"For last year's words belong to last year's language and next year's words await another voice." - T.S. Eliot
Happy New Year!!
"For last year's words belong to last year's language and next year's words await another voice." - T.S. Eliot
Happy New Year!!
Currently, I am trekking about Australia but wanted to pop by to say Merry Christmas and a Happy New Year!! Christmas has already come and gone for me on this side of the world and isn't it usually a ritual for us to look back at what we have done with our year?? Have we done anything good and was any of it for something other than ourselves?
I know I have been awful in updating my blog but I will try to be more regular in 2013. There is always so much to share and I feel I didn't share as much this year.
For now I wish everyone a safety as this year wraps up as well as life, love and happiness. I wish you will always push yourself outside the box, even when you would rather stay inward. There is so much to see and so much life to live and I am always amazed by how small we really are. I'm amazed by how many lives intersects our own on a daily basis.
The feeling of "living" always makes this experience (HIBM) a little bit less painful and daunting for me and really, the only thing that keeps me going. I have taken alot of footage and pictures so I hope to put together a holiday montage video later so I can share what I have done in Oz Land. Merry Christmas! xo
Keep following my art at: Facebook.com/kamredlawsk
The time to live life is always now.
Waiting for my Access para-transit ride in the rain. Per usual they are 45 minutes late. When they arrived there were already two passengers in the van and we still have to pick up another passenger. All three get dropped off before me, which means I'm looking at 3 hour ride just to reach a destination that is only 15-20 minutes away.
God, how I miss my independence and driving. I miss it with every single breath.
I miss my legs so much. I've been doing good lately. Really good, actually. But the loss always rears its ugly head during random moments. I miss the person I was when I had them but I don't regret the person I've become because of it. Despite it. But I dislike the feeling of dying limbs, an experience I never thought I would have to know.
Some days the stares feel like daggers and I don't feel like being polite or focusing on making them feel at ease because all I want is to be left alone. To blend in. To not stick out. To be invisible. To not be asked, "What happened to you?" from strangers' stares and inquiry after a two second encounter. I don't want to be seen. I don't want people to watch me deteriorate.
One of the most difficult things about being disabled, especially when it's progressive, is being forced to rely on others. I hate that part so much. I'm waiting for my helper who is 3 hours late. I need to run errands for my first art show and it takes alot of back and forth to pick up materials.
With every daily minute step there is an immense amount of planning involved. But all I really want to do is just pick up and go and not be tied to anyone.
There's alot of waiting and asking.
I don't mind if people want to help me but it's hard waiting on others or hoping that they will be reliable. Or if it's a particularly busy week where I need o do multiple things, I can't. I'm forced to wait for my husband or employ help. I'm constantly waiting and it's those moments that remind me that I'm disabled. I'm progressing. And increasingly at the mercy of others.
It's been a month and a half since I last posted and I know, I keep saying the same thing.
"I'm sorry I haven't been on here much."
I haven't REALLY blogged in quite some time and yet there is always so much to share.
This summer has been busy and full of changes including new challenges. But at the very least I am still doing some art when I can. Not as often as I would like, but some. So if you don't see me on my blog check my Facebook art page to see if I have posted anything new.
Lately, with the limited time I have, I would rather use that time do an illustration than blog/write. I feel like art is a more personal way for me to communicate. Expressing thoughts through a drawing or an image is a source of communication that cannot be duplicated. I like being able to speak through art. Less telling and more sharing.
Oddly, I feel more anonymous when I draw. I don't feel like everyone sees everything at once. A drawing is open for interpretation and I have found, from random comments or messages left by strangers, that they interpret the art and see it through their own eyes and their own life situation, which is interesting and unplanned. I have found it to be an ideal way to share because it's not just about me. Many of us are REALLY is in the same pool in one way or another.
Like my Oneiros and I illustration. A passerby emailed me and specifically pointed this one out as something they identified with. Oneiros (the monster lurking in the trees) is my HIBM monster that follows me. It's a part of me. A part I don't want nor invited nor created but a part of me, nonetheless.
It's a part that I have no control over. A part that is both good and bad which creates a grey shaded area of emotions. You can't be completely mad over something that has brought about such perspective but perspective is sometimes painful. There is no way around it. It's a process of working with your little monster. And so I've personified him in my head, an entity that also has real emotions, hurt and pain. So here we are. We have a relationship.
