I'm off to the desert with sketchbook in hand.
GreenGreenGrass on Tumblr
I started a tumblr awhile ago. I've finally attached it to my blog and will do my best to actually post stuff in it. I wanted a simple spot where I could do quick posts of things that I find cool or inspiring. Afterall, I have other things to talk about than my cane, wheelchair, orthotics (left one named Charlie. Right one names Bucket) and the like.
Dorsal Interosseus
I started this illustration awhile ago. I just finished it. It is meant to be a wall piece, each one its own framed panel. Mix and match as you please.
With a progressive muscle condition there are major and minor milestones. Some that are noticeable to others and some that can only be experienced in the most intimate moments.
I can physically feel the depletion of my muscles. It can be deciphered tactilely. I can detect the growing loss through increased difficulties of both major and minor tasks, and I can even visually see the loss.
HIBM, although a wasting condition, it's not the type of condition where the body wastes away to mere skin and bones. At least not to the extreme like other conditions. So, to most I look perfectly healthy.
I generally experience the loss through weakness, but rarely do I visually notice it on my own body. I guess because I'm with myself 24/7 and don't stare ay my body all day (I know, how could I not? ;) There are little things I notice. For example, where there was once muscle in my thighs and triceps, it now has degraded to flappy, fatty, droopy skin. At least I notice, no one else may. My thighs have gotten heavier, fatter. I know, I know as one gets older this is supposed to naturally happen but there is nothing I can do to influence the situation, unlike "normal" 30 somethings that could hop on a bike and work it off.
There is less muscles to absorb the calories one intakes, so it turns to saggy skin. My triceps are like this. They hang lower and lower and if you feel them there is barely anything left.
A few months ago my friend was stretching me out. I've decided to take time to focus on my health. I rarely do. I rarely put myself or my pleasures first. I normally am too busy doing for others. It's a good thing but also a mistake. I just moved back to Los Angeles and as part of my new location I signed myself up for a four day a week therapy program. Besides that I do my best to either have someone stretch me out or do my own daily stretches by myself.
My friend Joey was stretching me out and he started rubbing my hands.
"You have no muscle between your thumb and index finger," he said.
"Huh, I had never noticed that," I said while gazing at my hands wondering why I had not noticed it.
The area casted big shadows and pretty much was hollow with only skin connecting my fingers. Like a web of skin. The muscles, Dorsal Interosseus whose primary function is to flex the metacarpophalangeal joint, occupies the space between the metacarpals must have decided to take a vacation. They left me. No Dear John letter in sight. Nothing. I was more surprised that I had not noticed it myself. That's when I started doing this drawing.
It's fuck'n amazing all that goes into every breath, every step, every movement, things that we will never take notice of or give a round of applause to. The body is in constant work mode even when we are at rest. There's no possible way to notice every second and really appreciate the amazingness that happens inside our own body.
I'm not here to preach about how we should appreciate everything. Yuck, who likes preachy people? Afterall, I still don't appreciate every second of my life. I would say I do take notice and appreciate way more than ever, but it gets away from us.
The friends I have that really take advantage of their bodies and talents, I admire and watch them from afar.
When I say we don't appreciate things when we have them, I don't just mean "appreciation" as in indulging every physical pleasure one can get their hands on. I mean appreciation by noticing those that don't have and extending ourselves to others. If we fully appreciate, we pass it along to others rather than going on about, "How lucky, how blessed I am". It's like pushing down the gas pedal as the light turns green, leaving those temporary thankful thoughts to the wind.
Even though I have really bad days, days that I don't think I'll be able to drag myself out of the continuous loss and would rather retreat for forever, I know I have to slap myself and not make it just about me. It's not just about me.
With that, I'm not here to hide the fact that it can be deeply saddening and there are days I feel like I will never quite get over the loss. I miss the physical movement and I know every other patient does, too.
Fear Is Normal
Fear is normal. It's not about ruling your emotions. It's about working through them.
"Ultimately we know
deeply
that the other side of fear is freedom"
TushPush.2000
This drawing is kinda old but just getting around to posting it. There seems to be much bathroom talk on this blog but don't worry, I will spare you all the gory details.
We never seem to recognize the mundane routines of our day to day, until it stares us in the face and commands utter and complete attention.
"Look at me, look at me!!"
There's been many times where I have found myself stuck on the toilet pleaing and crying to my body to, "Please get up, you can do this".
Throughout my days I absolutely dread the Porcelain God and that nagging urge to peepee. I would literally be in FEAR of this necessary routine.
As my progression has evolved the style in which I rise from the toilet has evolved over time.
I remember that day in Dr. Seidel's office in 2002 when he asked me, "Can you get up and down from a seated position?" as he filled out my chart with checked boxes and notes.
"Ummm, well yea, why wouldn't I be able to?" I thought, as I arrogantly demonstrated getting up and sitting down on his office chair without a blink, without assistance, without even holding onto the arm rests. I could do this all day" I thought as I reveled in the things I could do rather than what I couldn't. At this time the list of "can't" was much shorter.
Over time this has obviously become more apparent and my getting up and down has become slower to non-existent.
I've adopted the style of using my hands, arms and legs to push myself up from a chair. Sometimes I have to literally throw my body onto a table - that I use as leverage - with my face squished onto the surface while I slowly and ever so carefully push myself up while being forced to consciously utilize every muscle available.
Even thinking about using a public bathroom has become a nightmare. A year and a half ago I could use the public bathroom at my work. If I am familiar with a surrounding I can wiggle and create a magic routine until my body gets used to the situation. My left hand grabs the handicap bathroom rail, my right hand resting on the toilet seat pushing my body up at an angle, and as soon as I feel my hip lock, with every muscle I have left, I could push myself up slowly with an assistive and constant mutter, "Please don't fall, please don't fall."
