The circus comes to town

In between now and my last post, the EDS circus came to town. It's been nothing short of crazy but hey, at least it hasn't been boring and monotonous.

I spent from Friday until Sunday in bed. The weather was rainy and gross in addition to my hormones going crazy (I'm sure you wanted to know) which left me feeling like chewed gum. The big-invisible jaws were gnawing on me the entire time. Woot! Sunday the Toronto and area Bendy Posse had planned a day to spend on the island. Yes, Toronto has an island, it's a giant park and nothing short of awesome. We had planned to spend the perfect day there but it was a swamp from all the rain and it was still raining. We ended up going out for lunch instead. mmmmmm

On the way there I broke the wheels. Yes, you read it right...I broke my wheelchair. I was going across a cross walk, on the other side was a raised curb. My bendy friend who came with me, helped me maneuver alongside the traffic (because the light had changed) and up a sloped curb we eventually found. In those moments of craziness, my front wheel broke. The plastic "spoke" bit snapped, and the wheel itself came loose constantly collapsing on itself. I've been calling around the City of Toronto to find someone who will help me get it fixed and pay for the repairs.

My room mate has also informed me that I have been sleep walking. WTF?! When I think I'm sleeping through the night (on those rare occasions) I've been walking around my room talking and laughing. I make my way to the washroom, then the kitchen to turn on the taps. There really isn't a need to for me to be up, and I keep a liter of water beside my bed. She says I do it all in the dark. One of my biggest questions, is how do I manage to do all that and not hurt myself? On a regular day I'm a proprioceptive mess.

I know that trying to get back to school, dealing with all that EDS has to offer and turning to mush hasn't been particularly nice to me emotionally, but I didn't think it messed me up in the head that much. I think it may be that during the day, when I'm at work, or out and about I'm distracted. It's the time before work (mid-morning) and when I'm going to sleep is when it all catches up to me. Those times are usually spent at appointments, filling out paperwork and fighting with doctors and for funding. The majority of those result in "defeat" or rather another obstacle and more red tape. My favourite things. For the most part, I can pull it together and be on my way to work. I turn off that part of my brain, and let go of the anger, frustration, sadness and fear.

I get to work, and loose myself in a world that is filled with play, art, teaching and magic. This week included getting an ass-kicking in public, with curious by-standers. Quote of the day "He's fine, just a tantrum." I'm surprised no one called the police. Even with that, I love my job. There were a few times at work this week that were a cruel reminder of what I've lost. One of the kiddo's asked why we weren't going paddling and to the climbing gym this year. Last year, I took him paddling and he had a ball. We went climbing every week, where we worked on co-ordination and motor planning while pretending to be Spider-Man. Kiddo used to live for the climbing gym, he loved it and has made incredible gains from it. Going to the beach is awesome, but I'm not the only one who misses experiencing the world from the water and off a wall.

Just before bed, I spend a couple of hours winding down and trying to make peace with the negativity that likes to creep in. Sometimes I can make it work, but it is rare. Most of the time I end up crashing with thoughts of all the negative things that have been thrown at me that day, or things that have been eating away at me. One of the things that people are often asking, is if my plan "C" will work, and what I'd do if it didn't work. I'm given reasons of why it can't work, what I should be doing instead because it's the "safer" choice and that I shouldn't be risking anything. I've also been thinking about weather or not I want to have kids anymore. Adoption has always been in the plans, but now I'm not sure I even want to do that. There is nothing more that I'd love to do than to be a mum. I've always wanted to travel the world with my kids, and let them experience all the enriching things the world has to offer. I can't do that when I'm stuck in bed,need a wheelchair or am just plain exhausted. It's possible for lots of people who have EDS to raise kids but I don't want to if I can't be the mum that I want to be.

I sometimes wonder when these hellish days that seem endless will finally be over, and if things will ever start turning around. That's usually when I stop caring about everything all together, and that's not cool. Life is much easier when you've got goals, drive and passion. When those things are gone, even temporarily, it becomes much more difficult to make it through the day. Slapping on a smile, and going through the motions works but I never get anything out of it, numbness is sometimes the only constant.

