|
Getting your Trinity Audio player ready...
|
People assume that optimism is something you either have or don’t — that some of us are simply wired to see the glass as half full while others aren’t. I’m no psychologist, so I can’t settle that debate. But I can tell you this with certainty: positivity is hard work, and that means anyone can work on it.
For me, it has never been a personality trait I can coast on. It is a daily practice, and it takes real effort. I am not always positive. I have my bad moments, and those around me feel it. I feel very guilty for that. But I fight back and do my very best to keep things on a positive track.
PSP is horrible. The catalogue of difficult moments is long, and harder than any single moment is the fear of what’s coming. Walls closing in, mobility diminishing, independence narrowing, slowness deepening. I can see, on the horizon, the self-confinement that marks the latter stages of this disease. That’s a real and frightening thing to carry. And what makes it all the harder is the speed. The pace at which it is all moving is simply staggering.
And yet life is more than blessed and worth living. My daughter and her new husband are coming to stay with us this weekend. Less than two weeks ago I had the best day of my life. Those who’ve seen the video will know exactly what I mean. My other children are home. My wife is here. I have everything I need to hope for a beautiful time together.
I am restricted, and even so, I have produced a fourth book: 242 pages of hard craft, serious thought, and stubborn effort. The foreword written by my friend Rabbi Doron Perez is one of the most wonderful things I have ever read about anyone. I’m genuinely a little embarrassed that it’s about me, but I have included it because I respect his words and because, yes, it belongs in the book. I am stubborn. I am tenacious. I do see the glass as half full, but I work hard at it. I have to overcome moments of acute sadness and moments of acute depression. The positivity is not effortless. It is earned.
This is the thing I most want people to understand: my optimism is not a gift of luck or temperament. It has been built, slowly, through conscious effort and faith. Which means that others can do this, to some degree, in their own way. Not explosively. Not falsely. But steadily: a slightly more positive outlook, each at their own level, maintained through genuinely difficult times. And I say this honestly. I would rather be an F1 driver than be living this life. Positivity is always relative to where you are starting from.
I am also, I think, relatively at peace with where this is all heading. I have lived a wonderful life. I have seen the fruits of my own and my wife’s hard work in the people our children have become. I feel, and I use the word with care, blessed.
I am gutted that I may not be present for large parts of their future, but I am very proud of what I have managed to do in the time I have had.
The book is not a commercial venture. I am not trying to make money from it. I have set the price at the lowest rate Amazon permits. It is an attempt to say: you can do this too. Hold on to a positive outlook. It is worth the effort.
One thing has carried me through each new stage of this illness: the fear has always been worse than the reality. Every time. I take real comfort from that as I move forward.
Those who know me well know I’m a natural control freak. It seems the final lesson I have left to learn is how to live gracefully without that need to be in charge. I haven’t let go of the reins yet. But I’m watching myself, and we’ll see.
Wishing you Shabbat Shalom, a good and kosher Passover, Happy Easter and Eid Mubarak, and anything else I may have missed. And of course, a pleasant weekend.
