What People on Crutches CAN Do

There seems to be a general assumption that people on crutches are unable to do much. There’s “how to use crutches” articles stating that you need to ask for help to do everything and that carrying anything while on crutches is simply impossible. When people see me on crutches, they ask if I need help, even if I’m just looking at a bag of chocolate chips in the baking aisle at the grocery store. They say things like, “oh, poor you…it must be tough to be using those things all the time,” and they give me weird looks when I do carry things or push a shopping cart or walk far distances. Even when I walk into the dining hall here at school, the workers swipe my card and then say, “I hope you have someone to carry your food for you,” or, “make sure you get help.”

You don’t see them saying that to the guy who uses a wheelchair or to the girls who have walkers and scooters, and they don’t say it to able-bodied people. Just the ones who use crutches, as if it’s acceptable to make assumptions and say things about people like myself because crutches look more temporary. It drives me crazy how incapable these people think I am.

Despite what these people think, there are many things that people on crutches can do. Sure, some may take time to get used to, but they’re far from impossible. I use crutches, and I can carry my own food (even when there are chairs and obstacles all around), bring a hot cup of coffee across a room, use my phone and text or talk to people while crutching (although it drives me crazy when people do this, so I try to keep my phone out of my hand when walking), move a dorm refrigeratorby myself, do my own laundry, walk around a store for hours. I can even take a shower (I’ve gotten that question a lot…”how do you shower?”), use stairs, and reorganize the furniture in my bedroom. The list could go on and on, but I think you get the point.

Do you want to know what I can’t do? Well, pretty much the only thing that falls into this category is walking with two feet…because if I could do that, I wouldn’t be using the crutches.

So, to the people who try to limit me, just know that two aluminum poles do not and will not stop me from doing what needs to be done. Crutches don’t have to mean helplessness and dependence on others, and people who use crutches do not need to be pitied or told what to do. If I need help, I’ll ask for it. Simple as that. No need to fret over what you perceive to be my limitations.

Okay, there’s the end of that rant. Just know that people on crutches are still humans and very capable of getting things done or asking for help.

You say I can’t, but I say…watch me.

Explaining the Pain

Last week I was working on homework with a friend when she suddenly stopped. “Can I ask you a question?” she said. I said sure, wondering what she’d ask. “Has your foot always been that way?” I quickly said no, pointing to photos on my desk of days when I was healthy and happy. I then tried to explain what RSD/CRPS is.

“It’s hard to explain. I guess it’s kind of like being on fire all the time and having no way to put it out. You just sit there watching as these invisible flames engulf your body.” I told her that the pain is constant and brutal, and that sometimes it can spread. This was even harder to explain. “It’s like my leg is full of poison right now. Maybe dynamite. When I fall or get hurt in some way, that ‘poison’ swirls around my body with no limits, and the ‘dynamite’ is activated.” I told her about the times in the past when my RSD/CRPS has spread.

A few days ago, I was again asked about my leg, but this time it was a young girl, no more than 5 years old, who did the talking. I was standing in line at the grocery store and she was waiting for her mom to finish scanning everything so she could enjoy her cup of gummy worms and go home. “What happened to your leg?” she asked sweetly. This question really stumps me when kids ask. I don’t know how to put it delicately and in a way that they can understand. I tried the usual, “oh, I just hurt it” approach. This girl had a curious mind so that answer was simply not sufficient. “How did you hurt it? What’s that thing on it? Why do you use those silver stick things?” The questions continued. I explained that I hurt myself in an accident at a pond, the “thing” on it is a sock to help it “feel better,” and the “silver stick things” help me walk. She asked a few more questions before it was my turn to check out and she left with her family.

I usually come up with a different answer for the “what happened” question based on the situation. I don’t even try to explain RSD/CRPS to people unless it seems like they care or will be able to understand. Normally I just tell people I have a chronic pain disorder, or I hurt my leg, and leave it at that. But for the inquisitive people of the world, sometimes that just isn’t enough. I have to be creative as I explain such as mysterious disorder to these wondering individuals.

For those out there who have RSD/CRPS, how do you explain it? Is there a good way of describing this monster? I’d love to hear some other peoples’ ideas and perspectives!

Side Effects of CRPS

Yesterday I was finally able to do my show-and-tell for Kinesiology, so I can now cross that off the to-do list! Hooray! I awkwardly went to the front of the classroom, holding a mug because that was the only thing I could think of to bring. I love tea and coffee, and the mug has a quote about baking, which is another love of mine. Perfect. I talked about those things for a minute and then people were allowed to ask questions. There was some silence so my Professor stepped in.

“Since this is a class about disabilities, and you have a disability (although that is just one small part of who you are, of course), could you please tell us about that and how your life has changed because of it?”he asked. I had sort of expected this, since my crutches/leg are obvious and I have had some conversations with my Professor about RSD/CRPS in the past few weeks. I gave my usual five second speech about what this pain disorder is, blank stares on everyone’s faces. Nobody had heard of it before and I’m sure that in my nervousness I didn’t do a great job of explaining.

