by Adriana Rafferty.
Bell’s Palsy: Bell’s palsy is a disorder of the nerve that controls movement of the muscles in the face. This nerve is called the facial or 7th cranial nerve. Damage to this nerve causes weakness or paralysis of these muscles. Paralysis means that you cannot use the muscles at all.
As a little girl I had never heard of Bell’s Palsy. When my family was driving to a restaurant in Rhode Island, the state that I adored visiting, with it’s endless green trees, clear blue sky, and large open spaces, I simply thought my cheek was swelling. It quickly became apparent to me as I sat in the car talking to my parents and sister that something was happening to the entire left side of my mouth. My thoughts were, of course, that of a child’s and as I scrambled for a reason behind the fact that the left side of my mouth wasn’t moving. One of the first reasons that presented itself was something my grandma had warned my cousin and myself of years ago. She had said that if you make a crazy face for too long, your face will stay that way permanently. This story was told to us alongside the one that if you chew your hair and accidentally swallow a piece, it will grow in your stomach and won’t stop, and you’ll have to get surgery. But all the same, the myth my grandma had told me was the best I could think up.
It was after the restaurant that it became startlingly clear that something wasn’t right. What had started out as a simple question I kept to myself along the lines of “What happened to my mouth?” turned into a question my entire family was asking along the lines of “Oh God her face isn’t working what’s happening?” What followed was an endless night of frustration for my mother and something that is nothing more than a blur for me when I dig for the memories of that night. My parents took me to Kent County Hospital, and my Dad took my sister back to the hotel.
We were on vacation and the restaurant visit was a time to catch up with my dad’s side of the family whom we hadn’t seen in years or had never even met. We were three thousand miles away from home. And the simple fact of it was we were on a wonderful family trip and half my face had given up. Three thousand miles away from our local hospital, Kent County was the closest hospital and the only one we considered going to, especially since my father had gone there when he was young. After waiting for four hours and being misinformed multiple times about ridiculously long wait times, we left the hospital not sure what to do next. It was clear to me that my vacation had virtually ended for myself and my very distressed mother.
Now, let me take a minute to explain Bell’s Palsy from a personal standpoint. It doesn’t hurt. You know how when you go to the dentist’s office and the specialist numbs the entire side of your face and it feels heavy or like it’s sliding off? That’s the closest description I can get to explaining the sensation of Bell’s Palsy. When I tried to speak or make facial expressions, I got nothing but heaviness and a blatant refusal to do anything useful from one whole side of my face.
So, if we had never found out about Hasbro Children’s Hospital from my dad’s cousin Jimmy and his family, (who we had decided to stay with for the last few days of our vacation) my mother might have gone into hysterics not knowing what the heck was wrong with me. And yet, if we hadn’t found Hasbro Children’s Hospital, I would never have experienced the worst two days of my life. All the same, I highly encourage buying Hasbro products for the possible children in one’s life. As it was, after a forty five minute drive myself and my family found itself being ushered into to doctor’s office after a short wait in the cheerily decorated waiting room. The walls were stark white, but colorful pictures helped break the monotony so easily felt in a regular hospital, and helped put my family at ease. From there the doctor told me about what had happened to my face and explained how Bell’s Palsy could be caused by a myriad of things. Unfortunately, some of these things could be deadly. Like Meningitis. I learned very quickly that Meningitis was really, really bad. The doctor recommended taking various tests to rule out anything deadly that could be causing the Bell’s Palsy. These therefore I needed a blood test and a spinal tap, or Lumbar Puncture. Fun stuff, I know.
I had taken blood tests before, so while I still hated getting it done, the blood test was easily completed and sent to be tested. Next was the spinal tap. The only time I had heard the term “spinal tap” was usually in conjunction with “giving birth” and had heard everything from the purpose of it being to ease horrible pain to the stories that it could cause horrible pain. The doctor walked me through everything and even showed me all the various things they would use, except the exceptionally long needle of course. I don’t remember much, but afterwards I was sure of the fact that they had drugged me to the point that if one of my silly teenage celebrity crushes had come through the door, one whom I practically worshiped, my response would’ve been something along the lines of “What’s up?” and waving to them in my paper dressing gown.
I remember hearing the nurse say that was the poster child for spinal taps. If only the same could be said for my recovery.
We stayed the rest of our time on the East Coast in Jimmy’s house. It’s a beautiful two story house built virtually on the water of a quaint bay in Rhode Island. There’s the house, the back yard with a nice expanse of grass, then it drops down to a rocky beach and the gently lapping water of the bay. They even have a tree swing out over the water.
The top level of their home was decorated mainly in white, and splashed with bright colors that brought a sort of feeling of permanent summer or spring to the living room and dining room and porch, and the rooms were drenched in sunlight. Downstairs was dark, with wood walls and a simple kitchen and a TV circled with chairs. However, the bedroom my sister and I stayed in still had it’s cool bunk bed where I had awakened one morning as a little girl to find one whole dollar I got for my tooth, instead of twenty five cents. Even the darkest part of the house managed to hold golden memories for my sister and me. But when I was put down here to rest, it all seemed darker, the light from the porch not strong enough to seep into the darkness of the little bedroom.
