Kauai + Huffington Post

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It's been a hectic few weeks. I meant to post this here when I wrote it on Facebook on September 2nd but didn't find the chance to. We were on vacation in Kauai for a week and it was wonderful. I plan to do a video of our trip and post some pictures here but if you want to see what I was up to I was more active on my Instagram @kamredlawsk and have a few pictures there.

While I was gone Huffington Post and Healthline released a story about me. 

Huffington Post / Artist Creates Eye-Opening Illustrations About Her Rare Disease

"My art was originally meant to spread awareness for GNEM but I’ve realized the viewer may see his or her own life in them, which is really nice,” she said. “I’ve had many strangers from around the world confess their own struggles and share how one of my drawings helped them to either see it differently or feel heard.”

Healthline / This Artist Is Facing Total Paralysis in the Future and It Keeps Her Going

"And that’s the powerful theme behind Redlawsk’s art. Through her personal experience, she captures the essence of being human. She can draw a monster on her ankle and refer to her leg braces, but it’s the movement toward light, the kicking off of a struggle that trips us up, that we can all connect to."
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 I'm going to cheat and copy/paste what I wrote on my art page while in Kauai. I think I wrote this after two days we were there:

"Besides our typical exploratory local road trips we haven't taken a long distance trip in awhile. Due to life and lack of vacation time our last big trip was to Australia 5 years ago. We visit Michigan annually and I traveled to Washington DC last year as an advocate but other than that I don't get to fly as much as I'd like to. I had limitations during my Australia trip but could handle travel just fine. But I can sense this time around it's much more difficult for me. I can still do it but for the past few years chronic pain and chronic fatigue has crept in addition to the chronic weakness from GNE, so I'm required to deal out that much more will in order to travel at the same pace.
I've been in a lot of pain and much weaker this trip so things are much harder. For example, eating on the plane by myself was almost unmanageable and I required some assistance. My shoulders and neck are so weakened that eating has now become a challenge. I can still eat on my own but I need some sort of surface beneath me like a table so I can prop my arms up. If I don't have this set-up then I have to engage in some acrobatic act just to take a drink or eat a sandwich. 
When my living quarters like the bathroom bedroom, bed, or shower change this becomes a major roadblock. When something minor changes my routine is thrown off and we are forced to creatively problem solve every minor move we make, which can be both frustrating and satisfying. Figuring out how to get in the bathtub garners a round of applause, it's the little things. If people saw some of the situations we get into they would either laugh or be horrified.
When I went in to a wheelchair in 2011 I started documenting trips in my chair as a way to catalogue my travels but also because I wanted people to see despite the chair and limitations they could still do things even if it wasn't in the way they imagined.
It breaks my heart to know people don't live life because of their limitations, even when when they're self imposed. Those who don't want to because they don't want to face the stigma, ridicule, stares or insensitivity or even because everything is difficult can be reasons to further limit ourselves.
I started photographing my back to the camera in landscape shots because I wanted the viewer to pay attention to the beautiful scenery and not me, but also as a message of looking forward. This pose has kind of become my thing.
Sure, today I have more weakness, chronic pain and fatigue but I just refuse to let GNEM (aka HIBM) take everything from me without some kind of a fight. GNE has already taken so much. If I can fight through it to see beautiful scenes like this then I will continue to as long as I can. Sometimes, I mentally calculate how many years I have left for traveling which sparks a certain urgency. I don't travel anywhere near as much as I'd like due to lack of work vacation time but I hate knowing that one day all this may not be possible. When I think like this I think of patients who are far more progressed and still travel the world like my friend Yuriko who is constantly traveling the world to further her advocacy. It makes me believe I too will be able to do the same.
I'm lucky Jason follows me as I seek out my dreams and silly adventure ideas, all the traveling I've done would otherwise be near impossible. In a week and a half we will have been married for 8 years, I can't believe he's put up with me that long 😉.
Today, we are going on an ATv tour through the rainforest so let's see how my body holds up 🙃. You can follow my Kauai travels on Instagram @kamredlawsk"

Patients

I had hoped to finish a drawing I'm currently working on before I take off for vacation tomorrow morning. I didn't finish it :/ but will when I return.

