What is Rare? - A Look at Oliver Sacks and the Human Condition

In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life. –Oliver Sacks

This post was meant to be Part 2 to my “What is Inspiration?” blog post from last week’s Rare Disease Day. I wasn’t feeling well so here it is late. This is a very old illustration but portrays the subject of what my next set of illustrations will touch upon - less about loss and more on the physical pain (unrelated to my GNE condition) I’ve been experiencing and how this feels. Pain that I know many endure their entire lives. 

Last week I quoted Oliver Sacks:

I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and been loved; I have been given much and I have given something in return; I have read and traveled and thought and written. I have had an intercourse with the world. 

Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.

This quote is from Sacks final op-ed in the New York Times. He wrote it two years ago on his deathbed. He died of liver cancer at 82. He lived a remarkable life.

In the last days Sacks expresses he is able to see his life as “from a great altitude” sensing the connection of all its parts. Humility and lack of control over you body can do this. I’ve felt the same the past 16 years. I see everything different - like a single snapshot etched into my mind.

I wanted to write an article on Dr. Sacks for years but admittedly my blogging has been sporadic the last few years. I’m trying to get back into it.

I had read about Oliver Sacks before my disease started, but obviously now that I’m living with a condition of my own, my perspective sheds a new light onto his work and I understand more.

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Oliver Sacks was a neurologist, physician, professor, author and humanist. Born in London to a family of physicians and scientists, Sacks would eventually follow in his parent’s footsteps but first he moved to America where much of his life’s work and contributions occurred.

As he wrote in his memoir On the Move, he doubted pursuing a medical career after completing his training, so his life’s work in neurology didn’t come until after he accomplished a few selfish obsessions, like his adoration for motorbikes. He took off to motorcycle across North America and other regions. Afterwards he found himself in California where weight-lifting became his newest mania. He even broke records.

It was fun until he realized, “Is this all? Is this all there is to life?”

Sacks wrote some 10 books on patient case studies. His work has inspired films, playwrights, animations, opera and music.

Many of Sacks’ patients had devastating and irreversible neurological conditions. His work in humanizing medical textbook conditions spanned from Parkinson’s, Autism, hallucinations, depression, Phantom Limb Syndrome, Tourette syndrome, Schizophrenia and Alzheimer’s.

He investigated the world of music and its impact on the brain and explored deaf people and sign language culture. He believed the brain was the most fascinating thing on the planet and dedicated his life to understanding the brain’s peculiar and complex pathways.

Sacks openly spoke on being secretly gay during Alan Turin years, a drug addiction that almost killed him, three decades of celibacy and life as a patient as he chronicled his own progression.

For someone so attuned with interpersonal relationships, Sacks self-imposed decades of celibacy due to guilt over his sexuality. It wasn't until 2015 when he faced terminal cancer that he came out. He broke his decades long celibacy at 75 when he began a relationship. He experienced six years of love with his partner until his passing.

Oliver Sacks believed understanding people could elevate medical science. He spoke intimately of specific case studies in order to instill a deeper understanding from the mainstream world. In many of his writings as he shares patients' stories, I sense a mirror into his own experience of living with a condition.

*   *   *

Sacks’ first book was Awakenings. He only wrote this case study book because his patients asked him to tell their story. Like many with diseases and constant conditions, the person simply wants to be seen and understood.

Awakenings was eventually made into an award-winning film which led us through Sacks’ discovery of a drug that benefited Encephalitis LethargicaEncephalitis was an epidemic from 1917-1928. It was also known as Sleeping Sickness. This disease attacks the brain, leaving the person in a catatonic state, unable to speak or move. During this period Encephalitis spread throughout the world, touching some 5 million people. Some died, most never returned to their pre-existing state.

In Awakenings Sacks’ patients were awakened after decades of catatonia due to his care. But these patients were also forced to learn how to live in this new life. The way I see it, it’s as if this disease was a form of time travel.

How do you return to the familiar now disguised as the unfamiliar?

In The Man Who Mistook His Wife for a Hat, Sacks chronicles a condition called Visual Agnosia, a condition where the person, or rather their brain, fails to recognize objects.

Another specific case study Sacks spoke on was Charles Bonnett Syndrome, a condition where visually impaired people experience lucid hallucinations. The mainstream medical world often disregards or masks what they do not know so they naturally disregarded this group which led to the fear of being called “mental” and therefore patients’ mistrust led to lack of disclosing such pertinent hallucinations. But Sacks assured these patients they weren’t insane and educated their phsyicians on this fact. There was a perfectly natural reason why hallucinations occur.