Nowadays, going to a public bathroom alone is non-existent. However, my home is a place I can have a little more control over and outfit to my body's changes. When we move (which we do frequently) I have to take into account every new bathroom. The size, what I can grab on, what I can lean on, etc..
My last bathroom in San Francisco was pretty small, which was a good thing, because I relied on the wall and the door that was situated right next to the toilet to assist me up.
When I first moved into that place my bathroom style was to grab the doorknob with my left hand, put my right hand on the toilet, wedge my foot in between the door and the wall which allowed me to pull the door closed while lifting. The door was my leverage and my foot the barrier that I could use to push my against the door and use as an extra weight to push up on.
This was shortlived. The toilet was too low for me to get up by myself. Onto plan W.
I bought a plastic toilet rise that gained me an extra 6 inches of height. This was less height for my legs to push up from. This worked for a very short time. My wrists had gotten weaker, along with my legs, and I would find myself stuck on the toilet, alone - crying to myself and to my little Pippi in the most broken hearted sob.
I had alot of downtime to think in the bathroom. I created stories in that very quiet space imagining the bathroom tiles, the light peering through the window, the walls, as something more than what they were.
I soon put a wood stool in front of me, so I could lay my stomach on it and push my body onto it while lifting with my legs and arms. The stool acted as steady table, much like how I use my desk to assist me up. This became a tricky scenario and each time I hoped I wouldn't fall. I made it up each time by the skin of my teeth.
My latest bathroom style is this very wonderful electronic toilet lift. I didn't know it existed. I push a button and it propels me up towards the heavens in a very slow, yet breezy, adventure.
Weeeeee!
It's called the Neptune Toilet Lift but there are many different versions that do the same thing. I seriously fell in love with it when it arrived in its great big cardboard box. It was like Christmas. I now need a $2500 lift to help me go to the bathroom. People don't realize how expensive it is to be disabled. And I'm not disabled due to "laziness" or one "looking for handouts" but unless you're disabled or have a disease you don't know what it's like. Private healthcare is corrupt and they won't cover a lot of things and the things they do cover they battle you on. And durable medical guard, just like big pharma, has huge markups. Not all disabled people can work nor do they have family or a spouse to help so imagine what they go through.
I wanted to hold hands with my Neptune. I loved it that much. It became more than a piece of equipment, yet a doorway to some independence. I personified him as "tushpush.2000". Christmas in July, indeed. I thought I was pretty neat stuff rising and lowering in the air. Where there is a will, there is way. Don't ever give up.
I'm Going Going, Back Back, to SoCal SoCal
My younger brother and sister-in-law flew in from Michigan to help us move all our stuff back to Sunny Southern California. Road trip! So excited to go back.
Grandma = Cooking Up Love
I'm the one to the left with hands behind my head.
I know, this is supposed to be a blog about disability and my thoughts on it, and yet there's always all these food pictures on here. How does that relate to disability? I know, right?
Well, it does, because it has to do with the person living out the disability and the disability itself.
I'm in the middle of a move. Oh, yes, I didn't mention that. I'm moving back to LA in a few days.
As I have been packing I've come across those tucked away items that only come to light during a move. I have found alot of grandma pictures. She died in 2007. That was hard. My family was at her bedside 3 days before Christmas and I was boarding the plane trying to race home so I could say my goodbyes, too. I missed her passing by a few hours, I was still in the air.
Like many grandmas are, she was the family glue. During her funeral I got up and did a spontaneous speech about her. As I spoke I realized much of what I recalled was about food and my grandma's love for her "open door" policy - as she greeted guests with welcoming arms. She always had some kind of dessert or Entenmann's in the bread box for those "just in case" visitors. She grew up during a time when the family didn't stray too far and many of her siblings and family lived on the same street, the same corner or within a mile radius.
Holidays were always a big deal and her Thanksgiving dinners are something I really miss. She cooked everything. Every year she would make as many as nine different pies - all homemade down to the crust. As she got older and her body more frail, she would start prepping for those holiday meals weeks and sometimes months prior. Only being able to stand for shorter periods, she would make the squash, cranberries, etc., earlier and freeze it. This would cut down the number of dishes she'd have to do on the eve of the holiday.
I remember she would scoot around the kitchen in her walker and when I'm cooking, holding onto something I love but refuse to compromise quality, I experience what I saw in her.
My grandma didn't like to sacrifice a dish so she figured out ways to outsmart her body. I myself have adopted this tactic I sometimes cook big batches and freeze it. Or on holidays, like the Thanksgiving day dinner tradition that I inherited from her, I usually cook over an entire week, doing a little here and a little there. It cuts down the stress on my body as it progresses and can't handle as much.
This past thanksgiving I even made two Thanksgiving dinners. I had already promised to help my upstair neighbors/friend's thanksgiving. We had agreed to do it together since she is the sibling of one of my best friend's family from LA. Their parents are some of the most loving and amazing folks I've met. True big latino family with an inclusive-like vibe. Reminded me of my grandma's style I grew up with.
My suddenly-visiting-brother doesn't like to share his holidays and would only come up from SoCal if I made a separate Thanksgiving for him so I cooked two Thanksgiving dinners. Don't mind if I do.
As I spoke during my grandma's funeral I recalled our disabled mock races.
Towards the end of her life, before my move to California, quite often I drove her to her doctor appointments. I was using a cane, she was using a walker. Neither of us were in good condition to be helping each other but we managed. I used to joke that she was faster than I and she could out walk me any day. It's strange, at 26 years of age, to be walking behind your 80 year old grandma and realizing how similar you both look. I was getting slower and so was she. I was young, she was old.