For now here's a post from last week.

Last week I attended NDF's patient symposium which housed scientists and 40 patients from around the world, including Argentina, Korea (I met my first Korean patient!), Amsterdam, India, Japan, Italy, UK, Canada, Saudi Arabia, Iran, Israel, all across the US and beyond. GNEM (aka HIBM) is so rare and yet over the past few years crops of patients have been popping up all over the world - forming their own patient groups. It is indeed a global disease.

I have been looking to meet a Korean GNEM patient for some time. “Surely I can’t be the only Korean”, I thought. When I returned to Korea in 2010 I was scheduled to meet a GNEM patient but I was told due to fear she backed out. Since this condition is genetic and there are many families where all 2, 3, 4, 5 siblings are affected, there is a slim chance I could have a relative with GNEM. It saddened me to know they may be suffering alone, especially in a country whose only now attempting to deal with the stigmas of disability.

I met this Korean patient yesterday along with Dr. Jin-Hong Shin, a neuromuscular doctor from Pusan National University Yangsan Hospital. He and I had a great connection. He told me there are 50 Korean patients and they just began their own patient group. After learning about my life (and skydiving) he asked me to come visit Korea and speak with this new group. He wants me to share how fundraising works but moreso how to LIVE despite having GNEM. He does his best to push them to boldness but so many disabled Koreans are scared of being seen due to stigma and often live solitude lives.

To me this story was déjà vu, because in 2008 a newly formed Japanese group of GNE patients (PADM) asked me to visit Japan to discuss nonprofits and fundraising.

I told Dr. Shin I would be happy to meet them. America is my country but Korea will always be my birth country and if there is anything I can do to encourage them to live life to the fullest despite this ugly condition, then I’m elated to do so. I’m very proud of my Korean/Japanese heritage and I wish for them to succeed.

The GNEM world looks very different than when I began advocacy in 2007. I stumbled upon a scene in its infancy and though I met a few patients in 2007, something I was told would never happen, it often felt lonely. There weren’t as many GNEM representatives in the US at the time (I only knew of ARM) and handful of scientists/clinicians working on GNEM. I always believed global patient advocacy was the only way to treatment/cure, but in the beginning it was difficult to get patients to share their story. But today the patient advocacy landscape looks so much different, louder and impressive and I’m so proud of all of them. Patient advocacy while navigating the channels of constant loss and struggle is very taxing and draining. It’s not easy and it’s difficult being an “inspiration”. While I may have taken a break from the nonprofit organization scene ( I  used to work with ARM for 7-8 years) and more of an independent advocate, I still do my own personal fundraisers, writing, art and sharing my story and hope all our efforts will eventually see the light.

No matter the language barriers, organization relations and the politics of treatment development, at the core are the patients who only care about stopping this progression. The common thread between us is this experience, an experience that has profoundly changed our present and future. Thanks to NDF for organizing the collection of patients and science.

My fellow GNEM patient and President of Japanese Patient group PADM, Yuriko, brought me a present from Japan. To my surprise my GNEM friend Mayuli just published her first children's book, "The Secret of Seven Doors". I believe this is the first GNE children's book...

Mayuli started out as an interior designer and then became a jewelry designer. In fact she made my wedding band. Her and her husband founded Geodesique jewelry in Paris and Kyoto. I traveled to Japan in 2008 to meet PADM and do a presentation on fundraising. I also was invited to speak at Kyoto Design college to give a talk on social design. Mayuli was one of the GNE patients and newly diagnosed. We became fast friends. My other GNEM Japanese patient friend Yoshio translated it so the book is both in Japanese and English. Her book aims to educate about hereditary disease.

"Diversity is created when the door changes and this is really important to our survival."

We really are just a bunch of mutated genes floating around, we aren't much different from each other.

There is a wonderful write up in the back explaining how genetic diseases work as well as homage to Japanese patient group, GNEM and their country's GNEM research scientist, Dr Nishino. Really proud of Mayuli...disability or disease does not mean defective. Many are accomplishing big things.

