Thursday, August 5, 2010

Holy shit, I have a wheel-chair! Making it work amongst the EDS land-mines

I'm not sure how much sense this is going to make, but by now I'm guessing you know how I roll. I try to be honest, realistic and optimistic at the same time. No easy feat, but it's here for the entire world to see.

Yesterday, I officially got my wheels. I thought I'd be dealing with it a lot "better" seeing it's been in the plans forever. I don't think anyone can prepare themselves for something like that. I had a game-plan of where I was going to keep it, how I'd get it up and down the stairs, when and where I'd use it. I also had a TON of experience with working in the field I do. Most importantly, I had and still hopefully have a sense of humor. What else did I need?

When my friend dropped it off she said "I never thought I'd be giving you a wheel-chair." We both had a pretty good laugh about it, there's nothing else you can really do but laugh. The hard thing, was and still is accepting help. I know people are doing it out of the goodness of their heart, but I'm a stubborn girl with Scottish and Irish blood. I need to do as much as I can for myself, try it all and find ways to make it work before I will ask for help. The other night, our new bendy posse went out for dinner. I figured it would be best to get used to the wheels in the company of people who have a)been there or b) who truly "get it" and won't say/do anything that would otherwise drive me crazy. I couldn't have asked for a better introduction to the wheels than with anyone else. One of my bendy friends even brought stickers for me to add some bling.

I have a hard time just accepting help. In fact, it makes me really mad when someone assumes I can't do something, or need help. It's an interesting balance of accepting help and saying "I'll ask for help when I need it." One of my bendy friends suggested killing them with kindness, and I like it! Being a smart-ass and stubborn does have it's advantages. I think I could kill with kindness all day, and never get tired of it. I will say that I'm a total wheelchair ninja! I can do a pretty damn good job of maneuvering myself just about anywhere. When being stealth doesn't work my wheels become a battering-ram! Messing with this girl ='s trouble.

With all that said, the past while has been like walking through a field of land-mines. Not that I know what that's like, I'd never wish it on anyone though. Just when I feel like I'm getting a handle on everything, something blows up in my face, or I get a nice smack in the back of the head with reality. Emotionally, this has done wonders for me ha-ha. When I first got diagnosed, I did a ton of reading, I wanted to learn as much as I could to be pro-active as possible. I had a game-plan, and letting EDS get the best of me wasn't in those plans. When I was learning about what chronic pain, regression and all the EDS fun can do to you emotionally, I wasn't going to let that happen to me. Guess what? It happened. I'm so text-book.

I completely understood why someone would become depressed, anxious and generally have a hard time. I didn't know how it could make us afraid though. How could we let this make us afraid to live and do what we wanted? For me, it goes like this: You work your tail off doing something you love for a living. You decide that going back to school would be a brilliant idea. Acceptance to the program during the interview and a huge scholarship! Who could ask for more?! EDS happens, and the awesomeness of going back to school, would have to get turned down. It seems as though anytime something good happens and life is starting to turn around, I walk over another land-mine. I have my plan "C" ready to go and I want nothing more than to make it real, with no turning back. Here's the thing, I'm terrified. What if it all turns out like everything else has? What if I have to give it up, then what next? Thanks EDS....

So, right now I'm not going to think about the "what if's", I'm not going to give anything up and I'm not going to think about what's next. Take that EDS!!!

On this crazy ride, I've learned that having to give something up does yield other opportunities and priceless lessons. They're not always fun, but the grass totally gets greener. It may not be in terms of material possessions, money,or even just more of something. For me this has been all about learning from some of life's hardest lessons; mostly loss, and coming out on the other side ready for more. I may have had to give up much of what I love, but I have gained far greater things. I have gained a new perspective on life, it's all making sense now. I stopped questioning a long time ago, I've learned to live in the now, take it at face value and find a way to make it work. We often forget that there is always a way, and a lot of the time it's the diamond in the rough. And yes, we have it rough, there's no denying that. One of the diamonds, are the incredible people I've met along the way. Not only do they help me put my head back where I like it on a bad day, they're just all around awesome people. Not all of them are my bendy friends, they are from all different places all going on different paths. They know me for me, not just for EDS. They can see past all the crap it does to someone and understand that it's not all of who I am, it's just part of what makes me, me. They all have resources and ideas of ways to make life better with EDS, and best of all a listening ear. They know what I deal with day in and day out, they stand by me when it gets bad and they celebrate when good things happen. They don't try to get me to accept negativity, or stop me from finding a new way to do something. They've got my back, and I can't ask for anything better than that.

"I would like to point out that Stan Lee's new TV show would classify us with Ehlers Danlos as Superhuman. We would be Mr.Fantastic"
(One of my bendy friends)


  1. Hello, I'm really interested in your blog, but I'm not sure if you realise that it's really difficult to read in red. I've been there with the whole chair thing, it's so so tricky, but seriously it does eventually revolutionise your world, it's a bit of a journey of getting over societies' opinions of it and then it does become normal. Good luck and please help us to read your blog xxxx