I guess I would have to credit her with some of my characteristics.
Sometimes I think of her while I'm cooking. I have alot of time to think while cooking. Every step in the kitchen is a shuffle and what would take others a single second to get to the fridge, may take me 20 seconds, 20 shuffle steps.
When I was young I baked alot. While baking I would pretend like I was a cooking show host and mumble all the steps and what I was doing. At times a Julia Child accent would creep in.
Ok, I still do this today.
"You'll never know everything about anything, especially something you love." Julia Child
I can never explain how truly torturous it is, at times, to not be able to move like I remember, and at times this stains my mind. There are select friends that I sometimes tell this to as the emotion happens. The moments I'm really missing it, I'll share it, text it, but I'm not sure it could ever be really understood until one experiences it.
They'll listen, but then able to go about their life, hopping on their bikes, running, driving. The skies the limit for them but I'm still stuck with myself in the stillness of my body, the same before they came and I can feel my insides in deep want.
But, it's a temporary feeling. There is an innocence that accompanies it, accompanies difficult times. It strikes a chord and echoes throughout one's memories. It brings out one's innocence and vulnerability.
Most of us go throughout our life speaking of all the things we can do, are great at, famous for, but very few of us touch all the things we can't do, the weakest most vulnerable, most fear driven sections of ourselves. I guess in those most delicate moments I feel like a child again, an empty slate that doesn't know everything and can't get everything they want.
That is the greatest way to learn, to be told that you can't have everything.
Because of this, I have found that throughout the progression I pick up on new things to do. When I find myself no longer able to do one thing, I instinctually replace it with something else. I just want to express myself. I want to express what I can't with my body. I like cooking because there is never an end to the learning process. There is always something to improve upon and I like that challenge. If I'm not challenged, I find myself feeling very bored.
I'm not a foodie, by any means. I mean, sure I appreciate a good meal, but Jason laughs at me because I don't really eat what I cook. For me it's not about the food as much as it is about the process and the result that the process garners - like gathering people, laughs, intimacy, comradery.
Knowing that I am moving out of northern California, I've been receiving visitors who want to say goodbye and well, "Hello" at the same time. A few of these have been patients that traveled to see me.
This is Tara. I recently met her. I believe she emailed me a few months ago and was interested in meeting another HIBM patient.
She has had HIBM for the past 20+ years, but only correctly diagnosed with HIBM a year ago. This is not uncommon. Many patients go for years without a correct diagnosis including myself. All four of her siblings also have HIBM. There are many families with children who inherited this strange HIBM gift and every time I hear of it I can't imagine what it is like for the parents to have all their children express HIBM.
Besides her siblings I believe I was the first HIBM patient she met. I invited her over and made a little pasta lunch for her and her partner, Ron. When she arrived Jason went outside to see if they needed help walking down the simultaneously short but longer than ever walk. I was cooking in the kitchen looking out the window as she slowly proceeded under the lemon tree on a very beautiful afternoon.
She entered the doorway along with her partner at her side. I could tell she was tired from that long walk. She took a break in the doorway and we chatted from opposite ends of the room. I was not able to quickly walk to her and give her a midwestern hug like I would normally would do, and she was able to quickly walk to me.
One of the things with physical disability, it's hard to physically express oneself like you normally would. Sometimes I feel like I look reserved and stoic but I"m really not. HIBM does that to me in a sense.
I immediately liked them as they came off very warm. I like warm people. With people once you get passed all the unspoken, unecessary formalities, it is the warmth that really counts. As they rested in the door way we started setting the table with the food.
Ron said " I bet alot of things happen around this table."
Huh, I guess it has. I think that was one of the nicest compliments I have received.
I'm always glad to meet patients and for many I am one of the first patients they have spoken to. I remember how hard it was when I was going through the diagnosis process and being told I would never meet a patient in my life. I'm happy to meet others because of this reason. There is no reason one should go about this all alone.
This is Yoshi and his sweet wife Akane. They came over for dinner a few weeks ago as well. I made them a Korean dinner spread and we had a great time catching up. It had been awhile since I last saw them.
He was the very first Asian patient I met back in 2008. I was living in Los Angeles and he in San Francisco. He was contacted by patients with HIBM (In Japan it's called, DMRV) asking him to get into contact with me. He served as a translator while both I and Japan were in the connection process.
Upon receiving his email we drove to San Francisco to meet him and his wife back in 2008. He has had HIBM for 20+ years as well and still walking. His brother also has HIBM. He is 70 + years old.
In 2007-2008 I helped build and launch ARM's new branding image and it was the beginning for me in meeting a whole world that was tirelessly working on HIBM treatment. My hometown doctors told me no no one was or would ever being working on this rare condition.
I began working probono for ARM and that is how I met the Darvish brothers' the medical doctors who have HIBM and on so many levels has had a significant role in advancing research, interest and the treatment arena that we are slowly embarking on. He's also one of the only researchers that dedicate absolute full time to the research, unpaid at that, while other labs have other projects they work on besides HIBM.
But besides them, there are other researchers working on HIBM treatment around the world, all approaching it in slightly different ways. It's very exciting and very interesting to perceive these separate lives involved with the same subject - HIBM.
During the launch of the new ARM image, we organized a gala and I invited some of these research scientists to join. In my naivety it seemed better for everyone to work together but as I learned more about the process I realized unfortunately it doesn't always work that way. Money and name is far more important and everyone seems to hide their work.
One of the researchers I emailed and spoke with was Dr. Nishino; a young research scientist in Japan who is also working on HIBM (DMRV). I invited him and he politely declined, but forwarded a group of Japanese patients to me. He suggested that they contact me and form a group like we had in the United States.