"According to geneticists, hereditary diseases are already incorporated in the human DNA. Some diseases might be incorporated to protect the continuity of human life. Errors in the DNA are necessary for diversity. If this is the case, genetic errors cannot be eradicated even with progress in medical science. Current medical science theorises that each human is born with seven genetic errors, on average. They range from mild to serious. We think that we don't have to know about hereditary diseases. Sometimes we only care if we, or someone we know, is affected."

I Learned...

"It has been one of the greatest and most difficult years of my life. I learned everything is temporary. Moments. Feelings. People. Flowers. I learned love is about giving- everything- and letting it hurt. I learned vulnerability is always the right choice because it is easy to be cold in a world that makes it so very difficult to remain soft. I learned all things come in twos: life and death, pain and joy, sugar and salt, me and you. It is the balance of the universe.
It has been the year of hurting so bad but living so good, making friends out of strangers, making strangers out of friends. We must learn to focus on warm energy, always. Soak our limbs in it and become better lovers to the world, for if we can't learn to be kinder to each other how will we ever learn to be kinder to the most desperate parts of ourselves."
— Rupi Kaur

This poem is for the many GNE Myopathy (aka HIBM) patients who had a bad week last week due to the disappointing update on treatment. I didn't make a formal public announcement but last October I joined Ultragenyx's Phase III human study on Sialic Acid extended release (Ace-ER). This substrate's extended release Ace-ER was in part licensed by ARM funded HIBM Research Group Lab (I used to be an ARM representative for 7-8 years but have since taken a break and more of an independent advocate) as well as Nobelpharma and AAIPharma. Ultragenyx, like many of us, had hoped this Sialic trial would demonstrate positive results but alas could not meet primary and secondary endpoints.

I didn't formerly announce my enrollment in the trial because I wanted to see how the trial progressed before raising the hopes of the many who have supported my numerous fundraising efforts over the past 11 years...BUT last week Ultragenyx announced their trial failed and they would abandon all development of the drug and move on from GNE Myopathy (HIBM).

*It's important to note that just because the trial failed does not mean sialic substrate doesn't work but alas we don't have the data to know either way.

For the past few years there have been TWO substrate trials happening at the same time. Ultragenyx's Sialic was one, NIH's ManNAc was the other. NIH began working on ManNAc in 2003 after they hosted an HIBM workshop in collaboration with Dr. Daniel Darvish, founder of HIBM Research Group, and in 2005 NIH proved ManNAc to be beneficial in HIBM mouse model. NIH finally began a ManNac trial in 2012. Ultragenyx began their sialic trial in 2011. 

I did my best to keep walking, waiting for either trial to begin but in 2011 I went into a full-time wheelchair...RIGHT before Ultragenyx announced the start of Phase I trial. The Ultragenyx sialic trial began in 2011 and neither Sialic nor ManNac trials were open to non-walking patients. The logistical reasons in terms of data collection for this make sense but it was still a bummer, after all I had made fundraising and advocating a near (free) full-time job for 5 years. But I was still happy some form of human trials were beginning for our condition and watched the progress with caution.

Last year I attended the RAREArtist ceremony as an awardee on DC's Capitol Hill. Ultragenyx's CEO, Emil Kakkis was there and he and I got to talking about the sialic trial. I told him I was an HIBM patient (aka GNE Myopathy) and asked why this trial wasn't open to wheelchair patients. I understand a lot about the trial process and that non-walking patients can't complete a lot of the physical tests required for pertinent data collection. But as a wheelchair-bound patient I explained to him how much more devastating it is to lose your upper extremities than lower extremities. He shared my sentiment and understood, explaining the team doesn't always think of that, "they're always thinking about saving the legs", he said. But he felt the same and assured me that admitting wheelchair patients would be topic they would discuss.

