Ruthie (electrablue) wrote in smile_interuptd,

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My story.

This is my own personal experience with Bell's Palsy. It's not very inspiring or hopeful - in fact, it's quite depressing and it still upsets me to this day. But this is a support group, and support groups are here to listen to people's problems, so I'm going to jump right in and get this off my chest.

I was raised in a small Southeastern Missouri town called Sikeston, and Bell's Palsy hit me when I was fifteen years old. One Friday in school, I was experiencing horrible pain in my right ear and an awful tastelessness in my mouth during lunch-time. I called my mother, and she checked me out of school and took me to a doctor in the clinic she worked at. He barely looked me over at all, prescribed me some standard-issue ear drops for pain, and sent me home to rest.

The next day - Saturday, October 30th, 1999 - I was taking a noon-time nap and woke up with a curious feeling on the right side of my face. It was a little numb and swollen and the left side felt all twisted and awkward. I looked in the bathroom mirror and was surprised to find that the whole right side would not move at all. I went to my mother and said, very calmly, "Something is wrong with my face."

It was a Saturday of course, and her clinic was closed (which meant we would have to pay money to go see a doctor at the hospital). So instead of taking me to the emergency room, she swung me by the home of another doctor, an older man and a family friend. He told me I had Bell's Palsy and didn't offer to prescribe me anything - just said, plainly, "Your face is paralyzed, and you'll be fine in a month."

Strangely enough, even though I had woken up with what felt like a big awkward metal plate sticking to my head, I wasn't very scared or worried. My mother and the older doctor were treating this unknown and sudden paralysis with almost certain calm. "You'll clear up in a month or so," the older doctor had said, and why wouldn't I have not believed him? I mean, he went to medical school! He knew what he was talking about, right?

Well, I spent the rest of that day in awkwardness and the Sunday after it as well. Sunday was Halloween, and I felt like I had my own "mask" to wear. I was contorted and twisted-looking, and ashamed to show my face to anyone, even good friends. My eye was kind of lazy and it wouldn't close right, and I kept tearing all over myself and having to wipe it away with gobs of Kleenex. I was unable to eat or drink properly, because my mouth didn't work right, and drooled all over myself at the most inopportune moments. I also couldn't pronounce some words, which made communication very difficult and embarrassing for me.

The day after - my first day back at school - was very, very upsetting. Looking back on it, I think I should have been allowed by my mother to spend a few days at home, given that I was very recently paralyzed and completely disoriented and "out of my element," drooling all over myself and not being able to speak properly. I'll never understand why she sent me to school that day with my ugly little head held high and my spit dripping down one side of my mouth.

I'm sure all of us know how cruel high-school kids can be, because that's where I was going that day and that's the kind of treatment I got. People came up to me and asked if I'd had a stroke or had been physically beaten. I burned myself on hot soup at lunch, letting it dribble out of my mouth unattractively, and my lunch table group acted embarrassed to have this Quasimodo lookalike slob sitting with them. The final straw was when, in my last hour history class, my best school friend mocked my facial movements in front of an entire class full of kids who hated me anyway.

I was never a "conventionally attractive" girl at school - I was tomboyish with short hair, I wore jeans and t-shirts, and I had (still have, actually) a very plump figure, which provoked a lot of "fat cow" comments with the more immature crowd. I'll admit, I was a little not happy with my general appearance then but I wasn't going to kill myself over it.

But to see my own friends treating me this way and making fun of me was too much to handle. I spent the rest of the day in tears and never told my mother about how people treated me.

Needless to say, I grew very bitter about my condition very early on.

A few days later (LATER!!!) I went back to the same doctor who had prescribed me ear drops. "You have Bell's Palsy," he said, and I was like, "No shit." Like the older doctor I had seen the day of the onset, he didn't prescribe me anything - instead, he told me, "You'll be fine in about 4 to 6 weeks."

That statement will resound in my head forever as one of the biggest lies anyone had ever told me.

