Having a Bizarre Time With MS

"Seinfeld" has an episode called “Bizarro Jerry.”

For those unfamiliar with the show, the character Elaine meets three new friends, similar in physical appearance to her closest friends–Jerry, Kramer and George. These doppelgangers look like her best friends but they act completely different.  It is as if she has entered a parallel universe, somehow connected, yet completely opposite.

In a way, I have my own Bizarro World.

MS is, to put I mildly, quite odd. I’m not exactly sure why or how I developed it and can’t tell you, with any degree of confidence, what my future with MS might be.

Strangest to digest is that so many of my symptoms of MS are invisible, resulting in me appearing healthy…but I’m not.  A regular day for me might include:
  • Blurred vision
  • Vertigo
  • Brain fog
  • Extreme fatigue
  • Joint pains and body aches
  • Spasms
  • Noise intolerance
  • Loss of balance
  • Foot drop
Sprinkled in are an endless array of altered sensations throughout my body: 
  • Tingling
  • Crawling
  • Burning
  • Cold (or wet) hands (or feet)
  • Numbness
So, how is my existence with MS is divided into two worlds?

There is my online persona where I openly discuss the unique experience of being a husband and father living with MS. I go into detail about how difficult the journey has been… and the silver linings I’ve found along the way.

But in real life, I don’t want others—my family, friends, or even the casual acquaintance—to know the havoc MS is causing. If you’re around me, I want to share smiles and laughter, not create sadness and concern.

If you see me out in the neighborhood, at a party or at one of my children’s events, I do my best to only showcase the normal version of me. I keep my Bizarro world where I prefer it, off in another dimension.

I grimace through the aches, poke laughter at my stumbles or forgetfulness, and try to ignore or will the odd sensations away.

If someone asks how I’m doing, I deflect or demur as to not give MS any further power; it’s already impacted my life enough and taken so much. Most times, I humorously quip that I feel “like a million bucks.”

I’m not intentionally trying to deceive people, I just want to give a smooth husband/father/friend/neighbor “experience,” unobstructed by the bumpy world of MS.

Some might call it pride or stubbornness. But it’s how I cope. I view each instance as a chance for me to cheerfully shove MS back into the other dimension, where it belongs.

But when I’m alone, I enter the other world. In Bizarro land, I don’t fear telling people I’m in pain, I actually strive to tell the whole, unabridged story. I want people to truly understand the raw and sometimes uncomfortable truth of living with MS.

I do wonder, what would happen if I allowed my two worlds to meet? 

When someone asks "How ya feelin?," instead of a silly refrain that changes the subject, I could shed some light on the bizarreness that is MS.

I’d replace "a million bucks" with:
  • "Got off to a rough start this morning. My hands were burning and it was as if somebody was sticking needles in them. Later, as I was making coffee for my wife, they felt just like two balloons."
  • "My right leg started dragging behind me again today when we took our dog on a family walk.  Sure, the pooch didn’t seem to care but I’m concerned that my kids noticed…and it worries them, or worse they are embarrassed by it."
  • "When my wife was unpacking the groceries today, I had to leave the room when she was putting the eggs away. Certain noises really upset my senses and for some reason.
  • Nicked myself shaving this morning. I wasn’t in a rush…it’s just that sometimes I get blurry vision, which doesn’t mix well with holding a sharp blade up to my face."
  • "I’m tired. I mean really tired. The kind of tired where your eye lids hurt to be open. The bizarre thing is, I’ve had quite a relaxing day. But with MS, it feels like no matter how much I might rest, I’m rarely rewarded with any extra energy."
On "Seinfeld," Elaine’s Bizarro world met her real world and it was not a positive result. The two worlds collided and she realized that she was better staying with her real friends, in her regular world.

I like writing about MS. I want to educate, help people understand this awful disease and connect with others so they know they’re not alone in their fight.

But I also don’t want it to dominate every interaction I have. That’s a gloomy place to be and I prefer to exist in the light, searching for the silver linings, in my bizarre Life Less Traveled.
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Michael

Michael Wentink, Blogger

In 2008, Michael Wentink was diagnosed with multiple sclerosis. At 31, he was a new father, a recent MBA graduate and a Director at a Fortune 500 company. MS altered this path and after an early retirement, Michael is now navigating life on a road less traveled. A native of Northern Virginia, Michael currently resides in San Antonio, Texas with his wife and two young children. Read about his journey with multiple sclerosis at mjwentink.com and follow him on Twitter.

