I haven't posted here in awhile but so much has been happening. I'll be back soon.
Meanwhile, visit www.bikeforkam to see what I've been up to. Bike for Kam 500 mile trek has begun! My friends are biking up a mountain as we speak, and I'm stuck on the toilet trying to get up.
I'm resting and will give it another go in just a minute here...
Couple days ago I finished drawing out these tshirts.
Front and back version; a bike coming and going. A company is screen printing out the team's shirts, but I wanted to make them available if anyone else wanted to buy and wear them the week of the ride.
So, if you are interested you can get them on cafepress.com. I've never used this website and these are my first t-shirts I've sold online.
I think I may start designing some other t-shirts, though I really hate how much of the profits cafepress gets. Smart company.
Here's the link to buy. I didn't really mark them up for profit because I wanted people to actually buy them. So, $2 commission sales on all shirts goes directly to ‘Bike for Kam’ fundraising project.
Purchase Bike for Kam T-shirt Today on CafePress (click here)
Other than that I have alot to say but not feeling particularly eloquent right now. Not that I usually am, but for this one I'll just be spouting out facts.
Bike for Kam is going well. We are nearing our 50% mark with $9,256 raised. That's great! Thanks to all who have been supporting.
The fundraising is great, but a whole new audience has been building. People who didn't know about HIBM know about it now, and that is more important in many ways. Building that audience. Sometimes it feels like a very slow process and you have to do alot for a little, but patience is virtue. Sometimes the work and waiting has to be at other's pace and not your own.
Besides, we are knew to this. I have been helping ARM for years, but Bike for Kam has been a one man band in terms of all the logistic work. It's not like I can just take a break because there are emails or papers waiting to be replied to. I have to keep in it to keep the project moving forward. Fortunately I have some passionate and fun guys to keep me going because I feel broken down and provincial at times.
It's not like building campaigns, websites, PR and strategy is my background or something I'm well versed at. I'm kind of just learning as I go and follow my instincts.
Just because something isn't your profession doesn't mean you can't learn it and so I try. I try not to get caught up in what I don't know and just do. I'm probably doing alot of things wrong, but when you are the only one doing it you do the best you can.
I feel like I've been working on this project for forever even though donation lines have really only been open for what? 2 weeks? It's tiring and in many ways worse than a fulltime job. I have to be on call for emails, constantly sending out emails, PR, updating website, know the status of project and next steps and then as mentioned in the previous post -- it's emotionally taxing.
After all, I'm not just some hired PR or marketing person attached to a project, I'm attached to my own, .to myself, to others like myself with this condition. Being "with" yourself is draining and I think most of us do alot of work to distract this from happennig. But, alas it's not the case for me. So, it's tiring. I'm also working on other projects and in the job interview playground. April has been an unusually busy month. Bike project, job stuff, visitors every week/end coming and going for the month of April. It's all good things, though.
I had a friend in town for a week. My friend of nine years. It was tiring but wonderful having her here stay with me. We don't talk or see each other on a consistent basis, but we just pick up where we left off whenever we see each other. It's one of those friendships where I can completely be myself and don't actually need to play "host".
She has known me for many years which means throughtout the years she has witnessed the progression of HIBM. We reminisced the first time she saw me. I was wearing a knee length black skirt and high heels.
Skirt? Heels? What are those? I can't even imagine wearing heels. We had a great time, though. Non-stop laughing during her visit. Laying in my bed putting on mud masks and cooking for each other each night. She was wonderful at helping, too. She could lift me and I was surprised since she is shorter than I.
In our more serious and intimate conversations she expressed that she was sad that "this" was happening. Not pity sad. Just out of love, sad. Alot of people don't get to see that struggle or when I cry. They just see my facebook picture which is always followed by the comment, "You look great", as if that fact is what makes it difficult to make the connection that yes, something seriously is wrong with my body. I don't feel great. My body is my constant alarm clock on an epic snooze cycle.
She said she was proud of me. I miss her. I miss having my close friends around me. I was sad when she left as the house instantly became quiet again. I love a full house and I love the kitchen in constant use.
This weekend a couple of the guys from LA dropped off their bikes so it's one last thing to worry about next weekend. One more week until the guys hit the coast!
Can't believe it and they are totally geeked. I'm looking forward to our pre-bike hangout next Saturday. They are all flying in and I am going to cook them a ton of food before I pat them on their butts and push them out the door.
Ok, no patting involved, but there will be food! It's nice to see them so passionate, especially about something that not only benefits themselves but others too. They've been great and though they are new to this fundraising world they have been sticking with it.
Those are all stories in themselves, but I'm too tired to type it out. It was good that the guys happened to be in town the same weekend that Jason was out. He flew back home for a funeral and since I am not used to being alone for long stretches it was a challenge. But, I was just really careful and I found most of my day was taken up with cooking a meal, washing dishes and getting dressed :/.
