|
Getting your Trinity Audio player ready...
|
Last night contained two moments. One made me smile and gave me some hope that I could rejoin a limited number of communal events again with an ability to cope with the noise, the light, and the presence of lots of people that have been causing me to freeze. The other reminded me, without mercy, of the ferocity of PSP. Both arrived in the same evening. I can’t neatly put them together but they exist in parallel.
Part 1: The Candle and the Disguise
My wife was receiving an honor.
At a local community Independence Day celebration, my more than deserving wife was asked to light one of the candles in recognition of her dedication, and that of her friend who has also been dealing with very difficult circumstances similar in many ways to my wife’s, to giving their best under circumstances that would have stopped many others. She deserved it entirely. There was no question in my mind that I wanted to be there.
There was also no question that, under my new self-imposed rules, I would not have gone. The event involved noise, crowds, bright overhead lights, and a large number of children operating at full enthusiasm. It also involves seeing a lot of people who know me, which is difficult for me from a self-confidence perspective given my current situation. Everything that on my own recent and very real experience tells me, will cause me to freeze or something approaching freezing.
My entire recent strategy with PSP has been built around one principle: reduce risk. Keep the deterioration at bay for as long as possible, through discipline, through caution, through careful management of every environment I enter. But my wife was lighting a candle. So, we went—two of my children, my carer, and I—and we found a way to make it work. It mattered to her. It mattered to me. Those two facts outweighed everything else.
Which brings me to how I got into the room – my disguise. Earplugs, the kind distributed in vanity kits on long-haul flights. Sunglasses, despite the fact that it was 8 p.m. A baseball cap pulled firmly down, partly to manage the sensory assault from the overhead lighting, and partly to reduce eye contact I so struggle with. Noise-cancelling headphones held in reserve for extreme moments. My son by my side throughout. My carer in the background, ready to intervene if needed.
A few months ago I might have been leading that event. Last night I was the person at the very back in sunglasses at 8 p.m., wearing earplugs, with a baseball cap pulled down over his eyes. Given my usual degree of self-awareness, I was surprised how I was not in the least bit bothered by how I looked. My kids and those around me also didn’t seem to bat an eye lid (but then with the cap closed down low and sunglasses how would I know).
But I was there. And that is what counted.
I want to be careful about the conclusions I draw from this, because I am an all-or-nothing person by nature. Once I begin making non-black and white decisions, it becomes genuinely difficult to know where to stop.
I am not suggesting that the disguise becomes a lifestyle. I am not sourcing a second one in different colours.
But I am wondering whether earplugs, sunglasses, and a baseball cap might get me back to the synagogue on a Friday night and Saturday morning without dramatically increasing my risk of freezing. I am going to try this week and find out. Nothing ventured, nothing gained, as the expression goes – though in my particular situation, something ventured can just as easily mean massive damage.
One unanticipated side effect is worth mentioning. The problem is that with earplugs in, I lose the ability to gauge the volume of my own speech. My voice is not loud at the best of times. My son and daughter could not hear a single word I said. Hand gestures were attempted. They did not help. I was unable to communicate.
I will need a countermeasure, one that does not involve typing or handwriting. I am open to suggestions. If other PSP patients have deployed similar mechanisms, I would genuinely like to hear about them. The disguise, I suspect, still has room for refinement.
Part 2: The Message
Earlier that same morning I looked in on new comments on a PSP support group, as I often do. Among the posts was this very stark message:
“Another PSP warrior is in his final days. Please hold him in your thoughts.”
Despite there being many comments, there were no desperate prayers for healing in those comments. No urgent appeals for miracles. That is not what this community does, and it is not what PSP asks of us. What settles over a community like this, over time, is something closer to a sad and steady acceptance. The path is well-trodden. It is solemn. What we offer a PSP warrior in his final days is a quiet wish: that the journey ahead is as dignified as it can possibly be, for the patient and for the caregiver who walks it alongside them. That is all. That is everything.
I read it and put my phone down.
I do not want to be that post for as long as I am still able to function as a person. I know what functioning as a person feels like. I felt it last night, sitting at the very back of a crowded space in sunglasses and earplugs at 8 p.m., watching my wife light a candle.
To the PSP warrior in that message, and to his caregiver: you are in my thoughts and in my prayers. I hope the path ahead is gentle. I hope it is dignified. I hope the room around you feels, even briefly, like those twenty-nine comments—warm, deliberate, and present.
One evening. A candle. A disguise. A message.
This is what life looks like right now. And on balance, remarkably, it is still life.
