Is Bell's Palsy a Feminist Issue?

Hearing recently that Amy Goodman of Democracy Now! has Bell's Palsy, I was pleased to see her write about her experience in Alternet. Her story is very matter of fact, like much of her writing and other commentary, and I am proud to be in such good company. The story also had me asking an important question: Is Bell's Palsy a feminist issue?

After last week's post about the woman who wrote to Cary Tennis asking why she deserved Bell's, I've been thinking about it a lot. (A flare up in my residual spasming contributed a little, too.) So I've been talking to friends about it, and they have all said that they are amazed at my will to keep living my life as normally as I could through the worst of it. To which I have to answer, "Why would I stop living my life as normally as I could? Isn't that what we are supposed to do during a non-life threatening illness?"

One friend really brought it home for me. She said that it would devastate her, even though she saw me in the worst of my paralysis and didn't think I looked all that bad. But she feels uncomfortable leaving her house if her hair looks bad, or if she has a zit, or if she feels fat; how could she possibly brave the world with half of her face seemingly sliding off? For me, it was a no-brainer. My life couldn't wait for me to get over what was essentially a cosmetic condition. (Of course, that caught up with me when my facial muscles started to burn with pain and my ear became inflamed. There is a reason that the doctor tells you to rest!)

So, are we pushing women too far toward perfection? Are we too judgmental of imperfect women? Even my father will make insulting comments about women on TV who have a crooked tooth, asymmetrical eyes, or a big nose. I feel like my Bell's Palsy was a chance for me to face the world and force people to value me based on my personality, my intellect, all that stuff that really counts. I also realized that some people, complete strangers, were offended by my imposing my lopsided face on them. I got some of the rudest "Smile, dammit" comments I'd ever received. It all reinforced the idea that women are still considered decorative in our culture, as objects to be gazed upon, as if I were required to perform for men at all times. And I simply could not do that with Bell's Palsy.

I hope that most people with Bell's Palsy would take it as much in stride as possible, like I did. Unfortunately, after the Salon letter last week, I know that is not the case, and that there are women who are devastated by what is basically a temporary paralysis that is never life threatening. Vibrant women should not let facial paralysis cause emotional paralysis. I hope that someday, women will not be put under impossible pressure to maintain impossible beauty, and that they will embrace the flaws that life has given them. After all, my smile will always be wonky now, and my right eye will always close when I saw certain words. Such is Bell's Palsy, and I refuse to hide under a rock just to make people more comfortable.

Bell's Palsy Sufferers of the World, Unite and Take Over! ;-,

Suffering from Bell's Palsy

I know I haven't written in a long time, but I've been kind of wrapped up in other things and not very motivated to write. But I saw something in Salon that really sparked me. I've been out of town for the past week at conferences, so I'm really late to this, but this letter writer who has Bell's Palsy is absolutely flipping her shit. She doesn't want to leave the house. She's trying to figure out what she did wrong to deserve such a horrible fucking tragedy. She's wondering if the universe is giving her a message.

Oy. It really pissed me off, so I was happy to go to the letters section to see how other people felt. I'm bummed that comments are closed, because I would have given her a lopsided mouthful! The letter is just dripping with arrogance and privilege. Bell's Palsy sucks, big time, but it isn't the end of the world. There's excruciating pain, it's hard to eat or drink anything, your eyes hurt like hell, people make rude comments and you make babies cry.

It seems like this person is most concerned about the last two symptoms. Here's what I say: Fuck it. If someone is so offended by the sight of your slightly contorted face, then they have a real problem and I feel sorry for them, because they must go through life getting offended by everything. And I make babies cry anyway, so I don't even know if my Bell's made it worse or if it was just my charm.

If she were upset over the pain and inconvenience, then I could sympathize. But even as I was suffering my intense pain from Bell's, I never felt sorry for myself. (Well, maybe that's a bit of an exaggeration.) Other people felt VERY sorry for me, like my mother, and all I could say was, "At least it's temporary. It's not killing me. Get over it!"

I'm reminded of my brush with boobicle cancer. I had a lump, I had a mammogram, doctor told me it needed to come out, and I was under the knife the following week. Everyone felt so sorry for me, wondering how I would manage with a mutilated titty that would most certainly be unattractive to possible suitors, and going through a divorce and all I didn't want to feel unattractive, did I? Again, oy. The surgery sucked, big time. I couldn't move my right arm for a long time. I still have stabbing pain in my boob, especially in cold weather. I had to wear a binder type bra while I was healing. And yes, I have a scar. But I'm not ashamed of it in the least. It's a sign of my present health, which I may not have right now had I not gotten that scar.

