It'll Be Alright

Here is a video of me demoing the new wheelchair. The little boy you see at the end is Niels. I had to add his wheels into the video, too. He's the 3 year old son of one of the ARM founders and my sleeping buddy when I stay in LA.

I recently went back to LA for a few reasons like, getting fitted for my very first serious wheelchair, series of doctor appointments, ARM related biz and recording of a little bike project video with my friends.  That was two weeks ago. I wish I was better at uploading right away - mostly because the feelings and experiences would still be fresh and easier to convey all the intimate details and emotions of the moment. But alas, I am not always great with this.

I mean, I haven't wrote about my trip to Korea and Thailand yet and that was from September of 2010. I'll do that soon.  

Anyways, each day I did try and write what notes I could in my iphone notepad.  Apologies in advance for this very long and mis-shapened post. Not exactly poetic, but there is alot of information to cover here.

Wheeling and Dealing

Some friends in LA set up appointments for me to finally try out a more serious wheelchair.  My walking is becoming quite parse and there is nothing left to do but look into further assistance. I feel like I did what I could and held out as much as I could.  Had I not held out as long as I had, I could be in worst condition today.

Still, I cannot hide how I truly feel and there was some sadness for sure.  I have said it a number of times here, but the thought of the wheelchair is not what makes me sad.  I am not so concerned about how people will view me or look down on me because I am in a chair, but moreso I hate the reminder that the next stage of weakness is around the corner.  I hate the increased heaviness of my body.  I am dead weight.

I hate the increased weakness and loss of such simple movement. If I could go into a wheelchair and keep my arms and hands I would be so thankful. I can handle having wheels as legs, but not sure I can handle losing my arm. and the like. I suspect if, and when, this happens I will adjust and design this limitation into my every day life.  

My friend, founder of ARM and HIBM patient himself, suggested I do not go into a powered chair quite yet.  Doing this will cause my body to get weaker at a faster rate, because I will use less of my body to get myself around which results in faster atrophy.  So, a way for me to maintain what I have just a little longer is to go into a manual chair.  However, due to the increased spreading of the disease into my arms, shoulders, hands and fingers - being able to propel a push chair is virtually out of the question. I can push it slightly, but any inclines or carpet gets in the way of any movement beyond that.

So, I was set up with e-motions wheels and a standing frame.  The e-motion power-assisted wheel is mounted on the wheelchair in place of the manual wheels. The batteries are integrated in the wheel hub and can be removed from a sitting position. A sensor registers the propelling movement and activates the electrical motors.  I think the function basically derives from a bunch of magnets constantly fighting with each other. Pushing and pulling.  Using these will allow me to propel a manual chair independently, and still get some arm exercise while not damaging my arm muscle fibers. If I do too much, muscles tear and unable to repair themselves once it happens.

The frame is Helium's Lifestand wheelchair.  My friend wanted me to try a standing chair so that I have some independence, but mostly so that I am not in a constant sitting mode.  If I switch from walking to suddenly sitting 24/7 that will just make what I do have left in my legs weaken very quickly. The Lifestand chair is a manual standing frame and allows me to stand if I need to reach something, but more importantly give my legs some circulation and maintenance of some strength.

When standing I have to use my quadriceps to maintain position, so it helps work out my quadriceps a bit.  It seems trivial, but ANYTHING I can preserve is huge measurements when it comes to progressive conditions. Helium is the lightest standing wheelchair in the world and uses the same materials that are used motor racing and aeronautics.

So, here is the moment of truth -- I pretty much picked this chair because of the design.  Not that it is such an amazing design, but in the DME (Durable Medical Equipment) world it is definitely better than most. Some of the other standing chairs I saw were horrendous and I felt like I was being locked in some contraption that was going to eat me. But, I liked the lightness of this one and I liked that the design is form following function.

The swinging function of the chair is conveyed through the design of the curvy frame and hand rails.  In other words, it looks like what it does.  I loved that they called out just the frame with a color.  The world of wheelchairs and mobility is attempting to make strides in design and looks, but still very much oriented in function with bare minimum design. The industry is way behind and has so much potential.  

As my condition was worsening during design college I remember taking notice in wheelchairs, and the like, and thought it was such a shame because there was so much potential.  For someone that has to live the rest of their lives in a chair, why can't the design be a little more inspiring?  Why does it have to be bare minimum functional design?  I was talking to the providers of this chair and as a designer I shared my perspective on the subject. They said though it is making strides most people in the field wouldn't understand what I was saying.  At times when they speak with the european company about changes, color or other features, they can't understand why the look of something makes any difference. Which is really telling about the medical equipment industry.  The industry sees it as a contraption that is needed and not desired, so why put any effort in designing it?  

Picking out this more stylish stand made it that much easier to transition from walking to being a chair user.  

It sounds shallow, but it's not. Design is important, not just for function, but for those who are being placed in a life altering situation.  Design has the potential to not only solve problems, but make monumental life changes that much easier.  For me and the like a wheelchair will become a part of my skin. It is not unlike clothes and how we desire to express ourself.  If wheelchairs were viewed more as a device of expression, then perhaps they would be handled and designed differently.  The team that set me up in this chair was wonderful.  They came over to where I was staying and stayed late making adjustments while I tested it.  They even borrowed me the frame and wheels while I was in LA so I could test it out.  

"Tried a wheelchair today. While I am glad such things exist to assist me through the progression it was a big milestone and I couldn't help but get teary..."

