I had my first real meltdown at the rehab center a couple weeks after the accident. It was early evening and Greg was sitting with me as I struggled to eat my dinner, some kind of tuna casserole that had been chopped up to accommodate my facial paralysis and milk with a straw for the same, and we were watching whatever horrible reality tv show my roommate had chosen at the loudest possible volume when I was absolutely overcome with grief. I started sobbing and barely choked out “what if I never smile again?” as Greg looked heartbroken and a little bewildered and from behind her curtain my elderly roommate quietly asked if I was ok. I didn’t let it last long. “NO NO NO I can’t do this. I need to eat. I need to heal.”
Recovery has been like a triage of priorities. For the first couple weeks my facial paralysis didn’t rate very high. The pain in the rest of my body was beyond anything I’ve ever experienced, I was unable to move, I couldn’t sit up, and every day I was put through some horrific test or procedure that left me physically spent and emotionally numb. But as my body started to heal, my facial paralysis took center stage as the most traumatic part of this whole experience.
Difficulty with eating was the first thing I noticed. You have no idea how many muscles you have inside your mouth until half of them are gone. I could only chew on the right side, and if any food ever made it to the left side it wasn’t just inconvenient it was dangerous, since there weren’t any functional muscles there to keep it from sliding right down my throat. The hospital never did get it. I begged them to put me on a liquid diet for days and they kept sending up food I couldn’t chew, and I couldn’t even cut it up because my clavicle had gotten so floppy and painful that I could barely move my left arm. They kept giving me food that was dangerously high in sugars too, even though I was on medication that made my blood sugar spike, but that’s a whole other story. I think I finally got soup on my last day in the hospital. The food at the rehab center was much better and they were really mindful of my disability. It was sort of a fun game to try to figure out what my chopped up mash had been before being chopped up and mashed. But it was always healthy and I was physically able to eat it. You really learn to appreciate the little things like that.
The hospital and the rehab center both had deplorable hygiene standards, which is also another story, but it meant it took me awhile to figure out how much my paralysis affected brushing my teeth. The first time I tried it I suddenly realized I couldn’t swish water around in my mouth, and I couldn’t spit. And I couldn’t apply lip balm the way we’re all used to. I discovered that I couldn’t drink out of a regular glass on one of my first nights in the rehab center, when I took a sip of water in the glass that came with dinner and didn’t expect it to dribble right down my chin. I became fanatical about having straws by my bedside at all times after that.
I was really lucky to get an appointment with one of the top neurotologists in the country, but he told us we had already missed the optimal window for surgical intervention so the best course of action was steroids and watchful waiting. He confirmed what our research had told us. The chances and length of recovery depend on the type of fracture, and whether the nerve was severed or compressed. I had a fracture that was apparently a little bit of both the usual types, and we were pretty sure my nerve was just compressed but there was no way to be certain. Even knowing that, he said recovery is not guaranteed because nerves are dicks and completely unpredictable and if I do recover it will take 6 months to a year and I shouldn’t expect to see any recovery at all for at least two months.
I started to get what I call “twingles” in my face at about a month and a half. Friends said my face was starting to look livelier, which was a sign that the underlying muscles were making connections with the nerve. My neurotologist sent me for an EMG, which is a brutal test where they stick needles in your muscles and move them all around to listen to their responsiveness. I wouldn’t get the results back for another month, and by then they wouldn’t matter. The day after my EMG I saw it. My cheek muscle moved. Just barely, almost imperceptibly, and you had to be in the right light to see it, but it was moving for sure. It seems like my smile recovered fairly quickly since then, although the muscles still aren’t connected properly so my smile sortof drags down at the edge a bit. I’m just so happy to be able to smile that I couldn’t care less. I don’t even care so much about my crooked teeth that I used to be embarrassed by. I realize now what a gift it is to be able to smile at all.
The rest of my face is taking a long time to recover and it’s not making connections as quickly as my smile did. I have difficulty talking, especially towards the end of very social days when my muscles tire. I still can’t furrow or raise my eyebrow. I can’t snarl or flare my nostril. I find all of that rather amusing and appropriate actually, that I can smile but I can’t look angry or sad. I can chew on my left side now, but I still have to be mindful of taking small bites and taking my time. The muscles in my mouth and lips on the left side are still weak so I can’t always keep my mouth closed when I chew. I feel a little like a dog when I eat sometimes, in the best possible way.
I have always had faith that I would recover. I remember telling the doctors in the first few days that when I laid down for awhile and then propped myself up my face felt a little bit lighter. They brushed it off as unrelated and psychosomatic in nature, but I think there was something to it. I did my research on scientific studies and alternative therapies alike, and as soon as I got home I started taking cod liver oil and vitamin b12 every day. And I watched for signs of recovery and rejoiced in every twingle. But at the same time I prepared myself for the worst. I reminded myself how lucky I am to be alive, and that I could live with a half-paralyzed face and I’d be just fine. At each stage of recovery I do the same. If it all stopped right now, I would be alright. I haven’t really been able to explain to some folks just how traumatic and devastating the whole thing has been, and how acceptance with each stage of recovery is a huge part of learning to be ok. I know the folks who say “you’re going to be just fine” or “you’re going to recover completely” mean well, and it’s hard to explain why it’s so aggravating and offensive. I don’t get to dismiss it all so easily, and I will never recover completely, but I know I’m going to be fine. I’m going to be fine even if my face stops recovering right now.
The paralysis also took away some of my taste sensation. Things tasted more bland to me for awhile, and it seemed like my sense of sweetness was most affected, and a bit of savory too. I’ve noticed things starting to taste better and more normal as I recover. I’m able to enjoy wine again, out of a regular glass, and things like cake and cookies are much more appetizing now. Nerves do funny things as they recover, and for weeks now as my ability to taste comes back I’ve had a constant sensation of sweetness. Not just when I eat, it’s there all the time. It’s amazing really. Think about the possible alternatives. It could be salty, bitter, or sour, but it’s not. Recovery is sweet.