Letting go of Perfect: My year with Bell’s Palsy

The day before BP.

The day before BP.

A year after BP.

A year after BP.

Imagine waking up with half your face immobile. That was my experience, seemingly overnight, and it was the scariest experience I’d ever had. On June 11, 2014, I woke up with the entire right side of my face droopy, and devoid of movement. My eye was droopy, watery, and I had severely slurred speech. My first thought was a stroke. My Mom drove me to prompt care. They asked me what my name was, the year, who the President was, to thankfully, rule out a stroke. They immediately wheeled me to the ER. When they told me it was Bell’s Palsy, I was thinking, “What? I’ve never heard of that.” It was, and still is, a scary disease. At least for me it was, because it’s a huge unknown. It’s not like a broken leg, where they put a cast on it, and it heals. With this illness, there are no guarantees.

I remember lying in that hospital bed, crying out of my left eye only. The other side was completely devoid of moisture. My self-esteem took a heavy hit, as my face was distorted when I smiled. When I spoke, I was slurry, especially “p” and “b,” words. In those early days, I guess looking back now; I didn’t realize how sick I was. In the beginning all I did was eat, and sleep. I had constant headaches, daily, skull crushing ones that left me in tears. With a perpetual supply of Ibuprofen at my side, I survived, but barely. It was my own personal nightmare. The combination of pain, fatigue, and having to cover my eye with a patch constantly, kept me at home from work for a month. I couldn’t drive, so I had to rely on my spouse, and my parents for rides to doctor appointments. And the pain in my ear from loud noises, was piercing, and felt like someone was stabbing me in my ear.

As if all this wasn’t frustrating enough, the doctors were of no help. They couldn’t tell me why this happened, or how long it would last. Even more frustrating, was the complete lack of empathy or compassion. I never did go back to either of those doctors. I was appalled by their lack of showing another human being that they cared. I would think, fine, you don’t know what caused this; you don’t have an answer for me. But a little compassion would have gone a long way. All they could tell me was recovery could take four to six weeks, to six months or more. There was also a scary answer: some never recover. I was scared. And even that doesn’t seem to cover the myriad of emotions that swirled inside me. To go along with pain, the frustration I felt everyday, my already frail self-esteem took a nosedive. My entire well-being affected, because nobody could give me any answers.

My spouse, bless his heart, was very supportive. He told me I was beautiful, even if I wasn’t feeling it. He, along with my parents, took good care of me. But when I looked in the mirror, all I could see was my ugly, misshapen face. I would cry constantly, and mourn my old face. Not only appearance wise, but also functions I used to take for granted. Something as simple as swishing and spitting water out! I wasn’t able to drink out of a straw, and could only chew on my good side. Struggling, too, to even keep the food in my mouth. To drink water, I had to hold the cup with both hands around the rim to keep the liquid in my mouth. My vision was also affected, because the cornea was severely dry. Hence, I had to put drops in the eye constantly, and keep it covered 24/7 for a while, because it was literally wide open. When I went out in public, people would stare. After a point I began to ignore it. My primary focus was on healing, and praying that this would go away.

Because none of the doctors I visited had an answer for me, I relied on my family, and a very supportive Bell’s group on Facebook. Even though they were on-line, and not physically present, their presence was such a blessing. I could talk, and vent about my situation to people who knew how I felt. Who knew how scared I was. Who knew the pain, and frustration of this mysterious illness. Who understood every single emotion I was feeling. Who understand it’s not just about vanity; it’s about how it affects you from the inside out. How when you look at other people who can smile, you get jealous. I’ll admit, even though I have half a smile, I get a little jealous of others, and still mourn my old face everyday.

Slowly, I began to heal. I began to regain movement, and can still remember the first time I could drink out of a straw again, properly! Before that point, I could drink out of either side only. I can remember the first time I was able to feel moisture out of my right eye. My speech began to recover as well, and I could go out without wearing a patch; would only have to cover it at night. I did return to work eventually, and was so happy to be in my usual routine again.

