I haven’t written on this blog for quite awhile. I’ve started countless posts to only give up and decide I’ll try again on another day. You see, something big happened and I’ve only just realized exactly how big.
Back in May, I went to the Abilities Expo in New Jersey (The New York Metro Abilities Expo to be specific), and there, some amazing things happened. First and foremost, was that I met Auti Angel (one of the stars of Push Girls and creator of the Colours N Motion dance team). While she was there I asked her about how she got her first job after her accident.
She talked about her dance career and how her doctors told her that she would never dance again, but she proved them wrong. And then she told me that all she could really tell me was to follow my heart.
Now, it’s pretty standard as far as advice goes, but hearing it from someone who is following their heart and refusing to let people tell her no, makes a big difference.
I had come close to giving up. I was working in a borderline scam job, answering phones, cold-calling, and doing absolutely nothing physical. Somewhere along the line, I had slowly begun to believe that I wouldn’t be able to do much more than a desk job. And the only type of physical activity that I would be able to do were those that were specifically adapted for disabled people.
I hated my job, and I had only been going for two weeks. I was terrified of quitting because I couldn’t figure out who would want to hire me and I didn’t want to lose the first job I had in years. And as I’ve mentioned before, I missed martial arts.
At the expo, I found that products were created with people like me in mind. Instead of learning how to adapt to everything on my own, this was a place that adapted to me. I don’t think most able-bodied people can really understand what that meant, because everything is already adapted for able-bodied people. The wheelers outnumbered the walkies, so most people were at eye-level for me. And it was amazing to talk in person about similar issues that we dealt with. And while no one else really knew what RSD/CRPS was, no one shamed me for my use of a chair.
I stayed at the Expo for two days. I quit my job over the phone the night of the first day. I decided that I wasn’t going to settle. I didn’t know how I was going to find a new job or what exactly I was going to do, but working somewhere I hated just wasn’t going to do for me.
The second day of the Expo I went to Auti Angel’s Colours N Motion dance workshop. Which was amazing of course and a blast. I’ve always loved dancing, it’s not something I’m particularly good at it, but it’s always been a close second to physical activity I love (after martial arts). And while practicing dance moves (and failing quite miserably, co-ordination is not a strong suit of mine), all I could think was how much I wanted to be doing Karate moves.
After the Expo, I slowly became more active. I left the house more often. I applied for jobs that required physical ability. I bought a tennis racquet and tennis balls (that I have yet to use of course). Soon I got a job. And then, towards the end of June I saw that my old Karate school had a women’s self-defense workshop. I asked if there were any spots left open, and the instructor said yes and that he hoped to see me there.
I went. And while this might not seem like a big deal to most people, I had tried to go back to Karate more than once, and more than once, I turned the car around and went back home. But this time was different. This time I had Auti’s voice in my head. This time, I thought of what Auti would do.
She’d keep going.
And then I thought of what I would do had I not been disabled.
I always wanted to go back. I never really wanted to stop going in the first place.
I decided to live with my CRPS, as not to let my body become a constant war ground. I had forgotten that the biggest reason I decided to live with CRPS and not to constantly seek experimental medical treatments was because I would rather use that time to live my life.
So I kept going.
Because that’s what I would do.
The self-defense class reminded me that I am still capable. I signed back up for Karate that evening. These past few weeks have been amazing. I’m starting at the beginning again, new body, new things to learn. And I have a goal. A crazy, ridiculous goal that I still can’t explain exactly why I want to, other than I have the feeling it would mean something great. I’ve decided to try to get my blue belt back by December. December 9th of this year marks my third year of the car accident and part of me thinks it would be kind of of a big deal. It’s a lot of hard work but it’s definitely been enjoyable so far.
Actually, I lie. It’s been fucking amazing so far.
And for anyone reading this who also has CRPS, I want you to know that even if you don’t get a cure, even if you don’t go into remission, it doesn’t mean you’re life has been taken from you. You can live with CRPS and you can even enjoy your life with it. You have to do what’s best for you, not what any of your doctors think is best for you, and not whatever your family or friends think is best for you.
You can do this.
Don’t ever let anyone tell you that you can’t.