I definitely felt more independent while testing it out and I did feel a sense of relief to have such equipment available to me in my time of need so I was happy, but at times I had to turn my face away from everyone because tears would well up. I can't help it.  I don't feel like my life is over or that I am any less of a person, but these days I am not the best at hiding how it really feels deep down.  It is still hard.  It is still very tough.  My mind is like a self running projector showing me images of my past years and how it has all progressed--where I was then and where I am now. Recounting when I was walking with more ease or mentally zooming in on my feet as they climb a curb.  How did I do that?  It feels so long ago, yet like yesterday, and at times I just don't know how I got to this point.  What happened to my body?  

After that we ordered some chinese take-out and had a great heart to heart conversation about DME industry, insurances and the types of scenarios and people they experience.  It was very insightful since designing such things is something I want to do in the future.  They were great people and went out of their way to take care alot of the wheelchair fitting process in a short amount of time.  I'm not in the clear quite yet. Now, begins the fighting back and forth with insurance to see what they will cover, that will be epic.

Doctor visits

In addition to the wheelchair I had numerous doctor visits. Cardiologists, pulmonary, blood tests, MRI's, etc. The past few years I've barely seen a doctor. As a matter of fact, after I received my final diagnosis of HIBM from the Mayo clinic I never really went back to a doctor again. After all there was nothing a doctor could do for my condition and after years of dealing with insensitive doctors I needed a break.  

However, and if you are an HIBM patient you should do this, it is a good idea to get these regular check ups once a year. You need to have a chart, because when trials do happen you need a baseline. After the trial/treatment they can start documenting if you are improving or not. Make sure to keep a yearly chart on yourself.  Test your creatine levels, too.

Friends and love.

Most of the trip Jason was not with me due to work.  He flew in Saturday and we drive back to San Fran together.  When Jason is not around it always takes time to adjust to another person.  Everyone helps in different ways and even though my friend Sandra, her husband is an HIBM patient, he requires lifting in a different way than I do.  In short, we all have our own styles and comfort levels. My friend, Sandra and wife of the ARM founder, flew up to SF and drove me to LA and I stayed with them during my time in LA. They are wonderful and obviously understand the needs of an HIBM patient. Each time I visit and stay there I notice I need much more help.  Last summer I visited and I could go to the bathroom by myself, but this time Sandra had to help me each time so now she had two HIBM patients to take care of.  Two patients to lift, two to take to the bathroom, two to help shower and get dressed. She is wonder woman.  

She says she doesn't mind, because that is what you do when you love someone. Very recently, I also stopped driving  so she had to drive me to each of my doctor appointments.

I slept in their son's, Niels, room. Night time always seems to be the hardest because I am alone in the bed as well as it being the time of the day where everything that happened kind of comes down all at once.  

At night I need help turning in bed. Last time I was at Sandra's I could turn myself, but this time it was a little tougher.  If I get myself into a position I can't get out and I am stuck for the night.  She has to move Bobby, her husband, all night. He needs help to move his legs and his arms and I am getting to this point, too.  

I remember crying in the middle of the night and not knowing it. Most of the time I tried to move myself because I didn't want to wake Sandra up in the middle of the night, but at one point it was so painful that I called her.  I was half asleep.

Our way of communicating is actually to whistle. My whistle was a very low one, but oddly she heard it and came right in. Half asleep I cried, "How could you hear that?" and told her how much it hurt from not moving all night. She moved my legs to a new position. My legs were deeply asleep, stiff and frozen cold from no circulation.

See, most of us can move our bodies while we are sleeping.  Our body is working even though we are not, so we move throughout the night without waking up.  However, I cannot do this.  I literally have to wake up to even think about moving and normally need someone to move me to a relieving position.

At the end of a busy day of appointments I fell into bed extremely tired, both physically and emotionally. I'd pull the covers over my head and cry as to not wake up their son. But, more than anything I was thankful to have such great friends. The thing with friends is that very few are really there for you and for some this even goes for family.  So, when I find people that love me and go out of their way for me I am deeply indebted.  

I wrote this one night on my iphone:

"They are more than friends and even more than family at times. Sometimes you experience love so great that there are no words.  At the most humbling, saddest, darkest moments seeing a pair of hands come to help you is what gets you through.  You can say you love someone and that you care, but it is the actions that always shine through. Love is selfless acts in action. Love is taking on accountability, responsibility even when you don't want to and even when it "inconveniences" your life.  I cried tonight. So much I could not only taste my tears but I could smell them, too.

So many emotions and I don't think I have the words to explain what it feels like.  Not to self-pity, but it's hard no matter how you shake it. Not so much sadness or depression - rather the seeing of the road ahead.  It's also feelings of gratitude, love, physical tiredness and all the things in between. You think you know what love is and then you see it again for real.  The people who are there in the most difficult time in your life, even when it is not easy for them to see it all happen. I wish I could describe it. I wish there was a camera on my shoulder and in my heart, so I could document all the little events, feelings and observations that create a whole picture. I wish I could better explain it.  I wish you could see it and feel it.  

When you experience love it only renews you and encourages you to keep pushing even when it feels like no one is listening, especially when no one is listening.   It encourages you to love others and give of yourself to others despite it putting you in the most vulnerable of positions.  The position of rejection, or unrequited love.  The way they have helped me and saved me could never really be communicated nor measured.  Not everyone has the opportunity to experience such love housed in the least of desirable moments.  I feel blessed for that and if I could encourage others to love like that...just know that it does matter...to someone like me in those fleeting most darkest of moments.  

