3am seems to be a friend of mine and knows all my secrets...
In May I drew this (left) right after the "Bike for Kam" project was completed. She's "Stealth Kam", inspired from the guy's late night biking adventures, revines, roadkill and moonlit guidance.
Just to recap, "Bike for Kam" was a grassroots project I did with six of my friends. The goal was to expand awareness for my rare condition and raise funds. I have been involved with ARM (Advancement of Research for Myopathies) since the day I met them and have worked on many projects and events with ARM as a volunteer, but this was the first fundraiser I've done entirely by myself on behalf of ARM.
ARM is a nonprofit organization that has been in motion for over ten years. Founded by HIBM patients it has managed to raise awareness among the scientific and general community, provide grants to labs working on HIBM around the world and founded it's own research lab, HRG, in 2002 where much of the biomaterials that were created there have been used in other labs and scientists. It's important, since HIBM is so rare that it garners little interest from these communities.
The bike project's goal was to do a project that had zero project spending, so 100% of proceeds could go straight to HIBM medical research. With that, we raised over $22,000 online AND through an entirely new community that never or barely knew about HIBM or ARM.
It was a fun project and my hope is to expand this grassroots chapter to the community and to patients in hopes that they will do their own fundraiser within their community. As a small non profit, constantly challenged with resources and very very small volunteer base, I'm looking to help grow involvement. It's the only way we can reach the end.
You can't do anything as well as you could with a team, and many working together towards a common goal is the ultimate beauty. It's easy to be at odds, it's more difficult to come together.
I remember the day the guys left the Golden Gate Bridge heading onwards to PCH, I returned home to a mess of a house from the weekend of 6 guys staying in my place, all the cooking and prepping for the trip. That was such a fun weekend together. I looove a messy house after people have visited and left. I like to look around among the messiness and know that people had fun there, even if I'm tired afterwards, it means my house is being lived in, and what good is a house if it's not constantly open to others?
It's funny I call this one "Stealth", because I'm anything but quiet when I move.
Below are pictures of all the places Lil Kam seen during her ride from San Francisco to Los Angeles. She's tattered, dirty and full of secrets and dreams that she collected as she rode. I made her to travel with my friends since I could not :)
Grab the moon and stars like balloons in the sky.
Sunday seems to be my, "try a new dish", night. This past Sunday I tried making homemade kimchi chigae for the first time. I even made my own banchan (side dish); beansprout (kongnamul muchim) and sesame leaf kimchi (Kkaennip kimchi).
Kimchi is a traditional fermented Korean dish, made of vegetables, cabbage, bean sprouts, daikon, with varied seasonings like garlic, salt, red pepper flakes...Kimchi, in cabbage form, is the ultimate staple in korean food and almost 4,000 years old. Due to its affordability kimchi was cured in small quantities, except the winter months where large quantities were jarred, stored in the ground and could be eaten for 3-4 months, enough to get through the harsh winters. As kimchi rests, like all fermented and pickled foods, and people, it changes.
Throughout generations of the nation for thousands of years kimchi was a counterpart to the traditional korean meal of rice and soup and served daily with every meal. Serving as a side dish, the star of many chigaes, a stew like soup, or other main dishes, kimchi is spicy, smelly, rancid, but oh, so wonderful tasting. It tastes like home to me, which is odd since I was not raised in Korean culture and probably ate my first kimchi (besides my first four years in Korea) when I was 20 years old.
Kimchi Chigae is probably one of my most favorites of chigaes, so naturally I wanted to see if I could make it. Ingredients include kimchi, red pepper paste and powder, scallions, rice cake, tofu, onion, garlic, pork belly. Korean cusine is always accompanied by side dishes (banchan) and eaters can expect to see anywhere from 2 "free" side dishes to 30....yes, I had 30 wonderful side dishes accompany this one meal, in Wonju, when I visited Korea for the first time back in 2002. I was amazed by how much food lined the table while feeling a little guilty that one person could be given so much food when so many have none.
Well, I didn't make 30 side dishes on Sunday, but I did make a couple of my own for the first time. It was fun. These days cooking feels like the only creative thing I get to do. I need to get myself back...
A friend recently told me that I shouldn't post things like my cooking or all the ambitious activities, like skydiving, because it makes me look NOT disabled...after all "normal" people don't even do these things.
"Well, what does a disbaled person look like?" I asked, "because I don't want to look like that--I just want to be me"
I can only be me and while it looks like cooking, or the like, is effortless it's quite the contrary. It takes so much effort and I'm shuffling milimeters to get to where I need to inside my kitchen. It may end with a pretty finished picture of the results, but has nothing to with the results and rather all about the journey within that one, two, three + hour cooking projects.
A few weeks ago I was invited to a Pecha Kuchu Presentation. PechaKucha 20x20, Japanese term for, "chit chat", is a simple presentation format where you show 20 images, each for 20 seconds. The images forward automatically and you talk along to the images. This helps those who talk to much ;), keeping the presentation conscise and forward moving.
Pecha Kucha Night was devised in Tokyo in 2003 as an event for young designers to meet, network, and show their work in public. It has turned into a massive celebration, with events happening in hundreds of cities around the world with San Francisco being the top Pecha Kucha city in the world outside Tokyo where a couple hundred spectators are usually expected to congregate.
The theme was "Grassroots". Huh, I think I know something about that. I decided to use my illustrations for all 20 of my slides. I was running out of time, so unfortunately I didn't get to do many of the drawings I had planned to show for it, but no one knows that besides us ;). With the bike project just closing, and many other things that were waiting for my attention, I was working for a few days drawing till late trying to figure out what I was going to say.