Down there was where I stayed, my back screaming no matter what position I was in, my head in a constant ache, and my stomach turning viciously. Unfortunately, my puncture for the spinal tap hadn’t healed properly, and though it was virtually microscopic amounts, I was losing spinal fluid. As it turns out, your body really needs that stuff. As I stayed holed up in that dark room my parents tried to entertain my little sister, who was too young to really understand what was happening. My sister went on the seadoo, saw how to canoe, and went swimming. I did nothing but dread getting up at all. Even a simple trip to the bathroom was a long, torturous walk. Through the small living room, around the kitchen, a walk that I never gave a second thought to when I was small. Now it was a struggle, a mental battle to keep myself upright, to put one foot in front of the other, and to try desperately to keep my stomach from upheaving as I stayed upright. I was still young, but I understood what it was like to be a prisoner in your own body. To not be able to move on command, to be comfortable for even a second. It was hell, and the sympathy I felt for my grandparents who were slowly losing mobility was overwhelming. I knew that their pain might not be as intense as mine was, but my grandpa had chronic back pain and my grandma was completely dependent on other people to even move her. And now I had a deeper understanding of what that all meant.
The hospital recommended a warm massage to relieve the pain, and lucky for us, Jimmy had just bought a spa for their backyard. I climbed in, my back shrieking in protest and my swimming head making it difficult to balance. I had on sunglasses and watched the sun set as the glasses slowly became wet from the spray of the bubbles. What sweet relief I had, watching that sun turn the sky orange and the clouds pink. But it wasn’t nearly long enough. As soon as I got out, my stomach decided to empty what little it had left on the grass. The embarrassment was almost worse than the act vomiting on their pristine green grass… almost.
My parents took me back to the hospital the next day. It was the longest forty five minute car ride of my life. If I wasn’t lying completely vertical on my back, my back was in enormous pain. My head had a steady ache that never changed no matter what position I was in, and my stomach couldn’t hold down anything. The nurse who wheeled me into the hospital took me to near vertical as he pushed, making sure I was as comfortable as possible. But as they took my vitals I still found myself dry heaving into a bucket. It was the first time I had ever dry heaved, and unfortunately it wasn’t my last. It was and still is the most uncomfortable sensation I’ve ever gone through. I was shaking and so very miserable I could hardly stand it.
But then they wheeled me into a cheery space, laid me out on a paper covered mat, and stuck a needle up my arm. They attached an IV, and slowly my pain eased. They ended up not being able to warm the bag of caffeine they gave me in the IV for my splitting headache and had to put five heated blankets on me as the liquid entered my bloodstream. I snuggled into the warmth and finally felt relief from the pain I had felt for more than twenty four hours. After the IVs were done, I tossed off some of the blankets and told my mom I was hungry. She cried in relief.
It’s funny some of the things one can forget when freed from excruciating pain with fresh caffeine running through the veins. That night I stayed up watching television well past my normal bedtime as my mom slept fitfully on the uncomfortable seat by my bed.
And that night I didn’t sleep too much either, considering the machine that monitored my heart rate slipped off every thirty minutes to an hour, pronouncing me dead as the nurses hurried over to fix it. The next day I was given caffeine pills among the other painkillers, and young doctor interns came in to ask me questions. I learned from them that they hadn’t found anything troubling or deadly that could be causing the paralysis of my face, and they were curious to meet me. I greeted them all with a smile, tried to make them laugh like I did with my mom, and talked too fast. It wasn’t until my mom took me to the bathroom with a mirror for the first time when I became mortified by the mere thought of people seeing me. My hair was in knots, piled atop my head and I was wearing paper. And suddenly, since the pain was only a dull throbbing in my lower back when I stood, this mattered. It mattered that my hair looked like a small tornado had touched down and wreaked havoc along my scalp. Now that I look back at it, life began to matter again, and I was finally free from the prison of my pain ridden body. I could hold down some food, could walk with more freedom again, and could think of anything I wished, not just pain.
And it definitely mattered that half my mouth had stopped working. Its only movement was being dragged along by whatever the right side of my face was doing. Even my eye closed just a bit more slowly than the other. I had to wear an eye patch while showering since I couldn’t do anything but lightly close my left eye. Bell’s Palsy looks much more horrible than it feels. It’s startling to see, and it you never really get used to the sight of a face with the effects of Bell’s Palsy fresh on it. So when my dad and I celebrated a joint birthday party at Jimmy’s house (me and my dad’s birthday’s are separated by two days) he made fun of me. He talked funny, one side of his mouth opening as the other remained shut and paraded around saying “Hi, I’m Adriana.” And strangely enough, when I look back on my whole ordeal, that’s what I remember.
My whole family laughing at him, and me laughing as well, surrounded by wrapping paper as I lay sprawled out on their couch in their sun drenched living room.
My face eventually went back to functioning completely normally, and luckily no effects were left behind. I had a grand time scaring my cousin to pieces coming out of the airport covering one half of my face, then showing him my full face. But I was still relieved when the most visible paralysis effects faded after only a couple of weeks, even though I wasn’t completely rid of it for several months.
I also began to linger with my grandpa and his slowing, shuffling walk. I conversed with my grandma when I was with her, trying to get her to tell me stories. Get her to leave her wheelchair and return to the days of her youth when she could walk, comb her “long jet black hair” and just be young. I understood what my grandparents said when they told me to enjoy my youth. I had a glimpse into a life without the freedom to move, to think, and to speak as I wished.
And I still hope against hope that the pain I felt in those days during my ruined vacation will never return, but to still cherish the time when it is gone. I’m really enjoying being young.