And that is how I met Yoshi and ultimately traveled to Japan to meet this group back in 2008. Yoshi contacted me and cc'd Mayu, a designer and a HIBM (DMRV) patient. She was very new to this HIBM experience. We connected right away and I felt that she was lovely. She told me the action that was happening in Japan and I was very encouraged and proud to see so many patients that were combining and forming to make a difference in their own cause.
They had questions about fundraising and general questions about running an organization. Fundraising for health is not common in Japan. Their way is through the government and they were actively working towards being noticed by their government, collecting signatures and trying to make a difference for the general disabled community.
After 2 months of corresponding with Mayu through email I told her I was going to visit Japan to meet them all. I bought tickets and a few weeks later Jason and I were in Japan with a long list of daily meetings. I was impressed that the patient group (PADM) were active in their own destination and wanted to meet.
Many patients travel to meet the allocated scientists working on HIBM; Israel, Japan, Texas, California, but I travel to see patients. It's good for patients to know there are others going through this rarity and above all just because you are a patient, it doesn't mean you can't make a difference. In fact, I've always thought it was the patients who could make the most difference, not only in their own treatment, but perhaps for the greater whole including disability awareness.
It was a truly wonderful and busy visit. The patients were friendly and amazing and forged new friendships through the brief travel. I learned alot about their world and I tried to share mine as best as I could. I had a translator with me, and. In general there was definitely a language barrier, but even that was subjective. I think we understood each other on levels that most people don't understand even when they speak the same language. I'll never forget them and Japan and I'm so happy that in their end of the world they are doing their best. That is all one can do.
I believe all the hard efforts will soon come forward in treatment form, and in years to come the future HIBM'ers may never have to write about their debilitating bodies in blog form. Perhaps in a distant space they will be running and walking again.
Stealth Kam
In May I drew this right after the "Bike for Kam" project was completed. She is "Stealth Kam", inspired from my Bike for Kam guys' late-night biking adventures, ravine sleeping, road-kill and moonlit guidance.
Just to recap, Bike for Kam is a grassroots project I did with six of my friends. The goal was to expand awareness for my rare condition and raise funds.
I have been involved with ARM (Advancement of Research for Myopathies) since the day I met them and have worked on many projects and events with ARM as a volunteer, but this was the first fundraiser I've done entirely by myself for ARM.
ARM is a nonprofit organization that has been in motion for over ten years. Founded by two HIBM patients it has managed to raise awareness among the scientific and general community, provide grants to labs working on HIBM around the world and founded it's own research lab, HRG, in 2002 - where much of the biomaterials that were created there have been used in other labs and scientists. Their work has been important since HIBM is so rare that it garners little interest from these communities.
The bike project's goal was to do a project that had zero project spending so 100% of proceeds could go straight to HIBM medical research. With that, we raised over $22,000 online AND through an entirely new community that never or barely knew about HIBM or ARM at that.
It was a fun project and my hope is to expand this grassroots chapter to the community and to patients in hopes that they will do their own fundraiser within their community. As a small non profit, constantly challenged with resources and very very small volunteer base, I'm looking to help grow involvement. It's the only way we can reach the end.
You can't do anything as well as you could without a team, and many working together towards a common goal is the ultimate beauty. It's easy to be at odds, it's more difficult to come together.
I remember the day the guys left the Golden Gate Bridge heading onwards to PCH. I returned home to a mess of a house from a weekend of 6 guys staying in my place as they prepared to embark on 500 miles. All the cooking and prepping for this weekend - was such a fun weekend together. I looove a messy house after people have visited and left. I like to look around among the messiness and know that people had fun there, even if I'm tired afterwards. It means my house is being lived in, and what good is a house if it's not constantly open to others?
It's funny I call this one "Stealth" because I'm anything but quiet when I move.
Below are pictures of all the places Little Kam saw during her ride from San Francisco to Los Angeles. She's tattered, dirty and full of secrets and dreams that she collected as she rode. I made her to travel with my friends since I could not :).
Grab the moon and stars like balloons in the sky.
Doctors. What Do They Know?
Always be open to possibilities even when they may seem more challenging or at odds to popular thinking. This is not just for medical but for everything.
A couple weeks ago I visited a new physiatrist in hopes to get a referral for my wheelchair. I've been using a loaner one that the company kindly gave me until I get my own.
Back in March 2011 I wrote a post It'll be Alright sharing the arrival of the next major stage of progression, a wheelchair.
It was suggested that I go into a standing chair and use e-motion wheels, a power-assisted wheel mounted on the frame in place of manual wheels. A sensor inside the wheel registers the propelling movement and activates the electrical motors which greatly aids my weakening arms.
The standing frame: Since, I am in a seated position more often it's important to increase circulation as much as possible. The "don't use it, lose it" phrase is one I use alot to explain the situation. While, I myself can't stop the progression there are things one can do to maintain a little though the disease eventually wins. While these efforts and results may seem like microscopic measurements to some, it is the world to an HIBM patient. Every second matters and if I can hang onto any physical ability just that much longer then it's worth the effort.
For anyone sitting all day is terrible, so for a patient whose body is sort of dying it's even worse. As soon as you sit activity in the leg muscles shuts off, calorie burning drops, enzymes that break down fat drop, insulin effectiveness drops and these are just a few.
For a patient who has limited muscle to work with it's important to keep moving as much as possible. One needs to find a personal balance of walking, standing and sitting to safely maintain what they have. As HIBM has progressed I noticed the time span in between the need to move my leg, for example, before it cramps, bloats, feels dead and falling asleep has decreased. For example, 3 years ago, I may have started feeling these symptoms after 2 hours of not moving my leg. Today, my legs do this every 10 minutes.