Man, I'm slow. ;)
I'm trying to get back to my personal illusrations. Haven't really done one in a month. Now, I feel like I'm rambling so I think it means I should shut the computer off. If you are reading this keep passing our bikeforkam.com project on and thanks for all the support. :)
A week ago I turned 32. I decided to celebrate getting younger by going skydiving! It's been something I've always wanted to do, but my fear of heights slowed down me pulling the trigger.
Well, if you want to do something you should do it today and so I figured, why not? Today is as good of a day as any. Two weeks before my birthday I decided to do it and started calling around to different skydiving facilities. There is a little more prep work for someone like me. I need to make sure they can handle and accommodate someone with physical impairments.
I'm a researcher. It's my nature. I like to look for the best deals combined with best service or quality. I read about Norcal skydiving and they had the best rates and also the best reviews. I was most attracted to their reviews of how funny and cool the Norcal guys are. "Hey, I like funny, this place could be for me."
Surprisingly, I didn't obsess over the upcoming event and wasn't too scared until I got onto the plane, that is.
For the weekend of my birthday we went to the wine country Sonoma, rested, ate some good food and then I flew with the birdies. Definitely one of my better birthdays as I'm usually not into big celebrations or spending alot of money on an event for myself.
We arrived at Cloverdale airport at 10 in the morning. I was pretty tired because I only had 2 hours of sleep the night prior and we had to wake up early to make it to the port that was an hour from us. Good thing we didn't go too crazy with the wine on Saturday night.
Anyways, we get there and then it became real. We hung out in the hanger with the staff -- a bunch of really cool guys who love extreme things. I rolled up waiting for my next turn and Greg, my tandem came out pointing at me while saying, "You're next" while tending to his next victim.
Hmm, I like him already. We hung out for awhile, got my gear on and waited while watching the others come in for landing.
"Hmmm, looks easy enough. Almost graceful and serene how they land." I thought.
Then it was my turn. Mark, my camera man and Greg, my tandem, escorted me to my little plane.
They had to tie my feet up so Greg could have full control of my legs during the dive, and then, and then there was no turning back. The plane ride up was about 20 minutes. I started getting nervous when the plane took off and I could hear the loud clattering of the metal bird.
I think Greg and Mark could tell I was getting nervous, so were very supportive and wonderful about it all. It wasn't just about the jump, though. I started thinking about everything and the last 32 years of my life and how I got from point A to B. And how really this is the least scary thing I have to face in my life. I told Greg and Mark about my condition with a slightly teary voice and then I got quiet. All of a sudden the girl that wouldn't stop talking or making jokes had nothing to say on the airplane. It was a quiet and contemplative ride up. I had nothing to worry about with the jump, because I trusted the guys and they were just so sweet.
But, then the doors flung open and Mark instructed me to look to the right at the camera, smile and then turn my head to the left for the jump.
Yea, right. I had no thoughts about smiling to the camera. My legs were hanging off the edge of the plane and I looked down at the world beneath me and thought "Oh Shit!".
Greg did his count, "1,2,3" ...ahhhhhhhh. He jumped and the whole world was spinning around me. I had no idea where I was as everything looked the same around me. The wind was intense and I couldn't even see Mark. I think my goggles were super tight, too. Greg tapped my shoulders as cue to lift my arms like a bird. I couldn't believe it, I was flying in the sky.
Free falling was about a minute and the parachute ride down was about 5 min. The skies were so clear that we could see the Sierra Mountains, which were 7 hours from where we were. It was beautiful and amazing. Cold and fresh, yet warm. I saw my feet dangling over the land below me. I was imagining my straps coming loose from Greg, and that I would fall straight down and imagining what I would do if that happened. "Stop, tuck and roll?" There's really nothing I could do to.
Suddenly it was time for landing which was sooo fun. Greg swept his legs under my binded legs and landed for me. I was watching as the Norcal guys were scattering about beneath me making sure they would be positioned exactly where we would land. I remembered thinking it was funny looking, a couple dots running around in the field trying to catch us. As soon as we landed it seemed like it went by too fast, and the guys immediately unfastened me and carried me to my chariot.
It was a great experience, a great way to turn 32 and I'm not opposed to trying it again ;). Afterwards, I was soooo tired. My body, my eyes, my legs hurt, so we found a field to lay down in, and took a nap under a perfectly blue sky among the stillness of the world I just dived straight towards to. It's nice getting younger as you're getting older. The hardest part is letting go.
Having a disability is really difficult and many times I have to do more just to live like everyone else, but not LIVING is even harder.
I did this one pretty quickly. Kind of just wanted an image to go with this post, but unfortunately these days don't have time to illustrate.
I have an itch, though. I really want to hop back on and do more since I have a ton of ideas backlogged in my head.
