Please, Please Come Back

Goodness, it has been awhile since I've posted here.  I haven't been in the mood to tackle the big task of documenting my two weeks in Korea and Thailand but I will...soon.

Meanwhile, I figured I better come back with a new illustration. This is my first scenic illustration. I kind of used a combination of textures and patterns for time and efficiency's sake. I think it explains my current situation of feeling weak post trip, but really my general feeling of wanting something that is slowly and assuredly slipping away.  

As I look at my depleting body all I sincerely want is for it to come back and no amount of acceptance or optimism could ever erase the evanescent fluttering and sincere feeling of wanting something back. 

Above are a couple pictures from my trip. In Korea I visited the orphanages I lived in up until the age of four. I even had the opportunity to meet my foster mom, a woman who despite fostering children for almost 40 years, vividly remembered me.

Thailand was simply wonderful and beautiful. In these pictures, and the numerous pictures that I will post later, I look well and you can't visually tell anything is "wrong".  It all looks effortless, but my body felt terrible most of the trip and with every year that passes traveling becomes harder.

No position; standing, sitting, laying down, is ever comfortable, but these issues have to be overlooked when there is life to live and I feel the efforts are worth it.

The biggest post trip update I have is that I've been trying to get my body back into the routine of walking. After a week of being home from my trip I knew I had to return to habitually walking those 62 steps to my car.

The 62 steps that I dread everyday. I'm definitely struggling right now. I want to be able to do it, but my body does not. Whether I 'want to' or 'not', and it is 'not' these days, I have to keep walking daily. 

My body has my constant attention and it is the things that seem so minuscule that are so very epic to me and my daily life.

Since coming back from my trip I have been trying to get my body back to a walking state. In Korea and Thailand I used a wheelchair for the entire trip and did very little walking. My body adjusted to me not using my legs and I have been fighting physically and emotionally just to get them back to where they were before the trip.

All I want is for it to please, please come back.

Last week I texted Jason, my husband, and shouted, "I walked to my car all by myself!"

On this particular day I managed to stumble to my car without help. It is frustrating that these little accomplishments can consume so much of my day but nevertheless you have to take your victories where you can, however small or large. Small or large is perception anyways. Increments of measurement have a different meaning to me and the small is the big.

That was the only time I made it to my car and the rest of these weeks have been a series of interactions with strangers and neighbors and requesting their help in my effort to continue to walk outside of my house and to my car.

September 22, 2010 I return from my drive and there is no one around and so I wait on the sidewalk for any passing person.  An older lady with salt and pepper hair carrying 2 bags of groceries and wearing a purple corduroy jacket was walking towards me. I asked the stranger those words that are no stranger to me, "Can you help me?" 

Her initial reply was through her face, a look of confusion and why? As I explain and point to my cane, her aha moment turned into a smile and her lending arm got into position.

I grabbed onto her shoulder and for those 30 steps we talked and introduced ourselves.  My hand rested on her faded purple corduroy feeling the warmth and softness of her jacket. "This jacket has seen some years" I thought.

By now sy steps are a 1/3 of my usual steps and my legs feel like they are ready to collapse. They feel like twigs and my body, a house.  

I arrive at the gate, say my thank you and good-byes and do my best to stumble back into the house.

September 23, 2010 I arrive home and my legs are so weak I know I shouldn't dare try and walk those 62 steps alone. Again, I wait near my car for any passerby.  I see two men walking towards me engaged in a conversation. I wonder if I should ask them, but decide not to. I figure I should try to do it by myself and I walk a few steps away from my car. This was a mistake for now I have nothing to hold onto, and now I am just some weird person standing in the middle of the sidewalk.

I try to will my feet to take a step, but my body is too afraid to move and so I stood there frozen for 15 minutes looking for anyone to pass by…My legs might as well been roots in the pavement. They wouldn't.

Waiting…waiting…my legs couldn't stand anymore. 

The two men that walked by earlier return and this time I ask them for help, "Of course. We didn't realized you needed help. You just looked so cool standing on the sidewalk like nothing was wrong." 

As they helped me and watched me walk I could tell their thoughts were in confusion. How could one single step be so hard? How can someone so young have this much difficulty? While they were trying to wrap their brains around it we talked and got to know each other. As they left I could hear them murmur, "I can't believe it."

Last Tuesday I asked my neighbor and new friend, Caro, to come down and walk with me. I dragged my body out of the house and I could just feel my right leg wanting to collapse beneath me.

