Today's post is a bit different that my usual life lessons post. Typically my life lessons are something I've either learned the previous month or have learned in the past that everyone has or could also learn. This post specifically only applies to those who are also Spoonies, like myself (refer to my Conversations with Felicity: The Spoon Theory post). And that is the use of mobility aids. This post might also serve as an explanation to those who don't understand why some people use mobility aids.
As some of you know I was diagnosed with Complex Regional Pain Syndrome end of June. The easiest way to explain what CRPS is, is that I have a short circuit in my spinal cord so everyday signals going back and forth from the spinal cord to the brain get altered and the messages turn into pain (more on this coming soon). My CRPS developed after an SCI I sustained when I was fifteen. Over the past few months the pain associated with CRPS and the SCI has slowly started to get more constant. It used to be where I'd have good days for weeks and then some bad days. But lately it's more bad days and far-and-few-between good days. Because of this I've had to use my crutches more often as walking has become more and more painful for me. I would also injure my ankles and knees very often even though via MRIs there is nothing major wrong with my knees or ankles (except tendonitis).
When I started school in August, I quickly realized how difficult using crutches was around campus especially because I'd be carrying a heavy backpack that only made my back pain and overall balance worse. So I made the decision to use a wheelchair. I have a Sunrise Medical BREEZY Elegance standard wheelchair. It's foldable and about 32lbs. It's not my ideal chair but it's worth it. I am hoping to get the Sunrise Medical 5r Ultralight Wheelchair eventually. It's surprisingly not as expensive as I thought it would be.
Now, to clarify something, It's not that I can't walk at all, I can, it just hurts more than it would on any average day for a normal person. I don't use my wheelchair when I work because it really wouldn't serve me any purpose but I do use it 95% of time. My primary reason for using a wheelchair, SCI and CRPS aside, is because my ankles and knees are very unstable and have given out on me many times before. Using a wheelchair prevents further injury and helps reduce pain. If I were to just "push through my pain" as so many people tell me too, it would honestly do more harm than good because I would be risking another injury that would put me out of commission for more than I can afford. This year alone I have spend six months in either a plaster cast or in an aircast boot. I've been lucky enough to be allowed to work even when I was casted but that may not be the case at every place I work at. I want to be able to do as much as I can and using a wheelchair allows me the freedom to live my life the way I want to.
It's a really strange thing to go from being able to walk and dance without pain to having to use mobility aids. It's also really humbling. I've grown to be incredibly grateful for the good days I have and I dance every chance I get. I've about six or seven pre-recorded dances I've done for me to post when I want to record a dance but am in too much pain to do so. It also helps me see how I've grown as a dancer. I don't take dance classes anymore but when I workout, they are dance specific workouts because I don't want to loose what I've worked so hard to achieve over the past six years. Somedays, I do have to do modified wheelchair workouts but I try my best to at least stretch every day.
Here are some tips that I've created on how to embrace using a mobility aid, whether that be a wheelchair, crutches, a walker or a cane.
1. Realize that it's part of you now.
Denying what you feel will not make it go away. It insures that it never gets resolved.
So your doctor has told you to start using a mobility aid and yes, it may be hugely humiliating to have to use them, especially if you're a young adult like me. But the sooner you realize that it's part of who you are the better. Your problem won't go away, if you deny that it's there. You will remain unhappy the longer you deny it. Instead, fully embrace whatever mobility aid you have to use and try to make it fun. Which brings me to my second tip.
2. Make it fun.
Who said using mobility aids had to be boring?
Just because you have to use mobility aids now, doesn't mean you can't fancy them up a bit and make it more fun to use, especially if you're gonna be using them for a longer period of time. You can get wheelchairs in different colors with pretty patters to cover the spokes so go ahead and decorate your crutches, walker or cane too. I took pink sparkly duct tape to my crutches to make them more fun to use than the standard silver ones are. And I have gotten so many compliments on how cool they look and what a genius idea it was. Additionally, a quicker solution might be using spray paint on the crutches, walker or cane to make it colorful.
3. Understand that there will be questions and know how to answer them.
She is both hellfire and holy water. The flavor you get depends on you treat her.
If you're young like me and have to use a mobility aid, understand that people will as questions, especially if you didn't always need them. Keep this quote in mind when people ask questions. If they are rude, you don't have to say anything back to them. But if they ask and the seem genuinely curious, you can try to explain to them why you need it. Have answers prepared for whatever scenario because you never know what will happen. Having a sense of humour about life makes it more worthwhile so always having a sassy comeback for those rude comments are essential. (I couldn't find any good ones in relation to being disabled but I'm sure you could find some or create your own).
4. Ask for help.
Don't be shy about asking for help. It doesn't mean that you are weak. It means that you are wise.
This one is a tough thing to deal with. If you're anything like me, you know that asking for help is the last thing you want to do. But understand that people are usually always more than happy to lend a hand if you ask for one. When I used a wheelchair during the school year, one of the women who worked at the Dining Hall would always wheel me around while I got my food. She went above and beyond to help me and I am so appreciative of that. Sometimes even my fellow classmates would ask to wheel me around and I of course would let them, especially if we were going a long distance (i.e. my dorm to the Dining Hall).
5. Don't get discouraged.
When you face a difficulty, something you don't understand, instead of being discouraged, instead of complaining, have a new perspective. Declare, "This is not here to defeat me. It's here to promote me.
Yes, it's discouraging to have to use a mobility aid, especially if you're an athlete like I am. Rather than being discouraged, use this as an opportunity to grow. And let others with disabilities inspire you. For example, Brianna Rodgers is a 12 year old with Spina Bifida and uses a wheelchair. She inspires me because even though she uses a mobility aid, she still dances and preforms in major competitions. You can find her on Instagram @brianna.dancer.udc. Another inspiration of mine is, Alice Sheppard, another wheelchair dancer who I had the pleasure of dancing alongside at Steps on Broadway in 2012. The creative dances that she and others choreograph for those in wheelchairs is absolutely astonishing. You can find Alice on Instagram @wheelchairdancr. There is also a wheelchair dance team called the Rollettes started by Chelsie Hill. You can find Chelsie on Instagram @chelsiehill.
I use a wheelchair. Just as I use a car or an oven. You know,
it's a tool, a piece of equipment that helps me get around.
~ Claire Freeman (@meesa_claire on Instagram).
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