Why me? What did I do to deserve Bell's palsy?

I make things work. I do the right thing. I solve problems. So what makes me one of the 25 out of 100,000 who get this disease?

Published October 19, 2007 10:50AM (EDT)


I'm a 29-year-old professional. I have a happy, loving relationship, nice home, moderately dysfunctional but manageable family and no real money worries. After some time getting qualified in my career, getting out of a bad job and a bad relationship, clearing student debt, and trying to get pregnant, it seemed that things were working out. Everything else had been resolved and two weeks ago I found out I was pregnant.

When something is wrong, I like to fix it. I work to make it right. I struggled through college, I changed jobs, I learned everything about getting pregnant and applied it. Now it seems life has, in the shape of illness, thrown me a curveball that I can't, through knowledge or effort, make right.

Last Friday I had an extremely stressful day at work. In short, I was told my advice was nonsense when I knew it wasn't, and those up the chain from me agreed. But it made me angry. In the two weeks since I found out I was pregnant I had been full of energy, smiling at everyone, so happy at my good fortune. I felt I could handle anything. On Monday morning I woke up and I couldn't move the right-hand side of my face. I went to the doctor and was diagnosed with Bell's palsy. In case you're not familiar with it, it is caused by an injury to the facial nerve that causes paralysis on one side of your face. They are not sure what causes it but suspect stress can be a factor. Apparently you are 3.3 times more likely to get it when you are pregnant, but it usually doesn't occur until the third trimester. My baby (according to the books) is not even the size of a lentil, and I have it. The doctor told me to go home and rest up and take painkillers and that there is no cure, but it'll go away eventually, probably.

It has now progressed and I look like I've had some awful botched Botox -- my right eye won't close and is watering constantly; my mouth is droopy and contorts horribly when I speak. I am in constant pain behind my ear and can't take very strong painkillers because I'm pregnant. I am something of a prisoner in my own home, scaring delivery men. I can't whistle for my dog. My dad joked that at least it wasn't the 16th century or I'd be burned at the stake as a witch.

What happened, Cary? Why? I am the type of person who likes to think things happen for a reason. Twenty-five out of 100,000 people get Bell's palsy. These are incredible odds. Why me? I was reduced to huge, billowing self-indulgent sobs on the telephone to my partner this morning after trying to do my makeup and realizing that I had never once until now looked in the mirror and worried about what I saw. Before this I was by no means hugely eye-catching, but I was never unattractive. I was fortunate.

There is a 10 percent chance that I won't recover. Before, odds like that would have seemed easily defeatable. Now that I'm 25 in 100,000, I'm not sure. I'm not sure that my partner will not cheat -- after all, one in five (or something) men whose wives are pregnant does, right? I am a (very) lapsed Catholic, and I worry that everything bad that happens is retribution. I have spent the past four years wondering what I did to deserve my mum dying on my 25th birthday. Why did this happen? Is the world that arbitrary? After all, every day people get cancer and trains crash and bombs go off and kids go missing. But nothing like this has ever happened to me. My mum was a fall-down drunk, but that was fine because it made me do a lot of searching and find my way. My dad was a philanderer, but it taught me a lot (eventually) about relationships and what I want from them.

But where is the silver lining in facial paralysis?!

I have a theory that this happened because I have always wanted to write. Yes, that old chestnut. I have a job that (my excuse is) makes me too exhausted to do so. But I was relishing the thought of future maternity leave because I thought I might (initially) have some days free to write. I now have this. Talk about "Be careful what you wish for"! Autumn is my favorite time of year. I can walk the dog in the park and spend hours writing because for the moment I'm in too much pain to concentrate properly at work and too contorted not to scare the clients. And I can still pay the mortgage. Do you think this is it? Does everything happen for a reason, and if so, do you think this is perhaps the reason for this?

My other problem is that when I do write, it overtakes me. I get sucked into it and it's like nothing else exists. I forget to eat or sit up straight and clean the house and hours pass and I don't care -- but when I am lodged out of it by the doorbell or the phone, I resent the -- probably wasted -- time I have spent on it. It is this that makes me hesitate. This is my last barrier. But how do I deal with this when I'm ill and really should be relaxing and taking care of myself?

Contorted and Confused

Dear Contorted,

You know, I started in yesterday on a theme of how we deal with losses we cannot control or predict, what cultural beliefs we bring to them, and how we find the boundary between phenomena and belief. I said that I wanted to continue in this vein today with your letter. Then I got some personal news that intensified and focused these thoughts -- more news of our transitory nature. I lit a candle and stared into the flame and said some more goodbyes.

So welcome to the world of things beyond our control. This world contains the universe of stars and the sun, the mysteries of electricity, gravity, particle physics, medicine and the phone company. It includes breast cancer, cancer of the pancreas, brain tumors, alcoholism, and why Web Van had to go away. I will never really know why Web Van had to go away, or why my father-in-law died when he did, or why my uncle died when he did. Pancreatic cancer works quickly. Colon cancer works more slowly. It is said that Web Van needed a better business plan.

