My Eyelids Clamped Shut Again: Twice in 12 Hours

Look at the titles of some of my blog posts over the last 48 hours: I Did It!, I Can. I Will., Two Further Small but Important Positive Steps, followed by And Then, BAM. My Eyes Wouldn’t Open: 25 Minutes of Calm Terror.

And then, last night, it happened again.

A light was switched on by mistake. With my extreme sensitivity to light, it felt like a dagger going into my eyes. My eyelids clamped shut and stayed that way. I don’t know for how long because eventually I fell asleep. Thankfully, when I woke up three hours later, they had unlocked.

Twice in approximately 12 hours, I experienced prolonged periods when I could not open my eyes. So how do I process such a development, particularly after such extraordinary highs?

The easy explanation is that there was a degree of inevitability about it. I pushed myself incredibly hard to achieve my Rosh Hashanah (Jewish New Year) goal and actually said beforehand that I was prepared to accept the consequences because it mattered so much to me. Perhaps this is part of the price, and my body now needs rest and recovery.

There is another relatively positive interpretation. The Botox treatment has clearly been helping because it kept the involuntary eye closure under much better control for a while. Perhaps the next treatment can be adjusted, and there are medical and practical ways of managing this better.

But there is also the explanation I cannot simply push aside. PSP is advancing.

Twice in 12 hours, I had no control over whether I could open my eyes. I won’t pretend that doesn’t scare me. It does. The second episode was less frightening than the first, perhaps because I knew my eyes had reopened before, but losing control over something as fundamental as opening your eyes is terrifying.

There have been other signs. My horizontal field of vision seems to be narrowing. My vertical eye movement has been badly affected for a long time. Light sensitivity has become a major problem. Now I have experienced these prolonged periods of complete eye closure.

During those periods, I couldn’t use my phone. I heard noises I couldn’t place because I couldn’t see where they were coming from. For that time, I was effectively blind.

Sitting here now with my eyes open, it seems remarkable how effortlessly we open, close and blink our eyes thousands of times a day. Until suddenly we can’t.

So how do I bounce back?

Strangely, my answer came from something else I am writing. I have been working on an article about King David and, thanks to an online friend who referred me to it, I read Psalm 13 again. David writes:

“How long will I have cares on my mind, grief in my heart all day? How long will my enemy have the upper hand? Look at me, answer me, O my ETERNAL God! Restore the luster to my eyes, lest I sleep the sleep of death.”

Psalm 13:3–4

“Restore the luster to my eyes.”

Of all the verses for me to encounter today, that one felt almost spooky. My enemy, of course, is PSP.

But only two verses later, David says:

“But I trust in Your faithfulness; my heart will exult in Your deliverance. I will sing to GOD, who has been good to me.”

Psalm 13:6

וַאֲנִי ׀ בְּחַסְדְּךָ בָטַחְתִּי יָגֵל לִבִּי בִּישׁוּעָתֶךָ אָשִׁירָה לַה׳ כִּי גָמַל עָלָי (for some who know the verse very well in Hebrew)

What struck me was not simply where David finishes, but where he starts. He is distressed. He asks how long this will continue. He asks God to restore his eyes. In the verse between those two passages, he even describes himself as tottering:

“Lest my enemy say, ‘I have overcome him,’ my foes exult when I totter.”

Psalm 13:5

And then comes faith. Not instead of fear. After fear.

That distinction matters enormously to me today. Faith does not require me to pretend that these episodes weren’t frightening or that I am happy about PSP advancing. I was scared. I was even angry for a while. David wasn’t pretending everything was wonderful either.

I will continue the Botox, use the eye wipes, speak to my doctors, learn new techniques, regroup and prepare for this happening again. I also have to accept that PSP may be progressing in an area fundamental to my independence.

But fear does not get the final verse.

I have received enormous blessings. I have a family I love, faith, purpose and people around me helping me through this disease. Only days ago, from my wheelchair, I achieved something I had thought might be beyond me. None of that disappeared when my eyelids closed.

Perhaps “bouncing back” is therefore the wrong expression. I don’t need to bounce anywhere. I need to process what happened, prepare for what may happen, do everything medically and practically that I can, and then trust.

David tottered. So do I. And right now, it is truly scary.

But fear does not get the final verse.

David kept singing. So will I.