Now, like I said I get the clinical trial data collection process and my inability to even chart in many of the strength tests necessary to collect data (to decipher if the therapy is working or not) but I explained in 5-10 years (the realistic projection for a substrate to come to market) the number of wheelchair customers will be even higher than today. We are a big market for whatever future therapy is approved. Now I'm not even sure if this discussion influenced open enrollment of wheelchair bound patients but as soon as Ultragenyx announced opening the trial to non -ambulatory patients later that year, I joined.

So why do GNE patients' muscle degrade? In short it's thought the primary reason is we don't produce sialic acid. 

What is sialic? The following is quoted from NIH: "Sialic acid is a negatively charged sugar localized at the end of glycoconjugate chains on glycoproteins and glycolipids. These chains are present on the cell surface and are crucial for many biological processes, including cell adhesion and signal transduction. Sialic acid synthesis is tightly regulated; defects in this pathway cause a variety of disorders, including hereditary inclusion body myopathy (HIBM), sialuria, infantile sialic acid storage disease (ISSD), and Salla disease.

HIBM is caused by mutations in the gene encoding the key enzyme in sialic acid synthesis, UDP-GlcNAc 2-epimerase/ManNAc kinase, which in turn leads to sialic acid deficiency. Without adequate supplies of sialic acid, progressive muscle degeneration (or myopathy) sets in."

So what's left? What's the future? Well, NIH's ManNAc trial is still happening and had Osiris results for their Phase II trial, and a couple different organizations either have a gene therapy proposal or are starting gene therapy development, and perhaps in the near future we will go even beyond these proposed therapies...

I've been an advocate for so long, 11 years, that I'm almost numb to bad news but the devastating news was crushing to many and appears to be a major setback. I cried some but in a way I wasn't completely surprised, but it was still disappointing. It's frustrating for those who keep getting worse and I don't think anyone can understand this feeling unless they've experienced constant mobility loss.

Many are fretting the dreadful chair, a major milestone, just as I did a few years ago. My new dreaded milestone is the fear of losing upper extremity capacity...BUT I'm trying to live for today and within my personal passions and goals in order to remain focused. It isn't always easy but I don't have many other options. 

I feel bad for everyone but to everyone I would say keep going and keep sharing. Don't lose hope, it may still be a very long road or maybe not, who knows. The point is every effort from those involved is another step to perhaps another door. Perhaps in the not so distant future, despite my own potential increased frailty, we will have prevented a newly diagnosed patient from getting worse and that has to mean something. I'm not saying I've given up but I'm aware of the reality that maybe I won't make it this time around or maybe I will...I guess we won't know unless we keep trying. That's all we can do. Today there are more patients, more organizations and more scientists involved, all we can do is help grow the noise of GNE Myopathy. If you need a break, take one. If you have the energy, be loud.

Much love to all the patients XO.

Better Days Ahead

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I tried a new color, I went purple people eater! I'm going to be lazy and copy and paste what I wrote on social media for this drawing. Happy Friday, friends! Be good to each other. xo

"Finally found time to go back to this drawing and finish it. I struggled with this one...dissatisfied I kept noodling at it but ended up going back to the original plan so I can move to the next one :/.

I love window light and its endless patterns. They are so simple, yet so graphic and descriptive. They tell a story of their travels; where they have been, where they are going.

Window light seeping in between blinds always makes me think of solitude, loneliness and contemplation. It makes me think of the days you don’t want to get out of bed, when you would rather let the strips of light lay on your body and make it bend to you rather than bending to life. Enough warm light to caress your face, as if those strips bring you some connection to the outside world, but hidden enough to stay disconnected so no one can see you. We all have bad days. Today, tomorrow or the future sometimes taunts us. The things we are struggling with whether it be a disease, disability, depression, death, loss, relationships or life’s obstacles that seem to hold us down with little hope. In those moments I turn my head towards the warm ray bans and murmur to myself, 'Better days are ahead'."

We are

I've been reading a lot of Charles Bukowski lately. He's one of my favorites. I think we are all thinking and wondering lately; some more loudly, some more silently, but these contemplations are nothing new. Humankind has been experiencing, contemplating and fighting the same since the beginning. We are led by our fears and ego, our emotions, like fear, are easily manipulated and controlled. If only we could see each other as the same clones and instead connect through our mass similarities like loneliness, fear, suffering, burden, love and pain, perhaps we would stop championing what is different between us, carrying them around like flags of declaration, and instead swell on what connects us.