"He" doesn't know what he does, he just knows he needs to be there. That is what he was designed for. He grieves and he ponders over my constant desire to escape him.
He is like a child. Sometimes he does wonderful things for me and other times I want to be left alone. I'm waiting for him to leave but he is a constant reminder of my past, present and future.
Sometimes he makes me cry, while simultaneously making me grow, whether I want it or not. I have a whole series of drawings to communicate this relationship with Oneiros. I need to post them.
I really appreciated this passerby's comment because I never anticipated that it could touch someone else in a similar, yet unique and altogether different form. This passerby said they were intrigued with the "compassion in Oneiros' face, his body language is timid, simple and almost without agenda." The part of this person, that they don't want, is the mental illness they experience. It is what lurks, follows and makes them feel less than in a society of fabricated sameness.
They shared that they have always viewed this part of them as evil, intentional and overpowering, making them feel like an odd entity in society. Only a couple people know of this secret pain in their life.
They shared some other really personal thoughts but it's not my place to share those here but the drawing made them look at their mental illness in a different light.
"What if 'it' is not evil; with no personal agenda to destroy me; maybe I could make peace with it. After all, 'he' is part of who I am," they said.
I emailed with this person a few times and I said I was sorry that they felt this way but that everyone has a story and no one is without "illness" so, please, don't be ashamed.
Our "illnesses", disabilities or struggles manifest in different forms; physical, mental, arrogance, selfishness, memories that control us making us puppets of the past. The list goes on.
Things that we caused, things we had no control over - they affect us and create an inner dialogue that can make us feel alone. If we spent more time accepting, or better yet, learning about people's darkest plights we would build understanding.
Perhaps we wouldn't have to feel so lonely, secretive, ashamed and at odds with ourself because everyone struggles. The moment you are able to understand this, is the moment compassion is born into your heart, for yourself and for others. And, not the synthetic kind. The kind that can only be taught through experience.
Most of us avoid ourselves and some have no choice but to face it. When you're faced with your own self it is a constant relationship and journey of learning how to incorporate it without letting it rule your life. It's not a puzzle to be completed overnight, nor is there an end. But being on the journey of resolution is better than nothing, I guess.
I've received several emails like hers and I'm glad that others can have their own personal interpretation and see themselves in my drawings. I think this is the one message I wanted to share when I started drawing. It's not just about my inanimate legs and body but about the struggles that we all have but no one wants to talk about.
Here are a couple of other recent drawings.
The Gift (Gift Giver's Unknown)
I'm adopted. My condition is genetic. I know nothing about my biological parents; the bodies who passed this condition to me.
They are/were carriers but did not physically express HIBM symptoms, which means they are perfectly healthy and free of the remains that HIBM leaves behind.
This physical expression was passed onto me and I am their HIBM product.
Because of HIBM I have become more and more curious about my genetic and medical history as well as the faces I've never seen, yet each morning reflect into my bathroom mirror.
I've been doing more art about this part of my past. A past as an orphan and recurring childhood dreams that I used to have.
I think this is also another part of my life that is important to share, not because I want to be labeled as an adoptee, orphan or a disabled orphan but because I know this is something that affects many people (adoptees). Many carry this sense of abandonment much heavier than others. I am fortunate to have handled it with such confidence and understanding and to have landed in a decent space. I'm grateful that I was adopted, given a home and opportunities but not everyone was/is that lucky or able to deal with the emotions from it. They carry it with them their entire life.
It's 4am and I can't sleep. Insomnia disappeared for awhile but the last few months it's been climbing back.
I'm extremely uncomfortable at night. My upper limbs feel heavy. My shoulders feel like they just hang — like heavy weights without life. It feels like my arms, hands and fingers have been getting weaker. My joint pain has increased. This is not an HIBM symptom. Some patient's experience it, some don't. I do. Alot. I'm in constant pain in that area. I try not to think about it but it's hard when your body is in constant reminder mode.
I guess we take for granted the seamless effort our body goes through. A "normal" body is constantly working in unified collaboration for one single move. To them it's effortless.
So I'm making use of the middle of the night, or rather morning, by doodling out future sketches while watching Ratatouille.
