I Was Embarrassed, I Hid

I was having a good day. I’d had a good workout at physio and, despite needing a decent rest afterwards, I was doing well.

I was certainly cognisant enough to win one out of two games of Rummikub against my mum.

But PSP made itself present.

I stiffened up badly. The pain in my leg became intense and rigidity set in across my jaw, shoulders, upper arms and hands. At one stage, I simply couldn’t use my right hand.

I repeatedly asked my live-in carer to use the massage gun on my upper arms, which helps relieve my hands even though it sends painful pulses through them, and on the area by my right ear and hairline, which helps relieve my jaw.

I also became incredibly noise-sensitive and, later in the afternoon, more light-sensitive than usual. At one point, I had an eye mask on, had asked for the lights to be turned down, and was wearing both earplugs and noise-cancelling headphones.

The pain in my leg became severe enough that I took an opioid. Earlier in the day, stretching had been enough to help, but this time the pain was much worse despite the gym session and rest.

We decided to try to break the cycle rather than sit and dwell on it. My mum, my live-in carer and I took the dog out for a walk. Well, I went for a wheel with the dog, which is about as close as I get these days.

It was a pleasant afternoon and seemed to help.

As we headed out, I stupidly took all of my afternoon tablets. Included among them was an anti-anxiety pill that my psychiatrist had specifically warned me never to take if I was also using an opioid.

It was a mistake and one I won’t make again.

Whether that amplified what followed, I don’t know. What I do know is that the evening became a perfect storm of PSP symptoms, pain, sensory overload, medication and perhaps my own wiring.

Despite all of this, I don’t remember feeling anxious. When we got home, I felt better and my mum actually commented on my hand being much looser. We watched the news and I caught up on the tennis at the Pre-US Open exhibition mixed doubles.

But the discomfort, stiffness, noise and light sensitivity returned, perhaps as the opioid wore off. I was on edge and, let’s just say, snappy.

More than anything, I was embarrassed. Acutely embarrassed.

My wife, mum and daughter were around, and my son was soon to arrive with his wonderful girlfriend, who has long since become part of the family and, to her credit, has already seen me at my worst and reads my blogs.

I just wanted to hide.

From everyone around me and, I suspect, from myself.

I asked my carer to wheel me to bed. I went to bed fully clothed. No toothpaste this time. Not even mouthwash.

I simply felt a sense of relief and I must have fallen asleep pretty quickly.

It was PSP, medication and perhaps my own wiring, all rolled up together. I didn’t want to be me. I didn’t want to be seen as me.

More than anything, I was embarrassed by me.

My family did the right thing and told me, logically, that I was okay and that there was no need to hide. But they didn’t stop me.

I didn’t have a major outburst. I largely controlled myself. I wasn’t “high” in any sense that I recall. It wasn’t a panic attack.

The final straw is that I went to my computer – my safe portable place – and I couldn’t see anything at all due to the light sensitivity – simply nothing would come into focus.

I just needed to get away. I didn’t want to be around anyone, however close to me they were. I was afraid of what would happen, what I would say.

Faced with the choice between fight or flight, I chose flight.

I suspect that is one reason I spend so much time at home. Home provides an easy escape route. No cars, no transport, no planning. Just a short journey to my space, my bed, somewhere I feel safe.

Earlier in the day, I had a call with my therapist and told her that I was actually doing fine, which was 100% true at the time. I also told her that if she caught me at another moment, I might give a completely different answer.

PSP moves in strange ways and with incredible speed.

One moment you’re talking honestly about doing well, despite the wheelchair, carer and rigidity. A few hours later, you’re hiding in bed, desperately wanting the world to go away.

I have no idea what I looked like from the outside, but I know what I looked like from the inside.

I didn’t like it one bit.

Even as I write this, I struggle to articulate exactly how I felt. There were too many factors at play: physical symptoms, medication, behaviour, snap decisions and perhaps some anger too.

Not anger directed at anyone else, but a kind of self-pity and embarrassment about who I was and how I was behaving.

Was my response proportional? Was the red card in football necessary?

Probably not.

A warning, or perhaps a yellow card, would probably have been enough.

But that is how I felt at the time. As I’ve said many times before, emotion trumps logic. How you feel is how you feel.

One advantage I have retained, possibly against the odds, is strong cognitive and communicative ability.

The downside is that when I break, I know it. I continue to know it afterwards. The feeling lingers. It doesn’t simply pass unnoticed. Writing helps more than I can possibly say.

I got up in the night feeling terrible, and my wife was there for me.

Looking back, I get to observe how I felt, and last night I didn’t like what I saw.

I was embarrassed.

PSP is progressive and I am acutely aware that moments like this may happen more often.

Writing this blog is a way of reminding myself that I need to remain on guard wherever possible. I need to watch for the signs. I need to avoid being stupid. I need to remember that I may be magnifying the effects in my own mind and that other people may not see me the way I see myself.

I also wonder how many other people feel the same embarrassment while being unable to explain what they are feeling to those around them.

In hindsight, I got to see the other Ben. The Ben consumed by PSP, not the one coping with it well. This was not the Ben who would ever previously have sent himself off to bed. This was not the Ben who would ever previously have walked himself off the field.

Last night, I did.

I suspect I am not the only one.

I woke up this morning, some would call it night, feeling much better. Much more lucid. The noise sensitivity had gone and I felt okay.

And so begins the daily yo-yo.

One of the advantages and disadvantages of writing a blog is that it captures these fluctuations. During studies and three-monthly or six-monthly check-ups, you never get this level of detail.

Everything is condensed into statements such as “Things are okay” or “I’ve had some poor sleep.”

A blog captures the see-saw.

For PSP, or at least for my PSP, it reveals the enormous swings and incidents that sit behind those routine check-ins. Perhaps that is unscientific, but it feels truthful.

For me, writing this today helps process last night before it is lost to time.

It serves as both a warning and an education for the future: a reminder about the drugs, a reminder to watch for similar signs, and perhaps a reminder that I need to unlearn some of the embarrassment.

After all, I am living with a terminal neurological condition.

Why do I need to be embarrassed when I am surrounded by my loved ones?

There is already enough on the pile without adding shame for things that are often beyond my control.