By Manthan Pathak.
In the last week of January this year, I developed an infection which caused painful hardening of skin inside and around my nose. I made an appointment to see my GP, reminded of a similar condition that caused someone close to me to be prescribed antibiotics recently. I expected a quick visit and a swift resolution to a minor issue.
I left the surgery stricken with fear and anxiety. I hadn’t looked in the mirror with much care that morning, and my GP told me straight away that one half of my face was visibly lower than the other. She asked me to try and raise my eyebrows and to smile and took photos of each expression. I was shocked when she showed me the images of a face I could barely recognise.
One eyebrow was raised while the other was unmoved and the lines on my forehead only appeared above the raised eyebrow. Much more shocking was the image of a crooked half-smile pronounced on one side of my face. It somehow looked at once both sinister and demented. Immediately I felt like crying. She told me I’d either suffered a stroke or had a condition known as Bell’s Palsy, causing paralysis of one side of the face, and should go to hospital as soon as possible.
I could feel my heart beating furiously as I walked home, and tried to calm myself. I Googled Bell’s Palsy and noted the common causes were exactly what I ‘d been experiencing: a viral infection and stress, allied to being a diabetic, and spent a long time examining my contorted face in the mirror. I couldn’t close my left eye at all, and the left side of the mouth barely opened. The left canal of my nose was running and my ear was painfully ringing. This was the beginning of ‘peak’ Bell’s Palsy, said to last for a few days, but for me felt like at least a week.
Following a visit to A&E where I was seen mercifully quickly, tests were run, and despite a junior doctor being convinced I’d had a stroke, I was diagnosed with Bell’s Palsy. I left with a prescription for steroids and instructed to visit Eye Casualty the following morning,
Difficulties with my eye have overwhelmingly been the biggest problem I’ve faced since then. The burning pain caused by being unable to blink can be genuinely intolerable, while the sensation of having a piece of glass stuck in my eye as debris is allowed to collect inside the socket uncommonly painful. Often the only solution is to tape it shut and lie down, and somehow that feels like failure.
And while the physical symptoms are unpleasant, it’s the psychological toll that has been the greatest. Because I can’t open my mouth fully, my speech has been affected. Plosive sounds (words beginning with b and d for example) are difficult to articulate, and it’s a real effort to speak at length. Conversations feel tiring and just aren’t easy, and so I avoid them. It’s left me feeling isolated and alone.
More than that, suddenly I’m anxious about my appearance, something that never really afflicted me before. I didn’t pay much attention to how I looked for as long as I can remember, deliberately so, convinced that vanity is a social illness that I wanted to distance myself from. I can reflect now that was a privilege I didn’t recognise. I’ve thought about people who might obsess about how they look, and learned to not so quickly dismiss them as superficial, but to allow for the possibility that insecurity, as with me, might lie underneath. As for me, I’ve rarely gone out.
Most of all, I’m conscious of how I look when I smile, afraid of how people might react. It feels incredibly sad to even write the awful truth that I try not to smile around others, especially my young nephew and niece. I joined a support group on Facebook, which has both reassured and terrified me. I’ve learned some useful tips to accelerate recovery, but also read many stories from those poor souls still suffering greatly after years. Most of them say the very same thing that I feel: that they want their smile back.
While this condition might be transient — and might not be — it’s led to me to consider the way that society looks at disabled people. It’s the subject of Is There Anybody Out There?, an enlightening documentary by Ella Glendining, who suffers from PFFD, which means she was born without hip joints or femurs. She makes a compelling argument that there is a dangerous assumption that disability is a problem to be corrected, and therefore disabled people are viewed as problems too. I’d never understood ableism with as much clarity before.
Even the word palsy is loaded with a terrifying weight of something alien, at least to my mind, when it simply means paralysis. In the beginning of this journey, I’d wake up sweating with the realisation that that term applied to me. I’m not frightened of the word anymore, and that in itself feels like a small victory.
Now, nearly six weeks after being diagnosed I can say that there has been some improvement: I can raise both eyebrows, if not quite at the same level, can close my eye a little, although I still need to tape it shut at night to prevent infection. I can also see another tooth when I smile, and while none of that can be described as a massive change, it’s given me hope when I desperately needed it. I’ve read that full recovery can occur between 3 weeks and 3 to 5 months, after which it becomes much more difficult, so I’m hanging in there, pretending to be brave.
If you or someone who know is suffering from Bell’s Palsy you can find the online support group here.
Facial Palsy UK has a useful explanation of Bell’s Palsy here.
And have produced a number of videos demonstrating exercises to aid recovery: click here.
If you’d like to get in touch I can be reached at: theoneandonlymanthan@gmail.com
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