I still don't use a wheelchair in the house. It's my way of telling HIBM, "Screw you!" I shuffle and leave my wheelchair in the car to avoid temptation of retreating to the easier path. But, outside of the house or at work I need to employ my chair almost all the time. It's just safer.
With the standing chair I can elevate in the chair by pulling the frame to a standing position. This act alone give my limbs a break.
These little things seem small but it helps to break up the monotony of sitting and relieves the body. Who knows, these types of tricks could shave off a year and allow me to maintain my mobility for that much longer.
The e-motion wheels: My arms, shoulders, fingers and hands have gotten weaker. With HIBM patients upper extremity weakness is very obvious. The fingers and hands end up not moving and have a frozen look to them and the arms cannot raise. This all happens slowly and for every patient the journey, or which limb experiences weakness first, can be very different.
My weakness began in lower extremities; hips, legs, feet, toes, etc., and now it has moved upwards to my neck, arms, shoulders, wrists, fingers and hands. This weakness is not quite as visually recognizeable compared to others, though I absolutely feel it. It's obvious when I can't open a bottle, lift a dish, grab small objects, etc., but my fingers haven't visually "froze" yet.
With that, though I am ready for a wheelchair I am not ready for a powered chair. I could go directly to a powered wheelchair but I'm avoiding it. Just like 7 years ago when I avoided a wheelchair after my doctor tried to put me in one.
Though, I can propel a manual chair slightly on flat ground, for the most part I don't have the shoulder strength to propel one alone. But, with these sensor assisted wheels it helps me to maintain independence by completing my rotations for me. I push and it pushes the complete cycle for me making it easy for me to tackle any evil terrain, including carpet.
Yes, carpet is evil. I've often day dreamed about carpet as it innocently lays there while I try to trek across it. In my mind it suddenly billows up as this evil carpet monster looming over me as it mocks me.
So, there I gave some background of these contraptions that will significantly help me gain independence. I look for these tactics of holding onto what I can because I want to be able to function and not depend on others. At least for another day.
I walked into the physiatrist's office hoping he would be on board. I haven't really gone to a doctor in quite some time because really there isn't much they can do for me when it concerns HIBM. Walking, or excuse me, rolling into his office brought back some eery memories but I did my best to ignore them.
I talked to the doctor, and like all doctors I've ever met, he never heard of my condition nor could he comprehend. I could tell he's the doctor that is used to a very typical protocol.
A meets B, so I give them C. Very formulaic type of treatment. Only problem is people are not formulas.
He listened to my spiel explaining the nuances and needs and afterwards he was condescending and pandering looming his doctor badge over me.
Now, we all know it is a bear dealing with insurance companies. The trick is you need a good doctor that is willing to fight for you. There are two different types of people, those who stick with status quo "it's never been done" attitude, and those who like to break the mold and give it a try anyways. This guy was status quo.
I was already aware that a doctor would have to send these DME (durable medical equipment) requests in several times because they will almost definitely be turned down the first time by private insurance, if not the second. But, he didn't even want to try. He wanted me to go into a powered chair. He told me that me "sort of" propelling my own chair would not do anything for me and not save anything. I disagreed, my way required utilizing more energy than twitching a little stick on a powered chair.
As he spoke it conjured up past memories, memories that I'm not sure I've really dealt with. The journey of finding a diagnosis.
I should probably one day document it here. I know I am not an isolated case. So many people go through this and obviously not just for my condition.
This post is not intended to pick on doctors. I am speaking of my specific journey. I've come across many doctors and prior to my move to California they were mostly all bad with terrible stories attached to them.
For example, my physiatrist from seven years ago telling me that I needed to go into a wheelchair right away and quit college. HIBM hadn't even taken over my body fully, I was functioning and yet he read the prognosis of my alleged, at the time, diagnosis and requested me to go into a chair. It was a good thing I refused to do anything of the like. I left his care immediately.
Another past doctor stands out in my head very clearly. A high powered, well-known leading doctor at Detroit Medical Center of Michigan. He was very clean cut, white jacket and always at golf outings for "business" affairs. He would treat me like a little girl, something I severely hated. I kind of have that innocent, young kid look and I notice people automatically assume my capability levels upon meeting me. But, I'm anything but that impression. I was on a mission with no time to mess around.
They did a muscle biopsy on my leg and in the same area that a previous hospital had done it at that.
I said, "Hmmm, I'm no doctor but would it be better to do it in a different area, or even on a limb that wasn't as progressed, like my arms?"
They did it on my leg anyways because what do know.
Typically a biopsy result should be in your hands in a couple weeks. Detroit Medical Center took seven months. Seven months of me constantly going into his office only to hear they didn't have an answer yet as he ushered me out the door, patted my head and handed me a lollipop. At the time I was in design college, a heavy heavy major in automotive design. I barely had time to sleep let alone go on these medical ventures, but he didn't mind wasting my time.
My last visit consisted of me in his office hoping that he wouldn't be a douche again.
The last visit he came in, "I'm sorry, we will have to schedule another time, I still don't have the results."
I started to cry. Part, because I was so sleep deprived from school and part, because this was a ridiculous situation.
He grabbed my arm and said, "Awwww, is it because you're parents are getting a divorce?"
I said, "No, it's because you're an asshole. First, why not tell me you don't have it instead of having me trek in here for an appointment. Do you know how hard it is for me to physically get here? Second, it's been seven months for something that should have taken 2 weeks".