These favorite Bukowski quotes and poems verbalize it for me...

“We're all going to die, all of us, what a circus! That alone should make us love each other but it doesn't. We are terrorized and flattened by trivialities, we are eaten up by nothing.”

 

"there is a loneliness in this world so great
that you can see it in the slow movement of
the hands of a clock.

people so tired
mutilated
either by love or no love.

people just are not good to each other
one on one.

the rich are not good to the rich
the poor are not good to the poor.

we are afraid.

our educational system tells us
that we can all be
big-ass winners.

it hasn't told us
about the gutters
or the suicides.

or the terror of one person
aching in one place
alone

untouched
unspoken to

watering a plant."

 

"We are
Born like this
Into this
Into these carefully mad wars
Into the sight of broken factory windows of emptiness
Into bars where people no longer speak to each other
Into fist fights that end as shootings and knifings
Born into this
Into hospitals which are so expensive that it’s cheaper to die
Into lawyers who charge so much it’s cheaper to plead guilty
Into a country where the jails are full and the madhouses closed
Into a place where the masses elevate fools into rich heroes"

Summer la la land

We haven't been on a road trip this summer. We've both been busy with work and other things. Couple weekends ago our plans were canceled so we decided to take a small spontaneous road trip. I just came off of two weeks of daily intense testing with a specialist and was looking for a break from the city.

For some time now I've been on a frustrating search for a diagnosis unrelated to my GNEM (HIBM) condition. I received results a couple weekends ago and it seems like it's going to be another long search for another mystery diagnosis - no real answers have surfaced. It's been a frustrating couple plus years and it's reminded me of the tumultuous and endless search I endured for my HIBM diagnosis. 

We started our short road trip near Mojave desert area to visit "The Cat House". The Cat House is a non-profit breeding, conservation and research facility and home to over 70 of the world's most endangered felines such as the Amur Leopard where only 30 are left in wild East Asia. I'd recommend not going in the summer (because it's hot) and attend their biannual twilight tour where they bring out more of their cats that are hidden in their compound.

Behind The Cat House is an old abandoned mining town. 

Then we journeyed down to Vazquez Rocks.

Vasquez Rocks are formations sculpted by 25 million years of earthquake activity along the Elkhorn fault, an offshoot of the San Andreas Fault. Erosion gradually stripped away soil from around the rocks, leaving these ancient creations. 

Vasquez rocks was named after Tiburcio Vasquez, a notorious bandit who hid from sheriffs in these rocks and caves in mid-1800s. Vasquez sided with Californios in battle between US and Mexico over California. He was executed in San Quentin prison. 

Since, it's been used as backdrop for films like Star Trek, Flintstones, Planet of the Apes, Dracula, Lone Ranger and Zorro which was inspired by Tiburcio.

We continued west & emptied out into Carpinteria, Summerland & PCH. Stopped in charming Summerland; a mix of country ranch farm style & summer beach house overlooking Pacific Ocean. There's a tiny street full of antique stores, bougey bed & breakfast, chapel & Anne of Green Gable type farm houses mixed with beach city cottages.

On our way out we ran into church-led 53rd annual fair and fundraiser with Tejano music playing in the background and congregation members bringing tamales & sheets of homemade pineapple upside down cake. We didn't have much time to stay but stopped to look around.

Flanked by nurseries, olive farmland and oceanside Amtrak railway is Carpinteria; a small and older oceanside surf town. Carpinteria is where the California's first branch library resides and where the annual avocado festival happens. Since it is an older town it naturally has a retro vibe; a mix of surf and local culture and old school barber shops, soda pop candy shop, tamale Deli shops, snow cones, burger/shake stands, banana trees and antique shops with Hawaiian tiki vibe and 50s radio playing in the background. There is a popular campground right next to the beach that I would recommend.

