Botox and Blinded

There are moments with PSP that you simply cannot put behind you so easily, and that require a bit of processing. This is one of them.

My eyelids closed. Not gradually. Not as a hint. They closed, and they stayed closed, for an hour or so. I was, to use the word, effectively blind. Not because anything had gone wrong with my eyes — my eyes are fine, in the sense that PSP eyes can be fine, which is to say, they are the wrong end of a neurological problem rather than the problem itself. The issue was my eyelids, which simply refused to open.

It had been a long day. A good one, in many ways — I had done a lot of exercise, which I am proud of and which matters enormously to me. But the body, or at least my body, has a way of presenting the bill at the end of a long day, and last night the bill arrived in an unexpected form.

I should be clear: this is not the first time my eyelids have done this. I have experienced many episodes before, usually more often in one eye, and I have written about involuntary eye closing as part of the broader PSP picture. But last night was categorically different. This was the first time it happened over a sustained, extended period. An hour or so — maybe a little less, but it repeated itself again in the evening having briefly got better. Not a brief episode I could wait out and forget. Something altogether more serious, and more disabling.

We were sitting in the lounge, my family around me, and I could not see them. I did not panic — I want to be clear about that. But I did do something which, apparently, irritated my children considerably. I started talking. A lot. I overcommunicated, as they put it, with considerable feeling. I cannot fully explain it, other than to say that when you cannot see the people around you, something instinctive kicks in and you reach for words instead. As it happens, post event — and post Shabbat — I checked, and there is some research to support this: studies suggest that when sight is lost, even temporarily, people lean more heavily on language as a means of staying connected and orientated. My children, I do not think, will be especially comforted by this scientific justification.

The only way I could see anything at all — and this compounded the annoyance of all around, due to the sheer freakiness of it — was to use my fingers, holding my eyelids open for brief moments just to catch a glimpse of the world before they fell shut again. I am told it was not a pretty sight. I can only take their word for it. When it eased, my vision was still very poor, but it was enough to eat dinner, and putting on sunglasses helped, temporarily anyway.

During that hour I needed my carer to take me to the bathroom twice. That is the lived reality behind the clinical terminology. During that period I also fell in transfer from the chair to the wheelchair — which is, I suppose, not surprising, but with no significant side effects.

The medical term for what I experienced is Apraxia of Eyelid Opening, or AEO — not to be confused with SEO. It sounds technical, and it is, but the experience is not technical at all. It is sitting in the dark, inside your own face, knowing your eyes are there and being utterly unable to reach them.

Blind, according to the clinical definition, is a debate, I suppose, because three dictionaries define it differently. Merriam-Webster is clinical: less than one tenth of normal vision in the more efficient eye when refractive defects are fully corrected by lenses. By that standard, I was not blind. My eyes, had I been able to open them, would have functioned perfectly well. Oxford and Collins, however, are less clinical and more human about it — both define blind simply as being unable to see, including temporarily, for whatever reason. By those definitions, I qualified without question. But in the end, the dictionaries are beside the point. I could not see. I was blind. That is the beginning and the end of it.

What this is not, and I want to be equally precise here, is a problem with the eyes themselves. It is not cataracts, or anything that an optician could address. It is the brain failing to send the right signals to the eyelid muscles. Research published on PubMed confirms that AEO affects around one in four PSP patients and is described in the medical literature as a common and highly disabling feature of the disease. A study of PSP patients found that 26% experienced apraxia of lid opening and/or closing. Another study describes patients whose defining disabling feature was blindness due to an inability to reopen the eyes — which is, word for word, what happened to me last night.

So why Botox in the title? This is where I have to pause and acknowledge something that would have been utterly unthinkable to me even a year ago. Botulinum toxin — Botox — is one of the documented treatments for AEO in PSP, injected into the muscles around the eye to reduce the involuntary contraction that forces the lids shut. Now, Botox is not something I have ever given a moment’s thought to. It has never featured in my plans, my conversations, or my wildest imaginings. And yet here we are. PSP has a remarkable talent for expanding one’s horizons in directions one did not request. If Botox around the eyes is what it takes to keep them open, then I am, it turns out, entirely game. Who knew. Certainly not me.

A brief aside on botulinum injections. After the episode I have just described, I shared what had happened with my neurologist. He noted — and I do not want to dwell on the detail — that involuntary eye closure is a common feature of PSP, and that it responds well to botulinum injections. I mention it not as the centrepiece of this post, but because it matters: there is a treatment. It is specific. It is used. And I intend to pursue it.

I am just pleased to be able to see the computer to write about it right now. PSP is systematic and unhurried in what it takes. Last night it took my sight for an hour. I do not know when it will do so again, or for how long. What I do know is this: I will not look away from it. Even, apparently, when I have no choice in the matter.