That's what I don't understand about women who get breast implants after a mastectomy. I've had really small boobs all my life, so having a mastectomy wouldn't really affect me aesthetically. (Physically, pain wise and ability wise, is another story. It's an incredibly difficult procedure to recover from.) So it kind of pisses me off when women in life-threatening circumstances still have the ability to decide that they don't want to live like me, flat-chested and happy.

This has turned into a long rant. Maybe it will get me blogging again. But things like this just really spark my fire. People just aren't grateful for what they have and need to wallow in self-pity, and I have no patience for it. Bell's Palsy girl: leave your house, grow a sack, and get a life! You're going to be a mother soon! Don't pass your neuroses to your child!

Whew.

Bell's Palsy Chronicles, Part 9

To look at me, you'd think I was almost back to normal. I saw an otolaryngologist about a month ago, to figure out what was going on with my ear, and he didn't see any damage. We concluded that it was just muscle strain that was affecting my inner ear, and that it would just go away. I hadn't lost any of my hearing, so that was a relief! But he did insist that I see an opthalmologist because my blinking was very labored.

The opthalmologist did a very thorough exam, and didn't find any corneal scratches or loss of vision. However, I still feel like I have sand in my eye. This could be from damage to the inside of my eyelid, but he told me to wait and see if it gets better before we investigate.

I've got most of my facial functioning back, and I certainly look perfectly normal. I'm still having spasms, mostly around my eye. That has to be the strangest sensation. I'm still using eye drops like crazy, and allergy season absolutely sucked. I'm still unable to purse my lips fully, which is the only highly noticeable symptom.

It's been almost six months since my BP.

Bell's Palsy, The Chronicles, Part 8

As I stated in other posts, I was in Florida for a week for my cousin's wedding, which I was nervous about because I felt like I still looked weird from the BP. I'd had some progress, but my smile was still crooked and my bad eye looked like it was bulging.

When I met my mother at the airport, she kept studying my face, trying to see the BP. You know how mothers are, but I hadn't seen her since it started, so she was going by what my face normally looks like. She said that when I blinked, she noticed that my bad eye didn't blink as much. It was late at night, and my face was tired, so I decided to give it a good rest before really thinking about it.

The next day, after almost 12 hours of sleep, it was dramatically better. I don't know if it was because I was in a warm environment or what, but my eye was almost normal. My smile was another story, but the muscles were certainly strengthening. A couple of days later was the rehearsal dinner, and I was terrified. I was about to see most of my extended family and meet a bunch of people I didn't know. For better or worse, I tried not to smile too much. I wore my glasses so that a) people wouldn't notice my bad eye, and b) to protect my eye and keep it moist. Just about everyone in my extended family knew about the BP, and said it looked fine or that they didn't notice it. One of my brothers said he was expecting much worse, and told me everything looked okay. The wedding was the next night, and was much the same.

Friends of mine said they noticed a little something, but it was not ugly or disfiguring. Maybe they're a little more honest than my family? All I know is that, now that I'm back in Virginia, it seems to be regressing a bit. We had a very cold snap the day after I returned, and I wonder if that is making things worse. Maybe it's being at work again, staring at a computer screen all day. I'm not resting as much as I was in Florida, so I spent most of yesterday (Saturday) horizontal to give my eye a break. This week we're expecting warmer weather, so I'll see what happens. In the meantime, I'm exercising my smile and trying to blink my bad eye while holding my good eye closed. I may try some moist heat today.

It is day 61 of my BP.

Bell's Palsy, The Chronicles, Part 7

It's been awhile since I've written about the BP, because I have not made much progress. When I last wrote, it was day 21 of my BP. On Tuesday, it had been 6 weeks since my BP struck.

I'd been feeling sorry for myself, again, because I wasn't making any progress with my facial muscles. My mouth is getting every-so-slightly better, in that it moves a tiny bit when I try to smile. But my eye is still bothering me a lot.

I've been using an eye ointment because it keeps my eye lubricated much longer than regular eye drops. I decided yesterday that that may be slowing down my progress, because my eye may be getting lazy by not having the need to blink. Last night I decided to use regular eye drops. When I woke up, my eye felt fine, and it was nice not to have that blurry vision and greasy feeling around my eyelid. So today I wanted to see what would happen if I kept the ointment out of my eye.

It was a long day. I don't think my eye is closing as well as it was, and there is a constant burning sensation. Sometimes, tears suddenly well up, and I shed a tear. That's uncomfortable when talking to a student. "No, I'm not crying, I promise!"