Sacks said we see with our brain which we know as imagination. This is “normal”, we have lived with it our whole life and we understand it intimately. But he speaks of hallucinations which mimics perceptions and not of our creation, nor control, and that they come in visual or vocal/musical form.

These manifestations the mainstream fear and judge heighten our awareness of a bigger picture. For example, hallucinations helps the scientific world explain how the mind works.

*  *  *


Sacks was interested in the adaptability of the human spirit in spite of living with such a biological chance, which is what many medical conditions are and of no fault to its host. He doesn’t merely speak of biological factors and scientific jargon, he humanizes his patients so that others may see what he sees or rather, what the patient sees.

This natural empathy wasn’t and can’t be taught. He speaks of his patients with warmth and wisdom. This does not say some of his patients weren’t angered by his portrayal of them, something he openly admitted. But for the most part he did his best to offer a window and chipped away at barriers of misunderstanding.

Sacks often said the patient might know more about their condition than those treating them and insisted that symptoms are often not what they seem. He believed listening was almost a more affective tool than the knowledge itself. He pulled a transparent veil over a population that was (and still is) unheard, hidden, an inconvenience and even vilified for political gain.

Facts are measurable but humans are not. As a scientist, Sacks tried to live a life of detachment in order to remain scientifically objective, but he also spent his life prevailing over detachment with his patients because he saw it as a necessary means to true understanding.

I've read most of Oliver Sacks' books and speeches and sense a deep kinship. I could go on about all of Sacks’ case studies and his span of knowledge and I’ll most likely write about him often. But the takeaway is he had both medical knowledge and empathy.

This is rare.

 Illustration from 2011. HIBM is now GNE Myopathy

Illustration from 2011. HIBM is now GNE Myopathy

What is rare is tenderness offered to the sick and while overall there are many good doctors, I’ve had many intimate experiences with this lack of tenderness. My condition was highly difficult to diagnose, a condition that at the time was thought to affect one in a million. So while I accepted the difficulty of diagnosing a disease not known to most of my country's doctors, it was the lack of empathy that was difficult.

Like I said in my last post, I had some of the best doctors do their worst work on me and in almost every case they disregarded my emotions sparked by their terrible care and offered me a pill to deal with me.

Last summer I met with an international scientist and a fellow patient from another country. The conversation turned into ridicule of his country’s patients who cry when speaking in front of legislators or biotech firms.

I was initially stunned. There is nothing wrong with crying and no person, not even a spouse or family, could truly understand the difficult road of living with a (rare) progressive disease. But then I realized 1) it’s their culture that drives this perception and 2) scientists are known for being rigid and matter of fact. It is why they are scientists and good at it. Scientists deal with facts and information. It doesn’t say they don’t care, but they aren’t always wired for human sensitivity. I’ve had many patients come to me offended by what a scientist said to them but in knowing that scentist, I knew it wasn’t malice but merely a personality difference.

Empathy and emotional intelligence cannot be taught. You can’t intellectualize or learn emotional intelligence. I’ve seen people do it and it can come off forced and awkward. Some have it and Sacks was one of them. He didn’t speak at patients, he lived beside them - in his work and in his thoughts. He was a humane chronicler of neurological disorders. He was a physician and a story-teller. He is one of my heroes because he is so rare and I deeply wished I could have met him. It would have been a great privilege to illustrate some of his case studies.

We are all mere feathers in the wind, anyways. It would be wonderful if we carried each other in this same fashion more often.

What is Inspiration?


This is an old one but still one of my favorites. For me it exemplifies an array of inner struggles.

This piece received the Honorary Special Merits Award on Capitol Hill during Rare Disease caucus week in 2016. This week is rare disease week which aims to educate attending Members of Congress, Congressional Staff and industry partners of the physical, scientific and political struggles rare diseases endure.

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I have been a public advocate for my rare and degenerative muscle condition since 2007 and it never gets easier. Most of the time being public about my condition makes me feel like this illustration.

I have GNE Myopathy, formerly named HIBM. GNEM is a rare genetic and degenerative muscle condition that ravages until there is nothing left to take.So far I've lived with GNEM for 17 years.

