November 18, 2012

An Unwanted Anniversary

Just over one year ago, I was in Spokane, WA working at a holiday craft show selling my letter photos. My 2 closest friends had driven out to visit with me and we were enjoying spending time together. Before the weekend was over, however, I turned into a sobbing, hysterical mess--and not just because my sales were bad for the first time out there.

This story actually has its beginnings way before November. This particular story can trace its beginnings back to the summer. Back when we were still living with my in-laws, I began having this odd ache in my jaw and neck. Sometimes is was only in my lower jaw, sometimes it would radiate down my neck, sometimes it encompassed that whole area. Always on my right side. Being the hypochondriac that I am, I immediately began looking at heart attack and thyroid symptoms. Having ruled those out I assumed it was stress related (while keeping the possibility of some type of fatal cancer in the back of my ever-paranoid mind). It would flare up and bother me, causing me to unconsciously rub at the area in a useless attempt to massage away the pain, and then it would go away and I would forget about it for a week or two. This went on for months. Having no insurance meant I couldn't go see a doctor about something that may have just been stress and most likely couldn't be treated. So I did what I always do when faced with an uncertain medical issue--I prayed it would go away.

Which brings us back to that November weekend. The ache was still there, but this weekend I started noticing something else that was odd. Food started tasting different; everything had a metallic taste to it. It suddenly dawned on me what was going on and the blubbering and self-pity hysteria ensued. The Bell's Palsy was coming back. Why it took me so long to figure it out I just chalk up to the fact that each of the 5 (could be 6 now, I lose count) times I've had it, it's come on differently. One time it started with such a severe headache at the back of my skull that I ended up in the emergency room where they gave me an MRI and sent me home with prescription Advil and a $600 bill. The paralysis hit me the next day. I really should know by now that if anything the least bit odd is happening to my body from the neck up, it's most likely Bell's Palsy coming on.

Bell's Palsy is a condition in which damage, trauma or dysfunction of the 7th cranial or facial nerve causes a loss of motor function in the facial muscles, resulting in paralysis of that side of the face. Normal Bell's Palsy doesn't keep recurring. But I'm never normal, am I? No, what I have is not technically Bell's Palsy--it's a genetic defect that causes that nerve to keep swelling, and when it does, it's getting pinched in a bone canal that is too narrow causing paralysis to set in. For me, this means that the muscles on my right side stop working. My eyelid will no longer close and my tear ducts stop producing tears which means that I have to keep medicine in my eye and an eye patch on or else I will damage my eye. I learned this the hard way over the years as I've had abrasions on my cornea during one bout and an actual hole in my cornea that I could see in the mirror during another bout. The one good eye has to work overtime and becomes extra sensitive to light--usually this means I have to sit in a dark room without TV, computer, or books. I can't taste anything on half my tongue; my lips won't close so I can only drink from a straw lest I drool all over and I have to chew with my mouth open; I can no longer smile or raise my one eyebrow. I also have pain across my cheek where the nerve is located which makes it painful to hug someone or lay on that side.

Full recovery has taken anywhere from 6 months to 2+ years. My recovery time gets longer with each episode. I also recover less each time. I can no longer blink both my eyes fully. I have a crooked smile. One eye closes more than the other. One eye and eyebrow sits higher because the muscles actually support it. My bad eye frequently waters and I can no longer keep it open when I yawn or chew (sounds weird, looks even weirder). I look at older pictures of myself and I miss that bright smile. I spend a lot of time practicing my smile in the mirror so that I will know how to hold my face when someone is snapping a photo. Conceited? Probably. But I know there's a good chance my face will never get any better than it is now. I want to make sure I don't get depressed when I look at family photos.

I consulted with a neurologist once and he said he could prevent it from ever happening again with a simple surgical procedure wherein he would drill a small hole into my skull to access that bone canal. Then he would drill through the canal to make it wider so when the nerve swelled, it wouldn't get pinched. While the idea of allowing someone to DRILL THROUGH MY SKULL is even scarier than facing life without Twinkies, I still plan on having that done...when I have insurance. Until then, I just pray that I won't get stuck like this the next time.

See, that's my secret fear. I am terrified that one day I will not recover and I will be forever forced to wear an eye patch and drink through a straw and smile behind my hand. I know that many people have far worse things to deal with than this and I know rationally that I should be grateful that I can still get up everyday and hug my kids and my husband. I know that, I do. But I still cry sometimes when I see a candid shot of myself and I'm reminded that my smile is a little less bright than it once was. I'm still self-conscious around friends when I'm laughing with one eye closed and half a smile.

But all I can do is the best with what I've got. At the doctor's office during the onset of my 2nd episode (and at 17, the first one I was old enough to remember), my mom and I heard his diagnosis and we both laughed. We couldn't help it. Even then we knew that I just never did things the easy way. 

1 comment:

  1. Oh baby, I am so very sorry. I am crying with you and wish with all my heart that I could take away your pain and suffering.