This is my work area. I've actually never had a Christmas tree in my own home, so it was kind of nice. Ambience is always good ;).
The picture to the far right is Pippi waiting for dad to come home. Every day Pippi waits near the door much earlier than dad actually gets home. She just wants to be sure she is prepared. I am currently packing and getting ready for my trip back to Michigan. Let's see how I do in the cold.
Merry Christmas and Happy New Year!!
My dad has made many recent comments on how he wished he had a picture of when we used to go ice fishing. Out of 3 boys, it was I who was his (ice) fishing partner throughout the years. We would go alot, just he and I. I drew this, 'Gone Fishing' for him as part of a Christmas gift, and then framed it.
I loved it out on the ice. Afterwards we would go to this little restaurant for hot chocolate. Blue building with a big white captains wheel hanging on the front. My hot chocolate was served in brown mugs and there were always many fisherman bragging about their catch of the day.
Everyone else had fancy shanties, but we stuck with our buckets that dad had made for us: duct tape, rope and some padding. Besides watching me play soccer for 10 + years, (ice) fishing was probably the only thing we really shared. My dad says that some of the old guys sometimes ask about me. They remember me because I caught the most fish ;)
Every year it gets a little harder and every year I feel like my parents and friends see the fast forward version of my year.
They see my yearly progression in one visit at the end of the year. It must be hard for them to see. My parents try not to cry, but out of the corner of my eye I can see them watching me which then leads to tears.
It's not that they think I am less because I have a disability, but it's hard for any parent to see their child struggle. I have many relationships that I have made in different stages of my life. I have friends that have only known me with HIBM, I have friends who only knew me when I played soccer, but my parents have known me since the beginning. They seen me running as a little child and into teens and into young adult, and now they see me slowly deteriorating.
I try to see it from their perspective and how they themselves deal with it. I think they have experienced some growth in realizing the truth of it, accepting it and then learning on how to communicate their feelings. Many patients tell me that their family experience denial and they don't want to face it. It takes time. It takes time just to realize it is not some colossal joke.
Ten years ago my parents thought I had one leg longer than the other, thus the reason for the limp. No one could expect what was bubbling underneath. No one could know and for 6 years not even I did. I love my dad and I know how much it hurts him. He's opened up about it and cries in front of me. Sometimes we will be on the phone and he cries. It hurts to see me go through this as deeply as I could imagine any parent would feel.
A common statement I hear from both parents is, "but, you are so young..."
My dad sometimes apologizes that they were not more pro-active and is full of regret...about many things...but like I tell him it is not about what you did or didn't do in the past, it is about today.
This journey is not just difficult for me, but all those around me that it touches. Some do nothing, some want to, but don't know how to and some keep a shield over it to lessen the grief. However one handles things as long as there is a journey toward the truth of it then there is progress. Everyone has a different speed and it about understanding them and not just myself.
Not much to say about this one. It feels like Autumn both outside and on the inside.
Autumn is definitely one of my favorite seasons, but seasons always bring challenges along with it. I am slow like a turtle. When lying on my back, I too cannot roll over by myself.
The laying-on-back position is by far the most challenging and almost impossible. It is challenging and gets harder as the seasons pass. Laying on my back feels strange, because I have no movement. My body feels quiet and still. I feel motionless. I feel like I'm attached to some dead foreign body. I don't know this body.
Most of the time I'm used to it, but on those off and hard days, when I don't care to be 'used to it', it makes me cry, and I think, "How did I get here? How did I get to this place? How did this happen?"
I like to conversate with my ailing limbs, but they never seem to listen. Perhaps I need to buy them hearing aids.
At times I fight it and do my best to do every creative thing in the book to get my myself out of the laying-on-back position and to a more advantageous position, like on my side for this is my ideal position, because at least I can move, roll on my stomach and try and push myself up.
I sway. I rock. I muster any energy I can. My legs don't move and neither does my torso. Unlike a turtle who has that handy rounded shell to help with his efforts, my back is flat and lends no support to my attempted rocking motion, and so I just lay there wondering, "How did I get here?"
Today I had difficulty opening a straw. The past year I've been slowly experiencing this, but today more so. I'm not sure if it is the cold weather or just another move toward the inevitable. It serves as another reminder that more is to come. My legs have been the primary body part HIBM likes to eat up, but it is slowly migrating to areas above my torso.
I don't want to deal with what I have seen happen to my legs, happen to my arms, hands and fingers, too. Now, HIBM is just being greedy...
So, I've been able to get up from the toilet like I normally do (described in the previous post The Princess and the Pee) with the barstool not too far from my reach for those 'just in case' situations. And I don't mean for an afternoon drink or do I? ;)
Have to celebrate the little things...
I love this animation, 'Thought of You', by Ryan Woodward. These are ways design and art can influence, whether it is small or grand scale. Some where it matters to someone.
Animation is a very respectable form of art. Most people watch them, but probably never see or understand the amount of work that goes into one.
Animation is the rapid display of sequence of images of 2D or 3D artwork in order to create an illusion of movement. I have never done animation, but can certainly appreciate the vision and the amount of work that goes into the art. It's creative, but extremely laborious. You really have to love it to do it. An estimated time frame for an animation is one month's work for every minute.
Ryan said he worked 20 hours per week for 3 months and that does not include the time for the dance choreography. In "Thought of You' it is a dance and the forms are constantly changing which I would think makes it harder to keep up with your shapes when drawing them out. But, 'Thought of You' looks very fluid and beautiful and a story is told with just a few lines. I like design that is seemingly simple...it's like nature. Nature's design is seemingly simple, yet complex underneath. Simple design cuts out all the unnecessary, featuring and staying true to its simplicity. It's not easy to design simply. We inherently want to overly complicate.
