Uncertainty Is Certain

Uncertainty is a friend of mine.

The unknown is uncomfortable for most of us but we don't know how much until it's staring us in the face. For some of us the reaction is to become further unknown. We feel emotionally isolated and thus further isolate ourselves.

What I have learned about uncertainty is life is to be lived and not controlled and as much as I’d like some control over my body and this life, control is merely an illusion…for all of us. “We don’t know the future, much less control it. And yet we continue to believe in the illusion of control. We face a chaotic and complex world, and seek to control it.”

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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
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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 it feels — pain 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 have wanted to write an article on Dr. Sacks for years but admittedly my blogging has been sporadic. 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 deep 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.

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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 not of our creation, nor control, and that they come in visual or vocal/musical form.

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

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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. He doesn’t 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 too 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 the world’s doctors, it was the lack of empathy that was most 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 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. I feel it’s something I could understand.

We are all mere feathers in the wind. It would be wonderful if we carried each other in this same fashion more often than not.

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

“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.”

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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. 

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 ;).

Playing Art Catch-Up

Hello?  Is anyone still out there?  I highly doubt it.  What am I averaging, a couple posts a year now?

 I'm hardly followable.  I get it. I barely blog now.  I know, terrible. I'm not sure why.

I guess I go in swings where sometimes I want to write or draw it out and other times I get myself into distractions and focus on living and enjoying life rather than dispensing my emotions or running, errrr, rolling to publicly catalogue it.  

During those times, I barely let anyone know what I am doing.  It's kind of like me not wanting to share everything about myself.  I suppose, I want some pieces to hold that I only know about.  I need that, too. I can't be mentally in HIBM 24/7, even though there is no real way to take a break from it, distractions or not.

If I'm asked about my HIBM I certainly don't mind talking about it. In fact, I'm glad if they do. I'm glad if they feel brave enough, or even better, unphased with asking me what is obviously on their mind. But if no one asks then I normally don't want to bother people and I spare them the details. With that, I guess I haven't been in the blogging or drawing mood. I go in waves.  

Drawing allows me to shed what I'm feeling without burdening others.  

There is a sense of calmness and working through the journey of emotions when I journal them through drawings and I need to be better at making time for them.  If I do keep progressing, which will most definitely happen if treatment doesn't draw nearer, I too would be interested in seeing the timeline of progression and moods through art. But I'm still hoping I won't see that day.

The thing is, I only share my drawings and my life because I want to motivate results and action.   I don't want to be just an "inspiration" because most inspirations are momentary and then forgotten about.

What am I supposed to do with that?  

It's not tangible. It's not something I can apply to the here and now, so I have very little reaction to "you're an inspiration".  True inspiration motivates action.  I guess I want action. I want passerbys to get involved.

I share my art for this reason and not to be watched from the sidelines as I deteriorate, hearing the words, "your art is so inspiring or you're so inspiring".  It's not right for me to feel this way but sometimes I get upset about this and I become discouraged and sometimes stop drawing or blogging.  When I feel like it doesn't matter, I withdraw. It's like a dagger to my heart. I open myself up not to be noticed but to perpetuate action.  

I find myself thinking that I don't want to hear how sorry everyone is ten years down the road when I'm already deteriorated, especially when something could have been done to prevent me from getting that far. I guess, I'm not interested in seeing sad faces ten years down the road when something could have been done.

These thoughts are unfair but honest.  I know things don't work out like this, it's no ones fault or duty, and patience is needed but time is always weighing on my weakening shoulders. Literally.  

With that, I realize I haven't posted art on here in a whileIn fact, I have only completed a couple new drawings in the past 6 months. I need to get better.  I have, however, been in four art shows that I never blogged about on here. For now I'll upload some of my newer drawings but you can always view them on my Facebook page

I'll get back to drawing this summer.