Out of the corner of my eye I see all the things that Bobby and Danny can't do (HIBM patients & founders of ARM), and while I don't think any less of them because they can't I see myself in them.  And while I respect them so much, if I can help it I don't want to be at their stage and they feel the same way for me, too. I need to keep fighting because the technology and research exists where possibly I, and others, don't have to be wheelchair bound.  It is getting there that is the hard part.  It is easier to take the paths of more assistance because it really does make life easier.  I mean, who wants to struggle walking 60 steps to the car when you could just roll there? It is a slippery slope and I have to do my best to have balance between knowing when I can't do it and knowing if I just push myself--I can.

I am going to make an assumption and say it was hard for Bobby and Daniel to see me at this stage of a wheelchair.  Knowing my legs are dying and that my arms are next.  He said I am a representation of the people they are trying to help and why they started ARM 10 years ago.  I personally know they take it to heart when they see other patients progressing.  It weighs on them heavily and time is of the essence...Alas, this is what the research world is like.  Not everything happens quickly or the way we want it. For him, he says, it is too late and he is already in a wheelchair, but for me I am an example of what they are working for and was supposed to save from getting to their point. Perhaps I was not meant to be the patient that research will prevent from getting worse or being permanently wheelchair bound, and if this is so I at least hope someone else can be saved.  I don't say "saved" to demean those that are in wheelchairs because obviously I don't see them as "less than", but it is a tough jorney and if it can be prevented, then why not?"

Bike Video project and friends

Lastly, a fellow CCS designer alum volunteered to film a short video explaining the purpose of the 500 mile bike project that we (Andres, Viet and co.) are doing in the spring. I had never met Steve, but wonderful of him to volunteer his time like that.  Filming and editing is alot of work and takes alot of time so I am overwhelmingly appreciative.

We started filming my friends and I just casually talking at the kitchen table.  Sun was out and it was a great day.  We then took the camera to a little bike trail at the beach and I was able to join in the biking :).  I wheeled along side them in my wheelchair and it was pretty cool how far I could roll.  This was probably the most active my friends had ever seen me. Filming pretty much took the whole day and it was alot of fun.

Because feelings about a disability don't naturally come up, or people are afraid to ask, I am sure they learned alot from me as I was explaining the gamut of how it came to be and how I felt about it, and I too learned alot from them.  Guys in particular are not exactly forth right with their emotions, but as they spoke to the camera I learned how they view it, how they view me as a friend, how they wished it wasn't so...etc...and it was a wonderful moment. You will see our day compiled into a short video soon. I will post it.  I don't think "we" share enough about how we feel about each other, but time is not around for forever, so don't forget to tell those around how much you care about them. This is very important.  And remember, it'll be alright.

Thanks for reading my blog :)

Mindflex Time

The Mindflex I designed while at Mattel just made it to Time's, 'All-TIME 100 Greatest Toys', 100 most influential toys from 1923 to present. Cool!  I'll be honest. I am a bit shocked since there are so many amazing toys out there, but still quite an honor.   

Mindfex is a levitation  game which uses brain waves to steer a ball through a customizeable obstacle course. The brain waves are captured with the enclosed EEG headset, which allows the user to speed up (more concentration) or slow down (less concentration) a fan, thus lifting or lowering the blue ball.

I designed this in the short amount of time I was there. Not bad for having no toy or game design experience prior to Mattel. It was definitely a fun project and I was the sole designer. I learned alot -- probably more about people than the actual manufacturing and process of making it.  I had the opportunity of working on the entire gamut of the project; including creatively directing the look and feel of the product and overseeing the progress from start to finish.  My main notion was to make it, as much as cost challenged toy environment and engineering limitations would allow me to, less toyetic and more neutral. I wanted this to appeal to beyond Mattel's usual demographic (below 10 years old) and an item for 'everyone'.  I guess college students like to play with this while drinking, according to Youtube.

The item has won multiple awards including Oppenheim's Best Toy Award for 2010. I'll post my drawings from my portfolio later.  The top image is a page from my folio and the below pictures I credit Pocket-Lint.

Alright, back to cooking.  Right now I am making homemade Gumbo soup. I took a break because the knife was getting heavy.  That could end up to be a bad situation if I don't take breaks.  After Jason wants to play his new video game, 'Marvel vs. Capcom' in which I have to fight him...and then beat him ;)

"Mommy, There's a Wheelchair"

In Targets right now and a little boy screamed out, "Mommy, there's a wheelchair". I laughed.

Kids are great, because they are honest. They say what adults are thinking. I told the mom not to worry or be embarrassed. A month ago we were picking up some tacos from this great little taco stand that just opened. I had to wait on the sidewalk while Jason ran in because there was no accessibility. A young couple came strolling out holding their 4 year olds hand. As they were walking in the opposite direction the little boy's head and confused eyes were glued on me and his eyes darting from me, to the chair to me, to the chair.

"Why are you in a wheelchair?" He shouted.

"Because, it's cool!", I smiled. "Oh", he replied still confused.

The parents laughed and it was instantly a comfortable moment rather than an awkward one. I tell parents not to be embarrassed, because I'm not. It's good to promote curiousity in kids. Sure, there are some people that don't want their "disability" pointed out, but for me I don't care too much. If the parent becomes embarassed or fearful I think it indirectly tells the child that something is wrong. Then you're telling your kid to pretend that anything different is not there. Look away and ignore. Instead, the opportunity should be used to show kids that differences are ok, and though they should kindly present such questions in a sensitive way, the question or wondering is ok.

Caring is NOT Creepy

I guess I should kind of explain my previous blog post.  

Last week I was in LA for multiple for doctor visits, wheelchair fitting and filming a little teaser video for my 500 mile Charity Bike Project for my condition. I will write a post about my LA visit later.  

But I was finally fitted for a serious wheelchair and I can't deny it was a little emotional.  My time in LA was busy and I tried to fit alot in just a few days.

