Design with 90% features more than 26 innovative projects from around the world that showcase “design solutions toward a more equitable world by increasing access, improving health, and empowering opportunity for the most marginalized communities around the world” proving design can be a force for social change.Read More
So, even though at times it feels like I've lost my physical grace and feminine expression through the loss my leg's function or the hands that apply my make up, I know it is not these things that hold my image, yet it's because I can't do these things and what has resulted because of it that really adds the pages to my own book. All that is waiting is for us to author and accept it.
We need to find it within ourselves to be ok and happy with who we are. If you're not ok, then no one else will be ok with you.Read More
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.”Read More
I spent my weekend celebrating my birthday early. Every year I usually try something new, particularly scary, to celebrate another year like skydiving, parasailing, scuba diving or some big road trip. It’s a way for me to fight back against this progressive condition and welcome another year of it.
Since 2018 has been rough I opted for an anonymous quiet hotel-cation and relaxed. I guess that is something new for me?
In all times of struggle, always look for the beautiful for it's all around us.Read More
I can hardly believe April is approaching and in a week I'll be 39 years young. I feel like 2018 has sped passed me in some cosmic blur and I'm doing my best to pick myself up and dust myself off.
No exaggeration, I've cried every single day and night of 2018.
My health has spiraled out of control with chronic symptoms not directly related to my genetic muscle wasting disorder, GNE-Myopathy. Last year when my symptoms became too big to ignore, I began an aggressive search for why and have seen at least a dozen different specialists.
Symptoms like debilitating chronic nerve pain, chronic itching, and chronic pain have become new friends of mine, but not the good kind.Read More
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:
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.
* * *
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.
* * *
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 Lethargica. Encephalitis 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.
* * *
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.
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.
This is an old one but still one of my favorites. For me it exemplifies an array of inner struggles.
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.
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.Read More
My condition and move to California has sparked me to live by a “Why not?” philosophy. As I wrote in Overcome, an article in my former KoreAM column about my skydiving experience, despite my immense fear of heights I felt I should try it because when you’ve lost everything, in a sense, there’s really nothing else to lose. All my other fears and obstacles seem to pale in comparison. I try to be open to anything at least once and because of this kind of thinking I have tried so many new things my former self would never dream of.Read More
Big cooking became a part of my California identity and I loved cooking for friends and family. Childhood holidays are a big part of my memory bank. My mother and grandmother were always in the kitchen whipping up far too much food for visitors would stop by throughout the holidays.
I knew this is what I wanted for my future home.
Today, I don’t cook with the same intensity. I can’t. Through the years, Jason’s role as sous chef has grown and even though cooking is not innate nor his passion, he, per usual, assists my passions. But there is a point where I can no longer say it’s me that is behind the cooking and while cooking isn’t just the physical task but also understanding of recipes, proportions, organization, quality control and technique, there will be a time in the very near future when I will hang my apron for good...I can feel it coming to an end.Read More
"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.”Read More
The Last Bookstore is the largest used and new book store in California. Take a look at this Short portrait documentary on how this amazing space came to be.
The founder and owner Josh Spencer was hit by a car and paralyzed. At the time he was building his online book store. Despite the accident, chair and depression he didn't let it stop him from going to garage sales and library sales to pick up inventory. Today his little book dream and great love for books has grown to 22,000 sq feet of books, records, art and even art studios all in the old Crocker National Bank that helped set up Los Angeles' economy in 1914. It's a neighborhood treasure.Read More
“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.”
Follow my editorial column at: www.iamkoream.com or their facebook page.
Here is the published November issue. I share my experiences as an orphan, an adoptee and general journey.
Read Infinite Seeker
UPDATE: All these Koream links are not there anymore. To read any of my column visit here: http://kore.am/?s=kam+redlawsk
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.
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 ;).
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.
I haven't been much of a poster on here but I have been drawing alot. I go through periods, I guess. Sometimes I don't want to "speak". I'm doing fine and there is no particular reason but at times I would rather draw than write.
Picasso's artwork is often categorized into periods; his Blue periods, Afrian-influenced periods, Rose periods, Cubism. People are like that, too. It's not that I don't have anything to say, I have too much to share and say, but at times I prefer the solitude of just me and a drawing.
Sometimes, I feel like I am saying more with less. Sometimes, I get tired of the sound of my own voice or tired of sharing so much that to me feels boring. Sometimes, it's not about telling people how they should be, how they should view things or the beliefs they should hold, yet it's the quiet sharing or story-telling that can drive a point home.
