Facing My Face

No pictures in this story. Here’s why.

I’ve been thinking about writing this for a long time, but it’s been hard to sort through everything. Now, I have an hour to waste before I go to into surgery. (Accept advanced apologies for the utterly non-existent proofreading.)

Part of what makes writing about this so hard is that I have gone through life pretending that looks are incidental to who we are. There isn’t to say I’m vanity-free. Quite the contrary. But I also have a strong sense that there’s something shameful about that. That caring about how you look is fundamentally shallow and unseemly.

I’ve been fortunate in the looks department. As an infant I won a beauty contest. That may have been my father’s proudest moment—which says plenty.

I’m not suggesting that my looks are supermodel-worthy or anything like that. But my face has been a lubricant for most of the connections I have made. It looked good on TV as an on-air talent, on posters, in the photo on my book jacket, at job interviews, doing sales calls, on dating sites and when I walked into a bar or party.

We all gradually lose aspects of our beauty as we age. But for the most part, we always look like ourselves. Our eyes crinkle a bit more. We have more lines around our mouths. But our smiles are recognizably us. So when that changes suddenly, the ripples spread unpredictably.

About 21 months ago, I started having jaw pain. It carried on for about two weeks. It was bad enough that I called the dentist thinking that I had an impacted wisdom tooth. But before I could get to the appointment, I woke up on an ordinary day, walked the dog, went to the pool, worked out, and then took a shower poolside. While washing my hair, my right eye was stinging, burning from shampoo. That was when I discovered that it would not close. I went to the mirror, probably for the first time that day, and discovered that the right side of my face was completely paralyzed. It was slack. My eye would not blink And the eyeball bulged out in an awkward way.

Thinking it was an exotically quiet stroke, I went to the ER. They quickly did a Cat-scan, ruling out a stroke. Then, 7 hours of waiting, bloodwork, two exams, more waiting—and finally, they diagnosed Bell’s Palsy.

Bell’s Palsy is usually a short-term condition that lasts a few weeks or a couple of months at most. It is caused by an inflammation in the facial nerve. Because the nerve has to travel down very small channel in the skull, if it gets inflamed, it presses against that channel and can get damaged. For about 15% of people who get it, recovery takes longer or fails to happen at all. Moreover, the people for whom it is slow, often end up with complications..

At the hospital, they gave me the standard protocol. Two weeks worth of antivirals and steroids. They told me it would go away in a few weeks. I followed the instructions, as well as scouring the Internet for more information. Most of the information was either incomplete, inaccurate, obsolete, or quackery.

Facial paralysis is rated from level 1 to 5. Mine was a 5—the most complete. It was very extreme. I had to use tape on my forehead to keep my eyelid from scraping on my contact lens. I had eye-drop vials in every pocket. As it happens, my vision is already an issue. I’m severely myopic (nearsighted) plus, I have something called keraticonus, which is a condition in which the cornea becomes conical instead of remaining spherical. It causes astigmatism. Unfortunately, it makes correcting myopic vision more difficult. Glasses don’t fully correct my sight. So I wear scleral contact lenses. They’re huge hard discs that come all the way out into the middle of the whites of the eyes. That is the only way to fully correct my vision.

The Bell’s Palsy exacerbated it. Since I couldn’t blink my eye, it was constantly dry. The contact lens could not focus. It was a problem. But, since I thought that it would go away in a few weeks, I wasn’t too concerned.

However, as the weeks  passed, I saw no improvement. My neurologist, who was not a Bell’s Palsy specialist, told me it would never recover. That I should immediately start thinking about nerve grafts. She terrified me, and I thought she was being alarmist. However, I was beginning to worry. My vision was worsening, and the problems I’ll tell you about shortly were beginning to fester.

