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This week’s sensory adventure: VESTIBULAR HAVOC!

After a relatively calm period of somewhat regulated senses, I must admit I’ve had some unusual sensory experiences recently.

This sentence from my book “Moving Forward: Reflection on Autism, Neurodiversity, Brain Surgery, and Faith” describes yesterday’s brain antics perfectly:

“I now realize I have no need to go to amusement parks anymore…I have one inside of my head…” (p.115)

Since my brain surgery, I have had significant vestibular issues. My situation improved greatly when I started wearing Irlen spectral filters, but since I have a damaged vestibular nerve and nystagmus in my left eye, they don’t solve the problem entirely.

We went on a day trip to Jerusalem (my favorite city!), which is an hour and a half drive from my home on a windy mountain road. The view was beautiful but knocked me a bit off-kilter. We then spent the day visiting people, all pleasurable, but it was definitely tiring and a bit overstimulating to engage in hours of conversation.

It’s important to understand that even if something is pleasurable- if someone has sensory challenges, is tired or overstimulated, their brain is much less likely to cope with additional sensory demands- and sensory overloads can easily occur.

Being that I am pretty short, I suggested I sit in the back seat so that the taller passengers would have more legroom. I didn’t anticipate having a problem. But lo and behold, halfway home, with no place to pull over and change places, I realized that, OOPS, big mistake- my vestibular system had gone AWOL.

I suddenly felt as if I was riding on a high-speed roller coaster in space. The lights from the cars around us began to merge into a sea of spiky red and white spirals. The voices of everyone chatting in the car blended into a strangely sounding tune. I became lost in space and had to concentrate on keeping my lunch in place (fortunately, I managed to.)

I closed my eyes to try and alleviate some of the incoming stimulation, but nevertheless, I could feel the lights and sounds penetrating my senses as the car sped along the “rollercoaster highway” for the next 20 minutes.

Finally, whew, we arrived home. The car stopped moving, but the spinning in my brain definitely didn’t. I waited a bit, then bravely took my cane and exited the car, only to realize that my legs had turned into jelly. Luckily my husband was right beside me and caught me before I kissed the street.

We proceeded to wobble like drunk ducks across the parking lot, joking and laughing at how ridiculous the situation was.

And although I felt totally awful and nauseous, I found the situation fascinating and hilarious. I’m always amazed at how my brain simply shuts off parts of my body or sends me to visit amusement parks or distant planets.

It’s now a day later; I’m still trying to land. How long do you think it will take?

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Jacki Edry

Jacki Edry

Jacki Edry is a graduate of Hampshire College and has an extensive background in education, writing, and marketing. She has been exploring the world of autism and neurodiversity for over thirty-five years. 

2 Responses

  1. Jackie, that sounds pretty extreme. I’m a marathon kayaker and we use very unstable boats (designed for speed). I’ve never been able to paddle after dusk as I cannot keep my balance. Only if I can see can I stay in the boat!

    1. Thanks, Gary, it was! I completely understand what you are saying. What a great sport; the best I could do was canoe on whitewater, a million years ago. Thanks for sharing!

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Moving Forward  is a journey between the worlds of autism, neurodiversity, brain surgery recovery, and faith. It provides a rare glimpse into how sensory and neurological processing affect functioning and thought, through the eyes of a professional, parent, and woman who has experienced them firsthand.

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