This weekend, I was involved in a study on EDS and proprioceptive awareness. The cool thing about it is, one of my bendy friend's girl-friend is running the study for her thesis. It was nice going into a lab, and having the person running the tests know what living with EDS is like. She was more than prepared to give us breaks to lay down or stop when sitting and doing the tasks became painful. I didn't have to explain any of it, she was the one who put it out there and that was awesome.

I've learned to look past all of the "milestones" people my age generally "achieve". I know it's unrealistic to have the same expectations for myself and quite frankly, I'm not ready to slow down and start being a "grown-up". I don't want anything close to a mortgage, or to be tied down at a job where I can't just get up and leave. For that, I am happy. Even with all the craziness and uncertainty there are major benefits. I'm trying to look at regression and loosing everything as opportunities to try new things and experience the world through a new set of eyes.

I'll finish this never ending post with something positive. After I had the disaster of a root canal done in November, I lost the ability to clench my teeth and fully close my mouth. That resulted in a bunch of TMJ issues and all the fun that accompanies a joint that is very unstable. I woke up on Friday morning and my jaw was really tight. No surprise, that was normal. The more conscious I became, I realized that I had been grinding my teeth and I could clench my teeth. Hopefully eating will become a little easier and I'll continue with that up-swing. The chiropractor has been doing Active Release treatments on my jaw for a while. It can hurt like a mother, and is totally worth it. It took ten months, but I made PROGRESS. Such a beautiful word.

"Invariably, a sudden disappointment, a bit of "bad" news, or a flock of butterflies gathering in your stomach, are all omens that a fabulous adventure is fast approaching."

Out of the poopy stuff comes enrichment

Loss, it's been a big thing around here. I won't lie, it hasn't been easy. There are many days when I really miss my old life. A huge list of things I miss could be placed right here, but it's unnecessary. Making a list won't bring any of it back, or make it any easier to deal with. Instead, I'll go on about the enriching experiences that have come from this mess, and all the things that make me come alive.

I don't think I need to talk about how important the switch to natural medicine has been for me. I'm sure you all know by now my thoughts on it, and how important it is to my overall well-being.

Because I love food, we'll start there. When I first gave up eating wheat,dairy,corn,oat,grains and caffeine the whole idea of living without these things looked daunting. How would I get by without all of it ? The first while was a little hard. I had to replace pretty much everything I was eating and find a new way of doing it. Almost right away, I noticed how much better I was feeling. I didn't have insane reflux or stomach upset instead, I had energy and felt like a million dollars.

I used to spend a lot of time on the water, I'd be in a canoe or kayak as much as possible. I've made some incredible memories and wouldn't trade them for the world. Finding new outlets to replace paddling was hard. I didn't think there was anything that would come close, and there hasn't been. It may be that I don't want to believe there's anything better, or abandoning that idea would somehow make me loose that part of my life's story. Either way, I have had many new and brilliant things come into my life that otherwise wouldn't have happened. For that, I am thankful.

There is nothing better than hanging out in a park with friends on a warm, sunny afternoon. Throw in some alcohol and other deliciousness, and life is good. Drum circles on a summer's evening with a whole bunch of people just chilling out, dancing and jamming with their own instruments is also a blast. Let's also not forget all of the festivals that happen with a bunch of friends.

If I were still able to paddle, I would have left the city for the G20 and gone to play in the water somewhere else. Looking back, I'm glad I was there to experience it and see more of the real problems that are happening in my back yard. What happened to this city during the G20 summit was horrible. There was a disgusting amount of police brutalization that thousands of people had to endure for no reason. So many of our rights were violated. The police force, and the government were caught lying on multiple occasions trying to make Toronto's diverse group of advocates look bad. People who are responsible for the mess keep passing the blame and pussy-footing around the subject. They're cowards to say the least. This has allowed me to be one of the thousands of people who's voice won't make the problem just go away, or let the public and the country forget what happened. We're in it for the long-haul and it will eventually get dealt with, justice will be served for all of the people who suffered at the hand of the police and the government. Nobody ever got anywhere by being quiet.

