On July 12, 2015, I was getting dressed and ready to attend a family birthday party not knowing that my life was about to change. Three days earlier, I had begun to notice an odd sensation along the right side of my tongue, and my sense of taste was “off.” I did not think much of it, at the time, because it was so subtle. My neck felt achy, and I was pretty sure that I was coming down with a cold. I thought that perhaps the sensations in my tongue were part of it.
Two nights before the birthday party, I came down with a headache that was the worst I have ever experienced. I have never had a migraine, so I don’t know what they feel like. Judging by the intensity of the pain, this headache was most certainly in the same category. I could barely lift my head. With the help of some ibuprofen, by the morning, the pain was completely gone. I went on with life as usual.
It was while I was standing in front of the bathroom mirror to get ready for the party that I noticed something unusual. I was applying lipstick and could not bring my lips together to form that all-important “smack.” As a matter of fact, my lips felt very numb. I was immediately alarmed and ran to the computer to type in my symptoms. When I saw that the symptoms fell into the “possible stroke” category, that’s when I alerted my husband. We immediately called an ambulance.
Thus began my journey toward recovery from Bell’s palsy which is paralysis of the facial nerves that can be temporary or permanent. Though, in my case, the cause is not entirely clear, the doctors’ consensus is that the shingles virus — or one similar — had attacked the facial nerves on the right side of my face. Though most people commonly associate shingles with painful blisters, it can also manifest in the form of nerve damage. The headache and numbness in my tongue were symptoms of the onset of the nerve damage. I was thankful to be spared the blistering more commonly associated with shingles. My doctor said the recovery would be anywhere from a few weeks to a few years — or possibly never. And that even if I did heal completely, there was a possibility it would return.
In my case, there was no medicine to take or any surgery that was worthwhile to consider. It has been a matter of allowing my facial nerves to heal, and for each situation, the length of time is different. I researched supplements and learned facial exercises to increase my chances of complete healing and improvement. I have met dozens of people who have themselves recovered from Bell’s palsy. For most of them, it took years and years — as much as ten years, in one case.
Some people who had healed on one side of their face were stricken years later on the opposite side of the face. Some people told me that the nerve damage showed up in other places on their bodies and affected their legs or buttocks. Regardless of how long it took, the majority of people reported that they did indeed finally heal and that the healing came on its own.
I am now approaching 3 years since being stricken with Bell’s palsy. The nerves and muscles in my face have healed considerably but have not been completely restored. I am believing that total healing will indeed come. The photo gallery shows the changes in my facial appearance from July 2015 through April 2017. The first photo in the top row shows my “before” Bell’s Palsy appearance. The last photo shows how I looked in April 2017. In each picture, I am smiling even though it’s difficult to tell — especially in the early on-set photos.
The First Year
The most difficult part of this journey came in the first few weeks. With the muscles on the right side of my jaw, neck and head being paralyzed, other muscles had to compensate. It was incredibly painful when you consider that the human head weighs about 10 lbs., and that many of the support muscles were no longer able to help with the heavy lifting. I was unable to get comfortable during the night and had to sleep sitting up and with my neck braced with pillows for about 2-3 weeks. The pain was not as bad as the lack of sleep which made me irritable and easily discouraged. Finally, the surrounding muscles strengthened and compensated for the ones that were not functioning, and the pain subsided. Things got easier from that point forward.
Normally, I wear rigid gas permeable contact lenses because my vision is so poor. I am legally blind, actually. The “hard” contacts shape my cornea to allow me to see much more clearly than with glasses. Within two to three months of being afflicted with Bell’s palsy, I realized that wearing contact lenses was no longer possible. I had to make the move to wearing glasses full-time — which meant really thick coke-bottle lenses and an additional dramatic change to my appearance.
I can tell you that I went through moments of small sorrows when I saw my reflection in the mirror. Oddly enough, my hair line had receded about an inch on the side that was paralyzed. It has been gradually working its way back. I had to learn to become creative with my hair styling.
During the first year, smiling was not possible. My mouth muscles wouldn’t cooperate. The coke bottle glasses combined with the paralysis were not a winning combination in terms of my general appearance. My right eyebrow drooped so severely over my eye that I had to tape it back with a piece of tape just to be able to see. I could not blink properly, so my right eye would alternate between being too dry or too weepy.
Anytime I salivated, the right eye would pour tears which was one of the weird reactions that happens as a result of Bell’s palsy. Because of this, cooking was a real chore due to the time it took to stop and mop away tears every time I inhaled something fragrant or spicy. If I opened my mouth wide, my right eye would completely shut. So chewing was a lot of fun with my eye opening and closing with each bite.
