Living with Bell’s palsy

I am caught up in a new adventure, the kind no one ever bargains for.

It began a week ago with a dry and scratchy left eye. Why was it tearing so much? The next morning I awoke to a muscle tic in my lips. Twitch. Twitch-twitch. I pulled out my phone and turned the camera to my face. The left side was not working like the right.

Alarmed, I popped out of bed. Was this my whole face or just one side? Was I having a stroke? I checked arms and legs—fine, at least so far. On the way to the bathroom I grabbed my phone in case I had to dial 9-1-1. (My sweetheart was still sound asleep.) At the mirror I tested face muscles—smiling big, squinching eyes. Definitely less movement on the left.

I paused to see if paralysis was spreading. Arms and legs still fine. It was only affecting my face. It likely wasn’t a stroke.

I was only partly reassured.

A few minutes on Google led me to Bell’s palsy. Affects 40,000 people a year in this country, 1 in 65 in a lifetime. Most likely temporary, though it takes a long time to heal.

The cause? No one knows for sure. For some reason—maybe a virus like the ones that cause shingles and Lyme disease, maybe trauma—the facial nerve on one side becomes inflamed and then dies. Face muscles lose their signals and fall dormant. In most cases the nerve regenerates without treatment and the muscles come back to life. But because nerve tissue grows only a millimeter or two per day, the process can take weeks. Or months.

Over the next couple of days paralysis settled into my face. Eating became harder; so did drinking. Sometimes water dribbled down my chin, other times I choked. Without cheek muscles, forget sucking on a spout or a straw. While chewing, I bit my lip then bit it again. Kissing my sweetheart turned into a lost cause. Or half lost. The left eyelid no longer closed completely, so I needed to blink long and hard, every time. I began propping my cheek in my hand, holding the eye half shut to keep it comfortable.

Luckily my life these days is a quiet one, my work taking place from the comfort of my desk. I could talk to clients on the phone just fine, as long as I worked a little harder to enunciate.

I rested more, finding I often needed an afternoon nap. So much extra work wears you out, you know?

I visited a massage therapist. She placed her hands gently on my scalp, listening. “Did you bump your head recently?” she asked.

Why yes, I did. Two months ago a renegade casserole lid—heavy, glass—slipped off its base while I was placing it on a top shelf. Next thing I knew I had a half-inch gash at my widow’s peak, and the hand that I pressed to it was dripping in blood. (The gash healed fine without stitches.)

“Your suture joint isn’t moving like it should,” the massage therapist offered.

I returned to Google to learn about the skull and the facial nerve. This nerve is one of a dozen cranial nerves, meaning that it originates within the skull in the brain stem, not in the spinal cord. Cranial nerves have to make their way out of the skull, and the facial nerve slips through a tiny hole just below the ear. These photos helped me understand the peril the facial nerve is in if it ever gets inflamed and swells. No room to expand. Damage will be done.

From http://www.fauquierent.net/facialparalysis.htm

From http://www.fauquierent.net/facialparalysis.htm

Did the bump on the head displace my cranial bones just enough to put pressure on the facial nerve? I may never know. It’s a good theory, though.

As the days go by, I find myself adjusting. I pay more attention—a lot more—when eating and drinking. A little lip motion has returned, so my mouth can actively kiss my sweetie a wee bit more, though he still encounters limp-fish lips, I’m afraid. Lucky me, he doesn’t seem to mind. After one day of searching out my new face, he adjusted to the changes and didn’t give me a second glance. In a good way, I mean. No extra attention, the unwanted kind.

The bigger adjusting is taking place inside. My sense of loss has deepened as the days go by. One moment I barely notice the impairment; the next I feel like chopping heads. Grief has moved in like an unwashed roommate, one I hadn’t needed to make space for in a while.

I find myself thinking of friends whose bodies were injured. My paraplegic athlete friend who water-skis, bikes, skydives, and beats me at Words with Friends. The photojournalist friend who died of ALS last year, a high-spirited woman who cracked jokes during all the years we watched her lose the ability to move her feet, then her hands and arms, then her eyes. The orchestra conductor in college who, after a surgery near his ear, returned to the podium with slurred speech and a half-working face, his verve for the music undimmed. The cousin across the country who in high school nearly died from a fever that left her muscles jerky, who went on to get married and raise a family, including twin boys, and is now enjoying her grandchildren.

I find myself sending a silent thanks to each one—for dealing with what life handed them. For adjusting to what is possible. For enjoying their life whatever shape it took. It is a powerful thing to watch someone enjoy life—and I am grateful to each one for finding the equanimity to do that. I imagine it took some work.

I send each of them a thank-you especially for being themselves no matter what. Because a deeper layer here is how I see myself, and how others see me. Getting your face moved around without your permission is, at best, unnerving. (Literally true this time!) Now I hesitate a bit before going out in public—and I have some very public events coming up soon, like a radio interview and a book reading. Will I be brave enough to do them? Will I have the energy? I guess we’ll find out.

