Bell’s Palsy: My Tour Guide to Autism

bp2In the past couple of years, some clever people have created online autism simulations. Autism simulations attempt to sensitize neurotypical people to what those with autism experience on a daily basis. When you play an online autism simulation video, you’re immediately bombarded with confusing sensory input – loud and discordant sound, bright lights, and camera movements that cause vestibular discomfort. Voices and background noise become one, and the busy world suddenly becomes an unpleasant place in which to reside.

But it’s just a video. Two minutes of noise and visual chaos, and you’re done. I’ve watched them. And, while I appreciate what the creators aim to accomplish with them, I’ve understood that I wasn’t greatly enlightened by the experience.

Bell’s Palsy changed everything.

Four months ago, I pulled into my workplace, got out of my car, and attempted to smile at a co-worker. That’s when I realized half of my face wasn’t working. I walked inside, looked in a mirror, and decided I was having a stroke. After a quick trip to the ER and a brain scan, it was determined that I had simply come down with Bell’s Palsy, a form of facial paralysis resulting from damage to the facial nerves. Relieved that it wasn’t something life-limiting, I returned to work and attempted to feign a positive attitude about my now jarring facial expression.

As it turns out, I had a pretty bad case of Bell’s Palsy. Within a day, my face became overly sensitive. The slightest touch of a fingertip was painful. A fan blowing on my face made my head ache. Because my left eye wouldn’t close properly and I couldn’t squint, bright light became problematic. I could barely see upon stepping outdoors, and bright indoor lighting was disturbing to me. My eyes blinking at different times upset my vision.

But the worst was yet to come. Within two days, the Bell’s Palsy had worsened. And, because I had complete facial paralysis, the muscles that normally dampen sound ceased to work. The condition is officially called hyperacusis, but I called it Superman Hearing. Suddenly, I could hear everything – the filter on the fish tank, the ceiling fan in the other room, the pop in my husband’s jaw as he ate. But it wasn’t simply a matter of hearing everything. The problem was that it was all at the same volume. So, everything became too much. I nearly went into a panic at work. The school bells were painful to me. A pencil dropping on to a desk made me jump. I had to ask everyone to lower their voices, and I couldn’t tolerate radio or TV. I donned headphones and tried not to cry. But my voice amplified inside my head with the headphones on, so I couldn’t tolerate speaking with others. All I wanted was to curl up in a ball in bed in the dark and wish the world away. Because the world? It hurt me.

And – although I’d comprehended that sensory integration issues impacted my autistic child – I now look at him with all new eyes. Because of this experience, he’s even more amazing to me. Amazing in that he walks through life experiencing this (though I’m certain it’s probably not exactly the same) every day. Whereas I shut down for a few days and hid out during the worst of it, he isn’t given that option. He’s 5 years old, and the world is attacking him. When I’m alone with my thoughts and consider that, it steals my breath. And when he curls up in a ball and hides out from the world for a few minutes, I find myself understanding in a way I couldn’t have before.

Did Bell’s Palsy make me autistic? Of course not. Do I now have a complete understanding of the autistic experience? Nope – not even close. Because Bell’s Palsy did not affect my ability to communicate. It didn’t alter how I perceive others. It didn’t change the way I process new information. I still think in words and not pictures.

But Bell’s Palsy did act as a tour guide of sorts. It took me to a place I’d never been and pointed out some key areas I wouldn’t have discovered on my own. It gave me an experience merely reading about couldn’t afford me. It allowed me to see my son and his reactions to the world with a different lens. It isn’t often that we get to live as others before returning to our own lives. But when we do, we are changed – forever reminded that our own perceptions are just that, perceptions. When you realize that your perceptions aren’t necessarily facts, then all manner of truths and possibilities open for you.

So, despite the residual paralysis, pain, and hearing and vision issues I’m still experiencing, I understand this lesson to have been both painful as well as a gift.

Of course, the most valuable lessons in life usually are.

 

5 thoughts on “Bell’s Palsy: My Tour Guide to Autism

  1. Anonymous

    This is an excellent post. I am autistic and I have always thought that it was the neurotypicals who were disabled. All those things you heard so clearly during that period of time were real. None of it was a hallucination. For the first time in your life, you experienced the world as it really is, on the auditory level anyway.

    Some people have argued that the neurotypical sensory filters are a good thing. But I disagree. I have noticed things that bother me in certain places, fluorescent lighting, a constant hum or buzz, things that are below the threshold of perception for most neurotypicals. But I think they are still affected by what they don’t notice, even if they don’t realize what the source of it is. Bad lighting, or flickering lighting, for example, can give people a headache over time. Neurotypicals might not even notice it until they suddenly have the headache, and then they won’t have a clue where the headache came from. Autistics, on the other hand, are often quite aware of it from the first moment, and are also very aware that over time it will cause a headache. They will try to avoid such environments, and they will often be ridiculed for it, usually by a neurotypical who will probably develop a headache an hour later and have no idea why.

    One more comment about this great post, on the topic of perceiving the world the way that others do. A couple of months ago I read the book The Doors of Perception by Aldous Huxley. He wrote it about a mescalin experience, which he did as an experiment because he was hoping to experience the world the way the artists do. I thought the book would probably be like a psychedelic diary of a drug experience. But it was actually very insightful. Many times throughout the book I felt like the people he was describing were the autistics of the world. He wrote it in the fifties and no one knew about autistics back then, but everyone had certainly met one or two of us. He spends a lot of time talking about people who are very perceptive, or very sensitive, extremely creative, and quite eccentric. He seems to envy these people and volunteered to participate in a mescalin experience in the hope that he might gain some insight into how such people perceive the world. If you are interested in the topic of perceiving the world the way others do, I would highly recommend The Doors of Perception. I feel like people could learn a lot about autism, and neurodiversity in general, from a book like that.

  2. Full Spectrum Mama

    Um…wow! I really had no idea where you’d be going with this but the title was intriguing.
    I do agree the most valuable lessons can be hard won.
    Love the “photographic evidence.”

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