Having to give up climbing has lead me to start taking Taiko lessons. I miss scaling the walls, but banging on a huge drum with a bunch of cool people is just as awesome, maybe even better.

I'm going back to school. I can't do my jobs anymore and need something different. As much as I love what I do, it's time for a change and I've found two things I'd love to do. Being an Art Therapist or a Child-life Specialist will allow me to continue working with a holistic approach and give me more opportunities to work with different populations of people. What could be better than playing and doing art for a living while helping others become okay with what's happening to them ?

I guess the most enriching thing that's come from all this EDS poop is figuring things out spiritually. I found something that makes sense, is practical and something I put into practice all the time. It's allowed this transition to happen probably a lot less painfully than what it could have been if Buddha had not been my home boy. A lot of people ask how I can stay positive as often as I do, how I manage to chill out and get back up when I get knocked down. Well that's my answer....

The other priceless experiences are the ones I see everyday. A lot of people think that living in a big city means I'm at risk for ending up on the 11pm news. I'm glad to say that's not the case. I've met some of the most incredible people while living in this city. One of the things that I love is all the diversity that surrounds me each day. I've been able to check out the incredible cultural neighbourhoods and get a little glimpse of life from all over the world. I've met people from different socioeconomic backgrounds and have had some amazing conversations. The biggest commonality with everyone I've met is kindness and it's humbling. Sure, there are still all the things that happen in a big city and a few bad apples, but I see kindness everyday from all the people who make up the place where I love living.

"Don't ask yourself what the world needs, ask yourself what makes you come alive. And then, go do that, because what the world needs, is more people who come alive."

(Howard Thurman)

Three words that are often ignored

There are three words that are important, often ignored and are a sign of good things.

These words are: I'm fine, thanks. It seems so simple, but it is often over-looked.

I went out to a movie with my friend last night (Scott Pilgrim vs. the world='s awesome!), and took the wheels. I had a lot of obstacles to get through because the city isn't really all that accessible. Regardless, I could make it on my own no problem. There were a lot of people who asked if I needed help, which is lovely to think about it. I'm glad I live in a city where people look-out for each other, I see it everyday. What drives me absolutely insane is when they offer help, I tell them "I'm fine, thanks" (with a smile) and they still try. It usually comes in the form of questioning, or them physically trying to help me maneuver. Even when I pull out the "I promise, I'm fine thanks" in a firm tone, they still seem to ignore it. Maybe I should start barking like a dog, and embarrass them instead. It was really hard to contain my anger and frustration. I did it because I don't want to burn any bridges for other people who would need and appreciate the help. Just because I've got wheels, or it appears that I might need help it doesn't give ANYONE the right to ignore me, invade my space and not trust that I know what I'm doing. On the flip side of that, there's feeling like a burden. I know I'm not a burden, it's all perceptive. I don't think many people realize how important independence is. It got to the point where I was about to have a little melt-down on the subway platform waiting for the train. This is coming the girl that doesn't really cry, and never cries in public. Ever. And then, there were people saying "God bless you", WTF?! Seriously?! "Oh, that poor girl in a wheelchair"... give me a break!

Today I was talking with a friend who's been trying to convince me to try this new treatment for a while now. There are three reasons why I haven't tried it yet. The first being money, getting the other treatments makes me broke, but they're essential so going without isn't really an option. I also needed to learn to process and accept EDS for what it is, and learn to live differently. The last reason is why I pretty much lost interest today. I know my friend is trying to get me to do this out of concern, but when I feel like I'm being lectured or have to defend my choices, I stop trying to like the idea. It didn't help that I was told that the reason for my wheels is from me getting the chiro,acupuncture and Active Release treatments. Forget the fact that EDS is degenerative and that according to the specialists at the conference, I'm doing everything right. I don't want to have any part of a treatment model that does not involve a multifaceted approach, or puts blame on other treatment providers that have been nothing but effective for me. I pointed out that I was getting frustrated with the conversation and where it was going but I'm not sure I got the message across. 2/2 days where I've felt the need to cry about it. I'm on a roll!