'Thought of You' is 3 min 3 sec= 180 sec X 24 drawings per second= 4, 440 drawings
I've watched this video alot! It struck me right away, but probably not the way the artist originally intended. It is a love story/loss between a couple. But, for me I related it to my body. As my body progresses I am obsessed with movement and I closely observe others and they way they move.
Everyone has a different sound and tempo and I find myself mentally assigning one to everyone I meet. This is how I remember them. I've documented their moves and filed them in my mind. I take joy in watching them move with a trailing sadness at times. As I watched this animation I found myself studying every still image to see the artist's transitions.
Since I am not an animator, I am curious of the art form. All design/art has a similar lineage and I like to mentally spot the connecting factors. One is communication. Communication ties everything together. As I have been increasingly interested in illustration, for the purposes of sharing a perspective and story, animation has been peaking my interesting as well. Illustration is a tool for communication. I feel I am able to share something about me through it and animation, I feel, would be great for me to communicate movement...the way I perceive movement...the way I see myself move...the way I see how others move...Movement is beautiful.
In your body, in your mind, socially, historically, movement is continuous even in the moments we feel like we are motionless. However, good animation is highly skilled and you have to respect it. I'd love to be able to do characters of myself and show how I move...wobbly and all.
When I watched this video my "Thought of You" is my body and the increasing loss of it. I interpreted it differently than the animation's love affair between the couple. My version is the love between myself and my personal movement.
For the past week I have been having a hard time, probably a slight depression. I hesitated to share it here, because...well, I guess I don't want people who know me to read it and be worried. Or a potential employer to stumble on my blog and think I'm too depressing to hire but, I should be honest because of most of us have these moments of depression, doubts, instability, moments of "immobility" -- with or without a physical disability.
It would be a disservice to pretend I don't experience depression and sadness. How can anyone benefit from someone saying they are happy all the time when they are not. This doesn't open the gates for others to see 'there are others like me'. I know I have all the right in the world to feel sad...this is not an easy journey for me and for anyone else experiencing the like. So, yes to me this video is about the relationship with my body and even the song's lyrics contributed.
Over the past couple weeks many times I just wanna stay in bed and never come out. Put the covers over my head and not face it.
Woke up...With an aching in my head...I lay motionless in bed...I thought of you and where you'd gone...Everything that I said I'd do...And take the time for you...The whole world is moving and I'm standing still.
I'm doing fine, though...that's the point. There are good days and there are bad and you just have to get through the bad...that's it.
When I was driving today I had two thoughts. 1. Creativity and humor saves me 2. I am always thinking of ways I can explain HIBM and how it feels. Not for pity or for the receiver to pat their own lives on the back with exclamations of how lucky they are not to experience these struggles.
It's not for that purpose. I want to share what it is like, so it can be understood. Even though it's difficult and sucky, it is still a (valuable) perspective, and for growth's sake it helps us to absorb as many perspectives as we can.
When I was able bodied, it wasn't possible for me to really understand what it is like to have a disability, and it was never shared with me. But, now that I experience it and face the challenges the perspective is huge and unruly.
So, how I would explain slowly progressing condition that debilitates you? I know Point A (able to walk, run, bike ride...etc) and I know the potential Point B. (can't walk, can't run, can't bike ride, can't hold a fork, complete debilitation).
I was thinking about sudden change...a car accident or any accident that turns you into a paraplegic or quadriplegic in just a few seconds. A few seconds for the accident and a few seconds for someone to tell you your diagnosis and the self realization that your life is forever changed.
These few seconds are dragged out over years for me. It happens in extreme slow motion. It's picking at me. A picking wound. It's constant. This comparison is not for the purpose of saying one is worse than the other, because both suck, yet to explain how it feels.
It is so slow and drags on for years. Even though I have had HIBM for 10 years, it still feels like an enigma to me. I sometimes sit and think "Wow, how did I get here? How did this happen?"
It's still surprising and even though I know beginning to experience Point B and am already at a very progressed state, I still can't imagine that in 5-10 years I may not have function of my arms, hands and fingers. The realization is always in motion. It feels slow and fast at the same time.
I don't mean to seem like I only live in my past, but let's face it, a loss that is ongoing conjures up memories. Sometimes fleeting and sometimes they stick around for 2 weeks straight. With that, I am feeling better today. Busy working, scheming and dreaming.
I hope you have giant dreams, too. They are worth the time.
I wrote this post a couple weeks ago, but just did an illustration for it today. It is cute and light-hearted, but honestly, I feel anything but. It's been rough the last couple weeks. Feeling highly unmotivated and..well...sad in general. One day I should break out all the illustrations I want to do that have a more serious tone, but this 'princess and the pea' was next on the list.
November 23, 2010.
The last week and a half I've had increased difficulty getting up from my toilet at home. At the beginning of this year I had to get one of those raised (elevated) toilet seats, so I can get up by myself when I am home alone.
Nowadays, if I am anywhere but home, I need help to get up from any seated position, especially the toilet. Toilets are too low for me. In my 3.5 years in California I have lived in 3 apartments and in each one of them I always have to figure out new and inventive ways to get up by myself, and my current home is no exception.
This combined with increased weakness forced me to get a 'booster' seat this year. Getting the raised toilet seat was like pure freedom. At the beginning of this year it was already getting hard for me to get up and down and since I am working from home it was important for me to be able to do this on my own.