A year later, I have a healed cornea, an eye that blinks at 60% on its own (so far anyway), clear speech, the ability to swish and spit, a crooked smile, but a smile! I can smack my lips together, and my eyelashes, with the help of a curler, are curling again! (Before that they were flattened because of taping it constantly at night. So I very seldom wore makeup). I celebrate the little milestones. I do suffer from synkinesis, which are involuntary movements on my right side, when I blink, frown, etc.  Despite all this, I have a new lease on life. I’ve learned, and accepted that my face will probably remain this way for the rest of my life. It may start to improve more and more, because even at this point, little things continue to improve. At a slow pace, mind you, but slow progress is better than none. I can look in the mirror, and feel beautiful again. Some days are better than others, but I try to remain hopeful, thankful, because this could’ve been much worse. In the early days I was weak, and tired. But I slowly came out of the rubble, and fought back.

Bell’s Palsy may have taken half my face, but it did not take my spirit. Despite my self-esteem taking a pretty hard hit in the beginning, now, I don’t worry about my less than perfect smile, my less than perfect face or features. Forget perfect. Looks fade, we age, we have scars, we have “wobbly bits.” True beauty shines from the inside out, and that is what makes a person beautiful.

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22 thoughts on “Letting go of Perfect: My year with Bell’s Palsy

  1. Rose, you are beautiful! Thoroughly beautiful. BP– and any of the chronic ‘invisible’ diseases are impossible to explain and share with most of those who have never experienced such horrors. Blessed are the family, friends and support groups who at least empathize. Blessed are the doctors who show compassion, as so many are as frustrated or deadened inside as their patients. It is a hard, damned hard row to hoe for those who, almost instantly, awake to this new life. Nightmare? Reality. Fighting though and rising above are gold start and cheer worthy. You, Rose, are worthy. Treasure the courageous soul you are. Wear your scars proudly.

    • Thank you for stopping today, Ryan! I truly appreciate your generous, and lovely words. After this experience, I don’t take things for granted like I used to; I’ve come to appreciate even the little things. 🙂

  2. Rose what a great blog. I can sympathise, your illness is a terrible one and you have really suffered, love. It looks as if we have quite a bit in common. We are both fighters! I have a nice six inch scar from my ear down my neck from my illness . People stare but I see it as there ignorance rather than mine disfigurement. Well done you Mrs, for not letting it beat you. Keep up the good work. Tracey x

  3. I, too, have BP, and am in the support group that Rose refers to. She just made me cry. You forget the torment of this disease from the onset, until you are reminded of the hell you went through. Rose nailed it. Thank-you, Rose, for writing this blog. Hopefully, by bringing more awareness to this dreadful disease, or virus, or whatever the doctors don’t know what to call it, we will find a cure. Love you, I don’t know how I would have got through it without the Support Group.

  4. You are a beautiful woman inside and out, Rose!! I’m sorry you have this disease but am thrilled you’ve made huge, steady improvement. I didn’t know anything about BP. Thanks for sharing your powerful story. You should submit this to a health magazine.

    Keep sucking out of straws and smiling, sweetie!

  5. Oh, Rose! I’m so sorry you went through this and that your doctors were awful to you. I would’ve certainly gone about it a different way. You are beautiful both inside and out and don’t let anyone tell you otherwise. ❤

    • Thank you for stopping today, Linda. 🙂 And, yes, I know you’re a good hearted person, and will make a fantastic doctor. I truly appreciate your kind words, and encouragement.

  6. When I was 17 I had my tonsils removed and my hospital roommate was a young woman who’d just delivered a baby AND come down with Bell’s Palsy. I remember how depressed, perplexed, and devastated she was. Fast forward to a few years ago, and my nephew, an attorney with a very high-stress practice, had Bell’s Palsy. He’s doing much better now, thank God. ‘m so sorry you had to go through this, Rose. As somebody already pointed out, you are a beautiful woman even with that tiny little droop on that side of your face. I’m glad you’re getting better and wish you all the best.

  7. `Rosie,
    It’s been a long year, but a lot of wonderful things have happened during this time for you. Always focus on the positive and the other things become bearable. I’m so proud of you. Take care and continued healing for you is on my prayer list.

  8. Rose I’m so sorry your doctors had so little compassion. Thank god your, family, friends and other supporters stepped in. You have a wonderful attitude and I’m glad to see you’re recovering.:) Thank you for shedding some light on this condition.

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