Leaving for San Francisco

In a few minutes I will be heading to San Francisco to begin 500 miles of 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.  Last year I put this little video together to share the San Francisco departure from Golden Gate.

It won't be quite like this this year, as I don't live in San Francisco anymore and can't house and welcome my friends with food before they start their 500 miles, but this should still be fun.

Meet My Friend, Rushabh From Mumbai

This post has been a long time coming.  I meant to share Rushabh's story when he emailed me back in  August 4, 2011. I dug in my email archive to retrieve his introduction message 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 most don't think anyone with a disability can 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" them.  

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

"Not really...?"

"I dyed my hair red...just like you" he said happily.

I laughed.

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 and no leads, just a looming prognosis.  I was completely alone for years.

When I met ARM in 2008, that all changed.  As I've said before here, since HIBM is most common among the Jewish Persian community. ARM was founded by two brothers, doctors. One of them is a research scientist who dedicated his life to HIBM research and basically for free. 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 what is considered 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.  Much of the community was 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 Los Angeles.  

And, that was the moment I began trying to help open up the world of HIBM to all patients and communities.  Prior, it was mostly the ARM founders who were very public and out 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. Disability in this community, especially a genetic one, is considered a shameful stain. I guess I was the third patient to become very public and it was my mission to seek anyone else who was 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 have met patients 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, exhibiting that many patients are often misdiagnosed. This means there are so many more of 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. He's on a tour to understand all the groups and players involved with HIBM research, which is the best thing to do.

When he walked in using a cane to assist him, he reminded us of our past. That beginning moment of realizing 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. When his mother broke out in tears it was hard to see.  

Recently, I asked some patients to submit brief testimony clips so that I could share with our Bike for Kam supporters.  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 not 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 know about myself is that I've worked very very hard for everything I have. Absolutely nothing has been handed to me. I saved and paid for everything from 15 years on. I was slightly sheltered from adventure and a free-spirit type of lifestyle as a child because of a strict upbringing 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 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?..." temporarily creeps 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. It's natural. It's part of the process in a life that will forever teach us and challenge us.

Much love to Rushabh and this new, sometimes unfair, journey.

Please, watch Rushabh's story and check out other patients, including a family where all FOUR siblings have HIBM: http://bikeforkam.com/meet-other-hibm-patients/

My friends and I began Bike for Kam began in 2011. 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 gained 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.

www.bikeforkam.com

Living With HIBM

I 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 are 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.  The Darvishes 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 may 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.  It's hard seeing a friend struggle. In those moments to know intimately EXACTLY how, when and why they struggle. I guess I want others to see what I see. In no way are they perfect, but they're human.

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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

This Afternoon

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."

DIA-BILL-IC

"Just because he's a paraplegic doesn't mean his legs don't work" -Dale

"How am I suppose to be inspiring with legs?" -Bill

Up in the middle of the night watching King of the Hill.

Dirty Laundry

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There is an insecurity and vulnerability in publicly sharing one's most intimate thoughts about their condition or the ways in which they struggle.  I often feel strung up for all to see - airing out my "dirty laundry".  

It can be extremely taxing and many times I could think of things I would rather be doing with my time.  I feel like a broken record and because I talk of it so often I find myself trying to find balance between "Kam with HIBM" and "Kam".  At times the lines blur leaving me tired.

Growing up we think of all the things we want to be or do. Being a patient advocate and sharing an abstract concept of a slowly progressing condition is something that never comes to mind.  

There is a satisfying aspect of doing or experiencing something you would have never imagined or planned, but there is also a bittersweet taste. I never thought I would be drawing or telling stories about my life. Quite frankly, I never thought my life was interesting enough to share.  I felt like I was a very regular girl and shyed away from attention as much as possible.  In fact, most of the time I do whatever I can to deflect what I do and dodge attention.  Growing up I mostly wore plain colored clothes and preferred to blend into the crowd, rather than standing out.  

I remember the day I was diagnosed with my final and real diagnosis, HIBM. It was 2004. At that time all my doctors told me to retire to a chair and that my condition was far too rare for any researcher to want to touch it, let alone any chance that I would see treatment in my lifetime. 

That all changed when I moved to Los Angeles, California in 2007.  On a particular summer afternoon I came across an article starring a pair of brothers who had more than ten years ago founded an organization, ARM, dedicated to increasing HIBM awareness in the general and scientific community. These brothers had HIBM and to my luck were doctors and research scientists as well.  Immediately, I contacted one of the doctors and invited myself to meet him later that week.  

I remember the exact afternoon I met Dr. Daniel Darvish, an HIBM research scientist and an HIBM patient, and to my surprise he was already in a powered chair needing assistance to grab mere sheets of paper. I was still walking then.