As I did my steps I held onto the house and each step became smaller than the previous. Does not matter how many times I have trouble walking, the sheer and utter weakness always falls upon me with disbelief.

The weakness is extreme and more than usual. By the time I had arrived at the gate my neighbor came down from upstairs to meet me. 

She is cheerful and bouncy and the sight of her can usually make me smile, but not this day. She asked if I was ok and I turned to her, while trying to desperately hold my body up, with my eyes welling up with tears.  "What's wrong, buddy?" (that's what she calls me). Her face looks concerned and worried. I grab her extended arm and start walking down the sidewalk and every step is followed by streams of tears.

Our 30 something steps to my car are in silence and my face, that is covered in tears, is hung low. We arrive at my car and I turn to her, grab her and sob into her shoulder. 

"I just want it back", I sobbed 

"Or as least keep what I have. I don't know what I am going to do…

I don't think I can handle this getting worse".

It doesn't matter how much time has passed since the beginning of my condition, I still have a hard time believing it.  I go through adapting emotionally and physically just in time to do it all over again for the next stage of progression. Currently, I am stuck in the middle between walking and not and lately I feel like I'd rather not anymore. I'm tired and ready to give up and I just don't want to do it anymore. After having 2 weeks of wheels, and knowing how much easier it could be, I'd rather retire this old tired body.

But, I can't. Not yet. I have to keep going even though I'd rather not walk another one of these draining steps.  

Lately, I ask, "Why?" 

I've never really done that before, because my thought has always been, "Why anyone?" Why am I special not to have struggle, so why NOT me?  

But, it has gotten more difficult and all I want is for it to please, please come back.

Everyday the realization is increasingly unmistakeable and many days I just don't know how I am going to handle it as it continues. I want it back as I experience the the innocence of a pleading child.  I'm doing my best to keep myself going, because every second I can it delays the inevitable - more serious stages.  I cry and then I stop and then I proceed and I cry some more.

It is a fine balance between acceptance and fighting back with optimism. I've accepted it, but I also don't want to give up.  

The other night I took a bath and with my legs dangled outside of the tub I looked at those lifeless legs and my weak arms and said "Legs, I have to learn to love you and we need to work together."  

Since, I've been stretching, doing yoga every morning and night and swimming on the weekends. I hope this post trip weakness will dissipate and what I had will come back.

Even though I would like my whole body to come back to me, I would be happy just for a little to come back. I have a feeling these words will continue to come out of my mouth and even smaller things will become of more significance as I progress. Nevertheless, I don't think I will ever stop missing "it".

The Greatest Part About Leaving is Coming Back

What an amazing trip!! Beyond exhausting, but beyond memorable and worth it.

It took us 26 + hours to get home and I'm very tired, so just a quick post for now.

12 days, 2 countries; made connections with strangers and old friends, reconnecting, traveled through my unknown and forgotten past, experienced tears, joys, laughter, adventure and what was already a close friendship purely through emails and shared experience became even more kindered spirits through a weekend under the blazing Thai sun.  

Not bad for booking this trip only 6 weeks ago in what was supposed to be a vacation AWAY from life. Give me a week or so and I'll post all about it. Took TONS of picture, journal and video.

Must go to sleep right now. :)

The greatest part about leaving is coming back.

Let's Go Red

I decided to dye my hair red. This is the second time I've ever dyed it and my first time was last year.

First blonde and now red...I think I like the red, but let's see who has more fun (blonde vs. red ;).  

I am not the fashionable type, I never really had the flair for it, at least in my mind, but the older I get, the more I want to experiment and try new things.  It is funny, because changing something little really does change your personality. I feel sassier, as if I needed help with that.

¡¿QUÉ?¡

For now, since I am working freelance from home, I try to get myself out of the house for a couple hours every day. I walk my '136 Kam' steps to my car and then take a little drive. This helps me continue walking confidence and these days I am trying to hold on as much as I can for as long as I can.

I have to be honest, every day when I go for my little walk to the car, I have to take deep breaths and psyche myself out. I walk the path (my walking path on video-click here to watch) along the house and then I get to the gate, stop, take a deep breath and then walk the rest of the path. There is no rail or wall for me to hang onto so I have to walk this part without assistance. Same for when I arrive home. I get out of my car and sometimes stand near my car for a few minutes staring at the path to the gate (54 steps) just dreading it. I tend to internal monologue while I walk. I cheer myself on, um...anything to get myself through.  Every step is always an adventure.