Just after that, I had a friend message me on FB to tell me a story about how they gave up their seat on the bus for someone who had crutches and braces, and how they were doing their part for the differently-abled. Ummm how exactly was I suppose to respond to that? "Do you want a cookie?". Do we really need praise and acknowledgment for being conscience of other people and their potential needs, also for things that we should do everyday anyway? As if being aware you're someone contributing to the universe, isn't good enough. Cookies for everyone!!! I think I should start giving out gold stars.

I'd like to thank my friends who respect my decisions, and let me do things as independently as possible, even if it drives them crazy.

Back to those three words... "Im fine, thanks"
There are good things about it. It shows independence, which is hugely important for us and just about anyone else. It shows we can handle things as they are, and personally, I find that empowering. Lastly, when we're fine, we're not in agony and that my friends, is priceless.

"Someone's opinion of you does not have to become your reality"

I have angered the EDS gods

Since my last post, I have not used my wheels.
This is for a couple of reasons. The first being, that I took it all pretty hard. The reality of the whole situation has been a tough thing to accept. It makes things that looked possible now appear daunting. Hopefulness and excitement sometimes turn to dread and other fun thoughts. The list of "Can't do" has gotten a little longer along with the "I'm not sure if I want to" list. It's a good thing that these negative, less enjoyable emotions and thoughts are only temporary.

As much as I love living in Toronto, it's not accessible. I'm so used to having legs that can walk me anywhere, and fast. Wheels and things that aren't accessible do nothing but slow me down a lot. I'm one of those people who have always walked fast, and sometimes want to throw stuff at the people who crowd the sidewalks slowly meandering in every direction. That combined with wheels makes me CRAZY!!! I went to Kensington market the other day http://www.kensington-market.ca/Default.asp?id=1&l=1 it's a couple blocks filled with independent stores, restaurants and community art. It's very pedestrian friendly,but not at all wheelchair accessible. I love going, but it's now grueling. The trip was worth it, as I got the most delicious vegan sandwich at the Urban Herbivore. http://www.urbanspoon.com/r/10/136285/restaurant/Kensington-Market-Chinatown/Urban-Herbivore-Toronto. On the way home, I found a Chinese medicine herbalist store. The stinky analgesic plasters (aka my new boy friend) we on sale, woot! It doesn't take much to make this girl happy.

The other night I must have angered the EDS gods. I was using my lap-top when I dislocated my middle finger. My index and ring finger are a little sore, but I think it's due to inflammation. The middle finger is being held (supported) together with Kinesio-tape and also gets iced. Can't use the wheels when you've got one working hand. I had to laugh, as of right now, I'm down to one working limb...It's a good thing I'm used to doing everything with one hand and have learned to adapt years ago. Today at work I took kiddo to the beach, we try to go at least twice a week. He lives about a 15 min walk, and it's such a great place to teach a ton of skills and apply things we've been learning in science. There's nothing like being paid to teach a kid how to be a beach-bum. There's major therapy embedded in it, I swear. I can still go to the beach, dig in the sand, play in the water and make mud creations even with one hand. Don't ever let EDS stop you from going to the beach.

In the last week I have to put into practice living moment to moment at times, and I had to face a lot of scary, unwanted realities. Getting through those moments can be hard, and harder if you're avoiding a good cry. Pushing it all down works for a second, but it gets more intense and harder to escape from. Giving yourself a couple minutes to feel everything as it is, and be whatever it is you need to be isn't fun but necessary. It allows you to get some of it out, so your can get back up, and continue on your way to forging a trail that looks more do-able.

" Your enemies = your teachers
Your failures = your wisdom
Your mistakes = your lucky discoveries
Your conflicts = your growth opportunities
Your undesirable endings = your desirable beginnings
Your grapes of wrath = your raison detre
Your painful feelings = your proud proof that you're dealing with your feelings head on!"

(How to be Happy Dammit!)

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)