I actually wrote this post Monday in the middle of the night. I post notes in my phone when I think of something. Sometimes they don't always make it on here, but I jot them down anyways. I have to type them, because these days writing for any long stretches of time are difficult on my little fingers. The other day I was filling out a form. What for? Hmmm, Oh, right I was filling out the skydiving forms before I took my plunge. Pretty much signing my life away in case I died while jumping out of a perfectly good airplane - as my father puts it. But, my fingers were so weak it was hard making it through those forms.
Journal Post, Monday, April 4, 2011 / Time: all night
Jason and I were up pretty late. I watched him hunched over his computer sending out personal emails to fellow blog artists, friends and family requesting their help in pushing Bike for Kam around. He was frustrated. I was frustrated. Now, Jason isn't the type to get worked up about too many things. Luckily, we seem to balance out those moments. When I'm a mess he is usually the rational one. When he's a mess it is I that comes to the rescue. He gets overwhelmed with multi-tasking, prioritizing or things that seem to big to handle, and I get overwhelmed with emotions and my desire for big dream schemes.
But, he was clearly frustrated. He was hoping for responses to his sincere personal requests in helping to repost or network. After all, we are just a team of two. My bike riding friends are just a team of 4. We need more team members.
It's hard doing it alone. Some of my friends are frustrated, too, mostly because they are not as familiar with this nonprofit world or PR and marketing and probably expected a greater response.
"I deal with this all the time", I say "...don't worry". But really, I'm worried. Of course, I want it to do well.
How do you get people to care or to understand the urgency? Is there a magic strategy? Some things you can put off, but a debilitating condition you cannot. Posting something once doesn't do it. Rather it is a 24/7 endeavor for someone such as myself and sometimes the rewards don't seem to fulfill all the time and the emotions put into creating something such as this Bike for Kam project.
Jason doesn't really experience frustration much, because admittingly he doesn't put himself into many things. Pretty much just me and his art. This way there is no way of getting hurt. He is my support, but it is normally I that takes my shields down and pushes myself into the fires of vulnerability in hopes to have listening ears fall upon me. But, that is what happens when you take ownership of something so personal, you start taking it personally however, illogical your feelings or accusations may seem. So, he was feeling it.
We were up nearly all night. Ok, it WAS all night. I couldn't sleep. He couldn't sleep. I was in such pain and my shoulders were horrible. I couldn't move them. I felt like they were attached by rubber bands. Rubber bands that were ready to break. I felt like they were lead weights that someone had sewn onto my torso as an after thought. They were weak and I could barely grasp and squeeze my soppy tissue around my nose. My fingers were weak, too. Those significant stages or milestones of progression can cause alot of turmoil and fear and well endless crying. The physical feeling combined with the elements of exposing yourself publicly can create quite the combination of insecurity, self doubt and questions.
It was 3am and I saw a friend on skype. We sometimes skype in the middle of the night. We can, because of the different timezones. This person has HIBM, too. This person didn't sound well and the vibrant person that I first met is having increased difficulties, both emotionally and physically. I listened. Or rather, I read. To an outsider they may respond in worry that this person is not handling it right or needs help. But in our inside world we know that these types of emotions are the real side of life. Besides, it's not about not having the doubts or insecurities, it's about having them, but still choosing to proceed. We are in it 24/7. Others can come in, pat us on the back and then can leave it at their will.
I was upset reading her words on my iphone skype chat. It sucks. It makes me mad that I can't help her. I hate HIBM. I hate seeing and experiencing what it does to others. There is nothing more I can do to make myself better, there is nothing I can do to help this person whom I care so much for. I don't want them to progress. I feel defeated and tired from all the work and was hoping for greater response. I gave myself to it. I opened my life.
Sure, I've been public about HIBM for the last few years, but the insecurity never goes away. It's hard sharing so much of yourself.
I was crying and said to Jason, "I'm not sure what more I can do. I keep working and hoping--I'm so tired, I'm not sure there is more I can do. There's nothing I can do to make it better for me. There is nothing more I can do to make it better for her."
As my arms feel so differently than a couple months ago, I'm the one living with this, crying into my pillow at 3am, because it hurts so much, in the most tangible and intangible forms.
Usually the pain motivates me. I cry, I get discouraged and then I search in my mind, "What else can I do? What other tricks do I have up my sleeves?" and jump right back on.
But at times, I wonder if there is any motivation great enough to beat the odds. I don't mind throwing myself into work and giving everything I have if I felt it mattered. If I feel a response. It sounds horrible, right? Afterall, I'm not a conditional person. I do it to do it. I do for others, because it's the right thing to do. Not because of a prize or some great promise. I mean, yes, there is the motivation of treatment, but I am also practical enough to know that a treatment won't happen tomorrow. There's alot of red tape and stages that these types of things need to endure. But, I'm investing for the long term, because what I do today may mean something tomorrow.