But, the last couple weeks it has been harder to get up even with my booster seat. Sometimes I need to keep trying and this trying can last for 10-20 min. Today was the worst, though. I sat there and tried to get up for nearly 40 min. My bathroom is fairly small and with any new bathroom, or new environment, I need to have creative planning at hand.
How I usually get up is: The toilet is right next to the door. I grab onto the door knob with my left hand and position my left foot in front of the door. This way I have leverage and can balance the opposing strengths. I pull myself up with my left hand, push against the door with my left foot and simultaneously I push up with my right hand that is resting on the 'booster' seat. Due to the length of my arm I can only push so high, so I rely on positioning my hips, so that my leg can rest in the hip socket and I can push the rest with my leg.
But, today this wasn't even working. I keep trying, but just plopped back down. Eventually I had to stop and rest so that my legs wouldn't tire or damage to the point where it's impossible for me to use them. After each failed attempt I grunted, groaned, pleaded and got increasingly angry--hoping that the anger would drag up any hidden energy left in my leg.
"This is ridiculous", I kept thinking.
The house sounds so still. I can hear the furnace wheezing, the birds outside, Pippi's pacing paws on the wood floor, my home's every breath. It's so quiet and I feel alone.
As I keep trying I am dangling in the air hoping, awaiting to see if I have the right balance or lift, but end up falling on the toilet once again.
"If only my booster seat was taller" I thought.
Dropping down is easy, it's the getting up and lifting that is hard. During this ordeal, for some reason I thought of the fairytale The Princess and the Pea.
It's about a young woman whose royal identity is established by a test of her physical sensitivity to a stack of mattresses that cover a single pea. This single pea at the bottom of the bed keeps the young woman awake the entire night. Since, only a true princess would have the sensitivity to feel a pea through a stack of 40 mattresses she is crowned princess.
As I am trying to creatively figure a way to get up off this overly warmed toilet seat, I imagine stacking up these toilet seats, so that I have enough height to stand without a problem. I don't expect a prince at the end of this feat, I just want to be able to stand up.
I still remember, about 8years ago, when a doctor asked me if I had a hard time getting up and down. Back then I had NO problems getting up from a seated position and often found his questions puzzling, but now it has become virtually impossible and the symptoms of HIBM are stacking up one by one--revealing its true form. Any seat I sit in has to be a perfect height and my environment fixed a special way for me to be able to get up by myself.
We went searching for an alternative toilet solution. Unfortunately, there is nothing out there. I mean, there are things, but they don't tailor to every type of condition and their specific needs.
My current booster seat is 5" tall. I think a 7" would work. We tried toilet side-rails but my arms are too weak for me to push myself up with that configuration.
We tried one of those adjustable toilet seats that uses nuts/bolts, but that was too unstable.
I'm not disabled enough to need to hire assistance and if I did it would only cause me to rely on others more and my progression would come more rapidly. So, the current solution, which is working, is a barstool.
No, I don't shake up martinis and cosmos on my toilet, though not a bad idea for the future. I use the stool as a platform and leverage, in the same way I get up and down from my desk. I place it in front of me, lean on it and then push myself up with both legs and arms.
Going to the bathroom is something we don't think about. It's easy. We do our thing and don't give it another thought. But, for me, and others like me, going to the bathroom is an increasing ordeal.
With that, I crown myself The Princess and the Pee.
I can make humor out of anything, but at the time it is happening, it is anything but funny. I get intensely frustrated and feel way too alone, and these moments only remind me of the long road yet to come. These moments will only increase in number as time progresses. Sometimes I'm not sure if I have the "strength" to endure all that is ahead of me...but, I'll keep trying.
It's all very hard sometimes. Sometimes a day is all about just making it through...
Lately, I've been working day and night on my portfolio and by the end it will probably near 90 pages.
I've been so busy with freelance, ARM and setting up projects and new processes for them, that I haven't had as much time for my work. So, currently I am attempting to drown everything else out and focus on completing my portfolio for my job search.
I thought I would post some of my portfolio pages here and show what it is I do for a living. I worked at Mattel for a couple years and here (below) was one of my projects: their UNO Brand. Below (left to right) is my lead in page. I took each of their brands (Games group) and simplified them into a fun modern icon. (Right) is my pitch of where UNO brand is and where it could be (On the right side of this second attachment is some of my design proposals/drawings).
Below that is a series of Marketing pitches where I visually showed why it is a good idea to change, update and what that can do to their brand and company. While at Mattel my job probably only required me to sketch a plastic housing, but I guess I couldn't just do that and so I constantly tried to pitch new ideas and ways to expand their brands into today's culture.
It is hard changing a brand that is so long lived and companies can be weary about doing so. Business' get scared of change and would rather keep what is familiar, but change is sometimes good. It requires a healthy balance. Lucky for me this new look was welcomed and has done very well in the retail world, proving that yes, sometimes some thing different IS a good idea.
Below that, attachments 5-11, are my sketches and renderings of my final product. Sometimes a single final 'hotshot' rendering (digital painting/drawing) can take me 6 hours long.
As a designer I get to draw the ideas and then intimately work with engineers, scheduling and costing to actually make the final product. The process involved self-managing projects and balancing the costing, schedule and product's design journey, at least this was the process at Mattel.
An Industrial Design portfolio requires much communication and expressing your thought process and how your project evolved. This way your career potential will be able to read into your style and thinking, and decide if you are a right fit for their studio.
