Text: Anna Kozlova
June morning 2003. Saturday. Seven in the morning. The early sun is shining through the window. I recently woke up and am trying to brush my teeth. Standard morning routine, but not quite as usual. I cannot understand what is the matter, water flows out of my mouth, flowing down my neck. I look up and do not recognize myself - in the mirror someone's distorted mask. The left side of my face hangs motionless, not responding to my efforts. I can't purse my lips, raise an eyebrow, the corner of my mouth looks down. Convulsive attempts to revive the muscles, but no response - half of my face is as if lifeless. Strange, but I remain relatively calm - it seems to me that this is some kind of misunderstanding, because nothing hurt me, even last night I was absolutely healthy. Soon everything will pass, you just need to rest and go to the doctor.
Several years later, I learned that my illness is called Bell's palsy in English literature from Wikipedia. In Russia, the terms "neuritis of the facial nerve" and "paresis of the facial nerve" are more common. The reasons why it develops are still unknown. Diabetes mellitus is mentioned among the risk factors, and a number of authors associate this disease with the Epstein-Barr virus. But you can simply, without having any predisposition, once fall asleep as a healthy person, and wake up with a motionless face. This happens to an average of four out of ten thousand people, so it is believed that paresis of the facial nerve is a common disease. Fun fact: Although it affects men and women equally often, pregnant women are three times more likely to experience Bell's palsy. There is a version that this may be due to tissue edema, which is not uncommon during pregnancy.
On Saturday summer morning, the city clinic is deserted. Having let the patient with renal colic pass forward, I go into the office of the therapist on duty and sit down on a chair covered with oilcloth. "What happened?" - in spite of me, a middle-aged doctor in a white coat draped over his shoulders asks. Looking up, the doctor buries himself in my huge belly - in a month I will give birth. I am 22 years old, I am studying at the institute in my fifth year, I plan to live happily ever after, give birth to a daughter and never get sick. “My muscles of the left half of my face do not move,” I say with difficulty, trying to adapt to the new conditions. The voice sounds strange. It's hard to talk. "Where did you get this?" - I begin to feel a familiar condescending attitude towards a pregnant woman: worries about the child, does not work, so he goes to the doctors. “I can't smile,” I answer. “The main thing is not to worry,” the therapist coos in a soothing voice. "Boil the burdock root, squeeze it well and apply compresses twice a day." I try to say something in response, I'm not good at it, and then the doctor's gaze suddenly becomes tense: “My God! Yes, you have … Urgently see a neurologist - keep the referral!"
I go down to the subway - a neurologist works on Saturday only in one clinic in the entire district, and you still need to get to it. A regular subway ride doesn't seem easy anymore. The sound of an approaching train is unbearable, painfully loud, you have to hold your left ear with your hand. In addition to the facial muscles, Bell's palsy also affects hearing: an increased sensitivity to sounds develops - hyperacusis. This is because the facial nerve feeds the middle ear. Also, taste often disappears.
The gray-haired neurologist is kind to me, but confused. He doesn't know how to treat pregnant women. “You can't do anything,” he says slowly, giving himself time to think. - You know? We will do acupuncture, and you will also go to magnetotherapy every day. " He is kind to me and, sticking needles into the corner of my mouth, he almost cries and calls me "my sword swallower."“When will you give birth? he asks. - The most important thing now is not to harm the main one. Do you understand what I mean? " I am lying on a massage table, needles are sticking out of my face, and I, of course, understand that all the treatments prescribed for me do not differ in their possible therapeutic effect from a placebo.
On the way home, I remember not having breakfast and buy myself a muesli bar. I walk to the subway and try to chew on an absolutely tasteless sticky mass. Nothing works. I understand that eating food without feeling the taste is almost impossible.
My daughter has never seen my real face. By the time she was born, the muscles had not begun to move
Usually, with paralysis of the facial nerve, a course of injections of steroid hormones - prednisone or corticosteroids is prescribed. If hormone therapy is started in the first three days, the chances of successful restoration of facial nerve function increase. This is due to their ability to suppress inflammation. Of course, hormones are not prescribed for pregnant women. There have also been attempts to use antiviral drugs, but clinical trials have shown them to be ineffective. All other means, including massage and physiotherapy, unfortunately, have no proven effectiveness. This means that maybe they will somehow help, but no one knows for sure.
In most cases, paresis of the facial nerve completely goes away on its own, but there are 20% of people in whom recovery does not occur at all or is incomplete. As a rule, the earlier it started, the better the result should be expected. If there are no changes within six months, then hope is lost. At the same time, there are practically no ways to somehow influence the course of events - basically, you just need to wait.
