Does It Matter What People Think?

outside world

I wasn’t self-conscious about my “disability” or even thought of myself as having one after I was initially diagnosed. Back then, I moved around pretty easily. I had a slight limp, my balance was only beginning to get a little shaky, and I occasionally stubbed my toe on uneven surfaces due to the foot drop. But I wasn’t using a cane yet, and could still get from point A to point B quickly and in a straight line.

Nonetheless, I obtained a handicapped parking tag. I remember thinking, if I’m going to be saddled with this I may as well get some perk from it. After all, having access to parking spots closest to a building’s entrance was convenient, and I could fall if I rushed, so why the hell not?  Be that as it may, I had not yet entered the stage of being self conscious about my appearance. That changed the day I stepped out of my car to enter a local grocery store, and noticed a disdainful look from an anonymous passer-by that screamed, “why the hell are you parking there, you fraud!”

To be fair, I had never liked seeing someone who I didn’t think was disabled park in a handicapped spot, thinking it was selfish and self-centered. In fact, I never parked in one thinking it was bad karma, and that the Gods would somehow give me a reason to have to park there if I did.

But my vehicle clearly had the tag hanging from the rear view mirror, and I still got that dirty look, one that said “you’re not really sick.”

This self-conscious period didn’t last long because it soon became obvious I had an issue, and I had become so absorbed in what was happening to me that I didn’t give a rat’s ass about how the general public viewed me. Plus, once the shock that someone might actually think of me that way wore off, I soon came to realize I wasn’t the one with a problem, and never gave it another thought.

I remember this now because I’ve read a lot of chatter recently about the how general public’s attitudes and perceptions can make us self conscious about our appearance, and influence our self-esteem. This makes me very sad, and very angry.

So forgive me as I climb on my soapbox for a moment.

Reflecting on all of this has made me wonder what those who don’t know me think when they see me. Do they think less of me? Do they pity me? Does the sight of me make them uncomfortable? Do they notice me at all? Most importantly, do I even care?

Above all, I don’t want anyone’s pity, and I don’t need their sympathy because I’m fine with the way I am. And I don’t take offense if the sight of me makes people uncomfortable, because I think it subconsciously reminds them of their own mortality, which is scary.

And if my disability somehow reduces my status as a person in the eye of the beholder, they are a shallow ignoramus in my book who, in the immortal words of my basic-training drill sergeant, I wouldn’t give the sweat off my balls if they were dying of thirst.

The bottom line is I really don’t care what the outside world thinks, and haven’t for a while. Friends and family are different, but the general public? Nope!  I am who I am, and if that isn’t good enough, tough shit! But………..

It’s easy for me feel this way because I didn’t begin coping with my condition until I was in my late forties. I was well-established career wise, happily married, and wasn’t concerned about a roof over my head or food on the table. I’ve been blessed to have a spouse that is a genuinely nice, loving person, and not once have I worried she would kick me to the curb. My mobility wasn’t significantly impacted until my son was already in his teens, so I never lost the privilege of playing with him when he was young.

I still have my issues, not wanting to be a burden chief among them. I’ve been guilty of doing too much, and not asking for help. Those close to me, and K in particular, are already doing more than they should, and need a break. But I also see the pain and concern in their eyes when they see me struggle, and know they want to help. Maybe it’s because they feel helpless, and need to so something. It made me put myself in their shoes and imagine how I would feel. So my hardest lesson has been to learn it’s okay to ask for help, and show vulnerability, because doing the opposite does not make us closer. It disconnects us.

And since I am firmly entrenched as a middle-aged person – I hate to admit I’m getting old – I have the benefit of a perspective I would not have had in my twenties or early thirties.

I would have freaked out if I was stricken at that age. I’d think of myself as damaged goods, and probably do everything in my power to hide or downplay my symptoms so the opposite sex wouldn’t run and hide. After all, who is going to want to hitch their saddle on a broken horse? Nobody wants to be alone, and we especially don’t want to be alone because of something we never asked for.

That perspective also knows this would have been a fool’s errand, because presenting ourselves as something we aren’t is a betrayal of trust, and only leads to worse heartache down the road.

In a perfect world, everyone would understand that living with the physical burdens of a chronic condition does not change our core. It (hopefully) doesn’t change our personality, our sense of humor, our integrity, or any the things that make us who we are. Those attributes are what is most important, and should be the only reason someone chooses to  like us, love us, be our friends, or want to hang with us. Sure, the packaging is important, but lasting relationships are built on more than that. It’s sad to think this might be lost on some, but it’s sadder to let outside opinions change who we are, and lose ourselves in the process.

So my message, particularly to young adults, is I’m not minimizing that it hurts knowing our condition could influence how a person thinks or feels about us in a less than flattering way. It could also be the deciding factor when considering whether to take a risk and share a life with somebody. This reality is unfair, and can make anyone feel angry, frustrated and hopeless.

But it’s their loss, not ours. It can be a tough pill to swallow, but it shouldn’t change how we feel about ourselves.

 

Author: Steve Markesich

I am loving husband, a doting father, a Red Sox fanatic, an aspiring novelist and MS advocate

14 thoughts on “Does It Matter What People Think?”

    1. Thanks Susan. As an aspiring writer I can’t imagine what it must be like to go what you are going through, and will be closely following your journey. Are you starting to use some of the software that turns written words into something you can listen to, or takes your words and writes them for you?

      Liked by 2 people

      1. I have been incredibly lucky with my vision, in the RP world. My central vision is still correctable and I can still read, which is such a gift for me. It is strange how we count our blessings in very different ways once we are faced with degenerative disease. I know that our paths are very different, but there are so many similar challenges that we all face. I am learning a lot from your blog, about you and MS and also about myself and the VI community.

        Liked by 2 people

  1. It’s so bizarre to me that throughout my entire life I never cared about what people thought about me and believe me when you look ‘differently’ people let you know what they think all the time. But with this…having MS it’s so different. I felt powerful before. Now well you know how I feel from my posts. It’s such a different reality for me now. The judgement is vastly different and it hurts. So much more. I wish I could deny that. But I promised to always be honest on here.

    Liked by 1 person

  2. This is a fantastic post, and it’s such a tough thing to find acceptance ourselves let alone to consider the thoughts of others. “In a perfect world, everyone would understand that living with the physical burdens of a chronic condition does not change our core” – with increased awareness, we can at least get a little step closer to understanding and compassion. Thank you for sharing 🙂

    Liked by 2 people

  3. I dont know much about MS. But, i know it is not easy and it is a case of good and bad days.

    But, i wanted to say this is a great post. I think this is a post to all.

    Definately, we should careless about people think. No one knows your road your pain regardless they judge. Well, that is their issue not yours. We dont have to take the pain they share. Realistically , no one but you know your pain. You also know your strenght. Life is a big learning, as long as we learn and adjust our ways then we are on track to live happily by our standard. I would rather count my small wins and daily victories, then be burden by random joe judging me based on what. Choose your battles, dont take it personally, deflect the rubbish only accept the good.

    Liked by 2 people

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