This is the world that I live in and I invite you to live in it, too: It is the world of things beyond our control. Sometimes there does seem to be a reason. I can see now, for instance, why "Seinfeld" ended when it did, because now every show seems to be perfect. Maybe "Seinfeld" was about to become boring, cheap and repetitive, and we would now be asking not why it ended so soon but why it endured so long. So it is possible to imagine that things do happen for a reason, or to find a reason in them.

But this is the realm of poetry, faith and the irrational. Science can give you an answer, too, but it will not necessarily take into account your feelings or hopes. If 25 out of 100,000 people must get Bell's palsy, then 25 people must be found. You were found. Why were you found? You were found because you were available. It sounds awfully cold put like that, doesn't it? So let's say this: You were found because you, like every tree and twig and bucket, are part of the universe.

Although you have consciousness, which is a rare and beautiful thing, you are also a rock, a tree, the sun, the moon, the soil: You are part of the natural world. You are conscious of yourself but also an animal; you are not above the need to eat and breathe; you are not immune to being eaten by a tiger, consumed by the voracious universe around you and its predators both animal and other; you are part of their air and part of their water. Your body is part of the ocean. The ocean is full of sharks. Your body is part of civilization and civilization is full of poison and disease and death. You are part of all this. So am I. We go through the streets knowing this at some dim level, and when we look into the eyes of a stranger sometimes that knowledge seems to pass between us: Yes, you and I, stranger, we are both going to die one way or another. Which of us will go first?

We operate in a world of mystery. So what do we do about it? We seek answers. But how do we seek those answers? We invent ways of conceptualizing the mystery: religion and comic books, philosophy and sports, meditation and science and politics: These are structures we invent. But we are also just the stones travelers step on in their journey up the mountain; we are just the myriad unseen animals in the night making noise to frighten the traveler. We are just part of this enormous mystery.

We have the ability to fix things, but it rests on the work of millions before us. We are not independently capable of fixing anything. We are dependent upon the structures of civilization. The readiness of the telephone, our engines and our clocks, our vitamins and our socks, we depend upon them. We are utterly dependent not only upon nature but upon a human world of commerce, manufacturing and services. We do not control any of this.

Try going away from civilization. See how dependent you are.

Your ability to fix things is both an illusion and a gift. Things have turned out well for you so far. You have done your part and you have met with favor; people have given you what you asked for and worked for and planned for. That is nice. But it is a gift. It does not mean that you have special powers or that you are immune to the ravages of disease and insurrection. Revolutions take place and what we have earned is taken from us. A friend of mine who grew up in Cuba, when the Castro people came to her house, they took half of everything: Half this desk, half this chair, half this table, with a furious vengeance on her social class. Burglaries and crimes happen and our loved ones are stripped bare of what they have, or killed or defiled and insulted and maimed. The ones who perpetrate these things, they are part of our world, too. We are all in this together, robbing each other and hiding from each other and trying to help each other through the night.

These facts are sometimes unbearable. People turn to Greek tragedy, to poetry and song, to gardening and long trips on cheap buses across the country, hoping to find God in the desert or a good candy bar at a roadside fruit stand. The facts are unbearable and all we can stand to do is keep walking sometimes, with a heavy pack, not knowing where we are going but finding mercy in the walking. Sometimes you just have to sit in a bar from sunup to sundown drinking gin and orange juice. It's why we do the crazy things we do: Because there is so much we cannot bear and cannot understand.

So all I can do is join you in this. If I could sit with you and hold your hand, I would. We are in this together. Maybe someone else will sit with you and hold your hand. But this is another annoying thing: People are so busy with their Verizon accounts and their e-commerce Web sites and their court dates and parole, their arugula pricing and hydrocarbon footprints, their applications to preschools, their jury summonses. Everyone is busy with the sun and the weather, disturbances in the barometer, questions on their e-mail. Meanwhile others are struck down unaccountably in the night. We walk on, asking, "Can you hear me now?"

All I know is we are all in this together. To the forces of disease, one body is as good as another. What a terrible thing to imagine: that a force out there so potent is also so blind and casual! Like a teenager behind the jewelry counter, it doesn't really notice you. It just wants your money, or your cells.

And so we live with this, and construct whatever notion of order we can.

We know through science that fusion happens in the center of the sun. We believe this to be true. We think many forms of cancer will be cured or arrested soon. But why one person gets this and another person gets that, we don't really know, do we?

All we have is a little control over how we respond. So we say, OK, this is what this means: It means I must go out to a large open place and begin a sculpture. It means I must live in my immediate emotions and stop fucking around. It means I must start writing.

That's the only sense in which tragedy is a gift: It points us to the central things. So I invite you to sit on a bench in a park and hold someone's hand, and say out loud, I must live in my immediate emotions. I have a sculpture to do. I have some writing to do. I have something important to finish before the next calamity strikes.

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