A few weeks ago I watched a documentary on the Topps Sisters, a pair of farm-raised lesbian twins who write and belt out country songs, yodel, perform sketches that lampoon both rural and society folk, and champion political causes. Their act is fun and kitchy.
While these sisters could have rebeled and protested with loud words and disdain, they instead decided to entertain their point home. They used a sterotypical conservative medium to make their liberal message palatable to conservatives. They did what was genuine to them. It was less about being "right" and more about sharing who they were so that others may come to understand their plight and perspective. If we have an experience, we should share it.
Sometimes, sharing in a quiet way can be just as effective as angry, intolerant reposting of everything we hate. Sometimes, the best way to change another's view involves not trying to and instead sharing oneself.
I have definitely found an interest in story-telling. I have no training, I was not an english major, but I did train in design and have stories in my pocket. I was not trained in illustration, but when I began I merely did what I thought felt right and deduced elements I had learned in design school. I then transported that to personal drawings.
I like story-telling a seemingly simple moment and project it into a drawing. It's an interesting process for me and the viewer. I often receive emails from strangers who share how my drawing applies to their own personal experience. Simplicity is difficult, but the simpler one can be, the better. It's not about being above the audience, it's about inviting them in. At least, this is how I liked to be talked to.
I was watching filmmaker, Andrew Stanton (writer and director of Finding Nemo and WALL-E) give a speech at Ted Talks on the art of story-telling. It sounded a bit formulaic and there was a science behind it, but overall it was about being genuine. It's about real sharing and not about being right or with the agenda of changing your audience's opinion. If you go in it for that reason then you're misguided. Then you are saying you are right and that is one-sided.
He said, "We all know what it's like not to care" and "that we are born problem solvers, we are compelled to deduce". We don't need to be told how to act or view, handheld, talked down to or manipulated into thought. He says, "Use what you know. Draw from it. Capturing a truth from an actual experience."
While blogging and doing art became a way to spread awareness about my rare condition, HIBM, the organization (ARM) and the scientists dedicated to bringing treatment to the public, I would much rather have my privacy. But, this path (blogging and art) felt like a natural way to go and I let it be however it wanted to be. I never realized how much of myself I would give when I started this whole endeavor a little over a year ago. Even prior to blogging and art, I already felt burnt out by HIBM, but this brought it to a whole different level. I'm very glad this endeavor came about, but at the same time it can be exhausting and I've realized that keeping an audience is almost like a full time job.
This drawing, "What's everyone staring at?" is an observation I have when I am out in the wheelchair, especially if I am alone. When I was walking full-time I was told that people would look at me differently when I go into a chair -- even my friends. I don't get upset when people stare, but I do notice it; the stares as much as the people overtly trying not to look, which is almost worse.
Sometimes it's hard to not feel uncomfortable and not feel like the odd person in a sea of "normal". Obviously, I know better, none of them are normal, either. But at a quick glance, as long as everyone is acting similarly, they look the normal ones and I do not.
When we walk past each other we make quick assumptions based on someone dresses or looks, but in general we regard most passerbys as normal people we are passing. But when you see something that obviously fits outside of that box, such as a wheelchair, we categorize them as disabled. Different. And thus all the information and feelings that we have learned about this particular group, we tag them with. Feelings of pity and sadness. "They must be limited in every way", we think and put into this unproductive box of a disabled world.
Until they talk to me. For some, I see their eyes glaze over in confusion when they realize I am a professional, articulate, have desire and passion.
After this it can go one of two ways, they realize, "Hey, this is a real person in front of me, it's not so alienating to understand them." OR they say things like, "Well, good for you for trying to live like a normal person." or " You deserve it, you've gone through so much".
A comment I greatly dislike. A comment that reeks of ignorance. Nothing makes me feel so small and insignificant. And I'm a pretty confident person with a sense of humor about myself.
I can sense the uncomfortable stares.
When I am out alone I definitely get looks, looks that say, "Why are you out here alone?"
Looks of wonder. Looks that are sad that such a young girl is going through such a thing. One day when I was rolling, this drawing came to mind. A crowd of the sameness and how they react when anything different comes into the scene. It can be simultaneous look of stares piercing you, even if they don't obviously look. And, here rests an opportunity to educate an audience and share with, no matter how much I hate being an educator of this subject.
Much of the trick is making your audience comfortable. I feel like much of what I have to do is make sure everyone is "ok" with it before we can begin. Let them know that it is indeed ok and I am real. If I truly want them to learn, then it's not about me.