I had been doing a lot of research and had found a surgeon in Chicago who claimed that he had a procedure which could jumpstart the nerve healing in patients whose Bell’s Palsy had lasted 90 days or longer. He was credible; the head of a university Facial Palsy Center. I was at 80 days. I contacted him, got an evaluation, and went to Chicago for his surgery. Because the surgery required filling my ear canal with fluid, I was not allowed to fly back from Chicago. That required a whole other set of accommodations because my deteriorating vision impaired my confidence for driving. But I made it home to Florida

The Chicago surgeon was sure that I would get movement back within 30 days. He was wrong. With hindsight, his procedure did not make any difference. Of course, I could not have known that at the time and felt I had to try. But 30 days came and went, and then 60 days. I stopped sending him updates as I approached the year anniversary of my paralysis.

At about 7 months after the paralysis onset my muscle tone started improving. Then, very minor movement. Over the ensuing year I would work with various physical therapists. There were no specialists in facial paralysis recovery in my area. That’s particularly galling because I live in an area that is rife with medical schools, hospitals, and more doctors than you can possibly imagine. But there was no one. I finally found somebody who was about 75 miles away. Since this was at the tail-end of the pandemic, she was equipped to work with me virtually. Of course, as I would come to notice was typical, she did not take my insurance. Neither have the other specialist physical therapists I have found.

I am now just shy of two years with this. My face has recovered to about 50%. I have absolutely no movement in my forehead, and no movement in my chin. But some of the muscle tone has come back, and while my eye still won’t blink, I can close it.

I have developed something called synkinesis. This is common in people who have very severe Bell’s palsy and recover slowly. As the nerves grow back, the signals end up disorganized. Nerves that should only close my eye also make my mouth grimace. Nerves that should only move my mouth, cause my eye to narrow and close. Whenever I talk, my eye starts closing. Whenever I try to close my eye, my face scrunches into a knot toward the right. I still can’t smile. I cannot show you my bottom teeth. I can’t use a straw or my inhaler without creating a sort of shim with my thumb. My mouth doesn’t seal, so I leak liquids when I drink.

All of this is visible. When my face is still, I look more or less normal, albeit slightly tilted. But when I talk, it’s clear that something is wrong. And my smile scares children.

There are tons of medical ramifications of all of this. My vision has gotten significantly worse over the two years. It is declining at a rate of approximately 2 diopters every six months. That change is big enough to require new glasses and contact lenses twice a year. Even with my most current pair of glasses and contact lenses, I have to sit as close as 2 feet away from a television, and I have to pause the TV if they are showing something ostensibly displayed on a screen in the program (like a text on someone’s phone, or computer screen). I can’t see it unless I am only inches away

The paralysis has also affected my sinuses, which has made my mouth extremely dry. I really didn’t think about that at all until one of my bottom teeth literally broke off. I was doing nothing. It fell out into my hand. The lack of saliva has allowed decay to get to my bottom teeth—even under crowns. I will now confront removing crowns and doing restoration work—likely extracting up to 4 teeth. Next, multiple tooth implants. I’m sure I do not have to tell you the economic implications of replacing high prescription glasses, specialized contact lenses, and doing such extensive restorative dental work. Financially, this has all been overwhelming. I’m not wealthy— and so the constant unexpected and unrecoverable expense takes a toll.

I’m lucky to have family that have been supportive, and friends who very quickly stopped noticing or at least told me they stopped noticing my face. But of course, I never stopped noticing.

And that brings us full circle to my extraordinary discomfort of talking about how much this change in my face has changed my life. I suppose the thing that has been most surprising to me, is the degree to which I now see that I depended on being attractive. It’s shocking. It seems shameful that being pretty was so self-defining. It never occurred to me that one day I would no longer have a sunny smile that could instantly turn strangers into friends. And without those attributes, I have fallen back on what comes most easily to me. Being alone.

My face has also changed my confidence in every other area. Work. My home. Playing the violin. Friends. Love. Of course my looks and my intelligence are independent of each other. But the loss of confidence in my appearance has infected how I think about myself generally.

Looking at my future, it’s hard to imagine a universe in which I will no longer be alone. Until this happened to me, I had always hoped I would find a partner at some point—or several at different points. Somebody with whom I would share mutual attraction—both physical and the rest. But, that seems very much out of reach.