I left his office ready to move onto another doctor. They later called me with a concluded "diagnosis". I found out they lost the sample and were hiding the fact. Even later, I found out, from the Mayo Clinic, that the sample was so deteriorated that Detroit Medical Center could not have reached an accurate pathology diagnosis, which means they sort of made up a diagnosis. Mayo Clinic also was confused why they would do the biopsy on a deteriorated limb.
Yes, I thought the same.
The stories could go on and for most all of them I was alone in my search. I never had time to accept a diagnosis or cope with it because I was too busy on a search. When a doctor didn't tell me what I wanted to hear or I could tell they were full of it, I left and moved on. As I got good and experienced I became good at identifying bull shit and would get out as soon as possible.
So, a few weeks ago as I sat in this San Francisco Bay office listening to his condescending manner I felt like I was reliving it again, except this time I was more educated about what I had. I tried to hold back tears and in my mind debated on whether or not I should let him finish his "care" or just walk out.
I tuned out just waiting for him to finish so I could go off and find someone that would listen and help. He wanted to put me into a powered chair and I was crying inside.
"Didn't you just hear what I said?" I thought. "It's important not to give in too early. Why would you want to debilitate me quicker than I need to. In the long run I'm doing more disservice to the system because I'll just be another body for the state to take care of. Don't you get it? I'm trying to avoid this it's actually saving healthcare money." I thought.
As he finished, I nodded and left as quickly as I came. He didn't even want to try. It brought back so many memories, the lonely times in the cold doctor offices, the time I went to Mayo Clinic on a 4 day diagnosis excursion alone and at night would cry alone in my hotel room while Golden Girls played in the background. It sometimes comes rushing back and when I can't control the inner tears, it's all obvious that those times affected me more than I realized.
The difference this time was someone was with me. Jason.
That day I had another doctor appointment on the other side of the clinic and as we waited I bursted out crying. Leaning forward in my silly wheelchair I put my face into my hands and cried. "I don't want to go into a powered chair".
I hate people who love the word "can't" and I've found alot of people do.
Doctors, what do they know? They're groomed, knowledgeable in their craft, but it doesn't mean they know everything. You can't measure heart. You're instincts are good, follow them and don't take ONE answer as THE answer. All the doctors that told me I was too rare for anyone to ever care about developing treatment for or that I would never meet a patient like myself were all terribly wrong.
Keep pushing in an educated and balanced manner. Know your stuff and always be open to possibilities even when they may seem more challenging or at odds to what others think. This is not just for medical but for everything.
Anything
I'd give anything to be able to run. Anything.
Route 1
Doing some touring and exploring the California coast between San Francisco and LA, and meeting really interesting characters along the way.
I'm bleeding from cuts and bruises from getting on top of this rock, but the view was worth it. I look like I am sitting so effortlessly, but getting me up here, and even just sitting without falling, was a huge ordeal.
Passerbys were confused and then they would smile once they saw what was up. Perhaps they thought I was drunk, when really it was my silly legs and the like that don't cooperate. 104 degrees and loving it, my body feels so much better in the heat.
The coast is inspiring and I haven't felt inspired in awhile so it comes at a great time.
Happy 4th! I hope you're doing something crazy, wild or exploratory, and most of all feeling a little inspired today. I can't go anywhere without it.
A Friend of Mine
3am seems to be a friend of mine. It knows all my secrets.
Kimchi!
Sunday seems to be my, "try a new dish" night. This past Sunday I tried making homemade kimchi chigae for the first time. I even made my own banchan (side dish); beansprout (kongnamul muchim) and sesame leaf kimchi (Kkaennip kimchi).
Kimchi is a traditional fermented Korean dish made from vegetables like, cabbage, bean sprouts, daikon with varied seasonings like garlic, salt, red pepper flakes. Kimchi, in cabbage form, is the ultimate staple in Korean cuisine and history and almost 4,000 years old. Due to its affordability kimchi was cured in small quantities, except the winter months where large quantities were jarred, stored in the ground and could be eaten for 3-4 months - enough to get through the harsh winters. As kimchi rests, like all fermented and pickled foods and people, it changes.
Throughout generations of the nation kimchi was a counterpart to the traditional korean meal of rice and soup and served daily with every meal. Kimchi is served as a side dish, the star of many chigaes, a stew like soup, or other main dishes. Kimchi is spicy, smelly, rancid, but oh, so wonderful tasting. It tastes like home to me, which is odd since I was not raised in Korean culture and probably ate my first kimchi (except for in the orphanage) when I was 15 years old.
Kimchi Chigae is probably one of my most favorites of chigaes, so naturally I wanted to see if I could make it. Ingredients include kimchi, red pepper paste and flakes, scallions, rice cake, tofu, onion, garlic, pork belly.
Korean cusine is always accompanied by side dishes (banchan) and eaters can expect to see anywhere from 2 "free" side dishes to 30. Yes, I had over 30 wonderful side dishes accompany this one meal in Wonju, when I visited Korea for the first time back in 2002. I was amazed by how much food lined the table while feeling a little guilty that one person could be given so much food when so many have none.
Well, I didn't make 30 side dishes on Sunday, but I did make a couple of my own for the first time. It was fun. These days cooking feels like the only creative thing I get to do. I need to get myself back to it.
A friend recently told me that I shouldn't post things like my cooking or all the ambitious activities like skydiving, because it makes me look NOT disabled. After all "normal" people don't even do these things.
"Well, what does a disabled person look like?" I asked, "because I don't want to look like that, I just want to be me."
I can only be me and while it looks like cooking, or the like, is effortless it's quite the contrary. I have very high standards and refuse to degrade them even if it means a bigger challenge. It takes so much effort and I'm shuffling milimeters to get to where I need to inside my kitchen. It may end with a pretty finished picture of the results, but it has nothing to with the results and rather all about the journey within that one, two, three + hour cooking projects.