My little Pippi is laying at my feet, looking up at me and wondering when I'm going to sleep so she can sleep.
"I paint my own reality. The only thing I know is that I paint because I need to, and I paint whatever passes through my head without any other consideration."
Today is Frida Kahlo's birthday. Kahlo was an early 20th century Mexican “Surrealist” painter. She was a child among the Mexican Revolution and best known for her autobiographical self-portraits.
After her trolley accident Kahlo neglected her dream of becoming a doctor and turned to painting during her immobilization periods. A steel pole went through her hip and she was left with multiple broken bones, including her pelvis, ribs, spinal column, collarbone, multiple fractures in her leg, a crushed, dislocated foot and a dislocated shoulder. During the accident an iron handrail pierced her abdomen and uterus leaving her unable to have children; a conspicuous subject matter that commonly shows up in her work.
Her parents had a special easel built so she could paint from bed. I've often wondered what my art station set-up would like if this happens to me in the future. Although, her situation didn’t cause weakness in her arms and hands like mine does.
I try not to think about it (future) but from time to time it needles its way in.
Kahlo’s trolley accident when she was 18 was not her first brush with immobility. At age 6 she contracted polio. She was bedridden for nearly nine months and eventually recovered with only a limp to remind her of her childhood struggle. To aid her recovery her father encouraged her to swim, play soccer and even wrestle — highly unusual for a girl at the time.
Kahlo painted from real experiences and much of her work are suggestions of the chronic pain since her accident. In her paintings she depicted her physical ailments, miscarriages, and identity struggles.
Despite her pain-filled paintings she was feisty, direct and tenacious with a zest for life. She was active and loud in the political, intellectual, literary and artistic movement. But by 1950 her health issues were all-consuming.
Kahlo was not your typical woman, especially for her time. She is often regarded by feminists as an inspiration and fellow feminist, which is interesting since Frida didn't regard herself as one. I think Frida would hate that feminists use her and claim her as their own since she was adamant in belonging to no label. She was beyond labels or trend.
Kahlo also rejected being labeled a surrealist painter.
“They thought I was a Surrealist, but I wasn’t. I never painted dreams. I painted my own reality.”
Even though Kahlo was an artist, political activist and intellectual she loathed and had no room for elitism and high society. She remained true to her roots and skeptical of those who reveled in artistic and intellectual elitism for the sake of being better than others.
“I would rather sit on the floor in the market of Toluca and sell tortillas, than have anything to do with those ‘artistic’ bitches of Paris.”
To categorize Kahlo into a group almost devalues who she was. She merely painted what she knew and experienced. And what she knew was herself. She valued her life and took her work seriously even when museums didn't. She put herself on canvas.
It’s strange because I've held this same philosophy throughout my life. As I’m writing this I realize I hold many similarities. I don’t like to be categorized. While I’m an adoptee, former orphan, artist, disabled, Korean, American etc., I’m often weary of any such label since I’m many things and a sum of many experiences. To me I'm just Kam.
Kahlo's self-confidence, in spite of her ailments, led her to do and be who she wanted. She was independent and chose not to fall into the trappings of tradition. She regarded herself a sexually liberated woman and openly bi-sexual who occasionally dressed in men's clothing. Despite her physical frailty, Kahlo had many love affairs and was no friend to monogamy.
In 1953 Kahlo received her first solo exhibition in Mexico. Prior she had exhibited in United States and Europe. At the time she was bedridden but that didn’t stop her from missing her own opening night. Arriving by ambulance, Kahlo interacted with her art show attendees from her four-poster bed set up in the middle of the gallery.
A few months later her right leg was amputated to stop the spread of gangrene. She returned to the hospital several times afterwards but stayed politically and artistically active up until her death at age 47 in the “Blue House” she was born in. Officially it was reported her death was due to pulmonary embolism but many suspected suicide, including her nurse who counted her painkillers. Kahlo had been suicidal throughout her life.
In her last diary post she wrote, "I hope the exit is joyful — and I hope never to return"
One would think that a statement like that derives from a person who didn't truly enjoy life but I think she was just being honest. I hate when society romanticizes artists as "mad", "tragic" and "tortured" because aren't we all? The only difference is artists have the ability to leave a visual trail. I myself hate being described as a sad tragic artist. It's insulting. Her pain was real and though she did so much with her life, I think she understood and accepted her own mortality and place in life.