I had read the potential prognosis of a wheelchair but reading it and seeing it were two very different things. He was compassionate and said, "You couldn't have found us at a better time...treatment will happen within your lifetime." and preceded to share the history of HIBM.  

From the beginning of their enormous endeavor and undertaking they had met hundreds of patients, a rarity for HIBM'ers when so many are lucky to meet just one patient. He had made it his life's work to bring attention to HIBM and then later realized the possibility that starting his own research lab could render faster results. He was the most determined person I had ever met and I could do nothing but appreciate such a determined spirit, especially when most deflect responsibility and potential.

As he spoke to me he spoke assuming HIBM would be something that I would want to hide.  He asked, "Kam, are you sure you want to be open about HIBM? It's very hard being public."  

Confusingly, I said, "What other choice is there, do nothing and watch my body deteriorate?" 

"Very good. Very good." He smiled.

I didn't think when I got involved, nor was it for my own personal immediate gain. I was merely resting on the idea that helping and pitching in seemed to be the right thing to do.

He explained to me the culture HIBM is most common in and within that culture most view it as a horrible and shameful condition. It's genetic, you see.  HIBM predominantly affects Jewish Persian but also affects a gamut of other ethnic representations. Jewish Persian families don't want a genetic mutation stain on their family and so most hide it.  Most do not want to speak of it.  

Up to that point the Darvish brothers, and a caucasian patient in the South, who was experimenting with her own personal treatment, were of the few that were truly public.

That very day marked the beginning of my involvement with ARM. I worked to spread and expand awareness within my immediate circle. Aware that I was a designer, Dr Darvish asked if I would like to design a little brochure. It's in my nature to think bigger, so this brochure quickly exploded as an entire branding campaign that I executed for them in 2008.

My idea was it should be patients sharing their stories but I found it difficult to find individuals who wanted to share so I could publish their story in ARM  marketing materials.  I found it completely understandable that some did not want to be public.  It is a very hard thing to do.  The physical weakness is open for all to see but the emotional "weakness" is something that is easier to hide.

During the years I was relentlessly public and while the Darvish brothers shared their science and professional selves, mine was more personal sharing.  I was no scientist nor doctor, but I was living with HIBM. That was all I could offer.  After years of working with them, I decided maybe sharing just a little more of myself is what was needed.  My friends and family knew the textbook form of HIBM but did they really know what it was like?  If even they didn't know, then how could strangers?

One of the inspirations for this decision of public blogging and art was that I hated that few truly knew about HIBM and the patients it impacts. HIBM is way more than those four letters. It is way more than the symptoms and prognosis.  

Through the years I had the opportunity to know the Darvish brothers and what they personally go through, and that knowing made me more committed because I could see how committed they were despite the difficulty.  

They aren't perfect, as all of us aren't, but they took on accountability and responsibility and were genuine in their vision and that is what I have stayed loyal to was their loyalty.  To know intimately how difficult it has been for them to be so public, facing public scrutiny, judgement, the center of rumors, politics, xenophobia and the prominence that their lack of status and wealth - despite having the brain power - causes a community to look down on them, was and is overwhelming to be in the middle of.

I felt like I experienced the real story and I hated that no one really knew them.  It is one thing to deal with a lifelong debilitating and relentlessly selfish disease, but it is another thing to put yourself in the middle of the arena for all to see or scrutinize.  I couldn't do anything but respect that.  

The Darvish brothers were not concerned about their image, status nor receiving personal scientific credit.  The focus was so strong that spending time to write out scientific publication submissions to heighten their name, which is usual and necessary in science, in their eyes, only wasted time that could be spent on pushing HIBM research forward.

I hated that know one really knew them as real people and I hated that people didn't know the stories and the plight of the patients I had begun to meet around the world.  That is when I began blogging and soon after began drawing about it. 

My friend asked me if I was sure I wanted to be so open.  My first and last name combination is the only name in cyber world so if you google my name everything about me pops up with the word "disabled" all over the place.  I did think about it.  

I wondered, "When I job search, will the company google my name and will they not be interested after they read all about me?"

If you are honest and genuine, I believe things will work out.   If a company didn't want me - not that I use that as a crutch for NOT getting a job - for that very reason then I knew they didn't deserve me because I am way more than a stick, leg braces and two wheels.  

It can be taxing to share and sometimes I wonder if I should have started this whole endeavor but the good thing about taking a leap is it leads to other unexpected paths.  So, just know there is science and advocacy being done on this very rare condition I have and it is being done in a few places around the world and one of them is ARM (Advancement of Research for Myopathies).  

When someone tells you that know one will care about you because you are too rare, keep searching until you find someone that tells you they do care.