Gimp 'Tude 
Excellent! More power to you!
hey! I just wondered what job you got to replace the crappy one you hated? im only asking because i am having the exact same issue right now, i HATE desk jobs but do not know what else I could do, i like the idea of support worker for other people with mental disabilities but a lot of them require personal care and i have trouble providing my own! Any ideas or experiences of what roles you have outside of desk jobs would give me some hope! ps what wheelchair do you use it looks amazing!! how much was it? I seem to have a lot in common with you from your posts! im totally loving push girls….its my inspiration!
Hi! I’m actually a cashier/bagger at a grocery store. It is a minimum wage job but I love it because it allows me to do a lot of work with my hands and I can pick up heavier things without having to stand. Personally, I think if you want to be a support worker for people with mental disabilities you should totally do it! Perhaps you wouldn’t be able to help everyone, but I believe there’s some jobs you can get where you handle more of the “light” duty tasks. I’m also going to start helping a service dog group in my area (as a volunteer) and they’re well aware of my limits. I think basically for jobs, you just need to find yourself one with a group of innovative people where they say ‘if you can’t do it this way, what if you tried this way?’
And thanks! I love my wheelchair. It is a Ki Mobility Tsunami AL. Insurance wouldn’t cover it, so they did knock down the price so it was $2500, and the place let me pay it off in installments and I only needed to pay the first payment before I got the chair. Their customer service is EXCELLENT! I ran into them at the Abilities Expo and they tinkered with my chair for free and gave me a better smoother ride!
Push Girls is amazing! I got a post coming up soon about it and the word inspirational. I feel like they reclaimed the word in a way. It’s such a great show.
that wheelchair looks awesome! here in the uk though the rices are higely higher but our wages are not! i have to fund about 3000 uk pounds for the same model. i asked everyone oif they would do installments and they said no.. probably cos i dont work yet. stillo wondering how and when. do you have camber on the wheels? does it make any difference? what about frog legs-do they really let you go over cobbles and stuff? how hard is pushing yourself in a to end wheelchair compared to a folding crapy one? not to whine but service over there seem brilliant- even adapted snow holiday skiing expo’s – superb for meeting other wheelchair guys and gals. no single expo here, nor events. poop.
riding sounds great! i am thinking of joiing the basketball ball today so excited. good for you about yelling- i may start- usually its when people stare for more than four seconds i get irate and ready to say something like ” ill have to start charging you soon” or “im not a freak show stop staring” weve got a massive benefit scrounger innitiative in this country right now, programmes and news everyday about how all disabled people are milking the system and frauding it. its so the government can get away with removing benefits for disabled. unfortuneatly its made everyone angry at disabled people-its so cruel. they talk about being supported by them the tax payer-its so selfish. so basically when i [pull into a disabled spot people literally stop and stare of how i get out-assuming im faking it ir not propally disabled-ready to yell abuse at me- its made life very hard – even my sister talk about the scroungers and its so upsetting. targetting disabled people really is an ugly side of humanity. also that were rich and i struggle to pay for bread and milk. ive lived for years on baked beans and toast! so yeah its retty difficult at the moment and i just want to exist on a equal footing- they also think i must not want to work-rather than employers are scared to hire me. i have good friends but bad family- and this attitude in society gets very draining and i look at push girls as hope for myself- in fact if it keeps going like this i might move abroad if i can. my girlfriend is very supportive to me which is great. im working on ignoring the ignorant people right now. i hope it works!! im getting all active aswell and joined a kayak league. i cant wait till i work- i hate being at home!! do you have friends in wheelchairs? does it help? xxxx congrats onthe job thats superb! wicked 🙂 carry on pushing, i know im going to-your right auti angel and push girls really has made me reach out and start enjoying life-im going to push aswell! take care xxxx
ps i love the girly purple chair- i may get forest green- im quite girly too so im very excited about the cute colours!
Omg to find someone else with RSD/CRPS is so hard. as much as i would like to say that i live life still i cant say that. Its spreading a lot faster than most cases i have heard of and am have been told im the worse cases that several of the doctors i have gone to have seen. Morphine in a iv drip doesnt even help me. but im glad to see someone else who understands my pain and has the same unheard of rare disease i have.