We are important, but not at the same time. I think once we are able to accept that and the reality of mortality, we can start to grow and not take ourselves so seriously. We can live beyond the confines of tradition and rules set for us.
We often think people who express sadness or real moments of pain must always be that way but you can simultaneously represent both sadness and employ a relentless pursuit of life. I can express how my condition feels and still live my life to the fullest with joy and passion.
What is real is real. What is pain is pain. Multiple emotions can exist at the same time.
I don't post art so people can feel bad or feel sorry for me. I do it because I know alot of people are going through the same thing, even if it is in a different form. In the end we are all seeking connection and understanding.
Frida was recently exhibited at LACMA and I of course wanted to see her work in person.
Like most artists, she was not famed until years after her death.
I had always been a big fan of Frida Khalo long before my condition even started. I liked that she represented herself as almost ugly and painted her own past, present and future.
In high school I would sit in the library and read about her during lunch and appreciated the honesty depicted through her images.
Now, that I have a progressive condition, I still like her but look at her work much differently. When I started illustrating about my condition a couple years ago, I hadn't even thought of Kahlo. But she's recently been on my mind.
Kahlo had many fans visiting her work at the LACMA exhibit. I had to traverse through the crowd of spectators who repeatedly ran into me right after artfully theorizing and dissecting her paintings on the wall.
"Oh, I didn't see you," they would say annoyingly as they ignorantly regarded me as someone in their way. It was ironic since they were just intellectually salivating over a disabled artist's collection. I think many people like art for the appearances of liking art but completely miss the message. This both applies to spectators and fine artists.
I sat there quietly rolling through the artist's emotions and it felt weird to add "meaning" to it. It felt weird to look upon another's emotions and pain; feelings that you are well aware of because of your own intimate experience. Her work was social and political as well her own personal agony.
"Disability" is a person and not just a condition or disease. Understand the person behind it and only then can you understand the disability.
"I paint self-portraits because I am so often alone, because I am the person I know best." -Frida
Here are a couple new illustrations below. I suppose art is the healthiest way I can distract myself. I'm very lucky to be able to use drawing as a tool to express myself and the experience. I seem to use it to make sense of things to myself first because I understand things better visually. And second, to make sure I am clearly communicating it to others.
Sometimes I think the art circle is meant to be above someone, a means to hide cryptic deep messages into an image that only an intellectual, an artist or the educated can get. But I think art should be the opposite. It's not meant to be above but with. Art is meant to communicate and make the viewer feel like they are a part of something.
What good does it do if no one can understand what you are trying to say?
When something challenges you like going through cancer, a death, a horrible disease — if you can handle it with dignity, humor, expression and growth, no matter what the outcome at least you proceeded gracefully and learned.
I guess drawing is how I can make sense of it all. Thanks for following my work. I wish I could complete five new drawings a day. I have so many I need to finish. Time to sleep.
This is "Hare Guitar". It is my first print for sale.
Three of my friends did a 'Bike for Kam' inspired art print to help raise extra funds for Bike for Kam project.
When I woke up one morning I had this character in my mind. I must have had a dream about her. She had long flowing hair that represented no beginning nor end. Her imagination told her she was playing a guitar telling vagabond tales of freedom. She told her friends' vagabond freedom tales. While she sat on the side of the gravel road with her leg braces on she didn't realize she was merely playing her hair.
A moment is a moment and the reality doesn't have to occupy center stage in that most private space.
I did this one to accompany my friend's drawing donations. Check their interpretations of "adventure". They did some awesome work! If you would like to purchase my very first art print or one of my friend's prints, visit: http://bikeforkam.com/2012/05/bike-for-kam-inspired-art-prints-for-sale/
With the mere use of social media, facebook and my friends and community, we managed to raise more than $32,000 for HIBM medical research. That's pretty great! Very thankful to everyone who was involved!
Below is the final 2012 compilation video I put together.
After they crossed the finish line they gave me their mobile snapshots and video clips they managed to capture along the way. I edited it together to share their experience. This has become a Bike for Kam tradition. I like to do them, not only for our supporters so they can experience what the guys did on the road, but also for the guys. Whenever they feel they are stuck in cubicles, longing for freedom and adventure, they can watch their videos and revisit the adventures they lived.