We pretty much drove around PCH including through Santa Barbara, and if something caught our eye then we stopped. All in all a very low key and simple road trip. I've been bummed we haven't had as much time to explore this summer, I'm sure we'll make it up come autumn. Can anyone believe it's already August?

Traveling is becoming more and more of a strain. Every trip seems like I need a longer recovery period than the last. I returned home to more than a week full of achy pain and fatigue, and this was considered a very small venture compared to others. My body felt like it had been punched and bruised from head to toe. Fighting chronic and ever-increasing fatigue and pain has become a challenge, no doubt, but I refuse to give in. Sometimes I wished I didn't have so much drive and curiosity, it's very frustrating. Becoming disabled sucks for anyone and everyone but it's even harder when it happens to those who have natural drive to live, experience and led by their curiosities. It's a greater mountain to climb but the point is to keep climbing.

LA Times 'Abandoned as a baby, she gets a priceless gift'

If you know me then you know I'm a researcher by nature.  I love to research EVERY subject matter to death. I get a rise and lost in the process of discovering and investigating facts, history, point of view, truth and real stories about real people. 

After LA Times released my story online on June 21, 2017 and on the front cover of their Sunday paper on June 25, 2017 it struck me as odd that I hadn't research journalist Corina Knoll, nor read any of her pieces.

Corina Knoll is the LA Times writer who found me in internet land and asked to write my story back in in 2010.

I can't believe I agreed for a writer to write my story without knowing their work. But when you have an extremely rare condition, you agree to any coverage. I also never expected my story to be treated as big and written as well as it was.

I found out Knoll is an award-winning journalist. She was part of the team that exposed and investigated corruption in Bell City, California - which led to the paper's Pulitzer Prize for public service - and went on to cover the trials of the city's former corrupt officials. She also contributed to coverage of the San Bernardino terror attack that won the 2016 Pulitzer Prize for breaking news. I knew she was a mother of three and adopted but didn't know much beyond that.

When we met annually and sometimes bi-annually she was professional and stuck with focusing on the interviews. She couldn't even accept coffee from me. I offered one day, not thinking, and she said, "Oh, no. We can't accept any gifts".

"Duh," I thought. "Now I'm one of THOSE oligarchs bribing their way through with promises of coffee and a dash of cream."

I guess I never looked into Knoll because I didn't think of it and didn't want to get my hopes up. I also didn't have much confidence that my story would be accepted by her editors as "newsworthy". I'm not fishing for compliments but as I told her I found it amazing that she even stuck with my story for this long because I largely find myself boring. This could be my self-deprecating nature, lack of self-awareness or the fact that when we live with ourselves 24/7 we can't see what others see. I think it's the latter. 

Every year Knoll would update me and apologize, reassuring me that she's dedicated and wanted to share my story, but her pitches weren't striking a cord and/or the news season was really busy. I would always feel bad that she even apologized, after all, she was putting in a lot of personal time into my story and in a way I felt bad she was "wasting" time pursuing it.

Though I have had many stories written on me I treated this LA Times interest as a "maybe" and put it in the back of my mind, so no apology was necessary. It eventually became a non-thought and we would catch up here and there.

Six years would snail on and many pitches later Knoll contacted me this past spring and said her latest editor was interested in my story and wanted to do everything they could to maximize visibility. 

When Knoll and I met in 2010 I was walking, still driving and living in San Francisco. She was married with no kids. Fast forward to today and I am no longer walking, standing, driving and I'm back in SoCal. Today, Knoll has three adorable children. 

In many ways I think it's been special that it took six years to publish. She met me when I was still walking and the passing of time has allowed her to experience GNEM (aka HIBM) in action. 

So I started looking her up right after my story was published and began coming across her pieces. Her 2012 piece Abandoned as a baby, she gets a priceless gift particularly struck me one late night. 

I read this 2012 article to Jason while sitting in bed. I wept the entire time. She shares her experience as an adoptee and how it trickled over to her own child and becoming a mother. 

Her words are so beautiful and poignant. So eloquent. So honest. So tender. So familiar. It's about loss and love. It's about searching for identity - something we all go through, adoptee or not. 