Four to six weeks turned into four to six months. During all this time I never saw one more doctor, never went to a neurologist even, and I never was prescribed any treatment or medicine. I had done a lot of research on my condition and learned that prednisone or a herpes medicine, like valtrex or acyclovir, was often prescribed at the very beginning to help stunt symptoms. I was astonished that none of my doctors had done any of this to me, but I was afraid to tell them because I didn't want to seem like I knew more than they did - like I said, they went to medical school, so they were obviously doing what they thought was the best for me, right?

Wrong. They could have done something for me, but they never even tried. I only saw one doctor officially and only two visits at that, where he barely looked at me and said, "Take some aspirin for the pain" or something to that effect. I was upset and angry that my condition wasn't taken more seriously by the doctors and by my mom.

Sometimes I blame myself for this, but I was only fifteen years old and even though I was a very mature fifteen, I was still a child, and children can't be held responsible for their medical treatment. It was my mother's job to take me to see a doctor when I wasn't improving, and she never did. I even had an invitation to go see a chiropractor who wanted to see if he could do any help, but my mother said, "All chiropractors are quacks" and never checked it out for me. We just trusted the schmucks we went to at the very beginning and plodded away happily - or at least, she did.

I would cry nightly about it, because of my nerve pain and my helplessness in eating and drinking, and my eye constantly being in tears when I woke up because it wouldn't close. I cried because all my old school friends shied away from me because they were embarrassed to be seen with me. And I cried because nobody seemed to care about what I was going through, not even doctors who were supposed to help people with their problems.

One night, I was crying in front of my mother, and she yelled at me and said I should stop crying, because this was reality and I was just going to have to deal with it.

It was not a very good point in my life.

Thankfully, after that depressing and painful four to six months, I was finally began to see some minimal improvement in my condition. My mouth got more firm and I was able to keep food in and smile a little, and my right eyebrow was moving up and down, making me a little less expressionless. But I still dealt with nerve pain and the loss of movement with my eye, and I began to lose hearing in my ear. And the looks from passersby that said "What the hell is wrong with her?" didn't stop either.

Now here comes the happily ironic part of the story.

Picture it - June 22, 2000. My little sister's thirteenth birthday. She wakes up that morning and what does she have? That's right everyone, BELL'S PALSY. She's got it on the left side of her face, rendering her completely paralyzed and disfigured.

And do you know what my mother did for her? She took her to a doctor right away and had her prescribed a week's worth of doses of acyclovir and prednisone. My sister has it for two hours and she goes to the doctor immediately, but I have it for eight months and get no treatment at all? Does anyone see anything wrong with this picture?

Since it was summer and we were out of school, my sister didn't really have to have any contact with the outside world. She was spared the insults and taunts that I received, and given the best medical care possible. Everyone who she did see felt sorry for her and wanted to help in some way. One month later, she was completely rehabilitated with no residual at all.

From then on, my mother referred to me as "the Guinea Pig," because if I hadn't had Bell's Palsy before my sister did, Mom wouldn't have known what it was and what to do about it. So apparently, my being disfigured and in pain for months helped to save my younger and prettier sister from the same fate. Boy, I felt useful. Actually, I felt pretty damned used.

I continued being markedly (albeit privately) depressed about my condition (and my sister's preferential treatment) and had started growing my hair out to cover up my face in public. It was the beginning of something good for me, because I'd always kept my hair short and boyish looking, and having long hair made me feel somewhat more pretty, even though I still had the face of a carnival freak.

About a year and a half later after my initial onset, after I had only improved around 40 percent, my mother one day decided, "Gee, maybe I really ought to get her to see a doctor or something!" So she took me to our town's neurologist and he looked me over. He seemed unnerved that nobody had prescribed me anything or referred me to him, but said nothing. Instead, he made me an appointment to go get an MRI at the hospital, in case I had a lesion or something.