Read Bike for Kam's final words and testimonies here: FINAL WORDS
Like I said, I've been terrible at updating my blog so I'm not sure which one of my new drawings hasn't been uploaded here. You can always check or subscribe to my Facebook Illustration Page to receive my latest drawings. I usually upload them there. But here are a couple.
That Muybridge Stride.
Inspired by Eadweard Muybridge and his photographic studies of motion. Big fan of his work. A 19th century British photographer, Muybridge accidentally created the world's first motion picture by setting up multiple cameras to study movement in animals and people. He captured what the human eye could not distinguish as separate movement, creating the first stop motion and conveying the beauty of movement itself. As I slowly have lost movement over the years, I often mentally break down people's movements and strides just so I can recall what it used to feel like.
This will be a quick post. I have so many of these stories but this one just happened so I should share.
I was walking my dog when suddenly this creepy man comes up to me trying to strike up a conversation. I could tell I should be skeptical of him so I did my best to not acknowledge his attempts and pretend like I didn't hear him.
But he kept following me, asking me questions like, "What are you doing today? Do you usually walk this path daily? Are you going home?"
I felt cornered and was doing my best to assess my surroundings and roll around him. My very friendly Pippi - whom I usually adore her loving, trusting heart - wasn't helping the situation at all as she tried to give her usual unconditional love to this stranger. I managed to wheel around him and ignore his comments as he kept lingering behind me. I saw a woman walking her dog so I rolled to her and started to play with her dog. She was a young, shy asian girl who seemed confused by me (because I was in a wheelchair and approaching her) but I stayed with her until the guy disappeared.
I didn't take the normal route home just to make sure he wasn't following me. As I crossed the street that was armed with a crosswalk and stop sign, a car didn't feel like stopping while I was crossing.
He suddenly pressed his brakes yelling, "...well, you shouldn't be in a wheelchair!".
In which I responded with, "Well, you shouldn't be an asshole." and kept rolling.
I felt perfectly safe to be a sass in that situation because there was an army of people around me.
There are so many stories like that guy telling me that I shouldn't be in a chair. Don't be a jerk.
Being in a chair, or just disabled, creates a lot of vulnerability. It's a little moreso if you're a female. If I happen to be alone and I feel awkward about my environment, I'm usually hyper aware. If I'm alone I'm careful and think ahead of how I would deal with a situation if it became dangerous.
Fear won't keep me from doing things because it might be dangerous. I don't not go out because of fear because I don't want to be a crazy person about it, but I do like to be aware and think ahead. Well, I don't like to be, I just don't have the luxury to be any other way.
What can you say to a group of guys who are willing to do so much for yours and others' condition?
It was a long and hard ride, both physically and emotionally. To read the day-by-day of the 7 days on the road, visit: www.bikeforkam.com
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.
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
"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 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.
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.
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 got lost in the shuffle. I thought I would post it anyways.
In April I met my friend, Stephen, in Venice to bounce some ideas around for the 2012 promotional 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 Saturday morning filming, we all stumbled up to Big Bear in our own time. Stephen invited his friend, Scott, an old art school classmate and colleague, to aid in some of the 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 Los Angeles. Scott was equally as cool as Stephen and it's nice absorbing all these new friends through Bike for Kam.
Since I mostly hang out with guys it means I have to be cool with being ready at a moment's notice. I wasn't quite sure when we were driving up. 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. Jason didn't come. 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.
Stephen and Scott were really happy and literally hugging trees.
Again, you don't see trees in LA. Palm trees don't count. Kidding. Sort of. They were really into their work and genuinely excited about filming this video. I was really appreciative. Not just for their passion and excitement towards their craft but because of their dependability. Knowing this video is a big project and that Bike for Kam is such an important project to me that requires serious dedication, it makes me feel encouraged when others treat it with the same seriousness. I was fulfilled knowing they had the same work ethic that I do.
Dependability is important. It says alot to someone. It's cool to be a free spirit, but when it involves a friend, showing up is important.
It was an important day to me. Our promotional videos have become our kick-off, a B4K mascot, a visual that displays the seriousness and tone of the project, and I was serious about rallying the riders in and making sure they showed up to support the friends, Stephen and Scott, who were supporting me in probono fashion.