Out of Sight, Out of Mind

“I am invisible, understand, simply because people refuse to see me.” 
-Ralph Ellison, “Invisible Man”

 
I’m 5 foot 8. Half of my head is shaved. I wear bold makeup and jewelry. I’m hard to miss. And yet somehow, I have managed to (quite literally) stumble upon the secret to attaining one of the superpowers I’d mentioned in another article I'd written late last year: invisibility.

Regular readers of my blog or of one of my more recent MS Connection posts know that I’d recently sustained a tibial plateau fracture, which has rendered me essentially immobile since the beginning of summer. And boy, has it been a humbling, eye-opening experience. Not only has it offered me a very small and limited peek into what life could be like if my MS progresses and what life is like for so many people around the world, but it has also given me a sampling of what it means to have a visible disability.
 
When your mobility is limited, your physical world also becomes limited. In the time between becoming injured and my knee surgery this summer, I didn’t leave my home much. On the rare occasion that I did leave, accessibility for me was often not considered. It was an afterthought. After surgery, with instructions to not put any weight on my leg for 10 weeks, my world has mostly been reduced to a room and what little sanity I have left.
 
What if there is a fire? What if someone breaks into my home? What if I find myself in a dangerous situation in which I need to get away very quickly? How would I safely escape or defend myself and my home?
 
I have ventured out into the world a few times since in a wheelchair. And once I’m in that chair, despite rejoining civilization, my world gets even smaller. Most people do not offer help with opening doors or reaching for items on a shelf for me. People walk into my chair, despite me being directly in their path, as if I’m not even there. All I see are butts and crotches.
 
When I am noticed, the energy changes. It feels uncomfortable and awkward.
 
A disease that is, in most cases, invisible is bittersweet. “You don’t look sick.” How many times have we heard that? On one hand, people don’t believe that I’m feeling awful because I look just like them (you know, aside from the shaved head). On the other hand, I’m thankful that my MS isn’t at a point (yet?) that requires me to use equipment that might make me “look sick.”
 
Not being able to get around much on my own while recovering from knee surgery has given me a rare gift—seeing disability from the other side, when the affliction transitions from invisible to visible and the way you feel about yourself simultaneously does the reverse and changes from visible to invisible.
 
At least, that’s been my personal experience.
 
Thing is, for now, this is temporary. Sometime this fall, I’ll be able to start putting weight on my leg again and eventually will be awarded the luxury walking and living as I did pre-injury. For most people living with MS-related physical limitations, it’s not a short-term situation.
 
I’m fortunate to be able to say I have such amazing caregivers, but that is not the case for many people who do far more than I’m currently doing, and they do it all by themselves. Those people are the real superheroes, and society barely gives them any notice.
 
And isn’t that what we all want, to be noticed in a positive light?
 
So! Find your nearest spoonie—upright, wielding walking aids or wheelchair bound—and look them directly in the eyes. Acknowledge them. Recognize them.
 
Notice us. I’m right under your nose. Literally. Because wheelchair.
 
I’m just like you.
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Cat

Cat Stappas

Cat was diagnosed with multiple sclerosis in 2013 and writes about her experiences in her blog, It's Only A Bruise. She hopes to make the dark corners of the internet a little bit less scary for both the newly and the long-time diagnosed with some honesty, positivity and — sometimes — some tongue-in-cheek humor. You can read her blog here and follow her on FacebookTwitter, Instagram and YouTube.

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    3 Comments

  • Chuck Kochiss   Oct 12, 2017 12:45 AM
    Cat,

    I've read several of your earlier posts and now this one. It is clear to me that you haven't learned ***** yet. By your own admission, you have a bad case of crimson Mohawk disease. We all know what that is - the 16 year old kid at the mall with the red Mohawk that screams out LOOK AT ME, LOOK AT ME. It's only temporary attention for something insignificant and do you really want that? You need to grow up, stop feeling sorry for yourself. and start looking inside instead of outside.

    I've had chronic progressive MS for nearly 30 years,so I speak from some experience here. Each year MS takes a little bit more away from us and until the medical community has a significant breakthrough, that is likely to continue. So what do we do? We listen to our bodies - always. We test ourselves to see what helps and what doesn't - EVERY DAY. When people don't notice our invisible affliction it doesn't bother us because we don't need to be pitied because we caught a bad break. Everyone, sooner or later, will be or is dealing with something. Be happy when people think you are "normal." That means you are fighting a good fight. Give yourself a pat on the back. Read, research, and learn all you can about your own particular brand of MS.Learn to be open and honest and communicate with your fellow MS people. The MS Society gives us plenty of opportunities to communicate.They will help you and you will help them more than you can imagine. When you are able, get out there and attend a seminar, join a yoga group or take part in a support group. It helps.

