One morning, teacher Marvin Grubb woke up with a sore neck. Hours later, the right side of his face dropped and he couldn’t close one eye or use the right side of his mouth. He rushed to the hospital, fearing that he would have a stroke or stroke, but there, after the tests, he was diagnosed with Bell’s palsy, i.e. spontaneous paralysis of the facial nerve.
– I couldn’t drink, I had a hard time eating, and when I went to sleep I had to put a plaster on my eyelid. It was just a cold winter and my eyeball was literally freezing. I watched my son play soccer on the field and the cold wind blew right in my eye because I lost my blink reflex. Man does not realize the importance of blinking until he loses this ability.
Facial nerve paralysis – the weakening of the facial muscles caused by a nerve injury – is a serious physical problem in itself, but even more difficult is its emotional aspect. The inability to express with facial expressions positive emotions such as joy, love and kindness, or the inability to greet a friend or loved one with a joyful smile can overwhelm a person.
Grubb, an decorated Gulf War veteran, has learned to live with a new face, but others have tried unsuccessfully to come to terms with this visual hell. Friends terrified by the deformity stopped talking to him, strangers unable to read mimic cues stared at him in horror, even his girlfriend calls the twisted profile his mean side.
For two months he learned to speak without holding his face down, and I still have a hard time finding words to describe the effects of nerve palsy on his confidence and self-esteem. “I have nowhere to hide,” he says. – Everyone can see it on my face.
There are at least 30 known causes of facial paralysis, ranging from tumor to cranial trauma. Bell’s palsy is the most common, when the inflammation of the inner ear causes pressure on the facial nerve, leading to paralysis of the face from the affected side. This condition can affect anyone at any time.
However, Kelly Lynskey was born with nerve damage before and had never seen her normal smile. She says that she used to place a mirror on her face in such a way that it reflected the good half, so she could imagine what her full smile would look like. Like many affected people, Lynskey has complexes and is ashamed of the way her lips lift to one side when she tries to smile. Avoid taking pictures whenever possible.
She explains that although she is generally a happy person despite her specific appearance, strangers cannot read her expressions. “Because I grew up like this, I am aware of my paralysis every day,” he says. – That’s why when I meet someone new, I try very hard to be the talkative life of the party. I try to distract my attention from my face with jokes. It hurts when I hear some comments about my appearance; I prefer people to laugh at me, not me.
Nevertheless, her years of teasing by her classmates took its toll, and at the age of 15 she decided to undergo surgery to restore her face’s ability to move. Unfortunately, the procedure involving a muscle and nerve transplant from another area of her body did not give her her dream smile. After another unsuccessful attempt, the doctors spread their hands. From then on, she had to deal with the disease on her own. She felt abandoned. Only with the help of the Courage to Smile online support group did she find enough self-determination to look for a surgical solution again.
Feeling that the healthcare system has failed, Lynskey is sadly not alone. The main problem remains the widespread ignorance of GPs about the disease and its treatment. It has been shown that physiotherapy and even botox can significantly improve the patient’s quality of life, but they are not used under general insurance, because these methods are considered to be cosmetic procedures.
A study conducted last year by the British Medical Journal found that nearly half of patients with facial paralysis do not receive the recommended treatments, although these could prevent irreversible changes. The researchers analyzed how people diagnosed with Bell’s palsy were treated by their GPs between 2001 and 2012. It turned out that despite clear evidence that the steroid prednisolone significantly improves the chances of a full recovery, as much as 44 percent. the patients were not treated at all.
Dr. Charles Nduka, founder of the Facial Palsy UK foundation supporting people with this condition, says faster access to treatment is needed to minimize the risk of complications. Specialist centers should also be established that apply a multidisciplinary approach to the entire spectrum of symptoms. One of the factors that make it difficult to learn more about facial nerve palsy is that it is a slowly evolving condition, so any research on treatment and prevention takes a long time.
Nevertheless, progress, however small it may be, can change a person’s life. Emma Barrett lost the ability to move the right side of her face at the age of 18 following surgery to remove a tumor on the auditory nerve. After ten years of more surgery, he finally regains control of his face. Getting used to that return smile was almost as difficult as losing it. “I’ve spent most of my life without him, so smiling today makes me feel weird,” he admits.
– I think of myself before I was 18 and after that as two different people. In fact, I only became myself after being paralyzed. It made me who I am today: a tough, strong and sincere woman. It gave me courage and strength.
Matthew Jenkins