GNEM condition fits under the “Orphan Disease” or “Rare Disease” umbrella. A rare disease is any disease that affects a small percentage of the population, therefore has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it.

However, it's thought some rare diseases, most which are genetic, are easier to cure than AIDS or Cancer, for example, but the lack of funds and awareness in a world-of-profit can be its greatest stumbling block. 

Rare diseases are known to be very difficult to diagnose and most face misdiagnosis for months or years. Through the years I’ve seen more than a few dozen doctors. Some of the best doctors did their worst work on me. 

5 misdiagnoses and 5 years later, I found answers but I also entered the lonely world of being unknown. Back then there wasn’t a bustling worldwide GNE Myopathy social media group filled with active patients like we have today.

When I was diagnosed in 2004 it was thought I was 1 in 1,000 worldwide. Today, it’s estimated there are 3,000 to 7,000 GNE patients worldwide.

Though GNEM is rare it has been identified in Middle Eastern origins (Iranian, Palestinian, Jewish Persian most common), Japanese, Korean and Chinese, European, South American, African, Hispanic - touching all corners of the world.

In the US a disease is considered rare if it affects fewer than 200,000 people, yet collectively there are 7,000 rare diseases affecting 30 million Americans nationwide.

Half of rare disease patients are children and often fatal. Only 5% of rare diseases have treatment today.

Well known diseases that people may not know are rare include MS, Cystic Fibrosis, Celiac and and fatal Duchennes MD which affects children.

It's known that rare disease research has changed and benefited research in other more common diseases like muscular dystrophy or cancer. Cancer, for example, involves mutations of DNA like genetic diseases. My disease is a mutation.

*  *  *

When you experience a life-altering change, it's difficult. When that life altering change is unforgiving and relentless in its taking, it can feel like some colossal cruel joke. And, when you open yourself and your life as an advocate - for a condition that worsens every day - balancing the constant loss and sound advocacy is just another level of difficulty.

Life as an advocate has been all consuming.

I have done everything from acting as pro-bono Creative Director for a non-profit that was helping to develop treatment for GNEM, designer, mass fundraising and getting my disease into the media at a time when there were few public stories on us. I’ve created a few one-woman team grassroots projects, raising over $160,000 using only social media. I have forced myself to learn skills to help me better advocate like building websites, fundraising, building promotionals and media, social media and illustrating in order to communicate how I feel inside.

All this while working full-time as an Industrial Designer.

In the beginning of my advocacy I realized people didn't know the intimacies of what I and other patients experience. Seeing that there were no patients blogging and sharing online, I added life as an amateur blogger to my list - sharing my most intimate moments.

I'm in over 35 articles and/or media appearances for various reasons all stemming back to my rare condition. I've given speeches and lobbied congress during Summit week. But it doesn’t matter how seasoned I am at it. It’s still hard. Every single time.

It's been 10 years of advocacy and I'm exhausted.

In the beginning I had zero experience with nonprofits and blindly jumped in. I thought it would be easier but the world of rare disease is difficult to traverse and often political. I have learned much since those wide-eyed idealistic days.

I’m often hard on myself. I doubt my contribution because we are still living with this. But I try to remind myself those were chaotic and difficult days and I like to think I helped build awareness in a time where there was little of it. I have so many GNEM patients tell me they learned of GNE (HIBM back then) or I was the first patient they saw due to my Bike for Kam or skydiving videos. 

*  *  *

As GNEM progresses, my body requires that much more will to continue living at this pace. More than ever my time, energy and hands are finite. I’m forced to narrow my focus. I don’t have that same body from 10 years ago. 

Despite my own attempts to escape only being known for my GNE Myopathy, I've realized my advocacy has just begun and as an independent advocate I’m conceptualizing how to approach disability advocacy in yet another new way, while  getting GNEM into the mainstream’s consciousness.

But in many ways, though, I’d prefer to fade from the limelight.

Advocacy often made me feel alone and I was especially lonely when there were fewer involved back then.

In 2007 my vision was patients sharing their stories from all over the world. I've always said since we are rare, it’s only the patients who can inspire a call to action. This vision didn’t quite happen during my most productive years with nonprofits but it definitely is today due to multiple patient organizations and GNEM patients’ efforts worldwide. 

Today, the face of GNE Myopathy advocacy is much different - with many global hands involved and I have to believe that one day treatment will be found...even if it doesn’t come in time for me. 

