When the Bell's tolled

To the person who’s reading this: If you’re going through Bell’s (or anything that has pulled you down momentarily), I hope the narrative below gives you some relatable comfort. Remember you’re strong. Much stronger than what you’re going through. Stay patient and stay positive. And now that what was to happen has happened, take this time to slow down a bit and appreciate people and life around you. Life is beautiful! Not every change feels positive in the beginning! More strength to you! Get well soon!

Pic Credit: Huffington Post

6th September, 2017. A normal Wednesday afternoon, 30 days ago. It starts out as a normal throat infection, or so I think. The pain just behind my right ear bothers me a lot. So I trot out to the nearest ENT. Armed with an illegible handwritten doctor’s note and a handful of medicines including the obvious course of antibiotics, I come back home. Over the next two days, the throat pain gets worse. The ear is another story altogether. I feel an inflammation behind the ear, a nerve pull that tugs at the top right portion of my head. By Friday morning, I can take it no more and my husband drives me over to the general physician. On the way ‘Channa Mereya’ plays on the radio, a song I have heard hundreds of times. I cannot figure out whether the lead singer is singing or if it’s just music, whether it’s a remix version or the original. My husband is taken aback by my questions. The original song is playing at the usual volume. My hearing’s gone for a toss. 

The GP does his checks. He tells me he suspects Bell’s palsy. I have no clue what he’s talking about. He tells me it’s a temporary neurological ailment where the virus (anything simple like the flu) affects the facial nerve that causes temporary facial paralysis. Read here for more. It does not sink in. Or maybe my splitting neural headache is too much for me to bear plus focus on what he’s saying. Because it’s not confirmed yet, he cannot recommend medicines. And if it’s indeed Bell’s, there’s no stopping it. It can only be treated, not prevented. We tell him we need to travel to a wedding. He tells me a couple of facial exercises (blowing cheeks, whistling) to be done every couple of hours and sends me on my way. I am told to call as soon as I feels a hint of facial weakness.

We spend the weekend away at the wedding. Saturday goes by in a painful stupor. Sunday morning, I sit on the bed trying to do my diagnostic facial exercises and I realize I am unable to do them anymore. The right side of my face does not move. I break down. I think of just saying goodbye to the folks we are with, and leave. But then someone cracks a joke and we all laugh. And I see the shock and confusion on their faces when they see my half crooked face. And I break down yet again. My husband calls the doctor immediately who gets me started on a dosage of steroids. These are to continue for a month, dosages tapering every 5 days. We bid goodbyes and leave. 

On the way to the airport, we stop at a restaurant. The stomach still needs food. I try to avoid looking at anyone. But I am unable to use the straw anymore. My lips won't close to hold it in place. And for the first time in a very long time, I see my husband feel helpless and tear up. My tears run non stop. The left one, genuine emotions. The right one simply because it cannot blink anymore. We return on Sunday night. I am instructed to start with physiotherapy and current induced stimulations on Monday. By now, our families are shaken.

Over the next week and a half, I cannot blink. My right eye stays open, and waters continuously. Unable to find a pirate patch at the medical stores, an old Qatar airlines overnight sleep patch comes to my rescue so that I can get some sleep. My speech is slurred because my lips can't close or move fully causing issues with letters like B, P, O, and sentences are drawn out in slow long words. Chewing food and water intake are tough. My smile and boisterous laughter at times skew my face. I look deformed. Expressions do not cause any kind of movement on the right side of the face.

During this time, I see those closest to me break down at various times. People I have always seen as strong, steadfast, sane heads. Pillars. My sister, my father. (I was the more emotional impulsive one). They cannot bear to see that the one who was usually energetic and a confident orator, is now struggling to even spell A-E-I-O-U. And there is nothing I can do about it. 