Last week I went on my usual daily walk but this time I fell on the sidewalk near my car. I think I twisted my foot slightly, but other than that nothing major was hurt except for skinned arms (Kam fact, I loved bruises, scars, skinned knees as a kid. Still do).

As of 2 years ago I absolutely can't get up off the ground by myself. Someone has to lift my lifeless body and if there is no one with me -- well, I have to depend on the kindness of strangers.

So, there I was. I was on the ground with my body hanging over the sloped angle of the driveway with my head laying flat on the ground. "Ughh, I hate this".

I lifted my head up and peaked around the neighborhood. Some landscape guys across the street looked at me in confusion and were teetering on their feet as if deciding to come or not. 

Good thing I know Spanish and so I shouted, "Could you come help me?", in English.  

One of the men darted to me. I tried to explain how to lift and we spent a few minutes dancing around the situation, but he couldn't speak english well. So I broke out my mime skills (it's ok. miming in defense, and not as a weapon, is within mime code. Kind of like Karate).  

Normally the best way to lift me is from behind under the arm pits, and whomever is lifting needs to with all their might expecting no assistance from me. 

He lifted, I fell. He lifted, I fell until we finally did it (Hooray! Just like Dora). 

The way he lifted was funny, though. He in no way tried to avoid...well, the boobs. He definitely had a FIRM and good grip. Most people that lift do their best to avoid the chest. It wasn't too creepy or assault like, he just didn't avoid it as well. Well, good for him, I say. After he got me up, I dusted myself off, got into my car and texted Jason.

Kam: Just fell. Some landscape guy helped me up. Pretty much didn't avoid my boobs.

Jason: Sorry u fell. Was it inappropriate?

Kam: Who cares!! I'm up! ;)

As I have progressed I rely more and more on help and this means strangers to. With every person I meet, whether it is in passing or someone that ends up staying in my life, I have to be the teacher. I need to show them how best to do certain things, such as lifting me. I try to be comfortable about it so that they are comfortable, because I imagine it is awkward for them. It is not that they don't want to help, they just don't know how to. I also have to heavily rely on strangers. Some are not so great, as they ignore me and walk on by, but most I've found are eager about helping someone in need.  

You also have to lose alot of your pride and modesty and go with the flow. With each new person that I come across, whether I want to or not, it is like I am quickly introducing myself and inviting them into a very private part of my life. Because of these very 'intimate', vulnerable moments it is like I am developing a relationship with each person that has helped me, and funny or meaningful moments occur uniquely with each of them --- whether it is a friend or a 'grabby' stranger, I remember all of them...

Now that it is routine to accept help, I am not bashful about asking for it. So, yea, the landscaper felt me up a little, but at least I am up ;).

When I got home the guy who had helped me was gone, but his landscaping partner, who had also seen me fell, was still working. I parked and was then anxiously greeted by his colleague who asked to help me back to the gate. I didn't fall this time, so ubfortunately for him he didn't get to accidenty graze my boobs;), but let's just say he is not the first to "accidentally" grab my chest. It happens, it is unavoidable.

I did a quick - more in depth comic this time (pic above).  I want to show myself in situations where I have great difficulty, but then my super-human self gets right back up with grace and style She has all the physical capabilities and flashes a smile. Then the comic cuts back to the reality; the reality of clumsily trying to figure out how to get myself out of situations that require SIMPLE human strength. 

The reality is, it is not that funny when I am experiencing it and at times I feel helpless and it is extremely lonely and testing.

I have to say it has been fun teaching myself how to draw characters as well as storytelling through series of images.  Because I don't have much time to labor over a drawing generally, I like to keep them simple with little rendering. When I work I like to get an idea out quickly and then move on to the next idea, which is way I don't actually care for the rendering process as much.

When I am designing a product, for example, I like the sketchy development stage the best. This is where I 'throw up' all my ideas onto a piece of paper, and so envisioning the main idea is my favorite part of the process.

So, for these little comics, I'd rather do many simple sketches rather than a few that take forever to render. I am still searching for my illustration style which will be an ever-growing one. For this one, though, I added a little color and more panels. It actually didn't take that long and I kept it loose. I also included my "scribble" page.

I scribble a basic idea on paper then bring it into digital and complete there.