In June, I will be 60 years old. My peers are planning trips, and checking things off their bucket lists—considering where they want to retire. At a time in life when we really don’t have to prove anything to anyone—I am striving to feel confident enough even to put a real, current picture anywhere that it’s visible to others.

So much of this is profoundly isolating.

Coincidentally, the two most debilitating issues are my own willingness to be seen —and my own inability to see. The eye issues have only compounded. I can see through my contact lenses for a few hours at most. Then, the dryness turns them into small instruments of torture. But for the rest of the day, I wear glasses. And I only see about 60% as well in those.

Every time I go to a theater, I discover how poor my vision is. I left a production of Jesus Christ Superstar after 15 minutes. I had excellent seats. But, I couldn’t see well enough even to tell which character was male and which female—or to identify any character as distinct from any other. Maybe in the front row I could have done so.

On the rare occasions that I find myself somewhere in public with female friends of mine, I am now the invisible member of the group. That was never true before. But, the current state of my face renders me unnoticeable.

The only photographs I’ve allowed have been those taken for doctors or therapists. I stopped doing videos on my YouTube channel after doing one right after the onset of the paralysis. It was at its worst. But, when I did that one, I thought I would be back to normal in a matter of weeks. So, it was cool to keep the consistency in the channel—and I thought it would be an anomaly—contrasting with the “normal” ones. As the paralysis carried on, I decided against creating an entire back catalog of such mutated videos.

I am hanging around, IV in, waiting to get a surgery that may restore part of my smile. This is a big step, and it is the most terrifying medical procedure I have ever undertaken. They will be doing a myelectomy and neurectomy in both my chin and my neck. In other words, they will be cutting both the nerves and the muscles that cause my frown and the portion of my neck where the inappropriate muscle contractions continue. Those undesirable contractions are due to the synkinesis I described earlier. The hope is that severing those connections may free the muscles around my mouth so that I can smile and possibly move my chin. But honestly, there is at least a 50% chance that it will not help.

They are also harvesting about 6 inches of nerve from my ankle. That nerve will be attached to fibers from the working side of my facial nerve, which will then be parked deep under the flesh of my inner cheek, next to my nose. It’s possible some of those axons will trickle down and help to populate the nerves in my chin and mouth. But if they do nothing and my recovery does not improve, they will then be connected to other muscles in my face later, in subsequent surgery.

Most of this surgery is focused on helping me smile, and to restore symmetry to my lower face. It does not address other issues I’ve described. There is little known about how to restore eye-blinking. And re-enervating the forehead muscles is also little-done, so I may never raise both eyebrows. Plus, my vision will continue to decline.

I’ve had three open, spinal surgeries—the kind that require days in the hospital. This is scarier. The massive uncertainty about what outcome to expect is nerve-racking. And, recovering from the nerve harvesting in my leg may be painful and long.

I was at the pool the other day and ran into Connie, an old lady who I’ve known for many years. We only cross paths every year or so. She is well into her 90s but still swims.  She is originally from either German or Poland, and like many northern Europeans, has almost no inhibitions about what she says. One time I had gained some weight, and was self-conscious about it. When she came into the locker room that time, having not seen me in a while she said, “Oh, Amie, you have gotten so fat”. I wanted to punch her in the face .

Last week, having not seen her for a couple of years, she sat down next to me to said hello. She asked if I had had a stroke . I explained. I told her I was going to Boston for surgery this week. She said, “This is so sad. You were always very beautiful. I always remember that when I think of you”. This time I was grateful for her directness and lack of reassuring lies.

Everybody else constantly tells me how much better it Is. That it’s not noticeable. That I shouldn’t worry about it. What they don’t understand is that I am not worried about what they think. I am worried about what I think. I am worried about how to be in this world with this face; about who I am. Reassurances can’t overcome what I see when I am on Zoom and watching the strange, distorted expressions of the woman on the screen. She can’t be me.