As I had difficulty squeezing that soaked, sorry looking tissue around my nose I said to him, "I don't want to be around to see my body like "that". I'm not sure I can bare it."
Again, no need to be alarmed, but these are real feelings and I am willing to bet not just my own. The good thing about the condition is it progresses over time, so there's an adjustment period as well as the feeling that the new weakness just snuck up on you. The bad thing about HIBM is it progresses over time.
Jason had to lift me up so I could pop some ibuprofen. It barely helps, but barely is all I've got. Somehow among my tears I grabbed my phone to make these notes. I guess that is the subtly of knowing I'm ok. For me to even care to make notes, so I can share later, must say I haven't given up yet. If I was truly hopeless I wouldn't spend time writing notes.
It gives determination, but I'm sometimes worried about the day I won't feel so determined anymore...
We were both lying on our backs feeling discouraged. I grabbed him as a sign of "It's time to move my legs", but could barely intertwine my fingers to his. I usually grab him to show him how to help.
"Could you move my leg slightly to the right? My thighs are rubbing against each other and it's uncomfortable." I said.
I told him, "I'm not sure how much more of myself I can share." The reality is everyone has their problems and busyness. I watch different organizations and people that need help all the time and I feel bad. I carry the weight for them as well. How can we be enough for all those in need? They share the same plight, they are looking for listeners, they are in need, too. So why am I complaining?
I try to understand the perspective of onlookers. I'm sure it is shocking to some--especially those close to it, or old friends who don't see the progression on a daily basis. A young girl whose body is slowly dying?
Some people when they see scary things they become paralyzed by it. I wonder if it is hard for some to hear it, and it's scary so they don't know what to say, so they say and do nothing at all.
It's the equivalent of covering up your eyes during the scary parts of a movie and saving yourself for the happy ending. I'm slightly different in that I immediately slip into gear and imagine ways to help or problem solve. Fight vs. Flight. But, everyone is unique and different, and handling issues by no means follows a catalogue or list of instructions.
So, I wonder, how do you get people to care? Is it that you get someone big involved and then everyone will follow? Is it a popularity contest?
"Come on, Kam, think...what else can you do?"
The thing is it takes people awhile to process such an intangible concept of deterioration, of a dying body, of the daily struggle. Even my friends who are doing this ride, they said they didn't realize, how they didn't know and now a few years later today they come to my side with helping feet. It takes time. The problem is "we" don't have time. Muscles are dying. Time is of the essence. But, still, I have to be a patient patient. I have to keep going even when I don't want to. Jason says people probably see me as always strong, but I'm not sure I am. I need motivation, too. I need revitalization. I really need encouragement. I sometimes worry about the day when my motivation is no longer there and I don't have anything left to keep pushing.
In these down moments I feel childish and foolish. "How could I be so silly in thinking that anything is possible?"
I'm so silly for caring so much. My idealization gets me into trouble, or so I think. My optimistic ceiling caves down on me. But, however foolish I may feel for letting myself be so vulnerable, I retract and say I'd rather approach life, work like this than the other way.
And so, in those moments I'm forced with the same decision as before. Give up or Keep going?
I think we all at times are faced with this question...
______________________________________________________
SO, that was my post, and the moment from a long Monday night. Feelings are feelings and when it's tough they can't always be controlled. Keep going and have faith. The great thing about such a project is you see the ones who are really there for you. We don't always have those opportunities to experience the ones who will be there when we need them the most, so when the opportunity arrives it's good to pay very close attention because if ever you are the one that needs help, you will at least know the ones who will be there to hold you up. AND, it is always the unlikely ones who step up, I've noticed. It's not always your family or "close" friends, the ones you hang out with on a daily basis, party with or have drinks with.
Through the week the project has gained some wind and momentum. We've seen reposts and great donations. We are getting some coverage and I've been emailing Bike Coalitions, shops, blogs, etc. in hopes that maybe they won't mind posting about us. I ask you to do the same, too. At the very least those who didn't know about HIBM may know now. That's success, right? I guess all one can do is be patient and have faith in others and keep sharing.
I know for some finances are tight, but seriously even $5 $10 helps. Don't feel like what you do is too little. Not just for this project, but everything in life. It just keeps moving the project forward, and if you can't donate then spread it like crazy. That's JUST as nice. My little brother raised nearly $800. None of it his own money, because he can't afford it either, so he asked multiple friends to give a little ($20), collected it and donated it as one lump donation.
Wheeeew, that was a long post. I hesitated about sharing it, because I didn't want to come off judgemental. It's an emotional ride sometimes, but we can do it! My next post will be my skydiving video---yay! fun!
