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There are lots of things I imagined might happen as I got older.
Wearing sunglasses while watching television wasn’t one of them.
Neither was sitting at my computer wearing sunglasses and a baseball cap pulled down low, looking like I’m trying very hard not to be recognised.
There are, however, no paparazzi outside the house.
The truth is much less glamorous.
My eyes have become incredibly sensitive to light. Bright sunshine is bad enough, but increasingly it’s ordinary daylight, LED lights, computer screens and even the television in the evening. Even the digital photo frame my children bought me for my birthday can shine directly towards me in a way that is genuinely painful. Something that is meant to make me smile can instead leave me squinting and reaching for my sunglasses.
My eyes stream, I squint constantly and, if the light is bright enough, my eyelids simply decide they’ve had enough and close.
So now I wear sunglasses pretty much all the time.
My son bought me a pair that are, apparently, “quite cool.”
In fairness, they are also rather clever. They fit over both my distance glasses and my reading glasses, allowing me to wear two pairs of glasses at the same time.
Nothing says “cool” quite like sunglasses over another pair of glasses.
Please don’t tell anyone.
Especially the paparazzi.
Because, however fashionable they may be, there is nothing particularly cool about wearing sunglasses indoors while working on the computer or watching television in the evening.
The baseball cap completes the look. Somewhere between a retired baseball player, an ageing rock star and someone hiding in the Witness Protection Programme.
Many years ago, long before PSP, I was waiting at the bar of a rather smart restaurant while my daughter and three friends enjoyed the birthday dinner we’d treated them to. I’d come straight from work in a business suit and decided to stay nearby rather than leave them on their own.
A gentleman came over, looked at me rather seriously and asked,
“Excuse me… which celebrities are you protecting?”
Apparently, I looked like their bodyguard.
These days, with the baseball cap and sunglasses, I suspect he’d ask exactly the same question.
The difference is that today I’m not protecting celebrities.
I’m protecting myself from the light.
The strange thing is that everything becomes darker. Colours lose some of their brightness. Every room feels like dusk. I’ve learned that permanent twilight is preferable to constant discomfort.
It’s a compromise.
Either I see a darker world, or I spend the day blinking, squinting, streaming tears and wishing someone would turn the lights down. Living in permanent twilight is the better option, but after weeks of it the constant darkness can become surprisingly depressing.
I’ve also discovered that reducing the light isn’t just about comfort. Every bit of light my brain has to process seems to cost energy. If I can reduce the sensory overload, I have a little more energy left for everything else. With PSP, every little saving helps.
Photophobia, or extreme sensitivity to light, is surprisingly common in Progressive Supranuclear Palsy. One clinical study found it affected around 42% of people with PSP, while earlier studies have reported it in anywhere from 43% to almost everyone with the condition, depending on how it was measured. Reduced blinking, dry eyes, excessive tearing and abnormal eyelid function all contribute to the problem. It turns out that many of us end up permanently attached to a pair of sunglasses.
Until it happened to me, I assumed sunglasses were for sunshine.
Let’s not even talk about sunshine.
Recently I came out of physiotherapy into brilliant sunlight. Even with my sunglasses and baseball cap on, it was unbearable. In desperation I took the socks I hadn’t yet put on and draped them over the top of my sunglasses and cap to block out even more light.
I must have looked utterly ridiculous.
It still wasn’t enough.
Somewhere along the way, my sunglasses stopped being an accessory and became another piece of medical equipment.
They now sit alongside my wheelchair, my medications and my reading glasses. The only difference is that they still fool people into thinking they’re a fashion choice.
There is one unexpected upside.
People don’t always recognise me immediately.
Sometimes they give me a little distance when I want it.
Mind you, that may have less to do with the sunglasses and more to do with the baseball cap.
Either way, if you ever see someone indoors wearing dark glasses and a cap, don’t assume they’re trying to look mysterious.
They may simply have PSP.
Or perhaps they’re another member of the unexpected club that wears sunglasses at night.
Apparently, we’re all becoming vampires.
I just wish vampires looked this tired.