I bathed in her words, intimately understanding the voice behind it. If my adoption story was told it would, in many ways, mirror this well-written story.

“I had been housed, but did not have a home.

Adoptees universally are told their biological parents adored them so much that they offered them up to a better life. It is a nice theory, one that has no trace of ugliness,” she writes. 

I'm deeply impressed by Corina’s writing. It doesn't aim to be above you or smarter than you. It aims to share an intimate space in time. For a moment. A rarity today.

“I discovered that faded, typewritten assessment years after being adopted by an attorney and a real estate agent in Cedar Rapids, Iowa, when I was 2. As a teenager, I would take the papers from my mother's desk drawer without asking and pore over them when the house was quiet.”

I did this. I earnestly gazed over my thin tissue papers explaining who I was and why. They were my only link to a past forgotten.

Adoption isn't always easy and it’s not for everyone but I believe in the potential beauty of it. Little people come to you with pre-shaped traits and you're forced to adapt, grow and learn together. Like a dance with four left feet. Some adoptees experience harshness. Some adoptees experience physical, emotional and/or sexual abuse. Some adoptees find solace in experiencing family love and for the most part chalk up their abandonment as another chapter in their life that contributes to the complex tapestries that make them who they are. Many have identity issues, but don’t we all. Sometimes it doesn’t end in fairytale form but neither do many biological families. 

It's not about parents controlling the entire direction of a human life from inception on. It’s about watching human life grow even if it is an abandoned soul. It's about letting them find themselves, find acceptance, and find love within and in others. And it's about grown-ups learning more about themselves just as they would through a biological child, yet it's slightly different and through a once abandoned child.

We're all searching, some more than others. Some more wounded than others. But wounds make us stronger, adaptable, perhaps more compassionate and understanding of human existence. 

Some of us orphans do come out at the other end and form into beautiful people, void of pity and through Knoll's words I sensed she is one of those. 

Please don’t ever pity an adoptee. I get this all the time. Pity is unproductive, an unnecessary stain.

I know we read a lot of bad things every day. It feels like the world is caving in. It feels like it's full of evil selfish people. Wars have been unnecessarily started, innocent people are senselessly dying. It feels like we are being exploited and uncared for by those in power - today and before. This is not untrue. But, while it's important to stay informed, scrutinize and question everything you're being told, it's also important to take a break from 24/7 fear and engage with those around us; neighbors, strangers, friends...I myself have stepped back. We soon realize the world and those within it aren't as bad as we are being told.

Take a break from the fear, read someone's story, gain perspective and focus on moving outside your own bubble. 

Everyone has a unique story. Like a snowflake no two people share the same. No person is a category.

See the good. And check out this story: Abandoned as a baby, she gets a priceless gift

Thanks to journalist Corina Knoll for painting my life in such a wonderful way. I hope she continues to pursue these types of personal stories and sharing her talent.

Welcome to My New Website!

Welcome! Thank you for visiting. After years of taking a break, I'm returning to blogging land. 

Every post prior to this post are old archived blog posts from my greengreengrass.typepad.com.

I will be shutting down my old blog and will be blogging on here from now on :).

If you want to follow my new blog and receive notifications of new posts via email then:

Cheers!

Reminder

I try to remind myself that all we have is this moment. It helps me to keep living, keep planning, keep moving, keep believing, keep feeling.

I feel like I need to get on here more and share how things have progressed, how I'm feeling.

But like I mentioned in previous posts, I think I have been avoiding talking about it; in art and writing. Rather, I'm doing my best to live my life, live in the moment and take it for what it is.

But one cannot escape the looming shadow of reality.

I hope everyone is doing well out there. xo

Ponytale

This piece was inspired by a simple moment of tying my hair into a ponytail. 

My hair has been short for the last few years but recently I have been growing it out. My shoulders, arms, hands and fingers are significantly weaker than they were a year ago. This makes tasks like washing hair, blow drying and doing something as simple as tying a ponytail much more difficult.

