps with my own assumptions.
I was wrong.
The Ben of ten years ago would not have seen the Ben who has since written four books and countless blogs, read hundreds of thousands of times, alongside advocacy work on LinkedIn, writing blogs on The Times of Israel and mentoring dozens of people.
He would not have realised that this Ben has a freedom of creative thought no longer constrained by work, bosses, projects or schedules.
He would not have seen the Ben who still has purpose, who retired with his integrity intact and can look back with enormous satisfaction on a career he loved.
He would not have seen the Ben who has watched his children grow into wonderful adults and held the hand of one of them as we went down the aisle.
He would not have seen the Ben whose faith and trust in G-d have grown despite the pain, discomfort and frankly terrible path of PSP.
He would not have seen the Ben who is still setting goals, still trying to help other people, still thinking about what he can contribute and still laughing.
Most importantly, I don’t think he would have imagined that the man in the wheelchair might actually feel more purpose and meaning than the man standing on the stage in Barcelona.
Yet I think I do.
That is not because PSP has somehow improved my life. It hasn’t. I didn’t want any of this, and I would give the disease back without hesitation.
But purpose is not the same thing as physical ability. Meaning is not the same thing as independence.
And value to the world cannot be measured by whether somebody is standing on a conference stage or sitting in a wheelchair.
I know that now because I have lived on both sides of the photograph.
Ten years ago, I hadn’t.
Perhaps that is the lesson that matters most to me.
We are very bad at looking at the outside of somebody’s life and imagining we know what is happening inside it.
The uncomfortable thing is that I still make the same mistake. I project forward and imagine how the Ben of a few years from now might feel with further losses of communication and capability.
And this morning it occurs to me that there is a very good chance I am wrong about him too.
Ten-years-ago Ben could not imagine the life inside this wheelchair. Perhaps present-day Ben should be a little more careful about imagining the life inside whatever comes next.
That is a real lesson for me this morning.
Interestingly, this Ben doesn’t particularly care if somebody passes me in the street and pities me.
Maybe that is one of the greatest measures of self-confidence I have ever had.
I am comfortable with who I am.
I never imagined I would be able to say that while sitting in a wheelchair with PSP.
If I could have a discussion with the Ben of ten years ago, I would tell him all of this.
He wouldn’t believe me. But this Ben wouldn’t particularly care.
I would probably also tell him that he is working far too hard, although, given how useful the financial resources have subsequently become, I might thank him for that part.
But on the pity?
Keep it.
The Ben of ten years ago would have looked at the outside and thought he understood the inside.
He didn’t.
And I need to be very careful not to make the same mistake about the Ben of the future.