 

 

A Little Bit of Old, a Little Bit of New, a Little Bit of Insomnia

It is midnight. I fell asleep for about an hour and woke up feeling bored. This happens to me quite often...I get bored of sleeping. I thought I would share what I did to keep myself entertained through the night (from 12:17-5:25am), or rather what I watched. So, as I watch a movie I will post it here. It will be as if we watched it together...awwww, now isn't that sweet--just don't hog the blankets ;).

Update: I ended up watching 2 movies, 1 animated feature, and 1 really short film.

12:17 am. I started out with World Builder, created by Bruce Branit. Shot in a single day, but took 2 years in post production, World Builder is a short 9 min film about a gesture of love by a strange man who creates a holographic world for a woman in a coma. In the end the 'world' dematerializes lasting only moments and the program ends.  The entire film (except for the actors) is computer graphics. I didn't see this before Inception, but perhaps Nolan was inspired from this?? Not quite sure. The CG was obviously amazing, but to be honest the beginning felt like a visual effects commercial showing off the capabilities of companies' computer graphics system.  This may only be the case to me, because the way the film's main character builds the world is the way you would build it in a computer...more or less.  Some of it may also be the camera angles.  Nevertheless, very cool and sweet; creating a world for someone who is not 'there' - all in 9 minutes. More short films please.  What I like most about these low budget films is hey, it shows one doesn't need to have this mucho over produced films with crazy amount of money being thrown around to communicate a message. I guess this film only cost $2000 plus  Branit's love and time in the graphics editing room.

I posted this  World Builder short film video in my "microblog" tab, so watch it---it will only be 9 minutes of your time. I haven't posted much in my microblog, but I should. I'll try. I wanted to use that tab as a place to put cool designs, ideas,  videos...etc., but haven't yet. (continue reading)

12:31 am. Then I watched a Godard 60's film, Vivre sa vie (To Live her Life) starring the very pretty, Anne Karina - love her hair, a look that is very Pulp Fiction, or rather vice versa. It's a film about a Parisian woman who leaves her marriage and children to pursue an acting career, but finds herself in prostitution. She feels these series of decisions are of that of her own free will, but is it?  Free will versus social predetermination. Like usual, he references pop culture, politics, philosophy; existentialism being his fav, etc, but it is 4 in the morning, so I'd probably have to watch it again to pick up on all the references, though not really posting here to be a movie critic. Cinematography is great and experimental much like his, À bout de souffle (Breathless). Honestly, I would have to watch both again to see which one I liked better of the two, but did like this one.

 2:09 am. Then came Independent film, Children of Invention. To be honest I was doing some work during this one and didn't watch every bit, but it is good enough for me to revisit at another time.  Pretty much an illegal immigrant mother whose part of the working poor of America. She is trying to keep things financially together for her 2 young children and gets involved in bad business ventures/Ponzi schemes which leads to her disappearance. Her two children are forced to make it on their own and the oldest sibling, Raymond,  resorts to creative, inventions and gadgets to take care of his little sister . The harsh adult world on 2 young ones...I did love the nuances of their naivety and desperation--it is endearing and cute, but kinda tugs at your heart strings. There is this one scene where Raymond blows on the credit card so he can use the ATM-as if he is blowing a nintendo game cartridge. It's funny how the mom and son are one in the same. Both are naive in different ways and both reaching out for quick fixes/schemes in order to survive.

3:43 am. and lastly, Triplets of Bellville, an animation I go back to again and again. I truly love Triplets of Bellville and really respect traditional animation and the love that goes into such a craft. The story centers on Madam Souza and her grandson, Champion; a sad and lonely young boy with deceased parents. In efforts to cheer him up she gets him a puppy, Bruno and later a tricycle. As he grows up he becomes a professional cyclist, like his deceased parents were, with grandma Souza as his coach. He later enters the Tour de France, but then is kidnapped by Mafia Henchmen. Grandma Souza, Bruno, and the Triplets of Bellville- the 1930s singers that she recruits along the way, go on an epic rescue and find adventure.  I would say the film is almost entirely silent animation which you would think would be a problem, but it is so not. It is a conscious design decision and an aged, almost retro, song and dance story telling. The characters are fun and so well designed that you can feel the character's weight and movement---like with Champion who has an aloof, long, gangly and slow feel to him.  I think that is what is amazing about animation--.to be able to achieve such realism of an envisioned character's movement style, facial expressions and overall consistent demeanor is not an easy feat and requires much real-life observation on the designer's part. I love watching Champion's body when he rides a bicycle---you can just feel his every push and leg stroke when he rides the bicycle. Anyways, a great animation, I promise.