It's been really busy. Networking and PR can really take it out of ya. Two nights ago I had a pretty bad night. Feeling alone and hoping to see involvement. I didn't slept all night.
Feeling better now, though incredibly tired. Not just from all the work for the bike project but I have other projects I'm juggling, too. I'm also oddly still sick. I had the flu for 2 weeks, 4 weeks ago, and since I've still been pretty sick. Cold, allergies...mmmm, not sure. I'll post my thoughts from 2 nights ago just because it's probably important to share those really down moments.
I have them from time to time. Absolutely.
Now, for the good news. Meredith Skrzypczak, Editor from Rancho Palos Verdes, CA Patch, has just written our very first article. Cool!
“A rare disease has a former L.A. resident fighting back as she starts “Bike for Kam,” a grassroots project culminating in a 500-mile bike ride.”
“What you are before you become disabled … you’re still that same person,” she said. “I’m still the same person. … I still care about living life, if anything more.”
Check it out: A RIDE TO REMEMBER
I just woke up. My body feels like it was hit by a tank and I am incredibly tired.
It's 1 'oclock in the afternoon :/. Yikes, I never sleep late.
Everything hurts, my ears are ringing, my head is hurting, my teeth and my eyes are sore. I am trying to pull myself together because an editor from Patch, paper from Palos Verdes is doing a phone interview with me on the project bikeforkam.com . A friend asked his friend to help, and this is the result. You see? Have to keep talking about it and asking around because you never know what will happen.
Here is a sneak peek pic from yesterday where I dived in Cloverdale, Ca with Norcal Skydiving. Awesome group of guys. When I have a chance I will post a video and the story. I think I am tired from, well the dive and a busy weekend, but have been barely sleeping in general.
I feel like ground meat, and not the organic kind. I've been waking up every hour.
Saturday before the jump I had like 2 hours of sleep and during the week wasn't much better. But, not last night. I slept like a dead person and had some really epic dreams. I sometimes forget the way, and the amount, I work and the things I do would make any "regular" person tired. But, it was worth it. My birthday weekend was probably the best I have had in years. Usually I don't like to make a big fuss about myself and practical when it comes to spending money on things, such as my birthday. But, it was good. Take those moments.
Anyways, need to push myself back into all the work that is awaiting me. I didn't have a chance to do alot of PR work over the weekend because I was out of town. I did keep checking the site and saw we had 500 visitors and maybe 15 or so donators. I try not to get discouraged. After all, it's only been 3 days and I know it requires alot of work on my behalf, as well as the team, friends, colleagues, family, etc. get it out there. Lots of work ahead. Cheers!
Please take the time to Subscribe to, www.bikeforkam.com
Well, I skydived for the first time and didn't faint or hurt any bones. It was crazy...different than I imagined. I'm getting old, though because I'm so exhausted. Pulled off in a winery field and taking a nap under a perfectly blue sky. The weather and scenery is simply gorgeous. Talk to you soon.
Here's a short post. I'm feeling better today. I feel released from alot of work I've been tied down with lately.
Yesterday was pretty bad. We launched the project and I was so tired. My arms and fingers were so tired, and each shoulder felt like they had ten pound weights on them. It gets scary on days like those. The recognition of a new weakness luring around. I cried for most of the day, for more reasons than one.
Tired from working all night to launch, tired from all the content I had to write about, tired from being so wrapped in HIBM, feeling odd from being so exposed even though I've done this so many times before. I guess I don't want people to feel sorry for me. It's a silly feeling, I know but a feeling is a feeling. It's not always logical. Anyways, it was a pretty bad day. It was a bad time and a very bad sob session that lasted for hours and hours.
I had no problem letting it all out. It's hard imagining not having use of my arms.... But, I got some rest and today is beautiful as I'm hopping wineries. Had a good meal. Drinking some good wine and coasting through nature. There are those really bad days and it's about hanging in there so you can reach the good days. I feel relaxed and ready to tackle my next load of tasks and ready to sky dive as a way of bringing 32 years of age.
www.bikeforkam.com is a grassroots project about a group of friends coming together to complete a coastal bike tour from San Francisco to Santa Monica (Los Angeles) on April 25 to April 29, 2011. The purpose of their journey is to raise funds and awareness for their friend Kam, and for all those afflicted with HIBM (Hereditary Inclusion Body Myopathy).
We finally launched!! This will be a very brief post as I'm simply exhausted. This week has been 24/7 bike project. Built the website and my new friend, Steve...I don't even want to know how many hours...weeks...he spent on this video. Do it justice and at least watch it as it is only 2 min and 30 sec. If you want to know who steve is visit our website ;).
Emotionally and physically exhausting -- I was up nearly all night. Unintentionally. It just happened. This stuff takes so much time. Plus, talking and writing about your ailing condition can be taxing. So, I need a break and hopefully you can help tired me out. Poor steve was emailing me at 3am from Los Angeles :/.