Maybe my springtime allergies are kicking in, but my eye is really burning, which in turn makes my nose run. Gah!

I'm leaving for my cousin's wedding in my hometown on Tuesday, and I sure hope I'm doing better by then.

It is day 44 of my BP.

Bell's Palsy, The Chronicles, Part 6

I haven't posted on my BP in a while because not much has happened. The pain is basically gone on the affected side of my face. However, I've aggravated my TMJ on the left side because I've been holding my mouth funny. I've been taking ibuprofen for it and using a heating pad when I'm at home. It helps a little.

I'm thinking about going into a physical therapy treatment called facial retraining. From what I can tell, I have flaccid paralysis, which means that the muscles seem dead instead of jerky and awkward. (Sort of like getting a whole lot of Botox injected all over one side of your face.) I feel like if I don't get some help, that I may never heal right or possibly do some major damage. I can sense the tiniest movement when I try to smile, but it is not noticeable when I look in the mirror. Besides, I'm sick of using straws and eye ointment!

Yesterday I was really down because of my BP, partly because I was extra droopy, which is uncomfortable. Also, my boob scar was really hurting for some reason (weather? hormones?) which didn't help. I talked to my mother, and she managed to cheer me up again by saying she was so proud of me and that I would get better eventually.

It is day 21 of my BP.

Bell's Palsy, The Chronicles, Part 5

So much for the daily log, huh?

Really, not much has changed. I went to the doctor last week, and he ordered a CT scan, and told me to take a 3-day weekend to rest. I did that, and I think it helped. One thing I didn't know about BP was that it caused such exhaustion, which makes the BP worse. You really do need to take it easy while your nerves and muscles are recovering from what is a pretty traumatic injury.

Today I'm doing much better. I took the afternoon off work to get scanned and rest, and tomorrow I'm resuming regular hours. I hope. I'm still having some pain, especially the weird stabbing pain behind my ear that makes my eyes cross. But the bruised feeling on my face is much better, and my eye is getting better. I'm still using eye ointment during the day, since it lasts longer and feels better.

It is day 13 of my BP.

Bell's Palsy, The Chronicles, Part 4

Oy. Not a good day. Last night was full of fitful sleep because the pain in my parotid gland was so bad. When I got up this morning, my eye and mouth felt stronger, but the pain was still there.

I made an appointment with my doctor, and he seems stumped as to why my pain has persisted. So he's ordered a CT scan to make sure there isn't something else wrong. Like a tumor. This scares me because I had a pre-cancerous growth removed from my breast a little over a year ago, so I'm at risk for developing tumors.

The doctor also advised me to stay home from work tomorrow, thinking that I may be overdoing it. I feel so guilty missing so much work, but I don't know what to do, and I'm not being very productive. Today has been a downer. I really try to stay positive, but it's hard now that I know I'm not presenting normal symptoms. I've been sick a lot in the past year, and it makes me feel like a weak person, that I should be able to suck it up.

Today's symptoms: headache, neck pain, severe inner and outer ear pain (as in, wearing a hat is like murder!), tongue pain, dry eye, drooping mouth, face is tender to touch, slight swelling.

It is day 9 of my BP.

Bell's Palsy, The Chronicles, Part 3

I've decided to write a daily log of my recovery from Bell's Palsy, which started a week ago today.

I felt really good when I woke up this morning, and I even thought that I could close my eye better. My mouth seems to be working better, too, as in I don't dribble quite so badly when I drink or eat.

At work, I was doing okay. I used the eye ointment instead of drops because it makes my eye feel so much better, and it was a windy day today. However, the ointment really blurred my vision in that eye, so reading and focusing was a problem. After lunch, I started feeling worse. My facial pain is pretty bad right now, and the leaflet that came with my prednisone cautions against using OTC painkillers. Ugh. My parotid gland feels like it'll explode, and wearing a beret hurts like hell.

Not as much twitching today.

I went home from work about an hour early, appreciative of my work superiors' understanding and support. I'm going to take it easy tonight and go to bed early. I may be overdoing it, and I'm thinking about following up with my doctor tomorrow.

It is day 8 of my BP.

Bell's Palsy, The Chronicles, Part 2

In my last post, I introduced my experience coming down with Bell's Palsy. At that time, I was very uncomfortable and annoyed that everyday activities required more effort, but I was in fairly good spirits.

This past weekend was different. The BP kept getting worse, to the point where my face was drooping and my bottom eyelid was hanging open. Which is gross. And hurts like hell. For most of the weekend, I was exhausted. I don't really know why, but it might have to do with the cranial nerve rebuilding itself. Or it might have had something to do with how horribly down I was feeling.