SO, we have a mob chasing after a gangly cyclist and the mob being chased by a stocky short grandma, bloodhound and 3 leggy, crazy 1930's hall singers...a mystery man creating an holographic world for a comatose loved one... a tragic case study of a mother/wife,  with super cool 60's hair-mind you, and her descent into prostitution...and 2 cute adorable little chinese kids using invention to try and survive in an adult world...

What can we learn from all this? that it is time for bed. Good morning. :)

Oh, and Jason slept through it all. I could light a firecracker and he wouldn't wake up ;) Incidently, it is almost time for me to wake him up for work. Yes, I make sure he wakes up every morning.

Power-Up with Love

I tried to approximately recollect when particular and significant loss of function has taken place over the course of my condition.

I jotted these major milestones into a simple graphic timeline to help visually tell the story.

After completing - it was even strange for me to see it all in one image. The progression happens so slow and so I am not always aware of it.

I was thinking of video games (and how cool 8BIT is ;) and in video games you collect things, make decisions, explore, discover, gain energy, lose energy and progress through levels, and so for this post I am represented as that 8 BIT stick person ;).

Some of these stages have been truly humbling and there are times when I have learnt to just let go of myself. Through each level I progressively debilitate; I lose my physical capabilities, but also gain, too. At each stage I have gained more and more understanding, perspective, empathy, courage and that is my "heart meter".

Sometimes this experience makes me want to draw inward and I don't want to share and be open. I don't want to spend all my spare time working with ARM or spreading awareness about HIBM. I want to worry about me and me alone and have less accountability.

But, I can't help it and I can't ignore it. It is too humbling and revealing to do that. Growth is not always easy and I feel it pulling at me even when I don't want to join. It is an emotional, sometimes painful, part of my life and the struggle seeps deep inside.  

Because of that, because of the constant loss, it is that that compels me to want to share, to be open, feel empathy and to push myself.  I can't help but put empathy and passion into EVERYTHING I do, because I REALLY DO care that much, because it REALLY DOES hurt that much. It is the purest emotion, besides love, that I can feel.  

It is love and lessons learned that drive me forward and why I do the things that I do and part of why I am who I am.

Complete one level and then there is another. 

"It is something that grows over time...A feeling in the heart that becomes stronger even stronger over time. The passion will soon blossom into a righteous power and through it, you will know which way to go"  

--Zelda, N64 videogame

"Time passes, people move. Like a river's flow, it never ends. A childish mind will turn to a noble ambition. Young love will become deep affection. The clear water's surface reflects growth. Now listen to the Serenade of water to reflect upon yourself."

--Zelda, N64 videogame

Videogame, Legends of Zelda, was created by Shigeru Miyamoto.  Much of his work like, Zelda, Mario, Star Fox, Animal Crossing, were inspired by his exploration bouts as a child.

As a young boy, I guess he loved to explore secluded lakes, caves and hillsides in his hometown, Kyoto Japan.  Apparently he came across a cave and after much hesitation he went in, with a lantern as his guide, and this exploration is what inspired the Zelda concept.

See, you never know where your passions or life experiences can/will lead you. Happy hunting.

Cooking with Kam

The other day I made Sole Meuniere Almondine w/Confit Byaldi (aka Ratatouilee).

Since moving to Northern Cali I don't really go to the grocery store by myself anymore. I should, but I guess I am afraid of falling. I mentioned before that new areas, which include new stores, take time for me to adjust to. I have to get used to the layout and every new place it's like my feet and legs need to be properly introduced so they can memorize every detail.

I have find a store, Berkeley Bowl, that I love because parking is right next to the door and there isn't curb for me to have to climb over.

Yay!!

I was cooking my Confit Byaldi and realized my eggplant was too big compared to the other veggies. Knowing that the dish took 2.5 hours just to bake, I couldn't wait for Jason to come home for him to pick up the Japanese Eggplant (more appropriately sized than regular eggplant) and so I went to Berkeley Bowl by myself.

Man, my legs were tired that day. I got out of my car and into the grocery store and thought, "Perhaps this was a bad idea to come alone."