Unfortunately, a one page resume is NOT enough to get a design job. You need a book of your work. I have to take all my old drawings, many of which I needed to do new ones, and then lay them out onto a page in a pleasing and understandable manner.
So, that is a little look into what I do as a designer. If you look at everything surrounding you; shoes, consumer electronics, wheelchairs,pens, mixers, kitchen ware, bikes, glasses, toys, furniture - it was all touched by a designer at one point.
As time has progressed, I think I am most attracted to social design and designing solutions to some major problems; whether it is in the US or in third world countries. Social design is not your 'sexy' branch of design, but far more functionally meaningful, I think, because it really helps the end user in not just a cosmetic way. I believe I am most fortunate to be doing what I love.
Later, I'll post the link of my complete online portfolio.
Though, I give much effort in spreading awareness and help those that are trying to get us closer to a cure, it is not THE thing about me and I am not just about HIBM.
I'd hate to be defined as just that.
I'd much rather be defined by my passions, and me creating, in whatever form, is one of them. I have spoken about design a few times on this blog. Often times people confuse or degrade design as only making things look good which in some cases that IS the thing about the project, but design is so much more than that. Design is just another example of creativity and problem solving. I think we ALL possess creative powers and it presents itself in so many forms.
It is the taking of many dangling parts and meshing them together to form a whole picture. It is fulfilling of a need and sometimes creating a need that people didn't realize they needed. From branding to function to aesthetics to logistics to psychology to communicating to problem solving to dreaming what could be - it is a gamut of possibilities.
I think sometimes people judge 'disabled' on a curve and they are surprised when they meet one that has any skills. This sort of quick judgement is an easy way to quickly filter through all of one's encounters and neatly arrange them on some fictitious, and sometimes egotistical, scale.
People can't be measured this way, whether you are evaluating intelligence, intellect or creativity.
I do contact patients, and open to them contacting me, and do much advocating for HIBM, but there is a fine balance to it. It is not that I ONLY want to associate myself with 'disabled' yet I don't want to disassociate myself with 'disabled'. I just want to be 'me' and both sides describe parts of me. I cannot deny my 'disability', but I also cannot live completely in it, too.
Choosing one side denies my other. I believe this is how most people with a disability, or any struggle feel. They want to be seen as a person. They just want to be seen. I think this is the thing that ties all people is the desire to be seen, recognized and understood.
Give that to someone and you will see them open up.
I only wish to be assessed as 'Kam'by my passions and not by my current physical state. I have realized that the further I go into this condition, and into my own journey of self confidence, that I focus my world in that and therefore care a little less on how people immediately perceive me.
It is not always easy and I am not perfect at confidence, but that is the point of a journey. The point is there is no ending, because it is ongoing. We never stop growing. Slowly, I have realized that my differences is what sets me apart from everyone else and it is important to embrace that. It is not always easy, because sometimes I do worry that on a job interview, for example, they will see me struggling and immediately evaluate me without ever seeing my work or my passion. But, all one can do is be themselves and to never be ashamed. Never alter yourself or your style, because it is amazing what starts happening when you accept 'you' as you and start rolling with it. All sorts of 'you' start coming through in a very organic and honest way.
In design college I remember I had a hard time because I wanted to draw and design like everyone else. I had a particular design style, yet would look at my neighbor and wished mine looked exactly like theirs. I realized that was the thing that was blocking me. It wasn't until later that I understood the power of being yourself, and that I too have my own style and emulating anothers is just holding down my own potential. It wasn't until then that all sorts of creative parts of myself started emerging and slowly I've been slipping into who I am.
Once you start following yourself doors open and yourself is revealed to you. It is very important to truly be who you are, and if I had any advice for any design student, or anyone, it would be that. Your perspective is unique and the world WILL find a home for you. It naturally happens this way.
It's 3:30 am, so thought I'd do a very short post. I'm lying in bed with my iPhone in hand. I've been a bit MIA here, but assure I'll be back in full force once I get some personal projects completed.
I have a huge bank of posts, illustrations and video just waiting to be uploaded, but time is always a factor. I'm working heavily on my portfolio and close to the finish line. I'm doing my best to drown everyhing else out until I am finished. Maybe I'll post a few of the portfolio pages here.
So, until then I'll try and do these easy breezy quick updates.
As I've already established, I'm awake. Actually went to bed fairly early, but always end up waking up. I find I wake up to an idea and need to jott it down.
I'm lying on my back tap, tap, tapping my iphone with one finger. Holding my iPhone this way makes it feel like a 100 pounds. It is hard to hold up even the lightest of items. My finger gets tired and both arms feel strained. As it progressses I hate how I can feel how weak my legs feel even when I am doing nothing...even when I am just lying here. My legs feel numb and tingly. The muscles feel like they are hardly there, but voiceful just enough to express their depletion.
Hardly a part of my body, I feel like they (legs, arms...etc) are fighting to leave the 'team', they 'just want out', they cry...they want nothing to do with me anymore.
During the night I need to manually turn as my legs don't move on their own like a 'regular' person's body does. Pretty much while I sleep I lie perfectly still until I'm forced to wake up and reposition my darn body. I try to move my legs by myself, but many times I have to poke Jason to help.
Because my legs don't move on their own they get very numb and I need to constantly move and reposition to stretch them out and increase circulation. This combined with an over-productive mind makes it hard to sleep sometimes. I hate the feeling of numbness and I hate literally feeling the atrophy in my muscles. At least I still have feeling, right? There is the bright side. As the condition progresses the time it takes for circulation to waiver or parts of my body turning numb decreases. Seems like it happens quicker and much more frequently. My joints have really suffered, too and it's pretty uncomfortable. ALL the time. I'm always in discomfort.