A spiritual path has a lot to say about becoming disfigured, even temporarily. My own path is teaching me about looking below the surface for what’s real instead of stopping at appearances. In a meditative journey this week one Spirit Helper observed that modern culture, unlike more Spirit-centered cultures of the past, looks almost entirely on the surface of things, prioritizing how people look, and that one gift of this facial challenge is that I, who can get caught up in that tendency (it was clearly said) am being invited to rearrange my priorities and live a freer life. The words were offered gently, but I got the point. (Concerned about appearances—what, who, me?) This same wise friend added that anytime priorities get rearranged, feelings of grief will arise.

My spiritual path has provided comfort too. The day I came down with this malady, but before I knew it was happening, in a meditative journey I was shown the joy that bubbles into physical reality out of its mysterious, hidden source. From the tiniest plants in the garden to the body of each person to every point in outer space, reality boils over with rollicking, roiling joy; each body is its visible presence, each of us its outgrowth. Joy is the switch that turns us on at the start, joy the fuel that grows us, and joy the creative fingers that stitch together all wounds, from the scar in the tree bark to the intricate human heart.

It was a marvelous picture, and I have returned to it time and again this week. I believe it was given for that purpose. When feelings of sadness and loss arrive, I attend to them, and they pass. And when they pass I root myself again in growing things; I see again their source in irrepressible joy.

This is, after all, how nature heals—by offering its flow of unstoppable creativity, its endless gleeful variety, its untamed urge to generate and grow.

I suspect the closer I live to this source, the more easily a facial nerve will regenerate.

Oh, and it doesn’t hurt to know that George Clooney had Bell’s palsy once. For nine months. In ninth grade, poor guy.

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23 Responses to Living with Bell’s palsy

  1. karen kirsch says:December 7, 2014 at 5:59 pm

    thank you for sharing this. your courage and candor are inspiring and I wish you all the best in this challenging time.

    • Priscilla Stuckey, PhD says:December 8, 2014 at 9:16 am

      Thank you, Karen! And thanks for stopping by.

  2. I had Lyme Disease & Bell’s Palsy in 1984 when I was still living in NJ. My then toddler son & I had visited friends in Old Lyme, CT. I couldn’t stay awake. At that time, no one was diagnosing Lyme’s, especially not the HMO to which I belonged. They took my vitals each time, and my blood pressure kept getting lower — with no explanation.

    After several unproductive visits to the HMO complaining of increasing exhaustion and wondering whether it was mono or Barr-Epstein, I discovered a round red circle on my leg. The doctor du jour said it was ringworm. I asked how one gets ringworm. “Locker rooms,” was the response. That was impossible.

    At one point, I left my not-yet-2-year-old at his sitter’s for a week. My vision started blurring, and one morning, I woke up with the right side of my face numb. I called the HMO, got an appointment that day. A friend drove me. The doctor said I had to see their neurologist, who had been at the North Bergen, NJ location the previous day but wouldn’t be back for two weeks.

    They made an appoinmentt for me in midtown Manhattan. I dragged myself into the city on the bus, took a taxi across town (an extravagance I rarely allowed myself) and found out that no one had told the neurologist that he had an added final appointment of the day. He had left for the facility up in Harlem.

    Another cab ride. When the doctor finally saw me, he had me close my eyes and tapped around my right cheek with cotton and then a needle, asking me when I felt something. He finally said, “You didn’t have a stroke.” I said that I had no blood pressure (it was 85/40), so I didn’t think I had a stroke. “And you don’t have cancer,” he added. I said I didn’t think I had gotten cancer overnight and then said, “Please don’t tell me what I don’t have. Tell me what I do.”

    “Bell’s Palsy,” he replied. No one knew what caused it and there was no cure. It came and went at will, he said. I took a cab back to the bus terminal (no problem for a white woman to catch a south-bound cab in Harlem), and when I got to my stop, I practically fell off the bus in my exhaustion.

    That afternoon, my ex came to get some clothes for our son, whom he was picking up from the sitter’s. I asked him to get me some orange juice. He went across the street to Nellie’s corner store run by a wizened little lady. Nellie had see me dragging myself down the street and asked him if I had Bell’s Palsy. “My sister once had it,” Nellie told him.

    The next day, a neighbor came to look in on me and said that she had told a mutual friend what my symptoms were. Our friend Michele had read something about Bell’s in “Woman’s Day” or “Family Circle.” Bottom line is that I was chasing a neurologist all over NY in by taxi, and I got an accurate diagnosis from Nellie and a second opinion from Michele.

    Finally, I went back to the HMO and insisted that they do bloodwork, which they hadn’t. The results eventually came back normal (not even anemia), but I did start believing in blood-letting or leeches. Within a couple of days after the blood was drawn, I started feeling better after 6 or 7 weeks of utter exhaustion. Within 10 days, my energy level was normal.

    Several years later, when I was already in Colorado, my ex called me to tell me that he had heard a report about Lyme Disease on NPR. That red circle that wasn’t ringworm had been the telltale sign where the tick had bitten me. I don’t remember a bite at all but might have thought at the time that it was a mosquito.

    I’ve not had any residual effects other than that my right eye, once the stronger, is now my weaker eye.

    Hope you recover totally too.