Last month I tied my hair for the first time in years and it frustratingly took five minutes to achieve. The whole time I thought, "This has never been hard in the past. Not this, too". 

In this simple moment it is, yet again, glaringly obvious of what has left and what is leaving. It is the moments that make up a story.

As a child I remember bunching my hair, wrapping a rubber band around and looping it through effortlessly. Prior to learning, someone else had to do this for me. Usually my mother.

As a teen and as a young adult never did I give this act a second thought. It was effortless. It took a second to accomplish. 

Untitled

This one mirrors the 1949 June Vogue cover by Clifford Coffin.

I like the desert. There is a familiarity there. It resembles many of my recurring dreams that began as a child; an abandoned land that I would fill up with my mind.  

Most people see a bottomless infinity, desolation and life that is stunted. But I see it as a place not known. The sun pulsating on my skin feels good and for awhile it allows me to forget the disconnect my body and muscles experience. I shut off my phone and I am away from everything.

clifford-coffin-vogue-june-1949.jpg

I like the solitude and meeting of unusual and unexpected characters and sites. If you don't expect it, you appreciate it more. The desert is a clean slate devoid of noise, commercialism, TV, social media and nonsense, and I am alone and able to comb through a land full of interesting pockets. 

As she moves away from you, diminishing in size, it reveals the journey toward something. Progression in a land that feels lost, she has lost something and can't seem to find it.

I Am a KoreAm Journal Columnist

Hello out there!

I don't expect anyone to be still following me.  I won't even waste time making up lies on how I haven't had time to keep up with a blog. Let's face it, I'm terrible at this.

The truth is.  I'm being lazy about it.  I write notes and thoughts into my phone but never get around to translating it to my blog.  

I don't always have time to formally write down my thoughts and when I do have time I guess sometimes I don't want to use my free time dragging up a subject that is difficult.  

It (HIBM) already has enough of my life and I sometimes I resent giving it a bigger spotlight or platform than it deserves. I know why I need to share and I don't mind doing so but sometimes I just want to be "Kam". No story to be told, just another boring, nameless body in the crowd. 

I limit my sharing. I go in spurts. I wish I was  better at being full time at this but to be frank most of the time I just want to be off living my life to the fullest and not lamenting over this thing that invades my body.  And, I have been doing just that. This past year and half I have put my attention to other things. Like living new adventures only I know about. I have been well. I have the occassional emotional setback but for the most part I feel satisfied. I feel challenged. I feel alive. I'm ok.

Recently, KoreAm Journal gave me my own column.  September they launched my first column LIVING AGAINST FEAR 

Feel free to follow me there.  

"I tend to follow the lines of Twain’s “Write what you know.” And what you will find in my column is an array of stories about my life that will hopefully resonate with many of you—the things that sometimes hurt us, challenge us, frighten us, make us laugh, make us brave or weak and make us cry."

I figure if I'm slacking on my blog at least you can get an occasional entry through my column. Keep following me. I'm always somewhere on the net whether it be my tumblr, instagram (my travels), facebook.

So feel free to stalk me on those forums ;).

Third Annual Bike for Kam

Well, it's that time again.  Time for Bike for Kam.  If you have been following me the last couple years, you know the drill.

Three years ago my friends and I started Bike for Kam as a means to spread awareness and raise some funds for the non profit organization, ARM, that I work very closely with. ARM/HRG is the nonprofit working on HIBM research, the condition I have.

The first two years we rode from San Francisco to Los Angeles in seven days. Between those two years we collectively fundraised over $50K using social media.  Not too shabby for having no project funding and a little team of riders with me running its daily operations. This year we decided to take a break from the epic cross country rides and go local. SoCal, that is. Seven days is alot of time to annually take off. We always have people say they want to ride with us but can't because of work. So this year it's 150 miles, LA to San Diego in two days.  This weekend in fact.

This year I'll be joining my old and soon to be new friends on the road and as usual I will do a daily blog post recalling the day of biking.

With that, visit our website, donate if you are able and then pass our project to all your friends and family.  www.bikeforkam.com

Follow us on facebook, too! www.facebook.com/BikeforKam