Just to recap this weekend.
Well, the holidays are coming up, so I've been prepping for that. Around this time of year I always think of my grandma. She passed away 3 years ago. She was Thanksgiving and Christmas to me...to many of us. I believe that is one of the thing I adopted from her is my love to have people over, especially holidays, and have as many people as possible.
Whether I know you or not--anyone is welcome and as long as people are together and happy that's what matters most. I like the idea of making sure people have somewhere to go. When I first moved to LA many of our west coast friends had no place to go for the holidays as they left their family back in their home state. I feel it's important to make it a policy of open door, because many people don't have a place to turn to. Afterall, isn't that what the festivities is about? Sharing?
Family is not just biological and it should be available to all those who need it even if it is only one time a year. When I was much younger, my grandma's house was filled with people and that's how she liked it. Welcoming of whomever, even if she didn't know you. I noticed that. I liked that.
What else...hmm, this weekend I got a super short hair cut! I guess you would call it a Pixie style cut. I like! Anything that mixes things up I'm a fan of. We also visited 'Pixar: 25 years of Animation' art show at Oakland Museum. Very good show. Much better than expected. So much talent and more importantly the passion and vision is overwhelming. I love Lassiter's personal story of his journey. Attracted to Disney's story telling in classics such as, Dumbo, Bambi, it fused passion in him and he ended up working at Disney, his dream job. He ended up working there, but later was fired or let go.
Why? Because at the time he was working on the animation, 'The Brave Little Toaster' and in his free time he worked on a CG version of it. He believed this tool, this technology was the future, and so he pitched it. After the pitch Disney looked at him and said he could leave and that this technology, if it wasn't going to make them more money or the process faster, was no use to them (Disney), so they let him go. It's interesting when companies don't want to change or are afraid of anything that is different. No one wants to change. When they cant see past their door step and don't want to accept those that don't fit into their mold they degrade, and rationalize, the passion the person being too wide-eyed...too 'green'. When they do this they lose so much of 'what could be'.
People do this, too. "If you're not a part of my mix then I don't want to take the time to know you or share anything with you".
Even If CG was sincerely silly and would never take flight in the production world, Disney (any company) should have rewarded and harnessed that type of passion, because it would inevitably be useful. You need those types of people around. The types of people who work not because they think they are smarter, better than others or trying to get ahead, but because it stems from genuine passion. Vision and passion are things that can not be taught and very few possess this quality. But, he (Lassiter) had the passion and now look at what he's created. No opportunity is ever your last and Disney most certainly was not the end for him.
"Art challenges technogy, and technology inspires art"
Well, this ended up being longer than a quick post. Good morning!
Some people have asked me why images/videos don't show up in their email notification after I've posted. Images and videos from my blog won't show up on your email, so you probably have to click the title of that post and it will take you to my blog. I think you can check 'enable images' on your email settings, but probably just best to visit my blog. Happy Sunday! Going swimming and then Christmas shopping.
Weekly swimming at the local pool and it is always with tons of elderly. All you need is vodka and you've got yourself a party.
As I mentioned earlier, I've been swimming every weekend. Swimming is the best exercise as gravity is not working against me. I usually see the same patrons at the pool and they are usually all senior citizens. It is cute to watch them, because they have their own social circles and cliques and it feels like a Cheers (wet)bar where 'hellos', 'you made it' are exchanged. I am usually the youngest.
It is cool to be able to do all sorts of leg tricks that I can't outside like, lifting me leg and walking without the assistance of Clarice II, George, Charlie or Rolly (Kamjam mobility team; cane, braces, chair).
Plus, in the pool I am able to karate kick Jason ;). I can do flips underwater, too. It feels wonderful to be able to walk in the water and in a way nostalgic. I am visiting my past and it is nice. I definitely feel better and more energetic after the fact. If you are a patient, I highly recommend you hop on board the swimming train. Check out your local schools, as they may have special time slots for seniors/disabled and much cheaper than your YMCA. The local pool I visit is a warm pool, so it's very easy on the body.
Rolling and jamming around the city I noticed alot of wheelchairs out. Ughhh, why are wheelchairs so horrible looking?
I swear, one day, one day I wanna make those things look sweet, and THEN people will be staring at me not because I have wheels attached to my butt, but because I look so darn cool ;).
I definitely see a rising trend in focusing on individual mobility and making it better and cooler. Which is smart because disability rates are rising and people are living longer, thus more need for assistance. It's an industry that hasn't really been touched and its potential not sought after.
I definitely see more conceptual art for the medical device industry. Car companies, such as Honda and Toyota focus studios for R&D in individual mobility, though some more shiny than practical or functional. I see alot of conceptual - shiny art, so it makes the company appear innovative, but I'm waiting to see for this flare to be realistic enough to actually hit markets for people who actually need them. There is definitely so much potential awaiting. Hey, if people have to live in these things on a daily basis for the rest of their lives, there's no reason why it can't be inspired. I have alot to say about this subject and what one day I hope to do in this field, but I am tired, so I am off to bed.
The other day it was Jason's 30th birthday, so I drew him up this little comic. We are not into giving store bought paper cards to each other mostly because they cost $5 a piece. No way...no thanks.
'Robokam' was coined by my upstairs buddy. The second week we moved in she saw me use one of those helping hand claw things to pick something up. They were installing a ramp for me that same weekend and so she etched 'Robokam' into the wet cement and...well...now it has stuck.
