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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    9 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.
  • WmMs   Oct 20, 2017 12:30 PM
    Wow. What a completely rude and unsupportive comment in a place meant to support others with this horrible disease. 26 years ago you were in Cat's place. A young, fairly newly diagnosed person. Everyone is in their own place and has their own perspective.

    Your "experience" that you speak from is only your own experience with a disease that treats everyone differently. If you don't appreciate her perspective then don't read her blog. Leave it for the rest of us who may not share her same exact perspective but can appreciate reading someone else's experience and different way of thinking. Regardless of whether you believe her prespective is correct it is clearly what she is experiencing and feeling four years into their diagnosis.

    "Learn to be open and honest and communicate with your fellow MS people."

    That is exactly what she is doing here on this blog and the MS connection only to be chastised and left rude comments like: "You need to grow up, stop feeling sorry for yourself."

    One day she will stop feeling sorry for herself. One day she will move though other stages of grief just as everyone with a chronic illness. In the meantime, as fellow people with MS, let's support her and lift her up in her current stage. If advice needs to be offered let's do it in a gentle and compassionate way.

    One day Cat may look back at this stage and have a completely different perspective and realize how much her outlook has changed once she has the amount of experience that you do after 30 years with this disease. I am sure that she will be able to appreciate the feelings of a young person who has just recently begun a lifelong journey with MS. We should all do the same. We were all new once.

    Cat, thanks for sharing your perspective. I wish you well with your journey with MS and your current injury.
  • Evonsmom  Oct 20, 2017 7:37 PM
    Chuck, I feel as if you need to get a life. Apparently the one you have, you don't appreciate, acknowledge or cherish.
    I dealt with results and symptoms for six yrs before a confirmation of my MS. Bittersweet? You bet. That was three yrs ago but I've been sick longer. Are we all in this together or what? Do we need you and your attitude.? Don't flatter yourself. We have enough to focus on and you are not one.
  • Avatar
    itsonlyabruise  Oct 21, 2017 2:24 AM
    Yikes.

    Hi! Cat here. I've debated commenting here because this is a place to support one another, not to bring others down, challenge anyone's history with the disease (it's no one else's business), or compete. MS is not a competition. Gross. Additionally, I don't want to waste any of my energy on anyone who is here for any other reason than to be supportive of the experiences of others. We're all in this together.

    However, some bold statements were made about me on a personal level and some major underlying issues were brought up, and for those reasons, I feel I need to address them.

    I will say this, and ONLY this, as I'm not going to come back to this thread for the sake of arguing. I don't owe anyone an explanation and I don't come to MS Connection to pick or perpetuate fights.

    People who read any of my articles, here or on my personal blog, already know all of the following to be true:

    1. I have never claimed to be an expert.
    2. I do not feel sorry for myself. I never have. Not even at the time of my diagnosis. And anyone who has read the above article without a chip on the shoulder already knows that I was simply writing about an observation that I had while recovering from an injury.
    3. I always end each blog post, here and on my personal blog, on a positive note, no matter the subject.
    4. I'm don't want attention. I want conversation.
    5. I recognize my good fortune in having most of my pre-MS abilities intact, as well as having a strong support system. I recognize this is not the case for many other people living with MS. I recognize that my current situation isn't necessarily the way it's going to be forever.

    Look, I write for a large audience--people living with all types of MS--both newly and not-so-newly diagnosed, their caregivers, their families and friends, advocates, and people who are just curious about the disease. That's a lot of people and I realize not every single one of my blog posts are going to be everyone's cup of tea. I'm just throwing a whole bunch of words out there and hoping some will stick.

    Last, I wanted to thank those of the commenters who came here to show support, and to lift up someone else, a complete stranger. That's what this amazing online resource is for. You guys are why I've been writing for the past two years. You are the kind of people who make this community great and strong. Thank you for your acceptance.

    YOU are my MS people--that is, when MS stands for Multiple Sclerosis, not ManSplaining. ;)
  • Avatar
    maria1  Oct 21, 2017 1:21 PM
    Albert Einstein's Theory of Relativity let's us know that where we are standing gives us a different view of the same thing. We all have read Cat's note and we each have come away with different views of what she is saying and how we each react to it, and communicate in the way we think is clear. Obviously, communication is never clear for each of us brings our own experiences to each and every word. We are never right nor never wrong, just different points of view relative to where we are standing, and how we feel at the time, and the words we choose to express our feelings.

    Communication in any form is supportive as long as we continue to hone the vocabulary to get us all in the same place word-wise, so we share the same view.

    Keeping silent also sometimes is supportive but mostly only to maintain a status quo. Expressing feelings with words serves us all, though at times we do not appreciate nor welcome what we perceive as criticism.

    But alas, with ms, nothing is as it seems, and THAT we all often forget.

    For me, each of the above communication say the same thing, we are all strongly attempting to cope with ms, and we all react differently. And of course, I have been known to be wrong from time to time, so it is up to you to choose how to view this communication.
  • AnyBeth   Oct 24, 2017 9:44 PM
    I've heard two wildly different kinds of accounts of novice wheelchair users. One is about how the wheelchair makes them invisible, that they get less attention than before, bumped into with no apology, etc. The other is about how the wheelchair user finds themselves thrust into stark relief, how they'd like to fade into the background but cannot evade this notability. (There may be a third type that never gets told because it's not worth remarking on an attention level not changing.) I've yet to find out what makes the difference. Is it regional or dependant on local demographics? Is it something in the person themselves that makes the difference, perhaps their characteristics, background, expectations, attitude? Some combination? I've no idea, but I think it's weird that you can find both these stories.