But then my Professor wanted to know more. He wanted to know some ways in which having CRPS has caused my life to be different. I thought about it for a second but still didn’t give a great reply. I said something about having to adapt and become humble, asking for help more often. As I left the class later that night I thought about the question some more, knowing that there are more ways than just the few I listed.

So, here’s a list of some of my “Side Effects” of having CRPS:

• Creativity –> I’ve had to come up with numerous creative ways of getting around challenges, such as figuring out how to carry things while on crutches or learning how to put pants on while standing on one leg.
• Empathy –> Instead of simply seeing people with pain and thinking, “oh, sucks to be them,” I can now relate to them and somewhat understand what they are going through. {As a side note, I will never know exactly how someone else feels, because, after all…I’m not them! But I can try to understand their situation when I’m in a similar one}
• Friendships –> I have met so many amazing people along this journey. From hospital buddies to Ronald McDonald House families to people who also have CRPS, it’s been great to get to know wonderful people.
• Talking to Strangers –> Okay, this might not always be good (ya know, “stranger danger!”), but for the most part, it has been interesting to talk to random people who ask about what happened. True, sometimes it’s annoying or too invasive, but I’ve been able to have some great conversations while out shopping or sitting in a class.
• Spreading Awareness –> When I talk to people, I usually encourage them to look up RSD/CRPS so they can become informed about it. This has been especially good here at school since I have a lot of people going into the medical field in my classes, so I hope that some of them can take my story and learn for future patients. I’ve educated clueless doctors, family members, friends…and hopefully they’ll tell others, spreading more awareness about this horrific disorder.
• Experience –> Well, I can only help that this journey will make me a better Occupational Therapist one day. I’ve had plenty of experience as a patient so I am hoping that this enhances my abilities on the other side of things.
• Dependence on Others –> While I don’t particularly like this aspect, having RSD/CRPS has caused me to humble myself and ask for help. I’ve learned that I can’t live in isolation because people are very important, especially when you can’t do everything on your own.
• Strength –> They say that what doesn’t kill you makes you stronger. And while sometimes it makes you wish it would kill you, the strength that blossoms out of struggle is beautiful.
• Respect for my Body –> There was a time in my life when I hated everything about my body. I didn’t want to look at it and just wanted to hide from the world. Now I can truly appreciate the functions of my body when things are working properly, because I sure do miss them when they’re gone.

Well, I know there are a million other lessons learned and “side effects” of my RSD/CRPS, but I’ll leave it at that for now. I have lots of studying to get done before Spring Break finally starts on Thursday, so I’d better get on that!

Thanks for stopping by 🙂

Stop the Assumptions. Please.

Oh. My. Gosh.

Today I had my first experience volunteering at a local school for kids with special needs. My class is partnering up with them to help in their Special Olympics gym classes, and near the end of the semester we will be helping at the actual Special Olympics Spring Games event on campus.

I was already kind of concerned when my Professor told us that we would be doing this as a requirement. Since we help in a gym class, I wasn’t sure what they’d let me do with my crutches. My Prof assured me that everything would be fine and that I should go, so I did. I went, not knowing what to expect, and prepared myself for the possibility that I might be unable to participate. I guess I didn’t prepare myself well enough for the words that would come out of the mouths of the staff there.

In the first 5 minutes I was at the school, I talked to three different women. The first one I saw asked why I was there. When I told her I was going to help with the Special Olympics program, she gave me a strange “are you sure?” type of look but told me to wait in the hallway until the Physical Therapist who was in charge came down. While sitting outside, another woman, a teacher, came over after talking to the office workers. “Hi, what’s your name?” She asked. I told her, then after telling me hers she said, “uh, I’m not really sure what you’re going to do here. Why are you here? Don’t you know this is a gym class you’re volunteering in?” I told her I’d wait and see, and she told me that the PT would be there to talk to me soon.

Well, then the PT came walking down the stairs. “Oh my. How are you going to do anything?” She didn’t say her name or anything, she just went straight for the crutches topic. “What did you do?” I told her about the pond jump and the RSD, then she looked at me, puzzled. “Hmm…well I don’t think you’ll really be able to do anything to help here, but I’ll get you a rolling stool so you can sit and watch. I mean, I don’t want to isolate you, but really, I think you’ll just be able to observe.” She told me that she was initially going to have me go somewhere and help her, but once she saw my crutches she changed her mind. At this point I was trying to hold back tears, ready to bolt out the door and begin walking back to campus (which, in reality, wouldn’t have worked since my school is miles away and it’s 5 degrees out, but whatever. I wanted to be anywhere but there). I decided to tough it out and give it a fair try. Eventually the PT led me down to the gym, placed the stool down, and told me to sit there while she gathered her things.