    Have you ever taken a steroid treatment with a group of cancer patients? I have. You have to be the most positive person in the room because everyone there has it worse than you. I highly recommend helping someone who has it worse than you do when you heal up. It will change you. For the better.

    I'm sorry that you have MS, but the world will not stop or even blink because you do. If and when MS calls your name to use a cane or a walker or a scooter, embrace it because it will help you to keep fighting the fight. That's a good thing.

    And lastly, we all DON'T just want to be noticed in a positive light. Some of us just want to be recognized for a positive moment or deed and a positive life.

    I don't want this comment to bring you down, but you really needed a good kick in the ass.

    Good luck in your fight with MS, Chuck
  • Michelle   Oct 13, 2017 3:54 PM
    Chuck, I'mvery sorry that you have been dealing with MS for 30 years. I can't pretend that I have any firsthand accounts of what is like. What I DO have a firsthand account of is people that I surround myself with, who are the most positive and uplifting people anyone in this world could ever hope to come across in a lifetime. Cat is one of them. My best friend, whose name I will leave out of this public forum once said to me "just because someone has it harder than you, doesn't mean that your troubles are not worth recognizing". I plead with you to go back and re-read your comment, because at best - it's really shitty and unempathetic. Perhaps you are having a bad day with your disease, and from reading Cat's blogs... I get that. But you just unleashed a storm of unnecessary ***** on this girl who is just trying to cope, not only with MS, but with a severe leg break, metal rods, seclusion, immobility - on TOP of her already draining disease. I'm sorry, but it sounds like it is YOU who really needs a good kick in the ass... or a good friend to vent to. This comment was ugly and not necessary.
  • Chuck Kochiss   Oct 15, 2017 12:06 AM
    Michelle,

    If you can't pretend to know what it's like to have MS for 30 years, then why do you pontificate to me? Sometimes I do need a good kick in the ass and I get them from those who care. Sometimes they (the kicks) even help me up from a fall. I have tried to surround myself with people better than myself and have done a good job at that. (I think I know what you're thinking -"not too hard.") Often, those people have told me some pretty hard truths. I have benefited from that. If an ordinary guy like me can muddle their way through nearly 30 years of MS, she can fight her way back to her feet.That was the message that I was trying to send to Cat (a person that I don't know) but recognize is going through some really tough times. There are no rainbows and unicorns here. MS is a tough battle. If you have MS, you know that and will also encourage her to stay strong

    As far as a comment being shitty and unempathetic, please go back and read your own comment. I've learned many things over my years with MS and one of them is to toughen up and keep going. When I need help, I ask for it. When I am having a bad day, I try not to whine. It never helps.

    If you don't get it, well, you just don't get it.

    Allison,

    I didn't say being invisible is a gift - you did.

    I never said I was an ambassador, but your sarcasm was duly noted.

    I never asked for a medal, but your sarcasm was duly noted.

    I don't feel diminished, you made that assumption. It was wrong,

    I don't feel broken, you made that assumption. It was wrong,

    I didn't try or intend to humiliate Cat, you said that. I was trying to get her past the external things. This is not a game show or a fashion show, we are fighting for our lives against MS. If you have MS, you know this.

    I never said she was a second class citizen -you did. One becomes a second class citizen when they relegate themselves to that status. I, for one, am not a second class citizen and I don't think that anyone else with MS (including Cat) is either.

    Yes, is is reasonable to be stunned by her diagnosis and the subsequent injuries. It is not reasonable to stay stunned and not move forward. Been there, done that.

    What I did say was, "start looking inside instead of outside."

    Allison, you asked me to try again so I did. I don't know if you have MS or not. I hope that you don't. You have to be a person or color to really know what it feels like to be a person of color, You have to be tall/short to really know what it feels like to be tall/short. AND YOU HAVE TO HAVE MS TO REALLY KNOW WHAT IT FEELS LIKE TO HAVE MS! Cat and I know. My comments were a blunt, honest attempt to help and advise a person with MS about roads already traveled. Your comments about being smug and your sarcasm throughout your reply was hurtful and unnecessary - big time. Please try again. I would welcome and try to accommodate any input from Cat.