MS Has Changed the Way I Experience the World
Last updated: June 2018
There was a spot I used to visit before I got Multiple Sclerosis (MS); time and time again I would just go there and sit. Sit, maybe drink coffee, think, write, people watch, or just nothing at all, for hours. It was a small plaza in Claremont, California called “the village” where a friend of mine worked, which is how I found this place (we used to hang out there when his shift was over). In this plaza were a handful of black, metal tables and chairs which were all under large umbrellas and next to a series of fountains containing brass sculptures of children playing in the water with giant frogs. These tables were centered in the middle of the little plaza which was bordered by small restaurants, a coffee shop, a small movie theatre, a hotel that usually had some sort of live performance going on, trees, plants, squares of grass, lights, and of course, people. But it was not hectic; no, it was actually nice and calm. The atmosphere was very peaceful and I enjoyed just being in the middle of it all. Being in the middle of LIFE and all the flowing colors, sounds, smells and best of all, the taste of coffee. I loved it all.
What used to be peaceful is now overwhelming
But at this point, I could never go back there and simply enjoy myself while sitting and just taking it all in. You see, Multiple Sclerosis has affected every single aspect of how I experience the world around me. I can’t see very well anymore and I get really dizzy when there is too much to look at, especially when things are also moving. I am very sensitive to sound now so what always seemed nice and peaceful has become very overwhelming and stressful. I am not sure how to explain this but things don’t even always smell or taste the same; there are things that I used to love that I now hate and things that I used to hate that I now love. You could say some of that is just age, and I am sure that some of it is but not all of it. Certain senses seem more “dull” now, like a photo that has been slightly de-saturated, while other senses seem to have been unpleasantly “dialed up” to 11. Of course, my balance is not so great, so forget the leisurely walks across old, uneven, cobblestone pathways. As much as I may want to get up and walk around there is a good chance I would just opt for sitting down and focusing on a coffee.
Daily dizziness, muscle spasms, and tinnitus
But even the simple act of sitting and just thinking while drinking a hot cup of caffeine is not the same. Let’s say that I could eliminate all of the external stimuli so that it is just me inside my head; just the voice of my thoughts inside a black void. Even if I could somehow do that I still would not be able to find that relaxing calm I once could. For starters, I always feel dizzy, like I am tumbling around through space despite the fact that I am not moving at all. That alone causes a good bit of stress, even though I have grown relatively used to it. Then there are the random zaps of pain that I get throughout the day alongside the equally random muscle spasms and odd twitches that do a really good job of interrupting my train of thought or snapping me out of any type of relaxing state I can achieve. On top of all that, there is also the high pitched hum of tinnitus that now seems to visit me throughout the day almost every day.
My body is full of noise
Noise. My body is full of noise. I am not talking about sound, I am talking about the kind of noise you can see on your TV when it is not tuned to an actual channel; crazy static from things like the fading sound of the big bang echoing throughout the universe. So when it comes to me, I literally imagine there just being way too many electrical signals traveling around my nervous system all at the same time. It’s like a series of roads that once were almost always empty but are now in a state of constant gridlock; full of cars not knowing where they are going, crashing into each other, or simply stalling in the middle of the road preventing other cars from getting to where they need to go. So I imagine that because of this, all of my senses are going haywire or sometimes they are just simply shutting down; system overload. It feels like all the stimulus in the world (as I experience it) is now just received and interpreted differently by my brain. Simply put, I feel like there is a constant flow of electrical chaos, or noise, within my brain… the very thing that dictates how I perceive and experience every aspect of the world around me; of life. Vision, hearing, touch, taste, and smell. None of it is exactly the same as it once was and it is often really frustrating to me because sometimes I miss how I used to see the world; how I felt it.
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