As soon as I hit the launch button and sent our PR outline out to the team I just cried. I was alone. I'm sure it comes in part, because I am deeply tired, but also because I feel so exposed. I should be an expert at this, right? After all I talk about it all the time but it is still hard. And, I get fearful that my arms are going to weaken to nothing soon. I can feel it my fingers and shoulders. Sometimes, I'm scared.
I think I am going to take a break this weekend. I'm so tired. It is my birthday this weekend and I am supposed to be going away to bask in a winery and then go skydiving, but I don't feel mentally prepared for it all. What? Who knew you had to be mentally prepared for a vacation? That's how mentally exhausted I am. I feel like, "Oh yea, I have to go skydiving this weekend".
Like it is an item on the list :/. Kinda wanted to enjoy the moment. Oh well, I am sure I will be fine once I get there.
I hope this project will go well and I really really encourage you, whoever you are, to stretch yourself and move this project around your circle. It's important. Alot of hard work and dedication has been wrapped up in this and it is just the beginning. More work and more fun to come.
I need your help! This is a viral project and we will get absolutely no where if you don't chip in and/or share. All it takes is your fingers tapping on that keyboard or bringing it up in a conversation with a friend or hey, even a stranger. Reach out to at least one person a day and forward them to us.
Have a good weekend all! I may just come back with a video of me skydiving :O.
What? How can you help you say? Thanks for asking. Well first, visit our website at: www.bikeforkam.com
and then....
1. Watch our promotional video, and then repost it
Remember, there is no such thing as reposting something too many times. People get busy and they always mean to ‘get involved’, but life takes us away. We read some where that the human attention span is 8 seconds and sustained attention is 15-20 minutes. We forgot where we read that, though, because we were too busy doing something else.
2. Donate on our CROWDRISE site where our donation page is set up
All proceeds benefit HIBM medical research and goes directly to ARM (Advancement of Research for Myopathies), a credited 501(c)(3) Nonprofit (EIN # 95-4837946)
* Please, pass it on to your international friends and family! CROWDRISE accepts donations from everywhere.
3. The MOST important way to help is passing our site and project on to all your friends and family
This will be the key to success. SHARE . SHARE . SHARE until it hurts (Well, we don’t really want you to get hurt).
* Post it on Facebook
* Post it on Twitter
* Post it on your blog
* Ask your friends, or strangers, to post it on their blog or forums.
* Post it on Post-its…?
* Personally email your friends and family telling them why they should donate and encourage all of them to pass it along. If you happen to know Kam - share how you know her.
* Be Persistent
* Be Persistent (We said that one twice, because that one is important)
4. Repeat steps above.
Hey!! ~ I've been really busy lately. Working alot on this grassroots project that my friends and I are launching.
Should be soon. Been working hard at building a full-on website and gathering the team. Here they are above. Steve is 99% done with the promo video and I am really excited for people to see it. I cried when I saw a rough edit. It is weird. I know I have this condition. I live with it but I don't center my life around it. I try to still live despite it.
But, seeing myself talk and explain the severity was really hard. I was almost shocked. That happens every once in awhile. I'm shocked just like everyone else. After all, you usually just watch 'those' people on TV or the news, you're not supposed to be one of them. I cried, because it was like explaining to myself the reality of the severity and it is a hard thing to swallow. I try not to be fearful. I try to not let it lead me but sometimes it grabs me and the tears come.
Anyways, I'm probably just tired. This type of (design) work takes alot of hours and days...mostly because we are doing everything ourselves. Everything is volunteer. Our time, our money - it all comes from us. I've been really excited, but right at this very moment I have some insecurities if it will do well. I hope it does...I think I feel this way right now because I've just been working on it for so long now. But, it has been fun setting it up - I must admit. More fun that any other ARM event or project that I've done over the years. I think it is because there is a sense of ownership and this is our thing and our way of expressing the method of giving.
Sometimes I feel overly worked and consumed with advocacy and I want to help others help, but I can only stretch myself so thin. Many times people want to help, but they just don't know how to or they feel like anything they would do is not enough. It's hard for me, because I can't be everywhere and provide materials and planning for everyone that wants to help. Though, I wish I could.
In the website I'm building I had each of the members write a small bio. I want people to feel like they know us. I don't want them to see us as just doing a charity, but regular people sharing their lives and through it hope that someone will listen. One of the riders, Viet, sent me his bio this morning. It was 6am and I opened it on my iphone. I was laying in bed and I started to read it to Jason. I couldn't read it clearly because it was making me cry, so he read it for me. I guess many times we don't really express how we feel to one another, particularly for guys as it's not fashionable to show vulnerability. The times I feel like no one is listening or no one 'see's' the reality -- I am proved wrong when I read such words written about me, and I realize they see exactly what is going on. They are sometimes just at a loss.