*  *  *

I often hear, "You're an inspiration". I get it. I am inspired by others too, including other “disABLED” people but probably not in the same way society is inspired.

The truth is I don't want to be an inspiration. Sometimes this comment makes me feel like a fraud and is unwanted attention.

Like I'm on a pedestal under false pretenses.

The inspiration just wants to be “normal”, preferably unknown. 

Inspiration has its ugly side, too.

Australian activist Stella coined this as “Inspiration Porn” which is the “the portrayal of people with disabilities as inspirational solely or in part on the basis of their disability”.

It's a form of objectification and even fetishizing, something I see common with ambled bodied men as they objectify and are “inspired” by “courageous” girls who are disabled and/or in chairs . Stella explains society mostly experiences the disabled as “objects of inspiration” and this objectification is for the benefit of non-disabled people so they can feel motivated, inspired and project their, “I'm thankful, it could be worse”.

One of Stella's examples is those memes with an image of a disabled person or an amputee who is out there living their life and next to it it says, “The only disability in life is a bad attitude” or “Your excuse is invalid”.

Stella charmingly follows by saying, “No amount of positive smiling at a flight stairs has ever turned it into a ramp”.

Stella Young, the Australian comedian and disability activist, died at age 32 in 2014. Young was born with a genetic disorder called Osteogenesis Imperfecta, which caused her bones to easily break. 

 “The issues in my life come not from the fact that I break my bones occasionally, they come from the fact that I can’t get into the vast majority of public buildings I want to get into” -Stella

I completely agree with Stella on this pervasive nature. But I'm also not a rigid person and understand the flip. I don't think calling someone an inspiration is necessarily the issue, it's ones intentions and ignorance behind it that sets people off.

The thinking behind such statements has to change.

*  *  *

Being the subject of people's glares of admiration can be deeply uncomfortable, especially from a complete stranger. I've had complete strangers ask me within seconds, “What happened to you?” as their eyes well up in pity while sniffling about what an inspiration I am - as if being out in public was some monumental brave achievement.

This is the kind of inspiration porn Stella spoke of.

It's the low expectations of disabled people that is objectifying. It's the scrolling through social media for those 1 minute feel good inspiration porn clips that, with pity's assistance, elevates ones “blessed” and “thankful” complex; a gesture sometimes quickly abandoned with a single swipe up.

I don't want to be that kind of inspiration. I want people to be open to different people and perspectives that last longer than self-gratification granted by inspiration porn.

I want them to change with action.

I feel it's my job to show society that I am the same as them, because I am. I know if I didn’t have an experience with something, I would want to be educated. But if they don't get it after that, then the ignorance they cling to is their own fault.

We all have limitations.

Some people can't draw, does that mean they're disabled and void of worth?

These “limited” parameters have been set by society but in reality we all have limitations and mutations. Our eye color is a mutation.

*  *  *

While it seems easy for me to share, it's not. I'm relatively private and before this whole rare disease, I preferred to blend into the crowd. I go through much self-doubt and often uncomfortable with the transparency.

Throughout the years I've often weaved in and out, taking small breaks with advocacy so I can have a moment to be myself without GNE Myopathy.  

But I share because I know how much this life has touched me, more touching than I ever expected it to be. And I know many are going through the same kind of struggles with health, disability, life, loneliness, grief and loss.

For some, being told you're limited only quells a greater desire to prove them wrong and that is what happened for me, and I don't want others to feel limited. There is so much life to live. I share my travels not to brag but because I want others to see that whatever they're experiencing, it doesn't mean the end.

But I also don't want my sharing to be baseline for others to judge or compare other disabled people to. Like a snowflake, every single patient and/or disabled person is different - even within their own circle. Not everyone can travel. Some are bedridden, some are riddled with chronic illness, social anxiety, depression or illness beyond the physical. And many don’t have support, financials nor the living arrangements to support a barrier free life.

Everyone is different. But I hope my sharing shows you can get out there and get lost even if it's in your own backyard, local park, passions...or your imagination.

It's possible our limitations are self imposed. 

So, if getting out there and living life is inspirational, then let us all be inspirational. 

If being vulnerable is inspiring, then let us all be inspiring.

If showing empathy and openness to those who need us is moving, then let us all be movers. 

Tomorrow is Rare Disease Day. Look for my "What is Rare?" post tomorrow.

Goodnight :).


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."

 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"


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


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
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

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:



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


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. 


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.


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 ;).