Jason loves robots, so it seemed fitting to draw him a robot birthday card in a very 'Kam' fashion. Notice my one very long arm. That is my cane arm, of course.
When I delivered the comic strip to Jason my note said, 'Thanks for sticking around through all my bright ideas'. He follows all my projects, ideas, overactive dreaming mind, scheming and is always very patient through all of them :).
I appreciate that he is supportive of me following my ambitions. We try to be that for each other and not say 'no' to an idea even if it could be risky. You need that. I am all for saying, or considering, 'yes' if it leads to an experience whether it is for myself or him. He would say that I am the more adventurous one and willing to take the risk.
For example, leave a perfectly good stable job to move to a a less stable job, yet a dream job that could pay off in the long run.
Sometimes, if I propose something he will sometimes come back at me with logic and reality, even though I have already thought out all those practical points. I want to take the chance anyways.
I have a certain amount of feeling, if you sometimes take a risk it will lead you to unexpected and great paths.
I said it in the previous post, but my life is a series of situations like that in my life. All you can do is take the step and see what happens. Like everything, it is a fine balance. You can't be too reckless, but you can't be too safe. I'm a combination of organized practical realism and risky spontaneous idealism.
My move from Michigan to LA 3 years ago was completely impulsive. I virtually knew no one, had a disabling condition and yet moved anyways. My did brother live here and Jason, just an old classmate at the time, offered to help me.
I decided west coast was where I would find all the opportunities, and now look at everything that has happened in my life. I do not regret that move one bit. Our recent move from LA to SF was kind of impulsive, too. I left a perfectly good job, for more reasons than one and moved onto San Francisco where Jason found a job. All signs probably pointed that the move was not needed, but it seemed time for him AND for myself in my career. I needed more growth and so did he.
You need someone who will support your dreams and allow you to grow. To know when it is good to be a pair and when you need to be an individual.
Happy Birthday, Jason!!! Love, Robokam
Well, here I am with nothing to do but lay on my back gazing at the ceiling while realizing how dirty my floor is.
Gosh, Pippi and I shed alot.
I fell about an hour ago and now I wait for someone to gallop in on their white horse to rescue me. I must admit it is no longer a surprise when I fall, though it still does jerk a couple streaming tears from my eyes. I guess that part never gets old. The frustration part.
So, I figure I'll make use of my time and document this fall from my iphone and then read a book after. It's more of an inconvenience than anything because I have a long list of work to do. I haven't actually fallen in awhile.
I love that while I fully know I can no longer get out of these predicaments by myself, when I fall I immediately strategize a new way to get up by myself and then attempt it. As if I can outsmart these legs that don't bend or work anymore. I build structures with chairs, tables, etc, but my time would be better used in making one of those living room forts. No dice. No clever structure can get me up.
Pippi circles me with worry and confusion for awhile and then she gives up and retreats into her dog bed and sleeps. Thanks, Pip. You are lucky I don't have pen and paper on me or else I would sketch out your cowardly ways. Where is my super dog when I need her? In fact where is the super Kam I dream up when I need her? She could most definitely get me out of this.
Jason says he can't imagine me as not ever being the adaptable type. HIBM certainly contributes to teaching me to just go with "it". I am on the floor and there is nothing I can do but make the best of it. Adaptability is a very important life skill, not just for HIBM, but in general. It is another form of problem solving, right? Being a control freak and planning out everything according to your own will -- hmmm, life just doesn't work that way.
No person is exempt from unexpected circumstances or these little testing nuggets from life, so we might as well start training to handle the unexpected, unrequested or unplanned, no?
There are things we just can't control and trying to control it just makes ourselves nuts and possibly others around us nuts as well. If you can adapt to your surroundings, you can get through anything. Most of the time when we are willing to bend and let go -- new surprises, memories or opportunities arise from it. I feel like my life is a series of these instances of bending and so many unexpected paths and crossed paths have been created as a result.
Today was a homemade chili and cornbread kind of day, so I just finished making a huge pot.
Autumn is here. I have never been good at making suitable quantities - which is funny, because it is only Jason and I. Every time I cook I could feed eight people at least. Quite possibly this over cooking is me secretly hoping that if someone shows up at my door unannounced at least I will have lots to share.
I also just finished replying to a ton of messages that I have been meaning to reply to. That happens. I sometimes receive a hundred non-work related messages a day and at times I just don't get back to all of them. Eventually I do, but it sometimes takes awhile, especially if it is one of those "intro" emails where I need to share the entire gamut of what has happened. I am online and connected all the time. Aren't we all?
Sometimes I hate that and not because I don't want to help, but because so much of "it" is sharing. Alot of spreading awareness is constantly being connected and inviting people into your life. Sometimes, I hate that I am next to my phone all the time...it really looks like I have nothing to do but be online :P. But, that is how things are done in this era.
I just finished replying to a couple messages that have been sitting in my inbox for a couple months. I find the more you share, the more others share with you.
I receive emails from people I don't know, new patients, and non HIBM patients, all the time. I've done several speeches about my condition; some at work, some in conferences and it never fails that at LEAST one person comes up and says "I am or I have an aunt, child, uncle, sister, brother, child, mother, father, friend...that is struggling with...(insert word here)."
Here on my blog I talk about HIBM, but the struggles are not just about me and I am not the only one struggling. We all do, no matter how big or small. We are just vessels constantly bumping into each other and most of the time know nothing about those we bump into.