Friday night I had an appointment with some friends to film this bike project we are setting up. One of them cancelled and it wasn't so much the cancellation that bothered me, yet a culmination of things that seemed to instantly pile on me.

I was with Bobby, Daniel, Sandra and Sheila waiting to meet my friends when one of them cancelled. Dr. Bobby and Daniel Darvish are brothers and the founders of ARM organization, and Dr. Daniel D. is the scientist trying to get to a cure. At the moment, he is one of a few in the world working on a cure towards the debilitating condition I have.  Oh, and they are also HIBM patients. Far more progressed than I. One day I need to do a couple posts that explains the background of how I found my diagnosis and how I found ARM.  

But, for now just know it is a big part of my life. I don't have a break from HIBM physically and I don't really have a mental break from it as well.  It is always in the back of my mind and a full-time effort.  With that, sometimes being involved with something so serious can eventually gnaw at you without you knowing it. 

My friend cancelled our Friday film appointment and I was upset because it was something we had been planning for a few weeks. Not only that, but it would be the first time I would meet Steve, a generous designer who offered to film and cut a short video that we could show when we launch the 500 mile bike project in May.  

I didn't want to cancel on him in fear that he might lose interest.  It was a night of constantly changing the time, locations, texting back and forth that eventually led to cancelling, and I was getting frustrated.  

Sometimes people don't realize how much goes into scheduling multiple people and how much I need to prepare, even just showering, to get to my appointments.  I sat there at the kitchen table eating with the Darvish family and the mother, Shuku, feeding me Persian meatballs, salad, curry and basmati rice.  

My face became crinkled and I just started bursting into tears. Right into my meatballs.  

Sandra, Bobby's wife, asked what was wrong and all at once I spewed out all my frustrations.  With my face buried in both hands, I was practically wailing. 

"I hate caring so much. I wish I didn't care, I don't want to be an inspiration--I just want people to care!  I hate talking about HIBM all the time. I hate writing about it on Facebook. I hate doing a blog. I just want to hide and I don't want the responsibility anymore...I want out...out in every way...I don't know how you guys do it..." 

I guess I should explain more in depth, but it is hard to because the feelings involved with the journey of a debilitating condition is like legos. It builds.  A cry or a breakdown is not just about a singular moment, but years of learning and understanding yourself.  Years of learning through actual experience and being taught life lessons the hard way.  

Really, I don't mind talking about HIBM at all, because I want to help, and charity or not, I feel being open is better than being closed.  So, never feel like you can't ask me something, because I really AM ok with talking about it. The feeling really derives from feeling like you do so much just for ONE person to get interested and get involved. We (ARM) do not have alot of help and everyone is really tired.  Not to mention when you are a patient experiencing what the cause is for - all of this is even more taxing. 

I think it was hard for Bobby and Daniel to see me cry.  It is never easy because they too know what it feels like...more than anyone.  Because Bobby and Daniel are scientists, doctors and the face of the organization they have to hold this professional demeanor.  It is what everyone expects. You can't appear "weak".  You have to be steadfast up there on the podium or when you are wearing your white jackets.  

We put certain people on pedestals, hold them to expectations and expect them to perform or act a certain way.  It is a shame and it is wrong. We see scientists, or the like, as inaccessible...out of reach...with no feelings.  

And to make it worse they are men, so society can't allow them cry or be emotional.  But, since I have the opportunity to know them on a personal level I see how they really handle HIBM.  They handle it pretty amazingly, but are not excluded from dark moments.  I don't want to go into their personal aspects without their consent, but it is not much different than what I experience.  So, when they see me cry they often get quiet, and at times, kind of disappear from the room while Sandra or Sheila, their wives, console me. 

After I finished letting it all out I gathered myself and texted Steve, the wonderful volunteer who I had yet to meet, and told him I was still up to meeting just him so we could get acquainted before filming on Saturday. He was eager and even though I had no desire to talk about HIBM and my eyes were swollen, it was 10pm, and felt disappointed, I met with him anyways. Simply because, at least there was this one person who was an example of wanting to help, and I have to acknowledge and hold on to the ones who do help and try not to focus on the ones that don't.

 I get tired and put so much of myself into gaining awareness and sometimes it feels like it is for nothing.  Sometimes I feel like I don't make any differences.  It is not just physical effort, but much of it is emotional.  Sometimes it all catches up and I feel alone.  

I ask myself, "why do all this work...why care...? for what? So, that I can tell  hundreds of people my story --and maybe one person will step up?"  

When you put all of yourself into the things you care about, you open yourself up to vulnerability, getting hurt and a lot disappointment.  But, here is Steve that cares. Bobby and Daniel care and when I see people like that it inspires me to care even though it hurts.  To say something is inspiring is not walking past it. 

True inspiration is not a momentary feeling. If you feel it then express it. I don't want to be an inspiration. This is not why I speak.  I don't actually consider myself an inspiration. I just try to get through it like everyone else. I share because I want people to understand and then hopefully the understanding will turn to caring and hopefully the caring one day will into action.  You CAN'T expect, force or guilt people to do things or care. You can only be an example and hopefully that is enough.

But, caring is not creepy.  That is how I felt for that moment, so I shared it, but it is important to care.  If you don't, then who will?  

Caring Can Feel Creepy

I'm stuck on my back. Unable to move. Staring at the ceiling and so very tired. 

My body is not with me. Sometimes caring feels lonely. And caring is creepy. Building nothing, just laying bricks. I'm visiting LA. Tough week. I don't want to be an inspiration. I just want people to care enough to make this stop.

