Friday, October 6, 2017

When the Bell's tolled


Pic Credit: Huffington Post
To the person who’s reading this: If you’re going through Bell’s, I hope my journal 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. Trust me, it’s beautiful! Not every change feels positive in the beginning! More strength to you! Get well soon!
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6th September, 2017. A normal Wednesday afternoon, 30 days ago. It starts out as a normal throat infection, or so she thinks. The pain just behind her right ear bothers her a lot. So she trots out to the nearest ENT. Armed with an illegible handwritten doctor’s note and a handful of medicines including the obvious course of antibiotics, she comes back home. Over the next two days, the throat pain is all but gone. The ear is another story altogether. She feels an inflammation behind the ear, a nerve pull that tugs at the top right portion of her head. Friday morning, she can take it no more and her husband drives her over to the general physician. On the way ‘Channa Mereya’ plays on the radio, a song she has heard hundreds of times. She cannot figure out whether the lead singer is singing or if it’s just music, whether it’s a remix version or the original. Her husband is taken aback by her questions. The song is playing at the usual volume. Her hearing’s gone for a toss. 

The GP does his checks. He tells her he suspects Bell’s palsy. She has no clue what he’s talking about. He tells her 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 her splitting neural headache is too much for her to bear and 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. He tells her a couple of face exercises (blowing cheeks, whistling) to be done every couple of hours and sends her on her way. She’s told to call as soon as she feels a hint of facial weakness.

She spends the weekend away with family. Saturday goes by in a painful stupor. Sunday morning, she sits on the bed trying to do her exercises and she can do them no more. The right side of her face slumps. She breaks down. She thinks she could just say goodbye to the folks she’s with and leave. But then someone cracks a joke and they all laugh. And she sees the shock and confusion on their faces. And she breaks down yet again. Her husband calls the doctor immediately who gets her started on a dosage of steroids. These are to continue for a month, dosages tapering every 5 days. They return on Sunday night. She’s told to start with current induced stimulations on Monday. By now, their families are shaken.

Over the next week and a half, she cannot blink. Her 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 her rescue so that she can get some sleep. Her speech is slurred, drawn out in slow long drawling words. Chewing, food and water intake are tough. Her smile and boisterous laughter skew her face. Expressions do not cause any kind of movement on the right side of the face.

During this time, she sees those closest to her break down at various times. People she has always seen as strong, steadfast, sane heads. She is usually the emotionally weak one. And then one fine day, right out of nowhere, she feels stronger. Just like that, the roles are reversed. The consolee becomes the consoler. Her family and her dearest friends come through for her, always being there for her – painstakingly tolerating her quirks, doing odd jobs, reading to her, gifting her a spa session, taking time off to be with her and her heart swells at the love and care she witnesses.

Her initial sessions of physiotherapy are painful. They start with 35 spurts each of surged faradic current for 15 motor points on the face. She learns about the frontalis, buxinator, mentalis and orbicularis oculi facial muscles. She 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. She learns about Grade I palsy – recovery in a month and Grade II palsy – recovery within 6 months. The first couple of times, the current on her nose feels like it would saw it through. Several times she feels her teeth gnash and she wonders if she will need to see a dentist next. But her pain tolerance is up several notches. Only twice in 23 continuous days of physiotherapy does she break down – neither time due to physical pain. She re-learns to say the A-E-I-O-U – the O first coming out as Awww because the mouth wouldn’t close. She blows balloons, blows out candles, blows air and sucks through a straw as part of the exercise regimen. And sometimes she giggles at the absurdity of it all.

To manage the weight gain side-effect of steroids, she takes to walking like a fish to water. She tries to read to keep herself busy. The first week she can barely manage 10 minute sessions. It improves significantly over the next three weeks. She solves a 500 piece jigsaw puzzle – patiently working through it in intervals. She shops online like there’s no tomorrow. Her family and closest circle of friends become her lifeline – those who cannot visit check in on her continuously – their concern apparent in their care and enquiries. She makes ‘getting on my nerves’ kind of crass jokes which they make faces at, but she laughs at her own sense of humour. Several times over the month, she feels overwhelmed with a sense of gratitude – of this much love and care and the feeling of being taken care of.

She shares a great rapport with the physiotherapist, Dr. Shwetali Sachdev, who’s a smart, driven woman, passionate about her work. During her sessions, they talk 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 the same amount of dedication without breaking a sweat.

She meets a 9th standard student who’s been coming for six months. The girl has Grade II palsy and not once does she see her complain. She hears of an IT guy from Amsterdam who contracts Bell’s just before his return and starts physio here. People at work are supportive, understanding her need for having taken a whole month off. They juggle the additional workload and call in from time to time. Through the month she’s greeted with simple acts of kindness from random strangers, even strangers who do not realize that she has an ailment and are just being nice. Deeds that bolster her faith in humanity even more. Not that it ever needed any support. Her faith in grass root humanity has always superseded her helpless frustration with some degenerate ones from the human race.

Days turn to weeks, weeks to a month. It’s been 30 days and the recovery has been tremendous. The last week has been more a rejuvenation vacation complete with TLC from every nook and corner. Her exercises are still to continue for a while but she feels amazing and stronger than ever. Her BIL thinks she’s such a fighter – well he hasn’t seen the cribber in her! Her sister is surprised with the sudden positivity. She does not know if it will last, but she sure hopes it does. Some tell her it could have happened owing to an evil eye and tell her to ward it off. And she looks around and wonders – even if that were to be true, she has unimaginable love, care and strength coming to her from her near and dear ones, faith and oneness with life coursing through her, and a feeling of gratefulness despite it all. Or maybe, because of it all. What does she 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. 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!

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