I'm incredibly thankful to the guys for taking off a week of work and putting their time into this project. It means more than I could ever express. I'm not sure if they know it, but I feel like I'm on this marathon sometimes, and like all of us, sometimes we need that encouragement, that motivation to keep pushing on.
I know I do.
Sometimes, I just want to give up and leave it all, too. I've been needing more help, I'm just burnt out. It's not just the work, but I put alot of myself into the work. My whole being is involved and I really do care about everything I try to do. They, and this project, are my water station in the race, my encouragement that I'm not alone. My towel boys. It's better doing the work when there are others alongside you.
In his bio Viet said he has always wanted to help but didn't know how. Previously, I've always shared about ARM, the organization that funds research efforts to HIBM medical research, but I realize it is not about the organization that people care about, it's about the person. I've invited friends to Galas and Telethons, while underlyingly feeling guilty, because the tickets were expensive and you get all dressed up to be in a room of people that you don't know. This is not the type of thing that my circle of friends would be into anyways. We position our perspective on charity around these typical notions of how it's done, but really it doesn't need to be that way. We can re-invent and create anything we want to.
I've found that everything stems from motivation. You either want to or you don't. If you want to then you find a way to, show it through actions, and don't provide excuses for why you don't or can't.
There's no excuses like 'Well, I need these materials or I need you to provide me with this, or I can't because...'. If you TRULY want to do something, you will find a way to do it. You will find a way. And, that is what my friends that have signed up for Bike for Kam are representing. They've found a way. They don't know the particulars of the science that revolves the HIBM research world, or know about nonprofit culture or the order of commands or structure, they are just doing what they know and love - bike riding.
The fact is - if you ever want to do anything in life all you really need to do is first, look at what it is that you love to do, and then go from there. Is it art, exercise, writing, baking, church, PTO, sports, party planning, music, running, crafts, bowling...? and then use that as a platform to fundraise. Use your birthday or holidays as an opportunity to fundraise. There doesn't need to be a certain structure or criteria -- it just needs to be done.
I love people who rather than make excuses why they can't, they just do. Use your passions and interests to lead you in life. We sometimes compartmentalize our life and think we need certain skills for certain compartments when really everything is connected. Do what you already do well and stretch it to every avenue.
I have the same set of insecurities as everyone else. Every time I start a drawing or a project I wonder if I will be able to deliver or do it as good as the previous. I wonder if my previous success was a fluke and I am afraid of failure as much as everyone else. Skill is one thing, but outlook is something entirely different. I don't think it is my "skills" that matter. When I start something it is the motivation and passion that kicks in. I take myself out of the equation and my subconscious takes over. Do what you already do well and multiply that. Throw your passions in the air, because there is place for all of them...there is a place for everyone just as you are. You just need to put yourself out there and create your own space. If you have passion, you have everything.
With that, yes, I am excited about this upcoming project. It's not just about raising money and awareness, but it's about friendship...it's about experience. It's about old friends, new friends, and it's us learning more about each other and bringing out the best potential. I don't mean to be a weepy mess, but I'm very grateful that they have given their time to do this. It's really inspiring. I feel inspired. I'll do my best to not feel insecurity that the project won't go well. At least we tried, right?
With that, if you are reading this please pass around our project when it is officially launched :). There's a possibility of launching the web address tomorrow. We need you!
For this post I thought I would share what it is I do on weekends. Hey, I may be disabled, but I'm not dead. Not every weekend is filled with excitement. I'm either working, cooking or exploring.
First, I just saw an edit cut of the Promotional Video for the 500 mile Bike ride and it is awesome! It made me cry and I can't wait to launch the project with my friends. It's going to be fun and I am glad that they get something out of it, too. Experience. Can't beat it. I'm building a full on website and Steve is finishing up the final edits of the video. You'll read about Steve later.
So, for this weekend I pretty much stayed in and I got the itch to give myself a cooking project. Something that I had not tried before - as if I needed to pile on more projects onto myself. I can't help it. I get bored and have to give myself something challenging or new to do or I'll go insane. Jason always rolls his eyes when I suddenly decide to cook something that is "unecessary" or "ambitious". Mostly because he would be fine with Spaghetti-Os. This is my audience.
I think he wonders why I put the trouble into things. Why not just make it easier on myself? I'm sure it comes out of concern because he doesn't want me to overwhelm myself, but I always explain to him it's something I love to do and if you love something, you do it. It's not something I want to take for granted. I want to enjoy it while I can. It's my mental break away. It's a mini project that I can start and complete within an hour....mmmm, ok, sometimes 3 hours....or 10...whose counting? He doesn't seem to complain when chomping down on the finished product. :)
This weekend I made Mandu, a Korean Dumpling, from scratch for the first time. It was fun. A very good exercise for my weak fingers.
