Most of my pain is due to hypersensitivity in my feet and lower legs. Touch hurts, shoes hurt, pressure hurts, I’ve had days when even a fan blowing air would cause me to cringe. Desensitizing my feet has always been my biggest battle, and yoga has helped me to not only get used to constant varied sensation but also taught me how to breathe and take my mind elsewhere when the pain gets really intense. That’s what this picture represents for me. It is so painful for my feet to intertwine like that, but I’ve been practicing this pose for a solid month, trying to find that balance between mind and body. Today was the first day that I was able to bear the pain and still take my mind to a happy place. I think there’s even a smile poking out from behind those toes! It’s days like these that I realize just how grateful I am for the small victories. They keep me going 🙂
Put yourself in this situation: you’re sitting on a nice bench eating your Jimmy Johns sandwich. You see a girl (whom you don’t know) rolling down a sidewalk in her wheelchair. There’s a pretty sharp angle where the sidewalk slopes down to join the road and she’s rolling full-speed down towards that junction. When she gets there, the footplate on her wheelchair suddenly bottoms out and gets stuck in that stupid inconvenient crevice where the sidewalk meets the road. Her wheelchair comes to a screeching halt, and that ridiculously large, ridiculously full purse jumps right off of her lap and empties itself onto the road. To your surprise, she bursts out laughing, and you’re tempted to let a giggle squeak, although you’re not sure if that would be rude. Is it okay to laugh at that complete stranger? Would it really be laughing at her if she’s laughing too? What if she was your friend… then would it be okay? What about if that girl made a joke? Is it a trap, or are you supposed to laugh? Are you obligated to laugh?
Let’s talk handicap-etiquette for a second. It’s come to my attention that the line between what is considered appropriate and inappropriate seems to be a bit blurry for people interacting with us cripples. I had a conversation with some classmates the other day about when it is and isn’t okay to laugh and joke when it comes to another person’s disability. I’m always the girl spilling her purse like in the story above rather than the one sitting watching the girl spill her purse so it was a very entertaining conversation since I’ve never really thought about disabilities from that side of the aisle. Since that conversation, I’ve noticed how much strangers are walking on eggshells when it comes to my disability, so afraid that they will cross a line or offend me. Unfortunately, there’s not really a line set in stone separating the appropriate from the inappropriate, and certain things that aren’t offensive to me could very well be offensive to the next person. In general, though, it seems like there are a few things that would be universally irritating and certain things that are generally acceptable. If you’re handicapped, I hope you find some humor in some of the situations I’ll talk about in this post, and maybe you’ve been there with me. If you’re not handicapped, maybe this will help you out the next time a girl gets her footplate stuck and spills all of her crap on the ground J
So here’s a quick synopsis of some ground rules, and then I’ll tell you about some things to NOT do or I might run over your toes!
We should all stop thinking so much, and rely a little more on common sense. If I’m laughing or joking around, you can probably do the same. If I’m crying on the other hand and you’d like to continue your day unharmed, you probably shouldn’t crack a joke at that moment. Most of the time I joke about it to make others feel more comfortable and make an embarrassing situation not so embarassing, so if I’m joking, it’s a pretty safe bet that you can join in, especially if we’re friends. There’s nothing more embarrassing than when I make a joke (like when I show you my embarrassing zombie-like walk and say ‘hey guys, I’m trying out for the Walking Dead!’) and there’s crickets afterwards because my friends are scared it’s a trap or something to laugh. TJ and I have this running joke that whenever I fall, he tells me that I’m doing a good job of cleaning the carpet. It makes light of an otherwise unpleasant situation, and I always really appreciate that!
Even when it comes to asking me about my disability, use some common sense and listen to your gut. Last night I went to the movies and a couple of staff members were really curious about why I was in the wheelchair and what was going on so they just asked. I’m not telepathic or anything, but I can normally tell when somebody is curious out of the good nature of their heart and when they’re just trying to be a dick. If you’re really just interested and want to understand what’s going on and I seem receptive, just go ahead and ask. Thus far, I have yet to be offended when people ask questions about it unless I know they’re doing it embarrass or degrade me.
Now to the snarky bit… Here are 7 things that I would stay away from doing whe you’re interacting with someone with a disability. Some of them come from a good place but it ends up coming out rude; others are just plain rude. So grit your teeth, and if you’ve been in any of these situations, enjoy complaining with me for a minute
1) No backhanded compliments, please! You’re so pretty for being in a wheelchair! Can’t we just stop after the pretty part?
2) Pity isn’t necessary. You poor thing. Your life must be so hard. It may just be people expressing their sympathy, but your pity indicates that you think my life is somehow pathetic, and I find that insulting. I like my life, thank you very much!
3) Don’t avoid inviting me just to protect me from things that I can’t do. Do you want to come out with us to ______ tonight? Even if that place isn’t handicap-accessible, it’s still nice to know that you thought of me! Wouldn’t you rather be home but know that you had somewhere you could be tonight rather than just at home?
4) You don’t need to pull your kids away like I’m going to eat them or something. You may not have noticed but I’m in a wheelchair, not foaming at the mouth like a rabid dog.
5) Don’t treat me differently just because I’m handicapped. If you’re overly nice or overly mean or overly standoffish, whether its positive treatment or negative treatment, I don’t need or want to be treated differently. I’m just like you; I just use wheels to get around rather than my legs, and it would mean a lot to me if you treated me like you would any other person.
