Ray’s story

I took a video of myself blinking. I recorded it on my phone one afternoon, expecting to see nothing unusual. When I watched it back, I was startled. My upper eyelids didn’t move all the way, and my eyes involuntarily rolled upward. My blink was a partial, lazy motion, more like a flicker than a shutter.

I have been blinking that way my entire life. I just never thought to look. I have lived with facial paralysis, or significant facial muscle weakness, since childhood. I have never been able to smile showing my upper teeth, and I have never been able to fully close my eyes. It was part of a larger congenital picture. I was also born with an eye misalignment that came with its own long and complicated history.

For decades, though, I thought of the facial paralysis mainly as something cosmetic, a difference in my face that people might notice but that did not otherwise affect me much. It never occurred to me that it could also be putting my eyes at risk.

Then, around the time I turned 50, everything I thought I understood about it started to change. Five years ago, my right eye began to swell. Not the eyelid, but the white of the eye itself, ballooning with fluid from a condition called chemosis. At its worst, I developed a corneal dellen, an area of damage to the surface of the cornea that took months to heal. I remember looking in the mirror and barely recognizing my own eye.

What followed were two frightening years. Ophthalmology appointments stacked on top of each other. MRIs. Ultrasounds. At one point, a doctor used the word lymphoma, and I spent weeks waiting for scan results with that word sitting in the back of my mind, refusing to leave.

I would lie awake imagining what my life would look like if it were true. At work, I sometimes found myself reading the same paragraph several times without absorbing it because some part of my mind was still in that waiting room.

It was an exhausting kind of fear, not the fear of one bad moment, but the fear of not knowing, stretched out over months. Slowly, the medical investigation moved away from cancer and toward something much closer to home: my eyelids. My doctors began to piece together what I had never really examined myself. Because I cannot fully close my eyes and have limited eyelid movement, the surface of my eyes had been exposed to the air, to some degree, for as long as I could remember.

That was when the blinking video started to make sense, not as a strange curiosity, but as evidence of something real.

I also photographed myself sleeping and saw something I had never paid much attention to before: thin white slivers of my eyes remained visible through my lids. My eyes were not fully closing even while I slept.

The corneal dellen eventually healed with intensive lubrication, and my ophthalmologists now tell me that the cornea itself looks good, with no significant permanent damage. The larger problem appears to be chronic exposure and an unstable tear film. That distinction has taken me some time to understand. My eye can still burn, feel dry, or feel as though something is stuck in it even when the cornea looks healthy during an examination. The discomfort is real even when the findings are reassuring.

Because exposure appeared to be the main problem, I eventually had lower-eyelid surgery to bring the lids closer to the surface of my eyes. I now patch my right eye and use ointment at night. During the day, I use thick artificial tears every two hours, sometimes more.

What I still cannot fully explain is why this became a problem after so many years. For more than fifty years, my eyes somehow tolerated the exposure without developing serious problems. Then, seemingly out of nowhere, that balance changed. Maybe aging changed my tear film. Maybe the tone of my eyelids changed. Maybe the surface of my eyes became less tolerant of exposure. It may have been several small changes happening at once. I may never know exactly why. Even now, I sometimes wonder how much actually changed and how much I simply never noticed because I had never studied my own face this closely before.

My right eye, the one affected most by the chemosis and exposure, now also has a cataract. Because of everything else going on with the eye, my doctors have not yet been able to move forward with cataract surgery. That raises the stakes for me because my left eye has had poor vision since childhood. I was born with an eye misalignment and had surgery when I was about a year old. Because of complications with that first operation, another surgery was eventually needed, but it was not repeated until I was 15. During those years, the vision in my left eye became very weak and never fully recovered. So for most of my life, I have relied almost entirely on my right eye to see. That is the same eye now dealing with exposure, chemosis, tear-film instability, and a cataract that cannot yet be treated. It is not simply one eye among two. It is the eye I depend on.

I can manage the drops, the ointment, the patching, the appointments, even another surgery if it comes to that. What I struggle with most is the not knowing. Sometimes I find myself thinking more often than I would like: What if this gets worse? Will it stay stable? Will it improve? Will it become harder to control five or ten years from now? That uncertainty, more than any single symptom, has been the hardest part of the experience

Looking back, I spent most of my life treating my facial paralysis as something I had already accounted for, a fact about my appearance that had been filed away and settled. I never thought to ask what it might be doing to my eyes in the background, blink after blink, year after year.

I still do not know exactly where this goes, and I would be lying if I said that does not frighten me sometimes. But I know more now than I did when this started. I know what my eyes need. I know what to watch for. I know how to protect them better than I did before.

When I watch that blinking video now, I see it differently. At first, it frightened me because it showed me something I thought was wrong. Now I also see something my body managed to live with for more than fifty years. My eyes adapted for a very long time, now it is my turn to help them.