My daughter was born a month after that morning. She has never seen my real face. By the time she was born, the muscles had not begun to move. Only after a few months, small movements gradually began to return: I could smile a little. It was not a smile, but rather a hint of it. It's pretty hard not to smile at your child. In a calm state, the face ceased to be so defiantly asymmetrical: the corner of the lips raised, returning to a position close to the "painful" one, the face ceased to have such a mournful look.
Nevertheless, I could no longer demonstrate exactly the emotions that I experienced. Instead, there was a complete mess of movements on his face, as if someone had pulled out random ones from a huge heap of nerve wires and swapped them. I wanted to smile, but in addition to smiling, my eyes also closed, and there was a ringing in my left ear. I tried to chew, and tears rolled from my eyes. She closed her eyes - her lips contorted in a grimace of pain. The muscles were moving not that completely involuntarily, but not at all in the way I wanted them to.
If full recovery does not occur spontaneously within two to three weeks, then the muscles gradually "forget" how to move correctly and weaken. Synkinesis occurs - friendly movements: the nerves begin to innervate not only those muscles that should, but also "foreign" ones that perform completely different functions. A number of pathological conditions arise, which often have beautiful names: "crocodile tears syndrome" appears when tears flow from the eyes while eating, "eyelash syndrome" - the inability to close the eyes.
My daughter was one year old, and we rested in the Crimea, lived in tents near Koktebel. Once we were walking along the embankment, and the summer sun was shining in my eyes, and my daughter was sitting behind her in a special backpack and dangling her legs. Some compassionate woman passing by seemed to notice that my eyes were watering from the bright sun: “Are you crying? What's wrong with you?" “Thank you, I'm fine, I'm not crying,” I tried to smile to finally dispel doubts.But her face became even more worried: "Daughter, what happened ?!" I barely managed to convince a passerby that everything was fine with me, which is not surprising - instead of a smile on my face, an expression of pain and some kind of crooked grin, and tears are pouring more and more. Several such cases - and somehow instinctively you begin to avoid communication, withdrawing into yourself deeper and deeper.
Facial expressions are a huge part of interpersonal communication. The face reflects our emotions, and if it does it wrong, then the original emotions themselves are distorted along the feedback loop. In other words, if you cannot smile, then it becomes difficult for you to experience joy. Vicious circle. Self-dissatisfaction builds up and can lead to depression. So, in general, a small physical problem can develop into a severe and difficult to treat disease.
Over time, I deliberately began to limit the expression of my emotions - still it was not possible to display what I feel. I got into the habit of turning half-turned to the camera lens: when two halves of the face are not visible at the same time, the asymmetry is not so noticeable. I was used to using little makeup: I didn't want to draw too much attention to my features. I got used to not smiling when they look at me (I know that my smile does not look the way I want it), and automatically cover part of my face with my hand if I do it. People who do not know me personally and only see me in photographs often ask why I am always so serious. Well, I only succeed in a very light half-smile. Yes, like the Mona Lisa. By the way, according to one version, the model who posed for Leonardo da Vinci had a paresis of the facial nerve - hence such an expression of mystery on her face.
Over time, I deliberately began to limit the expression of my emotions - still it was not possible to display what I feel
The rescue of a drowning person is the work of the drowning person himself. Then, in 2003, no one told me that there were ways to reduce the severity of asymmetry, to compensate for unnecessary movements. No one will offer you such treatment in public clinics - it is considered a luxury, a fight against cosmetic defects. One of these methods is Botox injections in a complex scheme. Botox has an amazing history; it came to cosmetology from neurology. The drug weakens or blocks "unnecessary" movements, and facial expressions in a patient with facial nerve paresis become more symmetrical. There are very few neurologists who know this technique, but they certainly exist in Moscow. The effect of one course of injections lasts about six months. To maintain this state, courses must be repeated regularly. Several years ago I tried Botox on myself. Others say that the effect was noticeable, but the price stopped me from regular use. I decided to look for other methods.
Another hope is neuromuscular rehabilitation. According to the generally accepted opinion, synkinesis is forever, and if they have already formed, it is impossible to get rid of them. But some experts believe that the formed pathological connections between nerves and muscles are not irreversible and can be reprogrammed. They view synkinesis as bad habits, like walking or sitting in an uneven posture. You can't just cancel it, but you can retrain. The process is lengthy, takes years and requires a lot of patient work. Unfortunately, there are very few clinics in the world that are engaged in such restoration.
I have long been accustomed to my condition and even see a number of advantages in it. For example, I do not have any wrinkles on my forehead because I am physically unable to raise my eyebrows. Cosmetic Botox injections will definitely not be useful to me - you can say that I got Botox for free and for life. You can take pictures from different angles, and the faces in these photos will be different. In healthy people, faces are also asymmetrical, but this is not so pronounced.But I still plan to attend neuromuscular reprogramming sessions and am now looking for a doctor and clinic that will accept me. I really want to learn again not to be afraid to smile broadly.
Photos: personal archive