MS Has Changed the Way I Experience the World

MS Has Changed the Way I Experience the World

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (21)
  • Anonymouse
    1 year ago

    Great descriptions, Matt. So much can be going on even when the weird, immersive experience of the disease activity is not apparent to others.

  • DeniseC
    1 year ago

    You are a great narrator of your world Matt. I have many of the same symptoms as you and just had to stop driving several months ago.

    I found that the tinnitus eventually subsided for me to a manageable level but do appreciate the angst of having the noise in your head at the beginning. It is like being on the runway at the airport. I literally woke up to it one day but blamed it on dancing in front of the speakers at live concerts.

    Some ways to cope. My friend got a machine that had the sound of the ocean to listen to. She used it at night and found it helpful. I used to find that hosing the garden was really helpful, just the sound of the water kind of blocks it out. This gave me a bit of head space.

    I still have tinnitus these days after several years but it is definitely background noise and sometimes disappears completely.

  • Matt Allen G author
    1 year ago

    I have a pair of Bose noise canceling headphones and if I am not listening to music I am listening to some sort of white noise, it definitely “helps”

  • Toledo34287
    1 year ago

    Here’s a good one. I don’t hear as fast as I used to. …….

  • potter
    1 year ago

    I don’t have the same problems but I do get anxious at parties. It seems like I am sitting among people with the cone of silence hanging over my head. I can’t seem to talk to anyone and they don’t seem to know that I am there. I guess I need to leave my shield of invisibilty at home. I have a big birthday party in a month and I am dreading it. I will be glad when the holidays are over with. Potter

  • Matt Allen G author
    1 year ago

    I have issues with differentiating where different noises are coming from in a room sometimes – it sounds like everyone talking is talking at the same volume from the same distance so I can’t focus on just 1 person talking, it all sounds like a mess

  • JanG6036
    1 year ago

    I can understand I used to find driving was a way for my head to clear and for me to be able to be me but now its like I dread getting in the car. The sudden on set of the lovely gifts MS gives wouldn’t be so bad if it could be controlled and or that we knew when it would hit.
    I hate just leaving the house for fear of getting hurt or bad sick like I have been in the past
    I know the struggle and I’m with you 100%

  • Matt Allen G author
    1 year ago

    I am in Colorado right now, staying with a friend till the end of November. The idea of leaving my home, my safe place, for 2 months was pretty intimidating! But oh man, I miss driving out in the desert for hours to just think and get away.

  • JKeith
    1 year ago

    Nice… writing is great…content and use of descriptive vehicles is superb. I can ‘see’ that plaza. Thank you. Your use of ‘static’ caused me pause…excellent.

  • Matt Allen G author
    1 year ago

    Glad everyone was able to visualize it, it’s the vivid setting for many of my pre-MS memories

  • DeniseC
    1 year ago

    Yes totally agree JKeith I can see the plaza too

  • Azjackie
    1 year ago

    Matt another great piece. I enjoy your writing. I cam really relate. Like you, since my diagnosis I’ve said-I miss me.

  • Kim Dolce moderator
    1 year ago

    Matt, lovely use of analogies in this piece. I always enjoy your work, and this one was particularly fetching.

  • Matt Allen G author
    1 year ago

    Thanks, glad you enjoy!

  • Dimitri
    1 year ago

    I love your interpretation of what you experience. I can’t say I can relate 100%, but I can relate to the dizziness and the overstimulation of noise.

    Your analogy of the big bang echoing through you is interesting. Mostly because I’m a physics dork. Perhaps your MS has made you super sensitive to the Cosmic Microwave Background Radiation. Haha.

  • Matt Allen G author
    1 year ago

    haha I don’t think that is what is LITERALLY going on but I am glad SOMEONE got the analogy!

  • DonnaFA moderator
    1 year ago

    Hi Dimitri! I’m a physics dork too! (Why didn’t they teach us about the Higgs boson in high school?..and didn’t the movie Interstellar excite you with possibilities?) I think that’s entirely possible! They say if one of your senses is diminished, others become enhanced. So what if while the stripping of myelin, while damaging areas of the CNS, actually enhances or at least removes inhibition in the areas of the brain that are thought to be more active in people with paranormal abilities – the anterior and middle cingulate areas, precuneus, and the frontal regions? (NIH) Which brings up even more amazing possibilities 🙂 Thanks for being part of the community, we’re glad you’re here. Physics dorks, unite!! -May the mass times acceleration be with you, Donna (MultipleSclerosis.net team)

  • PetieJ
    1 year ago

    Well! That’s certainly a different spin on ‘things’- which makes me feel the need to hold onto my head just aging that!! If I were to develop ‘psychically’ or have some paranormal enhancement, some of this may be worth it.
    Does anyone have Anything that helps with tinnitus? Sometimes I swear I can hear a dog whistle, it is so high pitched and squealing, other times it sounds like those bugs in the trees in the summer. Right now my head feels very ‘full’ just from the noise in my ears. We have a fan running in our room every night-it’s been my white noise for umpteen years.
    Matt, I so understand, comprehend, empathize with what you said. I miss me too.

  • PetieJ
    1 year ago

    **just ‘aging’ that** ?! Good grief! Pretty sure I was trying to type “reading” !!

  • DonnaFA moderator
    1 year ago

    No wories, PetieJ! I do that a thousand times a day. The worst is when I can’t remember what I wanted to say and have to put it down for a while 🙂 Hope today is treating you well! -Warmly, Donna (MultipleSclerosis.net team)

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