Sidelines

So, I promised myself no more drawings until my portfolio was finished, but this one has been stuck in my head and I finally just had to throw it up. To make it quick I did part drawing and part collage, so there, I got around keeping the promise to myself.  I'm not a huge fan of this drawing, but exploring and figured I would post it anyways. Good news is I am uploading my online work portfolio as we speak, so not too far from finishing. 

The other day I was listening to Peter Broderick and it made me think of an illustration.  Peter is an American musician and composer and in particular I like his solo piano pieces.  His stuff seems to lend toward those rainy days.  

I was listening to his Sidelines and then watched his video (below). Definitely strikes a maddening-depression sort of cord.  I know we have all experienced that before or unsure what our next step is.  I know we have all felt like this before.  We feel like we are on the sidelines watching life pass us by.  Merely spectators.  Sometimes, we feel like we are not contributing to life or not living to our full potential, and this only makes us sadder.  Sometimes, we would rather stay in bed; watch the blind's shadows move from one wall to the other, and use that as the only evidence that time has passed...the day has passed.  When I feel this way I try to get myself out of it.  Find something creative.  Find inner perspective.  See potential.  That hour, that day, that week, or however long this "sidelines" last can be difficult, but it is worth waiting it out when I see my next move.  

I may feel slow and unable to express myself physically, sometimes, trapped inside my body.  But, it is those trappings that perpetuate me to express myself in other ways, and to release myself from my own sidelines.

Sometimes, it feels like we are on the sidelines, when in fact we are right in the middle of it all where infinite possibilities are waiting for us. 

This Will Be Our Year

So, a little late with this one since it is already January 27th, but here is The Zombies, "This Will Be Our Year".

This morning at 7am I found it hard to get up.  My sheets were warm, my body felt limp and I didn't want to face "it".  I dragged myself out of bed and went on a little early morning "hike", which means drive for us, through the city and it is hard to be down when there is so much inspiration around.  A little sun goes a long way.  So, for all those out there...when you are feeling down say to yourself, "This will be my day".  Life can be darn hard and we all face struggle.  Limitations, depression, fear, loneliness...Sometimes, it is a step by step kind of hour, day, month, year...but we can do it.   Most important thing is to see potential, see the positive and have passion.  These things can carry us some of the way...if not all the way.

Random Bits: Parks, Tacos, Pedaling 500 Miles and Space Hopping

I told myself no more illustrations or cooking until I finish the last bit of my portfolio. Perhaps in a week I shall be completely finished with it. Until then here a couple random bits.

This past weekend was pretty quiet. Dog park overlooking San Fran, tacos, work..lolling. Weather has been absolutely perfect lately.

What else? I am in the process of organizing a little grassroots fundraising/awareness project with a couple of buddies.  A  couple of my friends offered to do a bike ride from San Fran to LA as a way to fundraise and raise awareness for my rare condition.  This is nearly a 500 mile bike ride and all proceeds will benefit biomedical research for a cure towards HIBM.  

This should be fun as bike riding is something they are passionate about. They plan to do the course over a 5 day period and I will document their daily happenings and route through a blog dedicated to the project.  I was touched when they said they gladly offered to do this for me and even a couple of their friends, who know nothing about me, have volunteered to be a part of the ride.  

It is these little moments that connect me to people, and when they go above and beyond I cherish their intentions and file it away in my memory.  Often times it is the unlikely person that ends up surprising me with showered love and support; the person I met just one time or the person whom I've never met in my life.  I guess this is what I mean by inspiration into action.  

It is easy to talk about everything that is wrong in the world, and how things need to change, but it is something entirely different when you do less speaking and more doing. It is easy to complain, but harder to follow through with any real accountability. I guess, I'm attracted to these types of people, and I feel their inspiration is genuine.  

I am excited to see how this project will progress.  For now it is called, "Pedaling for Kam" and the tentative date is the last week of April of 2011.  I will keep you posted on the details as they come to fruition. :)

With that, here is a fun little video. It would be cool to get around like this...on a shiny red floating ball.  I have a friend that I sometimes text when I am having those really bad days.  When those crazy moments happen I scream about how I hate HIBM to him through text and he usually replies with something funny or perspective oriented or sometimes says nothing at all.  He is a toy designer that I used to work with so he says he wishes we could switch my head to a helicopter body so I could get around better.  Soon after, I watched this video and it sparked a couple illustration ideas .I will have to do them later ;). 

Monster on My Ankles

You know those little floor or door ledges? Well, this drawing was inspired by that.  

My home has little moulding ledges in each doorway.  

Really, any SLIGHT rise or lift is problematic for me. I must stop, take thought and carefully guide my legs and feet over that 1/4" lift.  

My entire being has to be dedicated to this moment.

Sometimes, I can achieve this in one try and sometimes it takes several.  

This calculation would be while wearing braces. However, if I am not wearing any braces or shoes it is much more difficult to impossible.

One day I was stuck in the doorway having a problem with lifting my foot over this silly rise.  If you step back and watch me it is almost comical.  I mean, how can something so little give me such problem?  As I stood in the doorway trying to will my legs, I imagined that perhaps a creature or monster of some sort was preventing me from victory.  

"Darn monster grabs my ankle and just won't let go...every time!" I thought.  Perhaps it is angry with me.  Perhaps it wants to be near me and has a crush on me.  Perhaps it has something to tell me I'm not sure. Whatever it is, it makes everything so much more difficult then it needs to be.

So, this came out of that moment.  That tiny moment. These tiny moments are where my mind wanders, more than usual, and I try to explain these moments to myself.  Forget about explaining it to everyone else I try to explain it to myself first.  

