We are all sitting at my cousins house in Florissant, MO, exhausted from the Juvenile Arthritis Conference that was held this weekend in St. Louis! It has been 4 days of networking, connections, family, friends, making new friends, stories, excitement, tears, and so much more!
Day one of the conference and I (Fearless Leader Joey) had the chance to be a speaker in front of all the parents at the opening session. This is something I had been anticipating, wanting to tell my story to the parents to show them that you can overcome Juvenile Arthritis.
I spoke second after Arlen Harris, a former NFL running back for the St. Louis Rams! I had no idea that when I stepped onto that stage, I was sitting next to a former NFL player whose family, and himself, have been living with rheumatoid arthritis for a long time. I have never even thought of playing football due to the physical aspects of the game and how it could affect my arthritis. To hear his personal story of overcoming his arthritis in college and then too play in the NFL is inspiring to me. That takes true courage and such a high level of mental ability to compete professionally in any sport, let alone with arthritis! Thanks for the story Arlen, it was the first of many wonderful things I heard during the conference!
When it was my turn to speak, I basically choked up within the first 10 words... I find it hard to speak of the troubles I have been through, it brings back a lot of painful memories. But those painful memories have pushed me to realize that my story, and what I am doing, is worth telling people. How I have overcame everything from complete immobility, spiking fevers of 105, swelling of the heart and mostly everything else that comes with Systemic JA to biking across the country. I felt the need to share my story in hopes to inspire the other young kids with Juvenile Arthritis that it is possible to beat the pain. That you have to DREAM BIG! Even though it hurts, some days worse than others, you cannot let it stop you. Indeed it should only push you further. You are living with a disease that in the end, makes you stronger. It makes you a fighter, someone who will work harder than your average Joe to complete a task given to you.
From the response I got after the session was over, I can safely say I have completed a task given to me. To inspire. Many parents came up to talk after the session and were just so thankful for what I was doing. They were so happy to see someone who has overcome arthritis and is actually biking across the country. Their eyes were wide with joy that their kids can also overcome this disease. They all had questions and I was happy to answer them to the best of my abilities. What I heard most in response after I was talking was how I needed to go talk to the kids groups. How my son, or my daughter would just love to meet you! To have these parents tell me that their kids would truly appreciate seeing someone who has overcome arthritis and is doing what I am doing made me happier than I have ever been. My heart, like the Grinch, grew three sizes bigger that day.
Everyday since then, parents have been asking if I can take pictures with their kids. They stopped me everywhere to tell me how thankful and inspiring I am to them and their children. Matt and I got the chance to talk to 2nd graders, 6th graders, 5th graders, juniors and seniors in high school, and 4th graders. While telling my story to the 6th graders I was nearly brought to tears... I actually had to fight them off in front of all the kids. Parker, a 6th grader with Systemic Juvenile Rheumatoid Arthritis (same as me) told me that I was a big inspiration to him. He had never met anyone with systemic JRA before, and for him to see that I have beaten what he is going through, has really inspired him. Thanks Parker, that is my biggest goal of this trip, and for you to be the first person to speak up and tell me that made me even happier than when all the parents told me how inspiring I am. It's the kids like you that inspire me to do things like bike across the country.I am actually shedding tears typing this right now. So again, thanks Parker, I am going to find your blog and I can't wait to start reading it!
After making all the visits to the kids rooms we couldn't walk anywhere without having to stop to chat with someone. It was wonderful! All the kids would stop to ask me how I was doing, or if they could take pictures with us. They all had the biggest smiles on their faces and it only put bigger smiles on our faces. We were so happy to have had this opportunity at the conference to meet all these kids and their parents. It is all of you that inspire me to do what I am doing. To see everyone in such a great atmosphere, happy with their new friends, hardly even realizing that they even have a disease to begin with... This is exactly why I am raising money for these kids, because I know it is going to the best cause in the world. To a cause of putting a smile on a kid with arthritis, to inspire those kids, to create new drugs, and in the end find the cure!
There is just so much that happened during this weekend I could write a book (Also, a goal in my life). To the parents telling me stories of their kids telling them stories of me! To the St. Louis Cardinals game where everyone waved when we entered like we were some sort of celebrity. To the abundance of new found hopes and dreams! I want to thank everyone and the Arthritis Foundation for hosting this event yearly. I will be there in Anaheim next year!!! Like former Miss Michigan said that it is her cause to tell communities her story, it is also mine. That now shines inside of me brighter than the north star in the Arabian Dessert. I believe I will continue to do adventures while raising awareness that "kids get arthritis too". To tell my story while doing it in hopes to continually get donations to the Arthritis Foundation. Some of you may have heard me even say so, but I think I am on the road to becoming a "professional adventurist/advocate". This conference has sparked what a pooling sense of being inside me, and now the fire has started, I don't think it will be put out for years. As always I cannot say thank you enough!
Aside from the conference, it was great to see our friends from Wisconsin. Maggie, Stacey, and Sean all came to volunteer at the conference and had a blast while doing it. Nate even got a surprise visit from his sister Hannah! They all learned new things and have a new found respect for arthritis! We did awesome things like celebrate Seans' birthday at a dueling piano bar, go the St. Louis Cardinals vs. the Cubbies game, and have a blast in the pool! It is always good to have a little bit of home come to you!
The conference has ended today... It is always sad to have to depart from the friends you have just made. But you leave with so much more year after year. You leave the feeling confident about yourself with a feeling that you can love life even with arthritis. I was approached by someone after the last session ended and he came up, shook my hand, and gave me a hug. He was crying when he told me how inspiring I was to him and his kids... Talking to him didn't last more than 15 seconds but it sure made me cry right there. The world is filled with such kindhearted folk to not love life. I will forever remember this weekend in St. Louis... It has been the most inspiring weekend of my life.
Thanks to everyone who offered us places to stay! Please, feel free to leave a comment if you think we will be in your area! If you want you can also email me personally at michelsjoseph@gmail.com if you don't want your information on our comments! Please comment about anything and everything! We would love to hear feedback and/or possible ideas of advocacy or fundraising! We hope to stop and stay with as many of you as possible! So please, follow the blog and let us know! We are planning our route in the next few days and we would love to squeeze you in!!!! You all have blessed us with your kindness, so thank you, we appreciate it with all our hearts! Tell your friends and family, share the blog with everyone! The more people the better for awareness!! Thanks thanks thanks thanks THANKS!
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breakfast spot in the Marriot!
St. Louis Cardinals vs. The Cubbies
Wonder what that funky think in the left is???
Stacey, Matt, and Sean
cats in water
the Mall
Just overall a giant place
Front room by check in
elegant eh?
Juniors and Seniors at the JA Conference with Miss Michigan!
Arthritis Foundation... DUH!
Matt giving you the YOU SHOULD DONATE face!
somewhere in China...
this is what Matts Arch support looks like...
Pictures of Picture takers
raincyclists with Maggie, Stacey and Page
Joey, did they record you speech? It would be so cool to listen to it. You guys indeed left a trail of inspiration across America, like Hansel and Gretel's bread crumbs, only yours will last a lifetime. Keep posting about your adventures along the way. God Bless!!!!
ReplyDeleteThe on demand video of the speech can be found here http://www.arthritis.org/2012-ja-conference-tv.php
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