But before my MRI was scheduled, I was set to take a winter vacation on my very own to Boston to meet my best internet friend Michele. Michele was quite a bit older than me and had been my friend for a year and a half. She knew about my condition, but had never seen me before I was stricken with BP. I visited her and she told me after a couple of days of my being there that even though she knew it was physically hard for me and that I needed support, she didn't even notice my palsy "on the outside," and that I was a very beautiful girl.

I was touched, because nobody had said that to me since I was diagnosed, not even anyone in my own family. I went home with a newfound confidence, and even after my MRI showed that I didn't have anything treatable and my neurologist basically said "You're just going to have to be patient about regeneration," I felt pretty good about myself. I'd had a wonderful time in Boston and I felt, like Michele said, pretty beautiful.

I continued the rest of that school year with a better feeling about myself, even though I was still treated differently and was prone to severe bouts of sadness and unhappiness. But I had been making gradual improvement and I was up to about 50% recovery by that summer, and had something great to look forward to - another trip to Boston to see Michele in July.

During my visit, after two years of close friendship, Michele and I grew much closer and decided to become a couple. Realizing that I was important and attracted to someone who loved and cared about me really raised my spirits. While I was there, Michele showed me the perks of looking feminine - Michele is a very rubenesque, feminine beauty with a figure and complexion similar to mine. Since I had last seen her, my hair had grown out much longer and kind of "clashed" with my jeans and t-shirts and sneakers, and to tell you the truth, I was ready for a change in my appearance - I no longer wanted to appear how the tomboy "fat girl" with the ugly face was expected to look.

We went shopping together and got our nails done, and once I started dressing more "like a girl," I felt very pretty on the outside. Unfortunately, I had to go home to start my senior year of high school, but Michele and I continued our relationship over the phone and online. When I made it back people were somewhat in shock, because I'm sure they thought I was strange for doing a complete 180 looks-wise, it was what I needed to believe I was an attractive person. I spent my senior year of high school feeling better about myself.

Now I'm currently living with Michele, who is my fiancèe, and we're planning on getting married very soon. She is very supportive of my condition and never fails to tell me how beautiful I am when I need to hear it. More importantly, she never fails to offer help to get to a doctor or see someone when the residual effects from my condition are causing me pain or strife.

As of today, I've been a sufferer of Bell's Palsy for about three and a half years. My mobility has been recovered about 75%, but I haven't seen any more recovery for several months now. I'm still dealing with nerve pain, hearing loss, and a crooked little smile on a daily basis. Most people I meet say they don't notice my disfigurement, but I do - all the time. It's hard waking up one day with part of you missing and no matter how much of it you get back, it's never the same.

I'm afraid that I'm not ever going to recover completely, and no matter how good I may feel about myself one day or another, I'm still incredibly angry that this happened to me and that I wasn't treated with the proper care that needs to be given to this enigmatic and particularly damaging disease. I'm still angry with my mother for letting my condition go, yet giving my sister the best treatment available when it happened to her.

I've never told her any of this, of course, but I fear every day that I'm going to lose mobility again and be permanently paralyzed even more than I am now, and that's not fair. I shouldn't have to live my life terrified of every little headache or earache. I shouldn't have to be in constant pain or constant worry that someone is going to laugh at me or make fun of me.

Spending each day unsure of what you're going to wake up with - or without - the next morning is trying and upsetting, and very unfair to someone whose life has really only just begun.

There is one thing I am sure of, though - being loved by someone has nothing to do with what you're like on the outside. I've always known this, but it's something that was truly reinforced in me during the years I spent surrounded by people who treated me differently just because I went through something that changed how I look - and how I perceive. I was damaged by something that wasn't my fault, and it wasn't my fault that I was never taken care of.

But I am being taken care of now, and I only have this to say -

Better late than never.

I love you Michele :)


ETA: Continue to here to read about my second experience with Bell's Palsy. Most of the entries linked are locked, but it's just a general timeline anyway.
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