I know I need to get out there more by myself. I think I lose confidence when I start depending on help. Currently I design from home and therefore don't walk around as much as I should. The store is approximately 250 Kam steps from one end to the other and I was pretty tired afterwards.

I came home and finished cooking a meal that was probably too time consuming for a weekday, but had fun! I also watched Ratatouilee while I cooked ;)  

Had a bunch of veggies left from the Ratatouilee, so I made homemade vegetable soup the next day. I don't know why, but I have this deep infinity for soup. I love soup.

I LOVE to cook. I suppose I have been cooking since I was young, but it was moreso baking that I did alot of as a child. I started dabbing more in actual cooking in college and would cook for friends here and there.

But, I think I really started cooking when I came to Los Angeles 3 years ago. I am from Michigan and after College, on a whim, I decided to trek out to Cali to look for career opportunities. I was staying with friends and as a way to "pay" them back I cooked ALOT for them. That is really when I started cooking and through the years I have really fallen in love with it.

I soon realized that it was exactly like a design process. I'm an Industrial Designer by education and I always say how lucky I am to have a career that happens to be something I really love and am really passionate about. Design is all about proportion, balance, vision, problem solving, execution...etc. All the things I love about the design process is pretty much like cooking. Cooking is like a mini design project for me where I get to: envision, plan, budget, execute, create proportion, layers and balance and most importantly, just like design, cooking is centered around people.

I think that is what I love the most about it - the end result is about the people. While cooking I'm completely engrossed and it is probably the only activity where my BRAIN completely shuts off.

It is similar to when I draw/design and get into that zone. I don't think about a thing and my instincts kick in.  It is not a chore to me, but a joy. I'm not trained in cooking, nor a foodie, but I think most things have a similar system applied to it and as long as you know those basic principles you can probably make the connection in learning how to do most things. 

Food makes people happy; creating community and a shared experience and when I have the opportunity to cook for others it is really me extending love. I like my house filled with people, believe in open door policy and I like it when they treat my home as their own.

It is odd, because I would say I am the career oriented type, though when the right time approaches I can't wait to teach my future children all sorts of cool things but at the same time I have these old fashion qualities, like the way I view cooking. I may have gotten some of these characteristics from my grandma. As a child I remember that her house was always filled with people and how much she enjoyed that and now I too am the same way.

As the years go by cooking becomes more difficult. My sous chef is Jason, my husband and he is my teammate when I need him and even at times when I don't. When I am cooking for a big party he is my arms and legs and I would not be able to do all the heavy work and thus the cooking without him. I enjoy cooking and appreciate that I can still physically do it in this stage of the condition. It kills me to think that perhaps one day I won't be able to cook anymore, but for now - no worries - I will continue to love doing it and simply enjoy that I can.

So, happy cooking!! May you feel inspired!

Little by Little One Walks Far

I've been busy with projects so posts here may be sparse for the next week or so. I thought at least I'd share my mood.

Today, I feel like I can do anything and everything, and I just may ;).  The weather is beautiful and like usual my mind is spinning with motivation, ideas and projects.

Whenever I think about life I'm excited to think of all the potential ways it could be filled. I want to do so much and wish I had more hands to achieve every single one of them. I hope the future is filled with unanticipated experience and adventure.

"Little by little one walks far"

Road Trip Karaoke

On our last drive back from Los Angeles (from the ARM fundraising Gala), I recorded some silliness for fun and then, well, Jason thought I should post it here.  We were very tired from the event and found it hard to stay awake on our 7 hour drive home.  Some car karaoke, and random nothingness spilling from my mouth seemed to help us out. Didn't plan to post, but why not share? 

The other day I was talking to a patient and she said now that she realizes that a cure could happen in our lifetime, she felt like she had her life back. Though I understand this feeling it also made me a little sad that they felt like their life was ever gone. I know sometimes it feels like it, but life is never gone. 

Remember, every day your life has just begun. So cheesy...yea, but true.  Sometimes I worry where my condition is going and as it progresses the reality hits more and more.  However, I think my greatest fear of potentially being in a bedridden state is that I would lose my sense of humor,  spirit, and motivation.  

It is hard to imagine that if far in the future I were ever to become completely debilitated; not able to write, type, feed myself, that I could maintain a positive state of mind and a heart full of will. The body is one thing, but losing yourself is entirely different.

It is the losing myself, and not necessarily my physicality, that I fear the most.   If I don't care about life then what good is my body?