This piece actually took a life of its own during the process or drawing it.  I had a completely different style/concept in mind.  I was struggling a little with the drawing, but eventually the style morphed into this.

Again, I am kind of learning illustration as I go. I am not trained.  All I know is the message.  I start with a moment and see how the piece transpires as I go. I have recently had some people ask me to do some illustrations for them, and I told Jason that I just don't feel that confident yet. I was trying to dissect it, so that I could understand my process of how I am learning this medium.  

When I draw these they come from me and my experience, so in many ways it feels effortless despite the lack of my technical know-how. The story is already there and thus the inspiration I feel towards it.  These moments are ripped completely from me and I try to put it on "paper".  When I draw one I am completely lost in the moment.  I don't need to "will" it to be something more or attach layered meaning, because it is already meaningful.  It's real.  So, the meaning catapults the result.  

If I was to draw someone else's story or something else, I am not sure I would feel as confident in achieving a final product.  

For this drawing, I was definitely was inspired by Persepolis' illustration style combined with Frank Miller's stark black and white contrast affects.

It's Like Riding a Bike

There are so many things we do throughout the day that we never give a second thought. We don't listen to the inner workings of our shell and all the parts than need to collaboratively work to achieve one simple motion.  My fingers while I type, my hands while they draw, my feet as they take a step, my fingers to scratch my nose, my neck that supports my head as I hold it up to look at the screen OR my body when it wants to go on a bike ride on this most, most beautiful sunny day.  

We search for these "big" things. These miraculous entities beyond us--the galaxies we want to explore that pull in our attention, the miracles we desire to see, the pondering of philosophy and culture. 

Curiosity for all these mentioned are necessary, but I wonder if we take notice of the closest thing to us that is beyond miraculous.  It is inside us. Something every one of us on earth share and have in common. The complexity of the body. The complexity of mobility.  The complexity of memory. All of it. It is amazing in its seeming simplicity, and yet its simplicity slips away from me.

It takes 26 muscles to smile, 62 muscles to frown, 34 muscles to move my finger, 200 muscles to take a step.

As I travel through this, I learn, adapt and in a way my body morphs into something new, and successfully makes it to the next round.

But this doesn't mean I don't miss what I have lost. I miss bike riding. I miss the feeling of the wind in my face while I pedal my feet. I miss running so very much. I sometimes try to recapture the memory of it, but every year it becomes more and more of a foreign concept.  It runs further from me.  When I watch people riding a bike it baffles me.  It has been so long since I have rode a bike and as time passes the concept of riding one is something I can't even realize.

My body does not work this way. It has been reprogrammed. It seems like I should be able to hop on a bike, just like I should be able to lift my leg to ascend a single step, but my body is a road block the size of a rhinoceros. 

I am taken back to my childhood. I literally remember the day when I learned how to ride a bike without training wheels.  

I remember practicing in the driveway all day, and when my dad thought it was safe enough to leave me alone he went into the house, because he had already been at it for hours. But, I stayed outside. I wanted to keep up my momentum and do better. I circled that driveway trying to stay on my bike for a few consecutive minutes.  The sun was setting. The gentle breeze on my face. The neighborhood was quiet, and it was just me and my bike. I remember that bike vividly. 

It was banana seat bike, of course, with colored streamers hanging from the handlebars.  Orange reflectors that at one time I had broke, so I lied and blamed a random fictitious stranger and said he came from the street, slapped two bricks on my bike, broke them and then ran away.  

I was a creative liar, as all kids are. 

I practiced and practiced until my body memorized the steps. It required balance, it required careful thought, pedaling, steering until the point where I no longer had to give it another thought. I was doing it. I was riding my bike and I felt accomplished. I was hooked, and the next morning I couldn't wait to run out so I could revel in my new found "skill". But before achieving this, I remember how confusing riding a bike seemed was. And, I am taken a back -- to that time as a child, because as a 31 year old adult I am now confused again.  \Riding a bike now is beyond my capacity to think of, but still fresh enough in my memory that I miss it so. I suppose in years to come this will be how I feel about walking.  

I mean, I miss walking "normally" now, but I can still experience a step, step, step.  Running is the same for me. I can't even imagine the whole process of running. After all, my body used to do that for me, but now it has failed me. The body is something that is never reliable, so "you" have to be the reliable for yourself.  It is these simple pleasures that I miss and the continuing loss of these simple pleasures that steal from me.

I've realized I am attracted to people who really use their body, or really, those that use their potential and passion.  

It is important. We think it (mobility) is a right when merely it is a pleasure...a gift...a fleeting one.  Use what you can, and not out of fear of the loss of it or out of pity for those that can't, but because it really is wonderful.  It really is a wonder to move. Inspiration is one thing, but action is a whole different level. If you feel inspired do until "it's like riding a bike".  It is good to feel inspired, but fleeting inspiration is just a desert.  If you never exercise inspiration into change, then it just withers and wastes, like the muscles inside of my body.  

Weekend Repose

Not much to report for this weekend. I pretty much cooked, did work and errands...hmmm, déjà vu from last weekend?  

Just for fun, I am attempting to cook a new dish every weekend. Ever since we visited Thailand last year, I have been wanting to take a crack at cooking some homemade Thai food.  So, I finally did.

This weekend I made some Panang Curry and Som Tam, spicy green papaya salad.  I would say it turned out well and I got it to taste like it would at a restaurant. 