Sometimes, I want to be alone when I'm wheeling around so I don't make eye contact or engage in conversation with strangers, but as soon as you make eye contact and let them know that you aren't so different, the attitude changes. It can be all about how you act. If you act in self-pity, then everyone will pity you. I try to act as "Kam" because that's all I want to be. That's all I have ever wanted to be and that's all most people want to be; to be acknowledged as their self. For the other 10% who will remain ignorant lost causes, it' not my problem. I did my best.
A combination of something I saw, feel and parts of a recurring childhood dream.
The textbook version of Hereditary Inclusion Body Myopathy (HIBM) looks like this:
HIBM are a heterogenous group of rare/orphan genetic disorders which have different symptoms and could be transmitted in an autosomal dominant or recessive fashion.
Generally, they are neuromuscular disorders, unlike MD which is skeletal muscle weakness, characterized by muscle weakness developing in young adults, causing progressive muscle wasting and weakness that can lead to very severe disability within 10 - 20 years. HIBM is also known as Distal Myopathy with Rimmed Vacuoles (DMRV), Quadriceps Sparing Myopathy (QSM), or GNE related muscle disease.
Now I could go into it further, talking about HIBM linked to chromosome 9, the defective gene regulating bifunctional enzyme GNE, that is the rate-limiting step in the biosynthesis of sialic acid and that Sialic acid modification of glycolipids and glycoproteins at the cell surface is crucial for their function in many biological processes BUT I'm guessing no one wants to read that or understands the "meaning" except for those in biomedical research.
The experience is so much different than the textbook image. In 2003, over the phone of all places, Mayo Clinic gave me my HIBM diagnosis. But my symptoms probably began in 1997/1998. Due to having 5 previous incorrect diagnosis', and a series of bad medical experiences which I will probably share later, I wasn't even sure if HIBM was the correct diagnosis. Clinically, though, I treated it as if it was, so at the very least I could seek next steps...if there were any. I'm the researcher type so naturally that's where I started. I remember sitting in a dimly lit college computer lab perusing online medical journals for information only to find the same bits of word clusters. I read the textbook definition, the prognosis, the symptoms and the black insubstantial words staring back at me; RARE, WHEELCHAIR, WEAKNESS, DEBILITATING, GENETIC, NO CURE, LIFELONG. I thought, "Well this can't be all of it. It doesn't make sense, there has to be more information...something". In actuality, it wasn't the information -- I just hadn't attached meaning to it yet. I was alone in my space - in that college lab feeling neither sad nor angry, but detached. I had been through a number of diagnosis' before, the poking and the prodding, the muscle biopsies, so to me this was just another diagnosis. I had a life to live and these words meant nothing to me, at least not as much as they do now.
In 2004 I remember visiting my physiatrist with this new diagnosis in hand thinking perhaps he would create some understanding out of all my research efforts. He evaluated me and asked me weird things like, "Can you be in a sitting position and rise without needing to hold onto anything?"
I thought, "What a silly question. Of course I can" and would demonstrate it for him in an almost cocky-like manner. "Hmmm, I can do this all day, Doc. Keep it coming".
Today, getting up and down from a seated position is difficult and slowly turning into non-existent. That moment in the physiatrist's office is suddenly clearer and more real than it was when it actually happened. As the years progress, so does my body and when I recognize those measurable moments of progression such as; climbing stairs becoming difficult to non-existent, to not being able to ascend curbs, to not always being able to roll over in bed by myself or having trouble with unscrewing a toothpaste cap, I grab from those insubstantial black words I read in that dimly lit library and I start to attach meaning to them - slowly, like adding photographs to a scrapbook.
de·bil·i·tat·ing (dĭ-bĭlˈĭ-tāˌtĭng) adj. Latin debilitatus, past participle of debilitare to weaken, from debilis weak
"Ahhh, yes. I know what that word means. Gosh darn it, I went to college and Webster tells me what YOU mean", but I so didn't. I so did not.
People who know me would probably say I'm upbeat, full of ambition, positive, optimistic but the truth is it can't possibly always be that way all the time...for anyone. It's not as easy as it may seem and everything is not "ok" all the time. There are days when it is hard to gracefully swallow the reality. Throughout my posts I hope that my condition will become less of a name and more of an experience. It's not meant to drum up pity or sadness for I have no use for such things and that crap is counter-productive, but perhaps I can paint a picture for the strangers who may be reading this or other fellow patients. So, what is HIBM, anyways? It's a part of me but not all of me. It can't be explained in just one post or one definition and the definition isn't as important as the experience. I'll keep sharing - I hope you'll keep reading and let's see how this thing turns out. :)