My initial sessions of physiotherapy are horribly painful. They start with 35 spurts each of surged faradic current for 15 motor points on the face. I learn about the frontalis, buxinator, mentalis and orbicularis oculi facial muscles. I learns about the number of expressions controlled by the 7th cranial nerve – surprise, frown, nose lift, cheek blow, whistling, pout, smile, grin, eye closure and so on. I learn about Grade I palsy – recovery in a month and Grade II palsy – recovery within 6 months. The first couple of times, the current on my nose feels like it would saw it through. I touch to see if there's blood, or bone sticking out. But it's probably more mental than physical. Several times I feel my teeth gnash and I wonder if I will need to see a dentist next. But my pain tolerance is up several notches now. Only twice in 23 continuous days of physiotherapy do I break down – neither of these due to physical pain. Always, the emotional. It's tough. I won't deny it. I re-learn to say the A-E-I-O-U – the O first coming out as Awww because the mouth won't close. I try to blow balloons, candles, air and suck through a straw as part of the exercise regimen. I break down when I cannot blow out a candle. At 36. Even a baby can do that with a birthday cake. And sometimes I giggle at the absurdity of it all.

To manage the weight gain side-effect of steroids, I take to walking like a fish to water. I try to read to keep myself busy but the right eye waters continuously. The first week I can barely manage 10 minute sessions. It improves significantly over the next three weeks. I solve a 500 piece jigsaw puzzle over 6 weeks – patiently working through it in intervals. I shop online like there’s no tomorrow, and I don't even like shopping. 

My family and my dearest friends come through for me, always being there for me – painstakingly tolerating my quirks, doing odd jobs for me, reading to me, gifting me a spa session, taking time off to be with me and my heart swells at the love and care I witness. I make ‘getting on my nerves’ kind of crass jokes which they make 'not funny' faces at, but I laugh at my own sense of humour. I honestly don't know where that strength comes from. But I realize this is changing me, growing me. It still is painful - physically and emotionally. But I feel stronger mentally. Guess, when you have no option but to be strong, what else can you do? Just like that, the roles are reversed. The consolee becomes the consoler. 

I enjoy working with my physiotherapist, Dr. Shwetali Sachdev, who’s a smart, driven woman, passionate about her work. During her sessions, we talk (well, she talks, I mumble with weird syllables) about a number of things ranging from politics to shopping, travel and more. It must not be easy treating patients with the same stimulations over and over, counting 1-15 for 15 exercises and 35-45 stimulations for 15 motor muscles every single day, day after day. Yet, the doctor does it with a consistent amount of dedication without breaking a sweat.

I meet a 9th standard student who’s been coming to physiotherapy for six months. The girl has Grade II palsy and not once do I see her complain. Her mother tells me about her attending school, tuitions and then coming over for physio every alternate day. I hear of an IT guy from Amsterdam who contracts Bell’s just before his return there, and starts physio here. People at work are supportive, understanding my need for having taken 6 weeks off. They juggle the additional workload and check in from time to time. Through the month I am greeted with simple acts of kindness from random strangers, even strangers who do not realize that I have an ailment and are just being nice. Deeds that bolster my faith in humanity even more. Not that it ever needed any reinforcement. My faith in grass root humanity has always superseded my helpless frustration with some degenerate ones from the human race.

Days turn to weeks, weeks to a month, and then some. It’s been 40 days and the recovery has been tremendous. The sessions now become more of a rejuvenation complete with TLC from every nook and corner. My exercises are still to continue for a while but I feel stronger than ever. My BIL thinks I am such a fighter – well he hasn’t seen the cribber in me earlier! My sister is surprised with the sudden continuous positivity. I do not know if it will last, but I sure plan to make sure it does. Some tell me it could have happened owing to an evil eye and tell me to ward it off. And I look around and wonder – even if that were to be true, I have unimaginable love, care and strength coming to me from my near and dear ones, faith and oneness with life coursing through me, and a feeling of gratitude despite it all. Or maybe, because of it all. What do I really have to fear then? Life is still good and will continue to be good. Sure, there will be ups and down, but hey – we get through it. And sometimes, we even come out shining!

Note: Bell’s Palsy affects over a million people in India every year, that’s 1% of the population. But it is getting more common. Grade I and Grade II are dependent on the severity of infection – Grade II being more severe and takes 6 months or more to heal. There is no algorithm to the way it affects people, it is just pure luck. Because the virus is airborne and more prone to spread during colder climate, it’s best to take precautions during the rainy and winter seasons and at colder places – making sure that ears are covered as one steps out. Having a strong immunity is obviously recommended. The good thing is Bell’s is 100% recoverable, all one needs is patience and endurance. Needless to say, TLC always helps!