Pecha Kuchu. Gesundheit!
A few weeks ago I was invited to a Pecha Kuchu Presentation.
PechaKucha 20x20, Japanese term for, "chit chat", is a simple presentation format where you show 20 images, each for 20 seconds. The images forward automatically and you talk along to the images.
This helps those who talk to much ;), keeping the presentation conscise and forward moving.
Pecha Kucha Night was devised in Tokyo in 2003 as an event for young designers to meet, network, and show their work in public. It has turned into a massive celebration, with events happening in hundreds of cities around the world with San Francisco being the top Pecha Kucha city in the world outside Tokyo where a couple hundred spectators are usually expected to congregate.
The theme was "Grassroots". Huh, I think I know something about that. I decided to use my illustrations for all 20 of my slides. I was running out of time, so unfortunately I didn't get to do many of the drawings I had planned to show for it, but no one knows that besides us ;). With my bike project just closing, and many other things that were waiting for my attention, I was working for a few days drawing till late trying to figure out what I was going to say.
My slides pretty much consisted of me storytelling how I found out about my condition, what HIBM is, how it could be treated and the Bike for Kam project I did with my friends. I absolutely didn't feel prepared when I went up.
The presentation was on a Monday and so I was working on it over the weekend. I remember towards the end of putting together my presentation it was becoming a little emotionally draining. I had dealt with the bike project, a month + of doing nothing but talking about HIBM, and now I had to do a presentation consisting of very telling and personal drawings. I don't mind talking about it, nor do I want people to hesitate to ask me about it, but it can get heavy at times.
As I draw, it can be a very personal moment. I'm drawing myself and drawing out my feelings as I'm figuring them out. There have been times that I cry while I draw and I only then realize how much I share about myself. Parts of me that are still a surprise to me even after all these years. We don't predict that disability will be a topic that we will talk about later in life; a topic that seems so foreign to you in one moment and then becomes the most intimate of topics in the next.
I suppose the presentation went well. I was praised for my illustrations and was surprised, since I don't consider myself a "professional". I was told I "elevated the night". That was nice. A nice compliment. When I started drawing myself I honestly didn't expect people would like my illustrations as much as they have.
I have yet to draw other people in my illustrations, because the truth is I struggle with that still. It doesn't come easy to me. I can't whip out characters quickly. I kind of started illustrating on my own without "technical" training, so each drawing is new to me. I've been trying to work on a thank you illustration for my friends who did the bike project, but having a hard time drawing representations of them. I want to draw each of them as boys, print it, frame it and give it to them as a gift, but I only seem to be able to draw myself and my experiences.
When I'm drawing myself it doesn't really feel like I'm drawing. It comes easier. It's not "art" to me, I guess. I'm not trying to attach meaning to a drawing, the meaning is behind and during the drawing. It is just what it is without arbitrary depth. It just is and that's it. No need for further poetic explanation.
I feel like I'm nine years old sitting at the table with my sneakers unable to touch the ground, so they sway back and forth to the beat of my pencil and I'm just doodling without thinking. As soon as I start thinking I ruin it.
Later, I looked at photos from the presentation and saw myself in front of a crowd in a wheelchair. It was odd. This would be my very first public presentation in a wheelchair. Not that it matters, it's just new. I'm constantly changing and everyone gets to see it whether I want them to or not.
I ended my speech with, "Sometimes you get to choose your causes, and sometimes they choose you and it's all in how you respond."
I'll try and upload the video of me presenting after they upload it to their website.
Food for Thought
I have some dished that I need to upload that precedes these, but thought I should post something.
Here are a couple cooking projects I gave myself. I don't normally have time to cook during the week and so I tend to have an itch to make myself try a new dish on the weekend. Some people eat to clear their thoughts, I need to cook to clear them.
Couple weekends ago I made Jason some Anaheim Chili, lime dredged shrimp tacos w/ cilantro slaw and fresh salsa on toasty corn tortilla. Kinda made up my own recipe for this one and it turned out awesome. I really love shrimp tacos. You don't feel so guilty afterwards. ;)
On a whim this past Sunday I decided to try making pierogies from scratch. I love Pierogies, but I'm not sure what made me take on the task.
I always think, "Oh, this will be easy" but the projects always end up more nvolved than intended. It actually wasn't difficult to make, just time consuming and alot of steps for a Sunday night. But, nevertheless, I was on a mission.
After grabbing some ingredients I got home and realized we forgot a couple things, so Jason went to the store to pick them up. While he was gone I started peeling the potatos and it was difficult. My fingers felt so weak and each potato felt like a brick. Peeling 3 potatos took me about 5 minutes when it should only take 30 seconds.
Well, this is the usual. Everything I do takes twice as long and then pair that up with high standards and you have quite a project. I guess that is why it is meaningful, because so much is required in everything I do. Nothing is easy, but I'm not prepared to compromise standards.
I try not to get upset but it is so glaringly obvious that my arms and hands are so much more weaker than a year ago. My legs had problems, but I could withstand them and crank out a meal for ten as long as it was accompanied by a good amount of stamina. But, now my arms and fingers are getting so weak and it sometimes breaks my heart to think of the possbility of one day no longer being able to cook.
This probably won't happen for awhile, but it just requires that much more strength and stamina from me to carry on the task. I guess, I just can't let it go. I love it too much like alot of things that leave me. The love of certain things came about from losing other abilities, like running and being active, so I improvised and gave my attention to things I could do, like cooking and drawing. But now those things are slowly being taken from me.