I'm thankful that it wasn't a stroke, and that this condition is not usually permanent and is confined to my face, neck and upper shoulder. I also realize that there are people out there who are para- and quadriplegics, with no hope of recovery. There are people all over the world with terminal and life-altering illnesses and conditions that will never change for them. I am truly fortunate that I am not in such a condition. But I was feeling sorry for myself because I was in pain, because it was so hard to take in liquids, because I was limited to eating soft foods, because I wasn't able to sleep even though I was exhausted. I talked to my mother (we talk every single day) and I was complaining about the BP, and she said to me, choking up, "You're so much stronger than I am. I would be absolutely freaking out if something like that happened to me and I was so far away from my family." I'm assuming she was also thinking about the events of the past two years, which involved getting married, quitting a stable job to move to Vermont with new husband, have new husband dump me after a few months, move in with parents to look for work since old job had already replaced me, find a job in Virginia, get a lump in my breast, have lump removed, move to Virginia to start new job, get divorced and sued, and find out that breast lump is an indicator that I'm twice as likely to develop a malignant tumor.

I've been through a lot, which might be why my immune system is down right now. Hence, the BP. I don't know if I'm entitled to feel sorry for myself, but I do.

I'm feeling better today, in that my condition hasn't worsened from yesterday to today. That's a huge relief. I don't know how long I will stay on this level, which is part of the horror of BP. If I knew this would be permanent, it might not seem so scary and I could start editing my life around it. But it might clear up in a week, so I don't want to make any big changes. Or it could take a year to clear up, which would be dreadful!

Today's symptoms are tenderness on the right side of my face, especially around my ear, temple and jaw. My eye is still terribly dry, but not any weaker, and the conjunctivitis has cleared up. My mouth and teeth hurt, which is new, but not so bothersome. Eating is still difficult. Certain sounds feel like they'll split me in half. My face and neck are having some spasms. And I'm still exhausted.

It's day 7 of my BP.

Bell's Palsy, The Chronicles, Part 1

(Originally titled "I'm a bad blogger, but I have a reason!")

I've been neglecting my brand new blog for a week now, and the guilt has settled in. Maybe I shouldn't feel guilty, and I'm going to try to talk myself out of the guilt with this rambling post. Here goes.

I woke up Wednesday morning with half of my face paralyzed. On Tuesday, my eye was really bothering me, but I just thought it was the cold air or allergies or an irritant. Nothing serious, nothing that some eye drops wouldn't cure. But on Wednesday, I couldn't eat my oatmeal without dribbling half of it on my chin. (Sorry, I know that's kind of gross, but you should've seen it!) Something was wrong. I called my doctor and made an appointment for that morning, and had one of my few moments of gratitude for living in a small town. In the meantime, I was wondering if I'd had a stroke or some other neurological event, and was scared shitless.

That morning, I was diagnosed with Bell's Palsy. I didn't know much about it, but had a friend who had it a few years ago. I didn't know what I was in for. Surely, I could live my life with a little facial paralysis, and considering it's usually a temporary condition, I'd be back to normal soon, right?

WRONG!

Since Wednesday, it's progressively gotten worse. My right eye can't blink, which means that it's quite prone to dryness, infection, abrasion, etc. I can't keep enough eye drops in my eye, and have to manually blink it to alleviate the extreme pain. Now I have conjunctivitis from touching my eye so much.

Now on to my eating situation. Eating is a truly ugly event in the Quite Contrary household. Bibs are a necessity to catch renegade morsels. Miles loves that. Drinking is even worse. I've ruined a robe with various staining liquids, such as coffee, cranberry juice, and tea.

Yes, I look a little strange, with a slightly sagging mouth and puffy eye. But what's the funniest is when I don my eye patch. The doctor recommended the eye patch to prevent stuff from getting in my eye, which is a great idea if it weren't so damned uncomfortable. Miles really hates the eye patch and runs away from me whenever I yell "Arrgggghhhh, matey!" at him.

Luckily, this is temporary. You really don't realize how important your facial muscles are until you lose control of them. My life has been much more difficult this week, and everyday tasks take much longer to complete. I'm basically single-handed at the moment, what with using one hand to manually blink my eye every few seconds. I've worked from home to avoid germs that could get in my eye (lot of good that did) and haven't been able to drive anywhere. Eye drops and tissues have to be at arm's length at all times. But today, I think I'm on the upswing.

I tend to get down about my health when stuff like this happens, such as when I had my boob hacked off a little over a year ago.

But, I have my life, friends and family. And Miles.

It is day 4 of my BP.