Warning: It isn't all California sunshine, rainbows and Mickey Mouse ears.
On June 11, 2013 I left the Vancouver airport and landing at the Santa Anna 3 short hours later with 11 members of my BC SMA family. We were there to spend an incredible week at the Disneyland Hotel, in Disneyland, and at the annual SMA Family and Researcher conference.
SMA is Spinal Muscular Atrophy, a type of Muscular Dystrophy that myself and many of my closest friends have. It is "a genetic neuromuscular disease characterized by the degeneration of motor neurons, resulting in the weakening of the muscles in the body," according to wikipedia. What Wikipedia doesn't tell you is that this disease cannot limit us. Not if you don't let it. It can't put us into boxes of "type 1," "type 2," and "type 3" and leave it at that. This is so far from a complete definition. This week with over 1000 people whose lives have been touched by this disease proved that so completely. SMA is very different from person to person, in how it affects people who are told they have the same type. What is often more similar is the way we live with it, the hope we carry, the moments we cherish, and the friends we hold close.
This was the first year my family attended the conference. This was not for lack of hoping and wishing we could go, it had just never seemed like the right time. This year, it fell during my last week of school, before I had any exams. This seemed like the perfect timing, and when weighing the options, I truly couldn't imagine giving up the opportunity to simply spend my last week of high school sitting in classes. I want to always chose to live my life through every amazing experience possible.
Almost every year since before I can remember I've attended the SMA family camp my mom and best friend's mom started 14 years ago now. This is always a highlight, and I expected this conference to reiterate many of those positive feelings we get from our camp. However, it was so much more than I could have ever planned for.
We began the conference with a Meet and Greet on the Thursday night. This included all the conferences attendees, large amounts of food, a carnival for the kiddies, lots of photographers, and a relay race between the kids and the researchers. Not only is the Conference an incredible way for families to meet, but also for the hundreds of researchers around the world to meet many of the faces behind all their countless hours in a windowless lab. At the Meet and Greet I had the opportunity to get to know many of the Canadians I had only heard of, through friends and through Facebook. I also met up with many of my good friends I hadn't seen in quite a while - which is always great.
On Friday I started my morning with some conference sessions. For lunch we ate with all the Canadians, which number 8-0 this year! An all time high of Canadians crossing the border and representing at the conference. We are all quite close despite the large distances between us. Must just be the Canadian way, eh? After this, we spent the afternoon at California Adventure; I went on my first roller coaster (for the first of three times!), went on Soarin' over California, and many other awesome rides.
After our busy afternoon/evening at the park, we raced back to the conference centre for the Researcher Poster Session. This was actually such a cool event! Every research company had designed an easy to read poster describing their treatment, therapy, or hopeful cure that they believe will one day help us. They were all very friendly, and really wanted to make a difference with their work. I stupidly took Biology 12 this past year, and by the end had no idea why I decided to take it. However, looking at the posters and listening to the researchers speak throughout the weekend made me actually thankful that I took that horrible class. Suddenly I found myself understanding much of their technical terms, the explanations and the pictures they were presenting. I never thought that class would come in handy, for anything, but now I'm ever so glad I took it! After the session the entire group of us were taken into Disneyland as a whole, over 1000 people, to watch the fireworks from Main Street USA. They roped off the entire middle of the street, and we sat and stood with family, and friends new and old to watch the amazing show as one incredible group. Once the show was over, we decided to stay to beat the lines at the Peter Pan ride, which turned out to be an hour long ordeal, waiting for them to ok the area after the fireworks - opps!
Saturday was a full day of conference for my family. I began my day much, much to early, with a Zumba class at 6 am. However, I absolutely love Zumba, so it was more than worth it. My best friend Shailynn and I were the only ones who showed up until near the end, and the teacher had never taught it to people in wheelchairs, so it was an interesting experience for all of us. After breakfast we then began the morning with a session called "It's A Wonderful Life" which we had heard rave reviews on. It was a great session, with 5 or 6 adults with SMA simply talking about how wonderful their lives, and ours, truly are. One man had written a book, two of the ladies had children, and one lady was 55 with Type 1 SMA, the type doctors usually say will be terminal around the age of 2. That particular lady loved talking about her sex life, a l-o-t, throughout the day, which was..interesting. As a whole, the session was one of the highlights. These men and women had accomplished so much, and never let any society built boundaries stay in their way. After this, Shai and I attended a Yoga class, which was really interesting. The rest of the day consisted in this and that, the occasional class here and there. In the evening I chose to go with my friend Brooklyn (who has an awesome blog of her own you should check out - http://forthewhitecrayons.blogspot.ca) to the Adult Social. Here we visited with the "adults" ranging from 18 like us to their 50s and 60s. I really enjoyed this event, as it was so great hearing all that these people have done.
One of the most incredible parts of the weekend, to me, happened at this Social. It wasn't anything monumental, it didn't come accompanied by fireworks like other events had, but it was so humbling and awe inspiring. A man wheeled his 20 something son up to us to chat. His son was a weak type 1, laying down all the time and unable to talk like you or I would. At first, we thought we were talking only with his parents. But, his dad kept speaking as if his son were. Then, we noticed it. His son didn't have the strength to utter a single sound, yet, he was having full conversations with us, through his incredible father. His dad would ask him something, and the one finger he could move would twitch, "a, b, c, d..." His dad would do a guessing game, of letters, then words. Until his son completed a word, a sentence, and then a story from his day. In this way, we were communicating. And it was one of the best displays of human adaptation and strength I have ever witnessed.
Sunday was a hard day. It was the end of the event, and it started with a terrible reality that hit us all in the face, and the heart. We learned that at this very conference, we lost another Angel. We were here, on that day, about to learn about all the medical advances, the treatments in progress, the hope we all had buried deep inside us, but it was too late for someone, yet again. This was so real. Not one eye was left dry in the entire room. Many of us were not sure if we had met this little girl, but as of the day before she was enjoying Disneyland like the rest of us. She should have still been.
After this, we solemnly heard about the incredible research thats been going on this past decade, so much of which is so close many people can actually touch it. A few clinical trials were progressing, with results that looked promising. One in particular is something I hope to look into, although I truly don't know if I can volunteer myself for needles, as much as I wish I could use the opportunity to make a difference. The really amazing part of the researchers speaking was that this disease that brings all of us families together, also brings so many researchers with such different beliefs and ideas together. Unlike many diseases, the researchers don't feel the need to compete against each other (as much). They aren't all fighting to find that one drug that will miraculously fix all that is medically wrong with all of us. There's so many aspects to this one disease, that many different companies need to perfect their specific approach, so that it can be taken in conjunction with the other companies' for something to have a truly positive result. This is such a cool thing to witness. Very little fighting between the companies, because they all need each other to succeed.
Just like in life, we all need these people; the family related to us by blood, and the SMA families we've grown so close to from around the world, so that we may succeed in our daily lives as well. I wouldn't be half the person I am today if I hadn't grown up with my 50-100 person-big SMA family to lean on.
I left California exhausted, but so inspired. It was a truly life changing week, in every sense of the word. I left that place in a completely different mindset than ever before. I had the opportunity to see so many people who had done the things I hope to do with my life, things so many shrug off as if it's some crazy dream I couldn't hope to reach. I had a new found yearning to push myself as hard as possible, to gain more and more strength back, because I am so incredibly lucky to still have so much, and to continue to push past all that I've been told I can't do, because I do know I can.
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