On Saturday night I was all excited to cook, because it was a new challenge. I love anything new that stretches me. Jason sometimes doesn't understand why I love to cook so much and often times, out of concern for my energy, he urges me to be less ambitious or limit myself to one dish. I tell him cooking is my solace, and I want to enjoy it to the best of my ability. Yes, it does require a bit more energy than the average person, but I can still do it.  It is my equivalent to going for a run, for a drive, on a walk, riding a bike...but since these are no longer an option for me I put my energy into other avenues. When I cook it is my time to completely tune out life, start and finish a project, be creative and run purely on my instincts all within a short period of time.  Besides, the advantage of cooking is there is always an immediate receiver that benefits from the project.

Not to be fearful or scared of what will happen in my future, but I sometimes think how much I would adore cooking with my future children...that and running with them while they play soccer or learn to ride their bike for the first time.  

This would be important to me.  I want to teach them so much.  With everything they do I desire for them to go above and beyond the required, and have passion for the areas in life that they deem value for their efforts to rest in. Down the road I might not be able to cook for 20 people anymore or chop my own vegetables or perhaps even move my own fingers, but at least I can teach them to love.  Love what you do and never do anything unless you plan on giving it your 100% in people, in ventures, in aspirations.  Always be curious, always be loving and fear is ok as long as you can move beyond it. Despite it. 

If you notice in the picture there is a black chair. On my really bad days I use this to help me shuffle around the house. Yes, yes I need to get a walker. That is in process. I was recently thinking on how I could increase my coolness and obviously a rollator came instantly to mind. All I need to do is wear old lady sweaters and mutter to myself and I could fit in the senior community center down the street. Oh wait, I already DO wear old lady sweaters and mutter to myself...hmmm.  

Well, I need to get back to work.

Paper Kam

After I drew "In Pieces"I had this idea, "Paper Kam".  Today, I was trying to move a stool and my hand was not cooperating. Felt pretty weak. 

"My hands, fingers, legs feel about as useful as scotch taping strips of paper to my body." I thought.

In Pieces

This is how I feel most of the time...more often than not. Each segment of my body feels like its own entity.  Separate.  My body does not feel like a whole person. 

This morning stimulated this drawing.  Had such a difficult morning.  I want to keep this post short, so won't really go into it, but something I could do 5 days ago is suddenly unbelievably difficult.  It comes and goes.  It frustrates me beyond belief.  I feel like I am dragging around a corpse.  In those difficult moments I am in pieces in every way.

"I could do this yesterday, what is the problem today?"  

Every single limb and joint feels detached. I feel everything that is happening in my body and there is no fluidity.  My elbows, neck, shoulders, each finger joint, toe joints and even my butt muscles are getting so much weaker. I feel like everything is aching to die, and 'they' keep asking me, "Why do you fight us? Just let us go."  

Sometimes, I want to. Let go.  

Since every HIBM patient progresses at different rates, though we all have very similar scenarios and difficulties. I've also realized that we have some unique symptoms. Because of the way we have to compensate and "get creative" with dragging our limbs around just to get through the day, we also form little pains and problems in different areas that are not HIBM related.  

My friend, an hibm patient, says her back is curving inward. I am not sure why. MY joints ache so much. I can feel every real estate of my body and it feels like it is crying out to me all day long, whether it is severe weakness, discomfort, tingling, pain, poking, probing, stiffness, soreness, numbness, tightness, extreme weakness...oh, did I already say weakness? Well, that one deserves a few round of applauses.

When those more than usual moments of weakness pop up, so does the question, "Can you do this?"  My body asks me. I ask me. When I get into those situations that require everything in me to complete -- whether it is moving my leg a speck to the right with my hand, standing up out of my chair, turning a door knob, taking a single step, but can't--I whimper, I grunt, I plead, I sweat, I clench, I hold my stomach in tight, I pray to anything and everything that will listen, use my "good luck charm sayings", and I draw every piece of strength I have in order to complete a single ant sized task.  

And then

AND then

I have to consciously make the decision, a decision that is made several times throughout the day, "Yes, Yes, I can do this" I put together the pieces and move on. That is all we can do. That is all I can do.  There are no magical answers and there is no definitive way to handle it.  

Don't worry about me, though. I know this illustration is a little more "serious", but I am ok. 

Highwire

A Thin Line. This is my current stage. Sometimes I feel like I am walking a very thin line between walking and not walking. I am being pulled in by the waves of the inevitable, and my next (major) milestone is drawing nearer. Sometimes it makes me sad but I have to maintain balance, not only with my physical shell, but on the inside.

Weekend

I'm sitting at my desk doing some work before Monday begins, and Jason is playing Wii's Super Mario 2. He is very happy. Like a little kid. Pippi is knocked out cold and laying right next to him.  

I am feeling pretty good and motivated. I can do this :). This weekend was pretty low key. We achieved necessary errands and I did a bit of cooking. I made a batch of homemade pizza sauce and then homemade pizza right afterwards.  Jason thinks I am insane, but I sort of de-seed my tomatoes to prevent bitterness in the sauce. I love the way my fingers feel between the tomatoes' skin and the way the pulp surrounds them. What a great feeling. The other day I had some DakJuk and wanted to see if I could figure out how to make it, so I made a pot of that, too. DakJuk is pretty much Korean rice porridge.  If you have had Chinese Congee it is that plus chicken noodle soupy flavor.  I made a huge pot and it turned out pretty well. Great for those cold days.  

My tid bit of advice is in EVERYTHING you do add that something little special.  It does matter, even if you are the only one that knows what the added "special" was. 

Today

Today, I'm doing great. Thought I would share.

Raining in My Yukgaejang

Anyone who knows me knows that I have a deep infinity for soup. Jason laughs at me, because wherever we go I have to have soup.

I love everything about it. It is warm, nostalgic and lovely.  