I have alot on my mind lately and when that happens I tend to want to put my mind somewhere else, like cooking for example. Cooking is one of my quiet places, it's comforting. My mind is at ease and purely in intution mode. I can't sit still even though that's all my body wants to do, so that is why I gve myself these little projects to keep my mind going and challenged. Plus, it's fun!
Below is my Golubtsis (stuffed cabbage) and Piergoies from scratch. I've never made Pierogies, but they turned out really good. Inside the Piergoies is potato, carmelized minced onion, leeks and garlic all mixed with 3 cheeses, ricotta, sharp cheddar and parmesan cheese. It was a fun project, but I was cursing myself by the end of it ;).
I Scream Ice Cream
It's an ice cream Häagen-Dazs, Ben & Jerry's, Baskin-Robbins, Freaky Ice, Good Humor, Dairy Queen, Edy's, Mother Dairy, Nestle, Stroh's, Schwan's, Pink Berry, Blue Bunny, NOT Healthy Choice ice cream kinda day. What a crappy day.
I. HATE. You. HIBM.
With everything I am, I hate you.
Tomorrow will be better, time to eat a carton of ice cream.
Ominously Lovely
Driving through amazingness mixed in with heavy dense storm clouds. Lovely.
Before I Was Kam
This one is of me, before I was "Kam".
Since, I went back to Korea in 2010 to visit my orphanage and foster mother, I've been wanting to illustrate some of the moments I experienced while there, but life catches up to you and nine months later I'm only starting to think about that time again.
Tracing steps I never knew was truly a wonderful and fantastically surreal experience, and something I don't take for granted. I was an orphan until about 4 years of age, but never realized how long 4 years is to a child until I stepped back in time. I never realized how much to-and-fro I did in the first year of my life. I had no stability, no home, no one who called me their own. I was just another child in the crowd who shared the same quandary with those around them.
The first 4 years of a child's life are supposed to be crucial and the most important. While there I remembered trying to get a sense of what I may have been like years ago in my birth town.
Through past paperwork that listed my traits and now visual verification, I tried to mentally piece together my life in Korea. I would imaginatively superimpose my 4 year old body running around in the streets of my orphanage and for some reason this memory always includes me running around with a ball. While growing up I never really thought much of Korea so I didn't spend my life hating that I was adopted and accepted my adoptive family as my actual family.
But, surely there were always remnants of my past memories seeping beneath my skin. I'm sure. Memories that I could only appreciate as an adult.
I have a ton of footage from this trip (Korea and Thailand) and plan to compile it in a little video montage. I hope to do this soon. After doing this piece I realized I'd like to later do a series of little orphan Kam. In this illustration the Korean hangul (alphabet) writing is my korean name, Young Eun Kim.
It was an amazing and unforgettable experience and I have to share it here soon. I keep saying "soon". I think I should rename my blog SOON.
Dead Wait
I keep saying I am going to update here, but I'm afraid I haven't been very good about it lately.
There is definitely plenty happening and I feel busier than ever with endeavors and projects flying around summoning me. I think Jason thinks I'm crazy with the level of work or ambitions I give myself. I can't help it. My body limits me, but most of the time I have to work just that much harder to maintain the level or standard that I did before. Still, it can get tiring, for sure, but I just don't know any other way.
I feel like I'm running a never ending marathon with no water breaks, but at the same time I'm not prepared to sit around and do nothing - waiting, being sad or hoping for it to get better.
Not that I don't have my sad days. I most definitely do. I'm just not built that way, I guess. I don't believe in that. Hope can only meet you halfway. It's a symbiotic relationship. You can't hope to become more successful if you don't work hard. You can't hope that the world had better people in it, if you yourself don't care about others. Or the cliche saying - who said it? "you can't hope to win the lottery, if you've never bought a ticket". And, you can't hope that your friend will get better, if you've never helped them.
Just waiting around can cause "death".
However tiring, I think I would rather reach the end of my life really tired from living out too many ambitions or for others, than well rested - living leisurely and just for myself.
It's been a time of alot of changes in many aspects, professionally and personally. Some that requires picking a new direction where new opportunities and new experiences await, and other changes that I don't really get to pick, but forced to adapt to.
Crossroads, if you will. I have a bunch of updates waiting to be posted. I wish I had more time to post here.
Until then, I've gotten back to illustrating lately and should probably upload them here. This one is my most recent. I woke up this morning and immediately my arms began to talk to me. They felt heavy. Heavier than yesterday.
I don't like feeling my arms weaken. It's an experience I'm not sure I could describe. Everything is in seemingly slow motion. This is no fun ride and I'm doing my best to tell myself everything will be ok.
Though, the feeling is a similar experience to my legs, it's different in its own right. My arms feel heavy - like dead weights hanging and every so often another sand bag gets added while it awaits my body's breaking point. I dislike this feeling immensely but I feel like I have no choice, even though, at times, I still dissect potential escape plan routes to see if somewhere a choice is hidden and I just missed it.
Instead, it tells me, "You have no say in this...just wait". I sense the convergence where my arms meet my shoulders and it feels considerable.
So, this is how I could visually communicate the feeling - bags of sand weighing down what already feels like a wooden body.
Morning Pastures
A little early morning inspiration before a day of drawing - a beautiful morning in the rolling pastures. Started out in the woods, then through farmland, grazing pastures and emptied out into the rolling hills flanking the shore.
There is nothing I like better than exploring, it temporarily satisfies my unremitting need for stimuli.
I've been cranking out illustrations for a Pecha Kuchu presentation I've been invited to give this Monday in downtown San Fran. The rules: 20 slides, 20 seconds each. I've decided that each of my slides will be hand drawings. I'll post them and be back here soon. Have a wonderful weekend :).
http://pecha-kucha.org/night/san-francisco/44