Think of how many people we pass or even know in our own personal life that we never take the time to "see" or understand where they are coming from. We assume and we don't spend the time. I feel we are here to share, because honestly what is the purpose of our life if we don't? We can't just be here for ourselves and ourselves alone.
With that, I just finished my pages of reply to this person that I have never met in my life. I re-read their email and this individual's journey of THEIR condition, unrelated to HIBM. I consider it a privilege to be able to be, in some part, a part of the lives. No matter where we live in the world - "we" are never dissimilar from each other and the line of connection never too short.
Well, time to go inhale this chili mess fest I created. I guess we will be eating it all week long. ;)
Thought I would post some food. In my attempt to eat healthier I've been trying to cook healthier.
I made this dish; pan seared salmon with some candied lemons and pickled persian cucumber. I dredged the salmon in a little cornstarch just to see what it would do. And, heirloom tomato and peach salad with basil and mint. You wouldn't think tomatoes and peach go together, but they do. The sauce is just some olive oil, soy, balsamic, orange juice and lemon.
I really do love to cook. I think with the holidays nearing I get really excited with the thought of being able to cook for anyone who ends up around my dinner table. This is me appreciating what I have while I have it. Last year was the first year I hosted Thanksgiving, a tradition that was my Grandmas. She passed away three years this Christmas, and so did alot of the traditions.
That, combined with the fact that my family is all scattered, holidays are just not the same. That makes me sad. And so every year, at this time, I think of grandma and those holidays that happened around her table.
Last year I cooked for my brothers and a bunch of friends. That was my very first holiday and it was all mine. I think at that time I realized there may be a time when I will not be able to host holidays again...and sometimes this makes me quite sad. I want to cook for my children and my children's children. I want to welcome them in from a cold day with warmth. So, I try to enjoy it while I can and put as much love as I can into it, because once it is gone, it is gone. It, meaning not just my body, but time.
I think I have already posted about why I love cooking so much. One, being the obvious, is it is centered around people, and two, it is creative.
Cooking is slightly different than say how I would tackle a design of a product or branding a company, for example. Cooking is physical. It is repetitive and I know how to tackle it from any angle without even thinking. I don't think while I cook, I just do.
But, when I am designing, whether a product or dreaming up a vision for a brand, it takes a little more effort. Of course it involves me putting a pen to paper and physically drawing, but for me design is more inside my head and I am charting mentally...creating spider webs and interweaving a broader scope. It is a cerebral exercise and I am so very thankful that my career is centered around my mind and not my body.
I graduated from College for Creative Studies and majored in Automotive Design. Since graduation I have added areas of "design" interest to my repertoire. Product, Graphic, Illustration, Web and the last few years I have really gotten into branding. There are so many components when you design something like a product, which is probably why I have gotten into branding; overall vision.
If you tell me to design, say a shoe, I can't just design THAT shoe. I need to think of its broader scope. I just can't help it. It gives me a starting point, the start line preceding the finish line. It, design/art, is logical yet organic.
A genuine expression of oneself is art. Forget all the fancy paintings and hall of fame furniture pieces as being the representation or the mascots OF design. They are historical and meaningful, but so is everything that never sees the light of being a headliner in a textbook or paper. It comes in all forms, from the experienced "artist" to the "non".
When Ideas Dance, So Do I. I did this little 'trapper keeper' doodle. A ramble of thoughts spilling out of my head. I may not be able to physically dance, but my mind is a keyed orchestra and my thoughts, the entangled dancers. When sketching this I actually was thinking of the movie Forest Gump. When Gump is younger and dancing in his restrained leg braces -- you know, right before Elvis steals his moves?
I added edamame in the sketch because I had a little situation with them today.
Lately, I've been eating salads and boiled eggs for lunch. I am also way into edamame. I can buy the ones that are already shelled or the pods. I choose the pods because I figure it is good hand exercise to shell them myself.
When I make my lunch I have to strategize how to get the food from my kitchen to my desk. I usually use my rolly office chair, place all the items on it and then push it to my desk. I dropped my package of Trader Joe edamame on the floor. Luckily I have wood floors, so I took my cane and slid it across the floor like a hockey puck. Unfortunately the hockey puck met a bump and out came all the edamame...awwwww...noooo!.
I can't bend down to pick them up, but needed to get them off the floor before my little Pippi came. She too LOVES edamame. So, one by one I pushed them across the floor towards my desk. This way I can sit in my chair, lean on my desk and safely bend down to pick them up.
Yes, there is strategy in every day. I felt like I was playing shuffle board and while I was picking them up one by one, since it took so long to do so, I imagined an edamame city and what that would look like. Buildings, cars, people, pets, all made up of edamame. A world made up of edamame. Could be fun. Got lost in the idea. Perhaps I will sketch it out one day.
I've been working on a lot of design projects recently and nearing the end of my portfolio. When it is finished it will probably end up being around 60 pages.
It is time to get back out there. I need it. I am slave to human interaction and the magic that happens when ideas are bounced around from person-to-wall-to-person. Thoughts jumping like a ping pong machine. Since leaving my LA gig, I've been consumed with ARM stuff, personal design projects, alot of freelance and in the middle of all that, dreaming up the company that I one day want to start. I've also been watching alot of independent movies and reading alot.
My most recent book, a book I had read before but never appreciated like I do now, is 'The Diving Bell and the Butterfly: A Memoir of Life in Death'.