It may seem like I am chasing after a cure, but that is not the entire picture.  Because I know a cure is achievable, and in ten years when, and IF, I am further progressed or debilitated, I don't want to look back and say I didn't do anything to help myself or others.  I am not a big fan of regret, which is why if I feel passionate or compelled about something, I do it.  However, WITH that, cure or no cure I'm going to keep going...this is my hope. I don't want to forget to chase myself,  remember to see the humor and get everything I can out of life... If that ever away that is when I would truly become debilitated. 

I think I had recorded a few hours of my random stupid "jokes"and singing, if that is what you would call it, and managed to cut it down to 8 minutes. :D 

*note, if it looks like I am being mean to Jason it is sarcasm and well, it is just OUR way. We like to poke fun at each other. It is mostly me doing the poking, though ;).

Kam Gets Her Ramp and Walking with Kam

Walking with Kam: 136 steps

In March Jason and I moved to Northern Cali from Southern Cali. For me I love change, but my body can be a little more picky about these things.

With any little change in my routine I can physically go through alot.

It sounds strange, but something as simple as walking a new kind of path really changes how I have to do things. It is not that I can't do it, I just have to learn a new way to accomplish something as simple as walking to my car or adjust to longer walking distances.

In this video I share my 136 steps.  I know every slight incline, decline, crack --everything about this path. I thought it would be helpful to use video to demonstrate something as simple as walking to my car.

When I was editing this it is actually was very hard for me to watch myself walk. To me I don't feel the progression, because it happens over a period of time, and I don't realize that my walking gait has got so bad.  When I see how much I am struggling it is like I am seeing myself for the first time and that  I'm  not really walking, yet dragging my body from destination to destination...well, at least I'm doing it in style ;).  

This video was taken at the end of May, so by now I have adjusted to the path pretty nicely. 

This ramp actually came at the end of May, but just posting now. I was soooooo happy when I received this in the mail and it makes such a difference in how I can function on a day to day life. Prior to the ramp I literally couldn't get back into my place.  My husband works from really early to late and I am in between jobs since we moved here, so I've been working from home for now. I've had to stay in my house, because though I could get out of the door (very carefully) when I would return home I couldn't lift my leg to get over that little 3" rise.  If my upstairs neighbors were not there, I was pretty much stuck in my house.

Now for me, this is just about the worst thing ever. I love being on the go and I always need to be doing something to keep my active mind preoccupied. I wish I didn't, but I need constant stimulation and challenge and feeling confined in the house is just about the worst thing for me.  

Feeling like you are trapped in a house, in a new city, where you barely know anyone is really difficult.  So, yes, this ramp was awesome and since I am in and out of my house all the time :D.  It is the little things that mean alot.  Since having the ramp my quality of life improved and I feel like I have a little more independence.  

**note, watch the video till the end.

Every Day Is a Journey, and the Journey Itself Is Home

I'm guessing my biggest reader is probably my husband. It is insightful to him, but overall he knows me and doesn't get to upset or alarmed about my posts. The previous post, "On This Sunny Day", he told me he read it, but then today he said after reading that post a few more times it made him a little sad. 

I don't want my blog to be sad, but I guess I can't always avoid that because I do experience periods of sadness. My intention is I want to be honest and straightforward. I think that is the only way to be.  It certainly is not intended for the reaction of pity, though. I've said it before and will probably say it many more times here, but pity is terrible. When someone pities something it means they don't understand it.

This is life. It is sometimes happy, sometimes sad, sometimes quiet, sometimes chaotic, sometimes easy, sometimes difficult, sometimes lonely and sometimes not, but always always a journey, and no matter how difficult - I think I would rather experience difficulties than live a life of complacency. 

"Every day is a journey, and the journey itself is home." ~Matsuo Basho, 17th century Japanese Poet

With that, I'm finishing up editing on a couple videos that I've been meaning to upload here. I'm trying to catch up on many things, so I try to post here when I can. As I'm working I'm listening to Best Coast, 'Make you mine' and 'Wish he was you'. They are an American Indie Rock duo in LA, Cali and I guess categorized as garage rock/surf pop. I like them, because they sound like nostalgic summer to me. :)

On This Sunny Day

I spotted two young girls at a crosswalk waiting to cross the street. Their body language told me they were waiting for their opportunity to out-dash a car.

Their bodies were arched, their knees bent and their heads lowered. I slowed down so they could cross.

