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I don’t quite know how to describe this Shabbat. It contained some of the happiest moments I have experienced in recent months and one of the most difficult days since my PSP diagnosis. At times, the experience genuinely resembled what I can only describe as “torture”.
As I write this, the brightness on my screen is turned down to the lowest possible setting. I am wearing sunglasses . There is a towel over my head to block the light behind me. I have earplugs in, with noise-cancelling headphones over them. The World Cup is being shown on TV but the TV is off not because I don’t want to, but because I simply can’t.
The reason is severe photophobia, an extreme sensitivity to light, combined with a severe sensitivity to sound (not as damaging but not nice to say the least). The light feels almost physically painful. Ordinary household noises become overwhelming. At different points today I have had to retreat to bed wearing a blindfold and earplugs, shutting out as much of the world as possible.
Because I observe Shabbat, I cannot use electricity. Thankfully, my carer quietly helped throughout the day by turning lights on and off whenever they became unbearable. Without that help, the day would have been even harder.
So why do I describe these twenty-four hours as both joyful and horrific?
Because Friday evening was wonderful.
I felt surprisingly well. Against my better judgement, I accepted an invitation to lead the Friday night prayers from my wheelchair. The synagogue was full. I worried that I might not manage, but everything went smoothly. For a little while, PSP loosened its grip and allowed me simply to enjoy the moment. It felt deeply meaningful to lead the service once again.
Afterwards we enjoyed a lovely dinner with my family, my in-laws and my mother. We laughed, talked and simply enjoyed being together. For a few precious hours, life felt wonderfully normal.
Then came Saturday.
The contrast could hardly have been greater.
Throughout the day my sensitivity to light and sound became extraordinary. The severity rose and fell, but at its worst it was unlike anything I have previously experienced.
Looking at a single light bulb, even while wearing proper polarised sunglasses, felt like one of those interrogation scenes in films where an intense light is fixed directly onto someone’s face. It wasn’t merely uncomfortable. It was almost unbearable. That is why I use the word “torture”. It is the closest description I can find.
Sound was only slightly more tolerable. The gentle whir of a fan seemed deafening. Even our supposedly quiet air conditioning sounded overwhelming. Everyday sounds had somehow become amplified far beyond what my brain could cope with.
By the afternoon I retreated to my bedroom. I lay in bed wearing a blindfold and earplugs, alone for periods of time, with a headache slowly building. There was very little I could do except think.
That was perhaps the hardest part.
The symptoms were dreadful, but what frightened me even more was what they might mean. This is just the start of the PSP journey.
I almost didn’t write this.
I felt physically exhausted and emotionally drained. But documenting these experiences matters. I write partly for myself, so that I can look back honestly at this journey and process it. I also write for others living with neurological diseases, because so much of what we experience remains invisible.
One of the unexpected highlights of the afternoon came when a close friend flew over from the UK simply to spend time with me. There was nothing we could do. I couldn’t go out. I couldn’t sit in the garden. I couldn’t even tolerate ordinary light.
So he sat quietly beside my bed for about ninety minutes. He was actually sitting in my wheelchair!
We talked softly, quietly enough that I could hear him through the earplugs.
It was one of the strangest visits I have ever had.
It was also one of the kindest.
During day when I was feeling a little better, I had a conversation about maintaining a positive attitude, and naturally Viktor Frankl came into the discussion. His writings continue to inspire me deeply. But I also believe that even Frankl must have had days when hope was harder to find.
Today was one of mine.
I have often written that living with PSP does not mean pretending everything is fine. Hope matters. Gratitude matters. Humour matters. But honesty matters too. Some days are genuinely wonderful. Others involve genuine suffering. Both are real. Both deserve to be acknowledged.
The nerve pain I have been living with remains more intensely painful. This was different. I still cannot decide which I would rather endure. A minute of severe nerve pain is dreadful. A whole day hiding from light and sound is dreadful in an entirely different way.
If I am honest, today frightened me.
Not simply because of how it felt.
But because I cannot escape the thought that this may be another glimpse of what lies ahead.
Yesterday evening I was privileged to lead my community in prayer.
Less than twenty-four hours later I was lying alone in a darkened bedroom wearing sunglasses, earplugs and a blindfold, hoping the world would become quiet enough for me to bear it.
That is the reality of PSP.
It can change your life in ways you never imagined, and sometimes it can do so in just twenty-four hours.
Tonight I do not know what tomorrow will bring.
I can only hope that tomorrow allows me, once again, to step back into the light.