Jean-Dominique Bauby, the editor-in-chief of Elle magazine, suffered a stroke and lapsed into a coma. He awoke 20 days later only to realize he was left with a condition called locked-in-syndrome, a condition in which the patient is aware and awake but cannot move, nor talk due to complete paralysis of all voluntary muscles in the entire body except for the eyes. The entire book was written by Bauby blinking his left eyelid, the only part on his being that he could move...besides his mind.
The average WORD took about two minutes to compose.
Reading his book, I can hear is voice. He has a strong one. The movie is equally tear jerking. I think it is important to have a voice, something personal and sacred to yourself. Sharing your own voice, yourself and your perspective from your very own experience. Bauby saw the problem, experienced it and then set forth to do something about it - even if it was just him blinking his eye. The book is an easy read. Only 120 pages. I read the whole thing in the bathtub the other night.
My current book is Kurt Vonnegut's, "Breakfast of Champions'.
No mention of Wheaties anywhere. Slightly disappointed ;).
"Always and never are two words you should always remember never to use."
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Can we talk? (No, I'm not Joan Rivers)
Today I was on some random street and popped into some random boutique and found these shoes and I was ecstatic! They are the coolest shoes I have. Sad, right?
They are super flat and light. I like that they are not plain black. They fit all my requirements and very comfy. I was deeply excited. Now before you start thinking I am typically girly, the excitement doesn't really stem from that.
With HIBM everything has to be constantly adjusted...everything! Not only your surroundings and adapting to your body, but yes fashion, too. Now, I am no fashion plate and I never have been. I like it simple and easy and don't want to overthink what I am wearing. I also have never, never been into shoes. I never had the temperment for shoes and getting into fashion. Perhaps I am a lazy girl.
Below are a pair of shoes that I hate and yet I have had/worn them for nearly 8 years...nearly everyday. Why? Because I am committed to what commits to me and boy these shoes commit.
I'd like to explain what is required to walk everyday. First, I normally try to wear clothing that is light, thus less weight for me to carry. This is the great thing about being on the West coast is coats are not necessary. Every Christmas when I return to Michigan, my hometown, my winter jacket feels like I am wearing a car on me. So heavy and bulky I can barely walk...but I digress.
Now shoes are really important. I wear orthotics (leg braces) and shoes are very limited when wearing these. I can't wear high heels or anything with any sort of heel. Though, I don't think I ever was really into high heels before--like Jimmy Choos ( I had to look up that so I knew a shoe brand. Pathetic). The shoes need to be flat and requires a back strap, front strap for ankle and some kind of straps or material to hold my toes in this way when I walk the braces are not slipping, as braces only have a shin strap for attachment.
Now, pretty much the only shoe I traditionally could wear would be tennis shoes. I personally don't want to wear tennis shoes every day, so I wear these ugly sandals nearly every day. These are something like my orthotics, except mine don't have a pivot at the ankle and I have two braces not one. I am not a pirate for gosh sake.
My body gets used to a certain balance and when I change anything, like shoes, my body has to adjust to those shoes (even the most minor differences) and then the shoes have to adjust to the routine terraine I walk every day.
So, if I wear these sandals one day and then wear a different pair the next, my balance needs to adjust each time. My body is very sensitive. You know how they say when you lose a sense, another sense is heightened? My body memorizes the slightest inclined, declines, sidewalk cracks and it recognizes change.
I also need wide shoes and shoes that don't weigh alot....so pretty much my predicament is I hate shoes and honestly can't be bothered about trying on thousands of shoes to find one that may work...this may be the laziness with fashion I spoke of earlier. I guess that is the part of my life that I am least concerned with. So, these sandals below have been re-threaded numerous times, because I just can't quite part with the utter reliability they come with.
These were another pair of shoes I found a few months ago. This year must be my lucky year. I post them, because I know I am not the only one with this problem. These are cool because they are like loafer-ish, but they have metal grommets, so you can lace anywhere you want to on the shoe. I wrap them around my braces and tie them ballerina style. They are also flat and super light. The are Simple Shoes. 'Shoes for a happy planet and a happy you'. Bonus, they are sustainable.
To make up for the lack of writing lately, I did another illustration.
In my previous post I described the current stage of my condition and that the weight of my body feels like a house on top of twigs, my legs. I thought this would be fun to illustrate and I immediately thought of Shel Silverstein, an American poet and author of children's books.
These books, like 'Where the Sidewalk Ends', I read as a child in the library and at the bus stop. As a kid I liked his odd and quirky style and the way he uniquely explained situations.
In my effort to try new illustration styles and change it up, I wanted to do this drawing as a nod to Silverstein's style. Through the last couple months since I first started illustrating, though not my field, it has definitely been fun, and I find similarities with this form of art with Industrial and Graphic design - my formal training.
I think that is what I find most fun about art, and all things really, is the searching for the parallels, connections and then communicating through it. Creativity is in everything. Everything. I think most people misconstrued what 'creativity' really means and confine it to just "art" when in fact creativity comes in all forms. I digress. again.
Today, I had severe trouble taking off my shirt. Took me a good four minutes to pull it up and over my head (I would be a terrible date). It was also the first day that I didn't feel I could drive and I was completely bummed. I love driving. When I lost the ability to run, driving became "running" to me. HIBM has practically taken my legs and now it wants my arms and hands, too?
I am imagining what HIBM looks like and had an idea of personifying it, so I can share the inner monologue I have with it on a daily basis. I should draw that up. Perhaps HIBM is a misunderstood monster or creature...perhaps "it" has a thorn in its foot and is cranky and irritable...whatever the case, I wish "it" would stop.
I wish to keep my arms and hands...at least, at least let me keep those...
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