    • Priscilla Stuckey, PhD says:December 8, 2014 at 9:21 am

      Thanks, Claire! I love that Nellie and Michele provided your diagnosis and second opinion! Glad yours healed up completely. But, bloodletting??

  3. Deb Matlock says:December 7, 2014 at 8:27 pm

    Priscilla, Your strength and wisdom are so very admirable! I wish you continued strength as you move through your healing process. ~Deb

    • Priscilla Stuckey, PhD says:December 8, 2014 at 9:25 am

      Deb, your story belongs here too! Sending thanks to you for having the grace to accept an injury and move forward from there. I hope your healing is going swimmingly! And that it takes you in the best directions possible.

  4. This is a lovely post, Priscilla. My sister had Bell’s palsy, and she’s fine.

    • Priscilla Stuckey, PhD says:December 8, 2014 at 9:27 am

      Beth, thanks for the reminder that people usually heal completely from this. I’m glad for your sister! Thanks for stopping in.

  5. Kevin O'Shea says:December 7, 2014 at 8:34 pm

    I experienced Bell’s Palsy several years ago. I’m thankful it healed after a relatively short time. I’m not sure what triggered it, but it occurred up in the mountains on a camping trip. It was scary at first; I thought it might be a stroke. It also messed with my self image. Once I accepted what was going on I entertained the kids by drinking water an letting it dribble out of my mouth. I hope I learned a little compassion and a little less attachment to the picture I carry around of what I am supposed to look like. I hope you heal soon. I will send good thoughts. Be Well.

    I am in the middle of your book, “Kissed by a Fox.”
    I have always felt a connection with nature at some level that you have articulated so well in your book. Thank You.

    • Priscilla Stuckey, PhD says:December 8, 2014 at 9:38 am

      Hi, Kevin, thanks for your good words! What a beautifully healing picture–the kids cracking up while their dad is being silly. I know just how that dribbling feels. Thanks for that!

  6. Ah, dear Priscilla. Sorry to hear you’re going through all this.
    I was struck by your vision that “reality boils over with rollicking, roiling joy,” as I had a very similar vision when extremely ill with Graves Disease. Perhaps that is the grace in this sort of brokenness: the light of deeper reality can really trickle in.
    My heart is with you, sister.
    Tina

    • Priscilla Stuckey, PhD says:December 8, 2014 at 9:39 am

      Yes, the Universe does not leave us comfortless. The trick is to remember that shining all the rest of the time, isn’t it? Thanks so much for your love & good wishes!

  7. Priscilla, I’d never heard of Bell’s palsy and am sorry I had to learn of it through your very personal experience. You are an otherwise healthy, positive, strong woman, so I am hoping you will recover completely! You write about your challenge with gentleness and humor. Sending lots of healing strength.

    • Priscilla Stuckey, PhD says:December 8, 2014 at 8:24 pm

      Thanks so much, Jody, for your good wishes! I think the odds are good for complete recovery. Every few days there is a teensy bit more motion. This morning I woke to a hint of greater strength in the lips. Happy sign!

  8. Dave Sutherland says:December 9, 2014 at 7:30 am

    Wow, what a story. Best of luck – and i am delighted you are treating it as a life lesson! Reminds me of the journey we’ve been on since Jennifer had her stroke, now almost 10 years ago.

    • Priscilla Stuckey, PhD says:December 9, 2014 at 2:45 pm

      Your and Jen’s story belongs here too! Talk about enjoying life—I learn from you. Thanks!

  9. Dear Priscilla, I’m so sorry to hear about your troubles. The first larger surgery I had to have on my face due to skin cancer changed my looks and it was a really big mental adjustment, especially coming along with getting older. For me, too, there came a time of needing to reexamine my beliefs about outer appearances, to say this is who I am now and I’d better set aside my vanity and just get on with things. It has been enlightening to read about so many people’s experiences with Bell’s Palsy, something I knew nothing about. It sounds like your condition is improving and I’m holding you in my thoughts for a full recovery. You will always be beautiful inside and out regardless of whether or not some minor physical dissonance remains.

    • Priscilla Stuckey, PhD says:December 9, 2014 at 4:57 pm

      Thanks so much for your good wishes! Life has a way of growing us up, doesn’t it—like it or not! So many more fun things to do than worry about appearance. Still riding your Harley?

  10. I’m sure you’ll heal soon. A friend had it for a couple of months. He got some acupuncture, though he wasn’t sure that it helped, but you never know! Every physical ailment provides a different lesson–but there are some you just wish you didn’t have to endure.

    Be well!

    • Priscilla Stuckey, PhD says:December 12, 2014 at 8:23 am

      Thank you, Laurel!

  11. Glenda Guss says:December 11, 2014 at 8:35 am

    I’m heartened by the prospect of your recovering from the Bell’s Palsy. As you move through the slow healing process, I imagine you will gain insights that will aid you in regaining your health. You are awesome.

    • Priscilla Stuckey, PhD says:December 12, 2014 at 8:34 am

      Thanks for the good words, Glenda! It seems that healing is like a herding dog, nudging us always toward a better place. We may not want to go there, but oh, that nipping at the heels . . .

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