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    8 Comments

  • Avatar
    dcraven1967  Jul 26, 2019 10:09 PM
    Dear Michael,

    Thank you for sharing and by the way that is one of my all time favorite episodes! I am just beginning to fundraise for my event here in California in October and I would really like to use part of your story in my presentation. I will send you a message on your website.Thank you for sharing
  • Avatar
    jasonprestovfd  Jul 26, 2019 10:20 PM
    I understand what you are talking about.
    When someone asks me "how are you doing today" or "hows your day going"?
    I always answer the same way,
    "I'm living a dream"
    They usually try and correct me saying "don't you mean living the dream?"
    Then I tell them, "nope I'm living a dream, it could be good, bad, or sometimes even wet. It's all in your perspective."
    What they don't understand is,
    Good days are fantastic because everything works correctly but usually don't last long. For me bad days are usually my leg dosen't want to cooperate at all (I call those days, "zombie leg days"). But unfortunately the rare wet days are just plain embarrassing and nobody likes talking about those. I've been lucky enough to only experience those days when around close family or friends. But to be honest, if your with even a semi close friend and an accident happens they become a close friend if they don't make a big deal about what just happened.
    That's my mild attempt to open the door between my words. But I'd rather keep these two worlds as far apart as possible. Let's face it if people don't have MS they cant possibly understand what we deal with on the daily basis and most times even if they have MS their symptoms are so different from ours that they don't understand completely anyway. Its amazing to me that so many people have MS but the affects are so random and different.
    It gives perspective when someone is complaining about the inconvenience of everyday life (running out of milk or something similar) on a day that our legs just won't work and every step is a struggle, or arms or hands are numb and not working to the point we cant open the door to the bathroom even though we desperately need to. But I know that somewhere someone is dealing with something so much worse that I cant even comprehend what they are going through.
    Its all perspective, so what kind of day are you having? I will just nod and smile if you tell me "I'm living a dream"
  • Johan   Jul 27, 2019 7:33 AM
    Jasonprestovfd, this is in reaction to your comment. I am having a great day. But it is early, 8:18 am by me. And I got up about 6. It’s funny, I’ve been thinking similar thoughts lately, and now I’m reading those same thought patterns in the MS blogs I follow. Thoughts that suggest if others knew what my life with MS was actually like, they would be aghast. Or, as my friend Tripping on Air would say, they would be freaking out. But then I wonder if I am being selfish and self-centered. Thanks for posting everybody; I think it helps me and my MS.

    JE
  • Shannon   Jul 29, 2019 2:52 PM
    Great story!!! Humor keeps me going...need more! Here's to a good week, Michael.

    Peace to you and your family :)
  • Kris   Jul 29, 2019 3:40 PM
    This is so great, thanks.
  • MoBella   Jul 30, 2019 3:30 AM
    Wow, my day started at 2:13 am, I honestly have no idea, how I got to this site or why. But, I'm glad I did. I read some penned thoughts of sufferers and I wanted to join in.
    This disease MS, bares my initials and I wonder why I don't my like my name anymore. It just got strange to me that, I cry when I see these letters MS, strange, but it's my reaction to my name, me, MS.
    And as/was written, by people who suffers from and/or through this, disease/disfunction that person is the only one who gets it.
    Each person, each day experience different things, same disease MS, each person will/may experience different symptoms, why?
    Personally I feel lost, fractured, alone and interrupted are some of the words that comes to mind, when I think of me, MS.
    As mentioned by others, no one gets it, even if they suffer the same fate or, are caregivers, friend, family or foe, no one gets it.
    Our DNA is confusing, MS is confusing our Nervous System is confusing. What does this mean???
    I am stayed because, I have faith in God, there is mystery there, so I hold to it, but wow!
  • Julie   Jul 30, 2019 11:33 AM
    Like MoBella, not sure how I got here, but glad I’m here. I am 69 and was diagnosed 30 years ago. When my 3 children were young (4,6,7). I have PPMS but have been stable for years. I used forearm crutches and though MS was merely a bump in the road until a few years ago. Now I need help with almost everything!
    MS is my life now!, Thank God for my husband... but it is getting to much for him.
  • Liz   Aug 10, 2019 6:47 PM
    Thank you for this. My sister was diagnosed 10 years ago. She is super private about it . I know she suffers from many of the same symptoms but doesn't want us to know. We just want to support and help her anyway we can but she wants to do everything herself, even if that means getting injured. My other sister and I are trying to figure out what we can do. She doesn't tell many people she has MS so we are always being asked what is going on with her. We wish she would accept help and also maybe connect with others going through this. Anyway, I appreciate your wisdom and others on this subject as I a just a family member.