A good bowl of soup always drowns out the frownies.  Soup is especially heroic on those rainy days, even the days it feels rainy inside my body.

This post is actually from November and I finally did an illustration for it. I often tap ideas, thoughts, journal type moments into my iphone notepad.  My iphone contains alot about me. I don't always have a journal book on me, but my iphone is always by my side, so it is convenient.

My iphone is loaded with these random thoughts and moments and I often forget to post them here. The drawing, I tried a Scratchboard method. It is a technique where drawings are created using sharp tools to scrape away at the board. I always liked this. Instead of drawing, you scratch away your image and create negative space.

I remember when I wrote these notes I was having a hard day and suggested to go get some Korean food. I chose Yukejang. Yukejang is a spicy beef soup and yummy to the max. Shredded beef, clear noodles, eggs, green onion all swimming in a pool of homemade broth. This was the post I wrote in my iphone on that day.

November 2010

We rolled into the restaurant and on this particular rainy day I noticed alot of people staring at me. Usually it doesn't bother me, but I seemed to notice it more so today. I wasn't having the best of spirits anyways. Sometimes people stare and sometimes people have better things to do. I like to pretend that they are staring because I am so cool.  Hey, how can I blame them? I would stare, too if I was checking out a really cool person.  

I ordered Yukejang. I like it at this particular restaurant.  The waitress brought me my anticipated soup, and Jason and I were involved in a conversation about how people perceive disabilities...how does it make them feel?...what kind of questions do they have...?

I am always searching to understand how others deal with situations and how they perceive it, because it better helps me to better explain myself.  

The soup was in front of me, and I started crying.  I just couldn't control it. Sometimes it takes over me and I have little control.  I sometimes cry my few minutes, give or take, and then crack a joke and move on, and moving on doesn't happen that swiftly. I tried to shield my face so the people sitting next to me couldn't see me cry.  

At times when I cry, I feel like my insides are pouring out like a bowl of molten soup. I'm not depressed, but sometimes it can bring such sadness.  More than anything I hate the feeling of weakness. I hate FEELING it. My body is a recorder. It lets me feel every moment. This is the thing I hate the most. It has little to do with a wheelchair, yet the knowing that it will not stop and it will only get harder.  I hate that.  

At this point I don't need a cure. I am not resting my laurels on this to make me happy. I would, however, be more than thankful and ecstatic to gain a year back from my body, and stabilize. That is my wish.  To stabilize. Leave me with my fingers, arms and hands. Leave me with my neck capabilities. 

After eating, we wheeled to the car through the pouring rain. And again, so many more stares. Jason threw me into the car while the rain poured so hard that I couldn't even see out of the windows. Or perhaps it was my eyes. They were pouring, too. Most people never see this side of the condition.  They only see the happy. They only see "healthy" and happy pictures and composed poses on Facebook.  It is not a false representation, but there are some really, really dark and difficult moments.

As I stared out the window the city was a blur while the raindrops on the windshield came into crystal clear focus. I played connect the dots with them as they dripped down. I imagined out these raindrop's temporary existence  as well as their travels. We sat in the car for awhile.  I cried and cried.  Afterwards, we drove home.  And then I was ok.

Show 'N Tell

Today, I told myself not to think about it. It is not usually my way to dwell on such things. Usually I press on in any difficult situation, so what is wrong with me lately?  My legs were going numb just from sitting.  I was at at my desk all day drawing and took multiple, on-purpose, breaks to move my legs about and do my little shuffle.  

For some reason I had to use the bathroom a lot today.  As I worked, I was happy and humming.  But, then it calls me. I have to go to the bathroom.  My unpredictable nemesis lately. I struggle to get to the bathroom in fear of not making it in time. I have to worry all the time. I have to feel every move with great difficulty and concentration.  Every step I silently chant to myself, "Don't fall. Don't fall..."   

So, how I can I just forget about it? Previous years it never required AS much thought as it has this year. The progression has been more drastic. 

It finally hit me. I'm not trying to think about it, it just thinks about me all the time.  I am doing my best to (mentally) press on, but in everything I do it calls me. "Pay attention to me".  It consumes so much of my day. Everything I do or even think about doing it's like I have to create a mental plan. A fire escape plan.

"All family members meet in, 'X' marks the spot, please".  

It is a record.  A broken one.  On, and on, and on.  I was thinking of drawing an old record player to illustrate my point, but then thought of the toy/product, 'Show 'N Tell'.  

Show 'N Tell is a Phono Viewer; a combination record player and film strip viewer made by GE in the '60's.  It looks like a little television, but had a record player on top.  The record player tells the story and the slide strip projects images on the TV.  The mechanism for slide advancement is a turntable mechanism, so requires manual rotation.  It was known for its difficulty in aligning, or syncing, the story (record) and the slides (illustration).  

Cool little item for its day, I am sure.  There are several ways I could use Show 'N Tell as an analogy for life and the like. As for HIBM trying to consume my every thought, simply by using its tactics of consuming my every move, I will try to drown it out.  I have too many things to do in life to let it stop me.  Perhaps this will be a power struggle between it and I. Hmmmm...

As I was drawing this illustration, my hands were so shaky.  My lethargic fingers had trouble gripping the pen as I was trying to keep a straight line. I had to intently think of my lines, so much that it felt like I was walking path. I was following the line in my head.  I walked it.  I finally just said, "Screw it", and decided if the line wants to be shaky, then that will be the style.  

With that, Happy New Year! I am excited to give 2011 a run for its money.

Here is a youtube video of the actual product. http://www.youtube.com/watch?v=hgcJV_Shbkg