Monday, July 19, 2010

My take on the EDNF conference

I'm going to start by saying that the conference was incredible. I was surrounded by some amazing bendy friends where we could be open, honest and empowered. Unfortunately, we were brought together by something that wreaks havoc with every aspect of our lives.

When I first walked in, I will be honest and say that I was over-whelmed. It was the good kind though. I realized that there were a TON of people (about 500+) who "got it". It was like the first time I met my two bendy friends here, multiplied by 500. Holy awesome Batman! Right away, I think we were all able to approach anyone, introduce ourselves and just start talking like we've known each other for years. Now that it's over and I'm back home, I still can't believe it happened. There were people from Canada (woot!), USA, Sweden, Japan and Australia, all living with EDS. We had our own universal language and mutual understanding despite the cultural and language differences. It amazes me how greed, religion and power will tear people apart, but a chronic condition will bring people together. I wonder what John Lennon would have to say about it? Perhaps something witty and brilliant...

I had to laugh at a couple of things. I know that there were a million things that needed to be taken into consideration for this conference to happen. The EDNF did a fabulous job organizing, and making it work. On both Saturday and Sunday, the conference and speakers started around 8:30 am. Mornings and EDS don't really go together. I do know there was an insane amount of information that had to be squeezed into those two days, and doing it any other way would not have been possible. The other thing that I found funny was that one of our meals was buffet style. Mmmmm buffet. The only thing was, that we needed to carry our plates from one room to the other. Some of the food was hot. EDS+walking+breakable dishes+hot food='s a disaster waiting to happen. I liked that the following day, our lunch was already packed in bags that would be easy to carry and filled with a variety of food. 10 points for the hotel!

I went to really good presentations, and always came out with something new to try. I can't say that I learned a whole lot and that everything was new, but it re-affirmed that what I'm already doing is good stuff. I came away knowing that everything my body was doing is pretty much text-book and that I'm not crazy. It got to a point on both days were I was sick of talking and learning about all the wonderful things EDS puts us through, it eventually became depressing. Maybe it was the affirmation of everything that's been going on with my body is in-fact EDS, and that I wasn't going to be one of the "lucky ones" who suffer few symptoms with little pain and will be able to be independently mobile. While I was at the conference I stayed with one of my bendy friends who lived about ten minutes away. It was nice to go back "home" and not talk so much about EDS but to hang-out and talk about other things. I was very impressed with the doctors who presented. I know they're awesome with EDS but it is the complete opposite of what I and probably most of us have experienced. It was so nice to hear them use our bendy language and just talk about it matter-of-factly, and know that they have listened to their patients and take them seriously.

I met with so many people and had so many conversations that I'm still processing it all. One of the conversations that stuck out was one about adoption. I was lucky enough to find more than one person who made the decision to adopt for the very same reasons as me. They were successful, and are the proud parents of very beautiful children. It made my year, for two reasons. The first being, that I could pursue adoption and it was possible even with being disabled. Secondly, that I could do it, I could be a parent. I don't want kids anytime soon, but it's still a realistic possibility that I will one day make happen.

Amongst all the empowering conversations, there were times when we talked about how sad, angry, afraid and just over-all frustrated we were at what EDS has done to us. As much as I don't wish having EDS on anyone, it was nice to know that other people felt the same way and that I wasn't just being a whiner. I realized that when we go through everything we do, having these feelings is normal and healthy. What if we just denied everything, or didn't give our-selves the chance to just be ? I think the consequences of that, would be far worse than what we experience when we face it all head-on.

Before leaving for the conference I was initially nervous about the whole thing. I knew it would be good for me to go, but was feeling cautious. I was afraid of it turning into a big crying fest, and just being presented with all the doom and gloom of EDS. It was the complete opposite, and I didn't want to leave. I was in a place where I felt normal and like I belonged, where no one stared, judged my decision on how I was choosing to live with it, or told me that what I was doing was wrong. For the first time I didn't feel like a nuisance for having EDS, I was allowed to be me and it was wonderful.

I'm sure as I finish processing it all, I'll have more to say about the conference. I am forever greatful that I had the opportunity to go. I gained new information, a renewed confidence in how I'm living with EDS, and most importantly new friends. All in all, I couldn't have asked for anything better.

To all of my bendy friends wherever you are, I admire the courage and strength you all have to wake-up each morning and face the day.

" Some people think that holding on is what makes one strong; sometimes it's letting go"
(Sylvia Robinson)

1 comment:

  1. Sounds amazing! I've been lurking on your blog for a few weeks now and I'm a fellow "bendy friend." Funny story--my partner and I have adopted 4 children and our little girl has special needs. At one of her genetics appointments, her genetecist noted her hypermobility and questioned EDS. My first thought--what gives?! I opt not to have bio children and I unknowingly adopt a bendy one?! Hope you're having a good day!