Brace Yourself

 It has been awhile since I've posted. In the meantime I have finished  a few drawings.  

I remember the day I picked up leg braces that were specifically molded for my legs. It was the summer of 2003, a year or so after I had started using a cane.  For my condition, a patient experiences what is called 'foot drop' early on.   It's the dropping of the forefoot due to weakness, or other reasons. It was this initial symptom back in 2000 that triggered the alarm that something wasn't quite right.  

I look like I'm dragging my foot when I walk and through the years it has gotten worse.  Back in 2003 I knew I couldn't safely walk around anymore without assistance.  I wasn't happy about this day. After all, leg braces are so not cool.

Leg braces stick out in a crowd and people stare, the very thing I hate.  I don't like to stick out or be known.  I'm a behind the scenes person. I barely liked to be noticed and now suddenly my list of assistive devices were growing.  But I was going to college, living alone and in a grueling, both physically and mentally, college program so I couldn't have any pride when it came to getting things done. By any means necessary.  

This summer day I drove to my orthotics doctor and they showed me my brand new pair of legs.  A milky white pair of plastic braces that run up to just below the knee and to the bottom of my feet. They were ugly.  I hated them.  I felt embarrassed for having to wear them.  

When I put them on my walking became drastically different. I was walking like a bionic woman.  My strides were quick. I felt myself almost tumbling forward because it was to quick.  I'm used to slow.  Because they are a rigid plastic frame wrapped around my legs and feet there was absolutely zero flexibility at the ankles, which was difficult to get used to. I felt like a robot with these foreign and ugly apparatuses tying me down. I was like a dog whose head hangs low when their master forces them to wear embarrassing head cones.  This was just another milestone telling me that this condition was in fact real and the prognosis correct.

"It really does continue to progress." I thought.

I strided out of the office and though it was sort of a sad milestone, the gained abilities was a positive.  I could walk easier, faster and I really did feel like a bionic woman.  I could suddenly walk a little easier, something that had become increasingly difficult years prior.  

There were all sorts of things I needed to get used to. Imagine wearing a cast on your legs every day of your life. How comfortable or sexy can you feel in those?  They were heavy, clunky, sweaty and restrictive. They forced my foot to a constant right angle position, so you can imagine how uncomfortable they make my legs, hips and knees feel. My legs lived in these and they were always uncomfortable.  Driving was different, lowering myself to the ground, crossing my legs, sitting styles, ascending and descending curbs, walking up ramps, etc.  It was all different and I had to learn all over again.    

Sometimes, I don't recognize my legs. The dented shins from years of wearing straps across them. My limp, floppy ankles. My lifeless feet that just hang there with toes that barely wiggle. They tell stories filled with character. They've seen some shit.  They have experienced time at a much quicker pace then they should have.  

Sexy really is all in your mind but the trick is getting past yourself.  It takes some guidance to teach others, and yourself, how to look at braces, wheelchairs and canes differently.  It takes a bit of time.  

How do you unteach yourself the definition of what's cool, normal or acceptable?  Even people who claim to be "different", against popular crowds mixed with efforts to be outrageous and unusual in their appearance still subscribe to a particular group and uncomfortable being with those who are not the same.

It takes a long time and everyone has their own pace, but what's sexy has nothing to do with your appearance, yet it's the confidence and comfort within yourself.

Years ago I did my best to hide my braces. I would never take them off in front of others, in fact most people didn't even know I wore braces.  I always wore long pants or long dresses to hide them.  Today, I don't care as much.  I whip them off in public without a problem. I have not worn a short dress since the day I got my first pair of braces, but perhaps this summer is the time to try that. Another milestone of not caring if people think I'm different. 

Nowadays, because the disease has obviously progressed over the years, my legs definitely don't feel like bionic woman anymore. In fact, I haven't for years as my legs have grown slower and slower. But I still vividly remember that summer day -- it was like strapping on my superhero gear that gave me super powers. Super powers that most people do without a thought.  

All of us have unique superpowers. It's finding them that takes so long. I have got really good at learning to adapt, but still have a long way to go. My condition continues to force me to adapt, whether I want to or not, and as seamless as it may look, it's a constant struggle and every minute I am forced every minute to put myself out there.  

Adaptation is an invaluable tool to have in life.  It's all about adapting.  If you don't adapt then life leaves you behind.  

My Illustrations Now on Facebook

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I started a fan page for my illustrations. For 2012 I would like to grow the number of drawings and start getting them out there.  Help me by passing my link around and give it a "like"yourself!  

Also, do you like my new shirt? Found it a thrift store. It spoke to me. When I grow up I hope to be shouting like an old man from my chair.