The gym that we were at also served as the cafeteria for the other part of the school, which seemed to be a typical elementary school. The PT told me that the kids were in trouble so they missed recess and instead were being lectured by the Principal. I wasn’t sure what they had done, but the way he was speaking to them made me feel uncomfortable. He told them about how they wouldn’t make it far in life and how most of them might not even make it through high school. I didn’t fully listen to the speech because I didn’t want to intrude, but what I caught of it made my heart break. Then, when it was time for them to leave, their teachers came in and yelled at them some more. The way these kids were spoken to was the furthest thing from encouraging. I believe in lifting others up, especially kids, and not tearing them down. Apparently these people didn’t have the same philosophy. My heart continued to sink as I listened to the conversations around me.

So anyways, back to the real reason why I was there. The PT started to set up for the gym class once everyone had cleared out. Since she had told me to sit and watch, that’s what I did for the first couple of minutes, not wanting to go against what she said. After a while, though, I realized that I was more than capable of doing what she was working on, so I asked if I could help. I ended up moving some small basketball hoops across the gym to their correct location and setting up some other things. See, already proving that I was worth more than a sack of potatoes sitting on a chair.

I felt awkward during our time with the first group of kids because I didn’t quite know what to do or what to expect. We had about 5 kids, preschool aged, and they did various activities such as bean bag tosses, basketball, and walking on a balance beam. I partnered up with the PT and we worked with a kid together. Things were seeming to get better so I was feeling more confident by the end of that session.

But then we went to get our next group. I went into the classroom and stood by the side. “Oh, you’re gonna be a great help,” the teacher said to me with obvious sarcasm and a disapproving look on her face. Wow, way to judge a girl without even talking to me. “Actually, she has good balance and did fine in our last group,” the PT chimed in. I was so thankful that she was starting to realize my abilities and stand up for me. But still, I was shocked by how these people chose to make assumptions about me just because I was on crutches.

The second group went well, and I definitely proved that teacher wrong. I was helping the kids and doing everything the rest of the group did, including playing with the parachute and walking in a circle while holding onto it (which, I might add, takes a lot of coordination-using one hand on crutches, one on a handle, and walking around while singing and trying not to step on the parachute. BAM.)

By the time we had our third group I was getting the hang of things. The PT told me and the other college girl there to be partners with the most adorable little boy ever, so we helped him through the obstacle course. By the time we got to the basketball station, the other girl had left to help someone else so I was flying solo with the little boy. He was so sweet and loved his basketball! I was happy that I had the chance to work one-on-one for a bit since that is how the next few weeks will probably be (yes, I have at least 3 more weeks of this).

So anyways, that was kind of a long rant, but it really disturbed me how negative everyone was toward me. You’d think that people who work with kids with disabilities would be more compassionate and understanding, maybe even better with their words toward people with injuries/disabilities, but no. It was the complete opposite. I was happy to see that they were mostly positive when speaking to their kids with special needs(using positive reinforcement rather than saying “no” or telling them what they did wrong), but the overall atmosphere was uncomfortable due to their attitudes.

I wish people would just learn to not judge people by their outward appearance. Crutches, wheelchairs, walkers, and other assistive devices do not automatically make people incompetent or unable to do anything. So check yourself before you make assumptions.

I really hope the next few weeks are better than today’s experience. Because honestly, I have pretty thick skin, but I don’t think I can handle it if the negativity continues.

Thanks for stopping by. Hopefully the next post will be filled with good news and positivity 🙂

Barriers

As I read my textbook in preparation for tomorrow’s Kinesiology class, I am reminded about something my Prof said last week:

“With the introduction of the ADA, physical barriers were lowered but social barriers seem to have increased or stayed the same.”

Is that true? In my world it seems to be the case. Buildings are required to meet certain standards so everyone can use them, but peoples’ hearts and perspectives are not quite up to par. I notice an extreme difference in how I’m treated while on crutches versus when I’m in my wheelchair. On crutches, people are unafraid to get up in my business and ask what’s wrong because they assume I broke my leg or something, which isn’t too unusual. Once I’m in the chair, though, it’s a different story. Some people avoid eye contact, or I get pitied looks. One of the more annoying things is when they come and try to push me or do everything for me, as if I’m somehow unable to complete basic tasks. (I’m not saying I don’t enjoy help when I need it, just that it gets awkward when people do things without even asking).

People see the adaptive equipment and automatically put on their stereotype-laced glasses, so to speak. They categorize me as being “different,” sometimes “incompetent” or “pitiful.” People…you use feet to walk, I use crutches. BIG DEAL.

I’m even singled out in the bathroom.I mean, really?! This past week I was leaving a stall and a woman stopped me. “Oh, that’s really rough. Have you seen someone in our disabilities office yet? There are ways to get around that.” That?! What is that? The fact that I’m on crutches? If so, how might she propose me “getting around that?” I was left slightly confused, as if my crutches labeled me as needing help. Yes, ma’am, I have seen someone in the disabilities office, thank you very much. But there’s nothing she can do. So there.

Good golly. I know I talk about this a lot, maybe more than I should, but people are people. Stop the stereotypes, stop trying to “save” us. We don’t need saving, we just need people who are willing to see past the disabilities and accept us for who we are as humans.

I truly hope that one day everyone will be seen as one, not as “normal” and “abnormal,” or “healthy” and “diseased.”

Let’s break down the barriers and live in harmony.