In a few minutes I will be heading to San Francisco to launch Bike for Kam 2012...
As I'm waiting for my friends to pick me up, I'm sifting through old videos and posts from 2011's ride. I put this little video together to share the SF launch after they departed from Golden Gate.
It won't be quite like this this year, as I don't live in SF anymore and can't house and welcome them with food, but should still be fun.
This post has been a long time coming. I meant to share about Rushabh when he emailed me back in August 4, 2011. I dug in my email archive to retrieve his introduction email to me. His email is like so many I have read in the past six years.
"Hello kam I m a 22 yr old boy from India with hibm/dmrv I have seen your videos and have read sum part of your story they were gr8. I'm really happy to see someone unique like you and me as there are just 1000 ppl with this type in the world. I'm here to make friends with the same unique ppl with hibm/dmrv to know and share hibm/dmrv experiences of theirs and mine...most of all I'm looking forward to interact and talk with you
I have sent you requests on facebook and on skype which will make our communication easy."
Soon after his email we connected via skype and he told me all about his story, his family and HIBM. He was just 22 years old and just recently found out that he had HIBM. His parents had known a few months prior but withheld the information so he could finish his college studies worry-free. After graduating the news was accidentally unearthed by his doctors in Paris. He was devastated...
Wanted to share some other HIBM faces on our Bike for Kam website. I don't have a real camera or professional editing skills, but wanted to share other stories like mine in whatever capacity I could. The project isn't just about me. My friends and I started it, but it's meant to be about HIBM. I shot this video with my iphone and invited other patients to submit clips of themselves in whatever form they were emotionally or personally comfortable with.
The main characters is Dr. Daniel Darvish and Dr Babak Darvish, Founders of ARM and HRG, HIBM molecular laboratory. They are HIBM patients and even if I didn't know them, I would think they have an important story. I hope it gets told one day. They were the first patients I had ever met and we have been together ever since. When I was filming this, and in between takes, they recalled how many years we have been together and couldn't believe that it's been almost six years. In which I replied, "wow, it's been so fun..." in a semi sarcastic, yet playful manner. They're not just research scientists, founders of organizations, but they are HIBM patients. It's important to see that first. They've become more than that, but my friends too...I've seen some of their most intimate moments but despite their struggles, they still proceed. They will never benefit from their life's work to the extent that newly diagnosed patient may. And, they know that. So, I have to respect and admire that. That's 2+2=4. It's hard seeing a friend struggle and in those moments know intimately EXACTLY how, when and why they struggle, and I guess I want others to see what I see. In no way are they perfect, but they're human.
I compiled some other patient clips that were sent to me in video form and uploaded to our BikeforKam site. Get to know them, too. Meet other HIBM patients
I had started this post right after we filmed our Bike for Kam promo video...but it kind of got lost in the shuffle. I thought I would post it anyways.
In April I met my friend, Stephen, for lunch in Venice to bounce some ideas around for the 2012 promo video. He had created our 2011 video, and was on board for another one. We came up with the idea of doing it in Big Bear. Our 2011 video was filmed with a typical LA beach backdrop, so we wanted something different. It was also just Viet, Andres and I in the 2011 video and so this year Stephen and I wanted all the guys who participated in the 2011 ride to be in this video. It sounded like a good idea. Beautiful scenery, cabin camping and trees--all the guys were in.
Scheduled for a Saturday morning filming, we all stumbled up to Big Bear in our own time. Stephen invited his friend, Scott, an old art school mate and colleague, to come up and aid in some filming. They drove up on Friday night so they could scope out the area and be ready for a long day of filming on Saturday. I didn't know, but they had never been up to Big Bear. Like me, Scott and Stephen are Michiganders, and some good midwest nature and trees had been something they were missing in the sea of LA. Scott was equally as cool as Stephen and its nince absorbing all these new friends through Bike for Kam.
Since I hang out with guys, that means I have to be cool with being ready at a moment's notice. I wasn't quite sure when we were driving up, but a couple hours before, this was at 9pm on Friday, Ben texts me and says, "Let's head up at midnight". Cool. On Friday Viet, Ben and I drove up into the Big Bear mountains at midnight and the rest of the guys staggered in between 11 and 1pm on Saturday. We all stayed in my friend's cabin and it was cozy and nice. Call it the midwest girl, but I love anything with alot of people in one area, relaxed while enjoying food and each other.
The day of filming on Saturday turned out great. It was a great day. Big Bear took advantage of its last days of winter and we were handed a beautiful backdrop. The weather was perfect and the sun was sensitive. We trekked around Big Bear following Stephen and Scott's lead as they peppered camera angle ideas between themselves. "Make me dance, clown!"
This sunny afternoon...I really want to walk...like I used to. I'm sorry I never really appreciated you when I had you. If I had you back, even for just one more day, I would show you how much I love you and how much you meant to me.