6) Please don’t talk to me like I’m a child. I wouldn’t assume that your body doesn’t work even though you’re obviously an idiot, so don’t assume that I’m an idiot just because my body obviously doesn’t work. (Whew, that was harsh, but kind of necessary to get my point across :-P)
7) Most importantly, do not assume that you can get a grasp of anyone’s situation based on surface-level characteristics. There are a million possible reasons why I’m in this wheelchair, and you may not be able to see a single one of them by looking at me. The only assumption that you should be making is that I’m using this chair because I need it, and leave it at that.
Food for thought: A lot of the misconceptions about disabilities come from ignorance. People stereotype because it’s quick, easy, and they don’t know any better. People make assumptions because they have no idea what kind of person you are, where you’ve been or what you’re going through now. Show them that they’re wrong. If they assume you are childish, be mature. If they assume you’re stupid, be intelligent and well-spoken. If they assume you’re rude and disrespectful, treat them with the decency that they may not deserve. You can’t control whether or not people change their mindset when it comes to disabilities, but at least you will be proud of the one thing that you can control: the way you treat them in return.
Are you content with what your life at this very moment, or are you always striving for more? No, I don’t mean ditching your boyfriend for Johnny Depp (well, maybe…) or your 800 square foot apartment for a roomier version (okay so I could understand if you did). My question to you is lofty, and I can’t really say that I even know what the right answer is. On the one hand, I think it’s healthy and constructive to strive for more, to search for your best self and your best life and then go out and get it. On the other hand, always striving for more may be a goal that cannot be achieved. You may spend your whole life searching for that little bit more, never recognizing the beauty that is your life at this moment.
Let’s just say that contentment is something that I really need to work on, even if I do have my reasons for my current thought process. The main reason that I have a difficult time accepting and being content with my present progress lies within my illness. Although nothing can replace the breakthroughs that medical treatments have brought me, a lot of my recovery is left up to me and my work ethic. Generally, the harder I work, the better I get. The harder I push myself, the less sensitive my legs become and the better I feel.
So let’s juts say that its been engrained in me since age 9 to push past my boundaries. If I wanted something, no matter what it was, I told myself that it was always up to me to get it. I know that a lot of my success in life thus far can be attributed to my determination (and a lot can be attributed to good luck), but also that a lot of my frustration can be attributed to my need for more as well. When I accomplish something, the joy of that achievement is short-lived, especially when it comes to my health and the progress that I make in my return to physical greatness (only kidding… or am I?). It takes me all of five seconds to start working towards the next best thing, and I rarely cherish the progress that I’ve made because every accomplishment pales in comparison to the next goal. If I accomplish standing, I’m already thinking about walking. If I accomplish walking, I’m already contemplating running. If I accomplish running, I’m already mentally entering a marathon… You see where this is going, right?
It’s a really tiring battle trying to find that balance between looking for more and being happy with what you have, a battle that I have yet to find out which side wins or which side is right. In all honesty, this is a question that, although I’ve asked myself every time I get disappointed with my progress, I’ve yet to find the answer.
I realize now that I’m missing everything, that I’m not appreciating the success that I’ve worked so hard at building because I want more than what I have right now. I’m going to start searching for that balance between pushing myself and enjoying the present moment, and I challenge you to do the same if you’re anything like me. That doesn’t mean that we stop striving to become our best selves, only that we recognize this moment as it is in relation to everything else. We recognize our strengths, as well as our weaknesses. We recognize who we were yesterday, who we are today, and who we want to be tomorrow. We recognize where we’ve been and, most importantly, how far we’ve come. We will no longer allow our desire for more to overshadow our lives at this very moment. The life that we have today is full of beauty, and to not recognize and cherish that is an injustice to ourselves.
So here’s my challenge to you (something I’ll be joining in on, too!). Take note of your small victories. It doesn’t have to be a daily activity or a weekly activity; there is no quota to fill. Just make a little note of any accomplishment, no matter how big or small, that you recognize in your life. I’m hoping that in acknowledging such successes, we will learn to be content and appreciative of what we have right now. It may take a year or a lifetime to get to a place where we see every baby step as valuable and recognizable, but it’s a journey that we must take in order to be truly happy and content.
So I’ll go first… Here is my small victory for today: I went to my doctor’s appointment today all on my own, no parents, no boyfriend – what a grown up I am! Going by myself to my doctor’s appointment means that I can get around independently. I can get my chair into the car, drive my car (yay for no tremors!), put my chair back together again at the hospital, and handle whatever the doctor may throw my way on my own. It’s tempting for me to put a disclaimer that this is a really small victory in the grand scheme of things, but I’m not going to let myself think that way anymore, remember? I am grateful for where I am in this moment and this day. I recognize my progress, no matter how big or small it may seem.
So now it’s your turn! GO!
Happy thoughts and best wishes,
Food for thought: You wouldn’t start to climb the next stair before you reached the stair before that, right? So why would you do that in your life? To get where you’re going, you must go through where you are now. You may eventually reach your goal, or you may not; tomorrow is not a guarantee. All that you are guaranteed is this moment. Acknowledge today for what it is, and try not to get down on yourself when you fall down. Every step you take, whether it be forwards or backwards, is valuable all in its own.
There are so many invisible victims in the shadow of suffering. It has taken me many years, too many years in fact, to realize just how difficult it must be for those of you that make up mysupport system, those of you who must watch me fall time and time again. I don’t have much experience being on that side of the fence, but I am capable of recognizing that it would be devastating and scary as hell. Our story is no different from yours or your neighbor’s or your great uncle’s in Arkansas. At some point in your life you or someone you love will fall down, and you’ll have to be the one to help them back up. Unfortunately, bad fortune is universal,and it certainly doesn’t play favorites.