    My own experience is closer to the second type. What being unable to escape attention, I made the choice - uncomfortable at first - to embrace it. Among other things, I started wearing brighter colors, bolder patterns, even some larger jewelry. I committed to meeting people's gaze as a way to discourage those who would stare (who generally don't want to be stared at, themselves.) But that probably took longer than six months.

    Which is part of the point. You used a wheelchair knowing it was only a short-term affair. You didn't have to think, "Well, I guess this is just my life now. Now what?" You didn't have the time or, apparently, inclination to adapt psychologically. That in itself makes your experience different. And your different experience may have brought you to think you understand something you don't -- [potentially] using a wheelchair long-term.

    I think it bizarre that you found going out in a wheelchair made your world smaller. I don't know that I've heard that before. People who need wheelchairs tend to describe them as "liberating". And, um, "wheelchair bound", you say? We generally see them as a very good thing, not something we're shackled to.
    It's ok that people didn't spontaneously offer to help you. Maybe they thought that if you needed help, you would ask for it. Isn't it great that they think you're a capable person, wheelchair or not?
    Everyone, you indicate, with no respect to their abilities, is a person. But people in wheelchairs that live alone are superheroes? That's incongruent. MSer in wheelchair heroically goes to get the mail! Two little old ladies, one with a walker, were slowly exiting the auto-doors of a dollar store as I approached to enter. They glanced at me with pity, looked to each other to process, turned back to me and one said, in a most saccharine tone, "God BLESS you!" And church-lady smiles spread across their faces, to have done their good deed of recognition and to have witnessed this astounding miracle: lone wheelchair-user enters discount store! No. Look up <i>ableism inspirational</i>. To be elevated like that is not a good thing. Much better to be seen as normal than either subhuman or superhuman. When your life changes, you adapt to that change and do the best you can. That's not heroic, that's life.
    I am sorry you experienced your temporary disability in this way. But your post communicates that wheelchairs themselves are limiting, wheelchair-use entitles you to spontaneous offers of help that people often rudely refuse to produce, and that the need to use a wheelchair is so awful that one must be absolutely amazing to use a wheelchair and live alone. Wheelchair and normal life doesn't seem to be a possibility to you, at least not in this writing. And that's kind of harmful and really, really sad. It's almost nothing to do with, say, a wheelchair user two years in. I hope people don't just see this that you wrote and confirm to themselves that wheelchairs are bad and using a wheelchair regularly is horrible. 'Cause they can be really, really great. I'm sorry if you don't see that.
  • Avatar
    itsonlyabruise  Oct 25, 2017 2:03 AM
    AnyBeth,

    I appreciate your honesty and constructive feedback, thank you. Allow me to clear a couple things up.

    I never claim to be an expert and all I can write about are my own experiences from my own perspective. I certainly have no idea what it’s like to be in a wheelchair 2, 5, 10, 20 years down the line, nor do I pretend to—that’s why I say temporarily using a wheelchair has given me a very, very small and limited peek into what my life COULD possibly be like in the future if my MS progresses that way. It also forced me to think about things like home security and physical safety differently than I had before. I wasn’t in a wheelchair long enough to become as psychologically mature as someone who has used a wheelchair for a few years. I would imagine that’s not something that happens overnight.

    When I said my world got smaller while in a wheelchair, I meant that in a social way moreso than in a physical way, meaning that while I felt liberated in getting out of the house, my personal experience was that I felt completely invisible to people. I didn’t feel seen. My short experience involved being walked into and tripped over a lot and not much eye contact. Again, that’s simply just MY experience and I’m not speaking for others. This article is simply an observation I’d made about the difference in how I felt I was seen by other people in the short time I was using a wheelchair, while also keeping in the back of my mind that it could someday be a permanent reality.

    As for using the term “wheelchair-bound”...yup, that was absolutely in error and I apologize for it. I’m a little embarrassed because I know better than to say that. I don’t use that term in conversation because I understand the undertones and implications of those words. I didn’t realize I’d mistakenly included the term and missed it in review until after it was published here, and I thank you for pointing that out.

    Last, I can see how you interpreted my comparison of people with limited mobility to superheroes as patronizing. Please understand that was not my intention. I didn’t mean a superhero in the literal sense of the word, someone who should be celebrated because they made toast or brushed their teeth. I’d encourage you to read the article that I reference (it’s called Becoming Superwoman and is linked within the text) at the very beginning of this blog, in which I talk about what I consider to be the closest thing a human can have to a superpower—traits that we are all capable of refining through experience and turning hardship into something positive and productive. That’s not easy and there are many people who choose to use their adversity as an excuse to be bitter and jaded.

    It takes strength to move forward without wallowing in whatever we perceive to be the end of the world. That’s what I meant by superhero, the people who choose to move forward, many of whom do it all on their own, without complaint or prolonged self-pity. I truly did not mean it in a demeaning or disrespectful way. I used it because I admire the people who don’t let their hurdles, whatever they may be, define and drown them. Does that make sense?

    Again, thank you for your honesty. That’s what I love about this community—keeping the conversation going and sharing experiences across all stages.

    -Cat Stappas