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...
As we skyped he told me that he googled "HIBM" to find more information. What was the first thing that popped up? First, my blog. Second, my skydiving youtube video. How odd. That is how he found me. He said he was amazed that someone with a disability could skydive. In India they would never think anyone with a disability could lead a normal life, but seeing me skydive gave him a different perspective that yes, maybe he too could do such a thing. He made me promise to skydive with him if he ever visited the United States. I pomised I would.
Since, we have been in contact and I have to give bonus points to Rushabh for being very persistent ;). I explained to him earlier that if he doesn't hear from me in awhile, it's not because I don't care, it's just sometimes I can get quite busy. These emails with patients are not just a one time deal, but they turn into a relationship over email or other social networking avenues. They want to talk about HIBM, their feelings and the progression. Rushabh has definitely made sure to keep in contact ;), and rightfully so. It's a scary thing and all they want to do is find someone who will understand and "know" us.
The second time I had skyped with Rushabh, he warned me prior that he had a surprise for me.
"Can you tell?" as he waived his head on the skype screen
"I dyed my hair red...just like you" he said happily.
When he said that the first bit of HIBM information he was exposed to came through my blog, it took me back to when I was searching for answers. He was diagnosed fairly quickly compared to other patients. It took me SIX years to get diagnosed. I experienced a very tumultuous diagnosis journey. It was truly awful. When I finally did get diagnosed by the Mayo Clinic in Minnesota I was exposed with less than positive feedback. I was told to quit my dreams and that I would never see research being done in my lifetime nor meet another patient because it was that rare. Thinking my doctors must be wrong, I would scour the internet but somehow found no information, no leads, just a looming prognosis. I was completely alone for years...
Then when I met ARM in 2006, that all changed. As I've said before here, since HIBM is most common among the Jewish Persian community, ARM was primarily appeasing the very wealthy Jewish Persian circle hoping that their own would be the ones to quickly fund and support a treatment for a very treatable condition It didn't quite happen as quickly as it could have for such an affluent community. While the founders of ARM knew HIBM affected other ethnicities, the community did not. They were still under the falsehood that HIBM only affected Jewish Persian. But, here I was, a Korean American with HIBM walking into a very ethnocentric, yet influential culture in LA.
And, that was the moment I began trying to help open up the world of HIBM to all patients and communities.. Prior, it was only the ARM founders who were very public about their HIBM. Everyone else in their community was behind doors scared that the knowledge of their genetic condition would be exposed among their peers. I guess I was the third patient to become very public and it was my mission to seek anyone who was also willing to share their story.
Today, it's very different. HIBM patients are connecting with each other all the time due to social media and I have met so many during this journey, something I was told in Michigan would never happen. I meet them from all over; America, India, Italy, China, Ireland, England and I even traveled to Japan to meet a very large patient base, the second most commonly affected group.... I receive emails all the time. Just yesterday I received an email from Poland from a patient who was just recently diagnosed. It's quite interesting. It's an odd thing, since HIBM is so rare yet reflects such diversity in who it affects.
Rushabh is young. Very young. He has shared many things with me and above all honest in how it affects him emotionally. Through HIBM, he has even found family in India that he wasn't aware of. That family has HIBM too but are living in privacy. In fact, more HIBM cases are being revealed in India, displaying that many patients are often misdiagnosed. That means, there are so many more than us. If you can imagine, India is not a great country to have a disability in. Like many countries, disabled is seen as the worst thing you could possibly be and often you are tossed to the side as an unproductive creature among a "normal" society. Despite the negative stigma, Rushabh does his best to try and semi-publicly share what he can.
Last month Rushabh and his parents visited California to meet me and the ARM founders. When he walked in using a cane to assist him, he reminded us of our past. That beginning moment of realizing a you have a very awful condition is very difficult. We talked for a little while. It was touching to see his parents with him and how supportive they were and when his mother broke out in tears it was hard to see.
Recently, I asked some patients to submit brief testimony clips to me so that I could share with the followers of Bike for Kam. Rushabh was one of them. He asked me to edit his video and delete parts, but I included everything he said. I thought his words were open and honest and something that others should hear. In this video above he makes a poignant point to not discount that this is a rare disease for it affects the friends and family of patients too. He also states that he is at an age where it's time to embark on his young adult adventures and go through all the typical milestones like learning how to drive. Instead, he has to watch others live his life. That's so honest of him.
I'll have to say that I'm not completely honest on here. It's a slow reveal for me, but if I didn't say I didn't have these same feelings then I would be lying. I think if I share that feeling then it's as if I'm self entitled and deserving of a good life. It's not a, "why me?" because why anyone? But these are honest and valid feelings and I do watch others wishing I had what they had. I sometimes get angry watching others misuse their life and potential when they all have all the capabilities in the world. Again, a normal reaction to loss. These feelings have grown especially in the last couple years. One thing I do actually know about myself is that my whole life I've worked very very hard for everything I have. Absolutely nothing has been handed to me. I was slightly sheltered from adventure and a free-spirit type of lifestyle as a child but, I had secret plans. I was going to escape. I figured after I graduated highschool I was going to break loose from parental chains, put myself through college and experience everything I had daydreamed about in my mind as a child. I was going to work hard so that nothing could stop me. Then HIBM came. How unfair it seemed that as soon as I got old enough to do all these things-HIBM came into my life to limit me. It felt like a cruel joke. It's illogical, but sometimes the "why did I even try and work so hard, when it was going to end up like this?..." has temporarily creeped in my mind. In the heart of a moment the self pity mode can become rampant and complex until we snap ourselves out of it.
Please watch Rushabh's share his story and check out other patients, including a family where all FOUR siblings have HIBM: http://bikeforkam.com/meet-other-hibm-patients/
Bike for Kam began in 2011 by my friends and I. It was a means for me to break off into grassroots and focus on engaging communities who had never heard of HIBM. I wanted to make it personal and so we centered it around a person until we gain a following, but it is an effort to raise awareness about all patients and how HIBM lives in our lives. Please share our project and join us. Personally, I don't want to be blogging about HIBM in ten years....