My slides pretty much consisted of me storytelling through how I found out about my condition, what HIBM is, how it could be treated and the bike for kam project I did with my friends. I absolutely didn't feel prepared when I went up. The presentation was on a Monday and so I was working on it over the weekend. I remember towards the end of putting together my presentation it was becoming a little emotionally draining. I had dealt with the bike project, a month + of doing nothing but talking about HIBM, and now I had to do a presentation consisting of very telling and personal drawings. I don't mind talking about it, nor do I want people to hesitate to ask me about it, but it can get heavy at times.
As I draw, it can be a very personal moment. I'm drawing myself and drawing out my feelings as I'm figuring them out. There have been times that I cry while I draw and I only then realize how much I share about myself...parts of me that are still a surprise to me even after all these years. We don't predict that these are "topics" that we will talk about at a later time in life, a topic that seems so foreign to you in one moment and then becomes the most intimate of topics in the next.
I suppose the presentation went well. I was praised for my illustrations and was surprised, since I don't consider myself a "professional". I was told I "elevated the night". That was nice. A nice compliment. When I started drawing myself I honestly didn't expect people would like my illustrations as much as they have.
I have yet to draw other people in my illustrations, because the truth is I struggle with that still. It doesn't come easy to me. I can't whip out characters quickly. I kind of started illustrating on my own without "technical" training, so each drawing is new to me. I've been trying to work on a thank you illustration for my friends who did the bike project, but having a hard time drawing representations of them. I want to draw each of them as boys, print it, frame it and give it to them as a gift, but I only seem to be able to draw myself and my experiences. When I'm drawing myself it doesn't really feel like I'm drawing. It comes easier. It's not "art" to me, I guess. I'm not trying to attach meaning to a drawing, the meaning is behind and during the drawing. It is just what it is without arbitrary depth. It just is and that's it. No need for further poetic explanation. I feel like I'm nine years old sitting at the table, with my sneakers unable to touch the ground, so they sway back and forth to the beat of my pencil and I'm just doodling without thinking. As soon as I start thinking I ruin it.
Later, I looked at photos from the presentation and saw myself in front of a crowd in a wheelchair. It was odd. This would be my very first public presentation in a wheelchair. Not that it matters, it's just new...and I'm constantly changing...and everyone gets to see it...whether I want them to or not.
I ended my speech with, "Sometimes you get to choose your causes, and sometimes they choose you...and it's all in how you respond."
I'll try and upload the video of me presenting. Either when they upload the night to their website or I'll put together my slides and redo my VO over them.
I have some that I need to upload that precedes these, but thought I should post something. Here are a couple cooking projects I gave myself. I don't normally have time to cook during the week , and so I tend to have an itch to make myself try a new dish on the weekend. Some people eat to clear their thoughts, I need to cook to clear them.
Couple weekends ago I made Jason some Anaheim Chili, lime dredged shrimp tacos w/ cilantro slaw and fresh salsa on toasty corn tortilla. Kinda made up my own recipe for this one and it turned out awesome. I really love shrimp tacos. You don't feel so guilty afterwards. ;)
This past Sunday, on a whim, I decided to try Pierogies from scratch. I love Pierogies, but I'm not sure what made me take on the task. I always think, "Oh, this will be easy", but the projects always end up more nvolved than intended. It actually wasn't difficult to make, just time consuming and alot of steps for a Sunday night. But, nevertheless, I was on a mission. After grabbing some ingredients I got home and realized we forgot a couple things, so Jason went to the store to pick them up. While he was gone I started peeling the potatos and it was difficult. My fingers felt so weak and each potato felt like a brick. Peeling 3 potatos took me about 5 minutes...when it should only take 30 seconds.
Well, this is the usual. Everything I do takes twice as long and then pair that up with high standards and you have quite a project. I guess that is why it is meaningful, because so much does go into everything. Nothing is easy, but I'm not prepared to compromise standards. I try not to get upset that it is so glaringly obvious that my arms and hands are so much more weaker than a year ago. My legs had problems, but I could withstand them and crank out a meal for ten as long as it was accompanied by a good amount of stamina. But, now my arms and fingers are getting so weak and it sometimes breaks my heart to think of the possbility of one day no longer being able to cook. This probably wouldn't happen for awhile, but it just requires that much more strength and stamina from me to carry on the task. I guess, I just can't let it go. I love it too much...like alot of things. The love of certain things derived out of losing other abilities, like running and being active, so I improvised and gave my attention to things I could do, like cooking and drawing...but now those things are slowly being taken from me...
I have alot on my mind lately and when that happens I tend to want to put my mind somewhere else, like cooking for example. Cooking is one of my quiet places, it's comforting. My mind is at ease and purely in intution mode. I can't sit still even though that's all my body wants to do, so that is why I gve myself these little projects to keep my mind going and challenged. Plus, it's fun!
Below is my Golubtsis (stuffed cabbage) and Piergoies from scratch. I've never made Pierogies, but they turned out really good. Inside the Piergoies is potato, carmelized minced onion, leeks, garlic mixed with 3 cheeses, ricotta, sharp cheddar and parmesan cheese. It was a fun project, but I was cursing myself by the end of it ;).
It's an icecream; Häagen-Dazs, Ben & Jerry's, Baskin-Robbins, Freaky Ice, Good Humor, Dairy Queen, Edy's, Mother Dairy, Nestle, Stroh's, Schwan's, Pink Berry, Blue Bunny, NOT Healthy Choice icecream kinda day. What a crappy day...It's all crappy, really.
I. HATE. You. HIBM.
With everything I am, I hate you.