With Bell’s palsy, you cannot puff out your cheeks, and sipping through a straw is a near-impossibility because of the important role that cheeks play in the ability to sip. Biting down on the straw did the trick, That was the only way. Choking was another concern because of the way the paralysis affected the right side of my jaw. It affected my ability to chew thoroughly and to swallow — and this is still a problem even today.
The right eye was very light sensitive, in the beginning, so it was painful to spend much time outdoors even with sunglasses. Driving was nearly impossible during the first few months. A deep sorrow was that I could no longer see well enough to paint, craft and create. That didn’t stop me from trying, but I eventually did lay down my paintbrush for several months. Being able to give my husband a proper kiss is the ability that I’ve missed most of all. It’s getting better, but my pucker power is still lacking.
The Friendly Monster
There were other memorable moments during the first six months when the Bell’s palsy was at its worst. Strangers tended to treat me as though I had a mental or physical disability. They spoke louder than they needed to speak — or they would look to others who were with me to “interpret” for them or to speak on my behalf. One man walked up to me and told me to, “Cheer up.” He didn’t realize that I was actually happy that day but that I just couldn’t show it.
Worse was when people chose not to speak at all. This created moments where I felt isolated, but not often enough for it to become a real problem. There were uncomfortable and awkward moments, to say the least. I did get more than a few chuckles out of these things, thanks to my vivid imagination. In some ways, it was like being the sole participant in my own version of “What Would You Do?” I kept envisioning that John Quinones would walk around the corner with a TV crew at any moment. Suffice it to say that some people were very kind, and others not so much.
My favorite moment was when my then-4 year old grandson came to see me for the first time after my face was paralyzed. He gave me a big hug and then said, “Grandma Honey, why do you look like a monster?” I told him that my face was broken, but that it would not always stay that way. We both agreed that while I might look like a monster, I was a friendly monster — which is the very best kind.
I remember feeling tremendous relief when I was in the emergency room and the doctors informed me that I had not had a stroke. As a matter of fact, after many tests of all kinds, I was told that I was in excellent health. One doctor then started asking questions about other routine tests such as, “When was the last time you had a mammogram?”
It seemed so absurd to be asked such an irrelevant question in terms of the enormity of the situation. I wanted to tell the doctor, “If having another mammogram is going to cure me from the Bell’s palsy, then what are we waiting for? Let’s go!” Instead, I just gave her my best, “Are you kidding?” look. Of course, she couldn’t tell because my face was frozen in one position. “Spunk,” that’s what my deceased grandmother would have called it. Spunk and humor proved to be excellent crutches to help me walk this journey.
Today, healing is not yet complete, but things have certainly improved. My right eyebrow can lift on its own. I am able to smile more naturally. If I am merely walking along, no one would ever know that I have any level of facial paralysis unless I told them. It isn’t until I speak or chew that it becomes noticeable, but not in a bad way. I am still rocking those coke bottle glasses and will probably continue to do so for the duration.
I am no longer self-conscious about the way that I look and have learned to apply make-up to accentuate the positive features of my face and wear certain colors of lipstick so that the crookedness of my mouth is not as visible.
Throughout it all, joy was always there as long as I continued to choose it. I think that has been the most surprising part. It’s not that I didn’t have “down” days or have my share of struggles including physical pain. Even so, there were many things for which to be thankful. I learned to forgive when people’s reactions to my appearance were causing hurt. It was indeed possible to find humor in the middle of such a ridiculous circumstance. There were also times when it was okay to cry like when the picture of me at my son’s wedding revealed the horrible palsied grimace on my face instead of reflecting the joy that was in my heart. Yes, it was okay to cry, but not to wallow in it.
Most importantly, I found new ways to love and like myself. I learned how to cheer myself on and to be my own source of encouragement. I discovered that I am not the way I look. Appearance — good or bad — does not define me. When it came down to the quiet moments when I was alone with my thoughts, I could always feel the joy. It amazed me and strengthened me.
I came to understand, in just a small part, what the Apostle Paul meant when he said, “I have strength for all things in Christ Who empowers me (I am ready for anything and equal to anything through Him Who infuses inner strength into me; I am self-sufficient in Christ’s sufficiency).” Philippians 4:13, Amplified Bible.
For me, this is the end of my Bell’s palsy story, and I probably won’t be talking a lot about it from this point forward. No, I am not yet fully healed, but Bell’s palsy no longer defines me. It is no longer part of my internal conversation, and it no longer has power over me. In a sense, I am already healed. It just hasn’t shown on my face, yet. It’s been a gift and a blessing even though it may seem hard to believe. In many ways, I have been set free to be a newer and improved version of myself, and that’s something to smile about.
Until next time! ~ Susan
The printed Scripture verse above is a handmade gift from my friend Jeri of Abiding Word Creations. This verse spoke to my heart in a special way during the first difficult year. Thank you, Jeri!