This main street I drive (in San Francisco) is pretty much 30mph throughout. In California, whether there is a light or not, white stripes, not necessarily at intersections, signify drivers are expected to stop for any pedestrians that choose to cross at any given time.

The two girls were around 18, smiling and holding hands. When I stopped they darted across the walkway and giggled as though they had some secret to life. I watched as they skipped across the street and the corners of my eyes began to dampen.

I sobbed. I miss it. So much.  My eyes began to well up and my water covered eyes could only catch glimpses of the sun. 

No matter how "ok" I may feel and know that my condition is not the "end of the world" or that it is not THE limiting factor of my life and/or what I can do, I think you never get over the loss of something as fundamental as running or walking, or if you are further progressed, function in your fingers or hands.

This is particularly so when this loss is constantly happening.  At every stage of loss there is a new process of adapting and understanding.  It is a constant journey and sometimes this lamenting of loss pops up without warning. I miss "you".  At that crosswalk, for a second and for the first time, I suddenly didn't know who I was. 

"How did this happen?"

I don't know this body and my outside doesn't feel like my inside.  I don't remember you and I want "you" back so bad.  As much as I/we are aware that we are more than this body I don't think anyone can help missing it and I don't think anything is wrong with missing what you've "lost" as long as it doesn't take over your life.  

I am not tied to it or feel less than because of it, and I continue my life despite it, and sometimes because of it BUT with every part of myself, I still miss "you". So very much.

I came home from my afternoon drive and walked the very lengthy (136 steps) from my car to my door and peeped through the window. There she was wagging her tail patiently waiting for me to open the door. I smiled at my Pippi...and then I was fine.

I love her innocence and her view of the world.  All she wants is to be loved. When Jason and I adopted Pippi from the shelter I don't think we necessarily thought it was for companionship or affection.  We both grew up around dogs and we thought rescuing a little one would be a good thing.

I love seeing life through her eyes. She is one of the few constants in my life.

My First Video Post

Recently I bought a little camcorder, so I can do little recordings and share aspects that may not be as easy to understand in writing. 

If I'm rambling in this video it is because I don't like being on camera. I think I've said it, but I truly hate being recorded. I always have.

I think when I was young I was self-conscious about my voice, but the recent reason is I don't particularly like seeing myself walk.

Since I live with my condition on a daily basis sometimes I don't realize how I've progressed I am and so I remember myself differently so at times it can be difficult to see the reality. I sometimes only realize the progression when an everyday activity that I used to be able to do, like climbing stairs, typing or rising from a seated position, suddenly becomes difficult to non-existent.

BUT, I think visuals will help to understand the condition more. Plus, the more years I live with this condition, the more I grow and become more secure in myself and care less about what others think...most of the time.

So, for my first video post I thought it would be fitting to introduce my "team". The team I need to help me get around on a daily basis.  My cane, Clarice (Silence of the Pambs?), my orthotics, George and Charlie, and last but not least my shoes, Sandies are what I need to live my daily life.

Shoes are especially difficult. There are so many requirements and I detest searching for shoes, so I normally don't care and wear the same ones all the time.

Shoe requirements: need to be light in weight, supportive (specific arrangement of straps), wide enough to accommodate my orthotics and absolutely no heels. 

Let's see how the video posts go. Hopefully they will get better as we go along ;)

Back to LA for ARM's Fundraising Gala

I'm working on some last minute work for the ARM Gala and we are scrambling to get people to come to the event.

I guess history says that people buy their tickets at the last minute and that is what I am hoping for. 

I am packing and getting some files together for the Gala power point. Jason gets home from work at 8pm and then we will head to LA, which means we will get into LA around 2/3am. I'm pretty tired, I must say and I am hoping to have some sort of a weekend vacation after this Gala is done.

This entire year I have not had any fun, breaks or vacation. In February we left Los Angeles, left my job, and moved to Northern Cali and since it has been about physically adjusting. We don't really have friends or family up here, except our upstairs neighbors, and accessibility has been difficult.

I haven't had a chance to put my portfolio together because of all the ARM stuff as well as other things, but after the Gala I need to finish that, so I can get back out in the world.

Perhaps I can squeeze in a weekend getaway soon...I sooooooo need it.

I'm also converting some video posts and I hope to upload them here before I head to LA tonight. I bought a little camcorder to record some of my everyday physical struggles.

Ok, well wish us luck at the Gala. I will post pictures when I get back. :)