Towards the end I was getting frustrated. Frustrated from being tired, but frustrated from not being able to lift the soy sauce bottle or shuffle 2 steps to the right. But, I finished! It was a good cooking exercise. I noticed with some Korean cooking, like Chapchae, and these little dumplings, that there are a lot of steps in seasoning. Every ingredient, like the meat mixture, then the chives, then the mushrooms/onions, and the tofu, you mix and season them seperately, then combine them in a bowl and mix once more. Seasoning!! Very important in all cooking. Create the balance. Love and season every section so they all sing together.
After I finished making the Mandu, I of course tried making Ddeok Mandu Guk. It's a Korean soup and one of my personal favorites. It's kind of equivalent to Chicken Noodle soup, yet so much better. The key is all in the broth. If your broth is not good, then you don't have a good soup.
This was from a couple weekends ago. One of those exploring weekends. I went to the Best Coast concert at the St. Regency Center in downtown SF. I like their music. Check them out.
It was a fun experience, lots of sweaty people who don't see the girl sitting in a wheelchair. It was so crowded and I was packed tight like a sardine among a bunch of raving sardines. I was right at the front and couldn't really see the concert. This girl that was next to me befriended me and started chatting it up. She is a graphic designer for Modcloth.com. She eventually asked me why I was in a chair. I suspect everyone wants to ask this question, but they refrain out of fear of reaction. I don't mind talking about it. I figure if I do that just means one more person who didn't know about this rare condition now does.
So, she was surprised and said,
"Wow, you seem really cool. Must be hard for you to be out in this type of siutation (crowded concert where no one cares about you)."
I said, "No, not really"
She seemed a little surprised and I could tell in her face she was thinking that one over for awhile. Eventually she started tapping on the tall shoulders of all the people swarmed around me. She didn't think it was right that I couldn't see the concert even though I was nearly at the front of the mob. She started pushing people and telling them, "If we work together, we can do this".
She was sweet and even got a few people to move. Most of them were kids, too young to care or understand. I was actually fine with sitting there and listening while not seeing the performers. I try not to go out in the world expecting people to give me special treatment because of my disability. I prefer to see people come to it on their own, like that girl at the concert. We took some time to get to know each other-she thought about it-and came to the conclusion of trying to help out the situation. She did it and it wasn't me that forced myself onto others telling them they should treat me a certain way because I'm "disabled". She was slightly successful in moving the crowd, but it was too loud for people to care. The musicians were ripping and everyone was in the moment. She eventually disappeared and moments later I felt a tapping on my shoulder. It was security. They pulled me to the side and told me to watch the concert from the side of the stage and told me if I ever come back to tell 'so&so' manager that I'm there and they would take care of me. I saw the girl in the hat as security pulled me out of the crowd and she smiled at me. She didn't tell me she was the one who told security to help, but I think it was her.
Other things we did that weekend was stop by Oakland's huge elephant sale, Farmer's market and did some cooking. It was good.
This particular weekend I had an itch to go explore downtown San Fran. Look at graffitti, some art, eat some food and then we hiked over to a Regional Park near us. It was great! Ran into a few Banksy's and seen they had changed. Someone trespassed his 'No Trespassing' art.
I kind of like graffitti art for the very reason that it feels very temporary and vulnerable. Any one can paint over it at any time and weather ages it. It's not art that is protected all wrapped up tight in museums.
Some of the graffitti we saw was pretty amazing. The amount of time it takes to do a wall mural for something so temporary is interesting. So, I admire the reason to do something more than the final product. Like Goldworthy or Christo/Claude who create environment works of art that only last a short time. Though, as much as I love Christo the amount of money it costs to fund those projects is astounding. I sometimes feel the money could go to something more needed but I still like it.
Thought I'd post my online portfolio. Some examples of what it is I do for a living, what brings home bacon and great pleasure. I love what I do and I am so thankful to have found art/design as not only a career, but something I actually enjoy. If ever I do get to the stage of immobility, I know at least I can still have passion and love for what I do. I am fortunate that my work has nothing to do with using my body, but rather using my heart, mind and imagination. I think it is something I work hard at, because I know not to take it for granted. We take passion for granted. Not for the reasons of fame, financial gain or climbing the ladder, but because it is an extension of oneself. Click Here
It's been awhile. I've been out, sick and busy. The flu ended up being bad and I had it for over a week and a half. Remember in the previous post I said I never had pink eye? Well, I got it. Twas fun. I'm much better now, though. Still filled with gross mucus, but feel ten times better. Good thing Jason was around to take care of me, because I was acting pretty pathetic.
Despite being sick I was super productive in the work department. I didn't have time to lay in bed for days. Too much work to do.
This past weekend was nice. I was recovering nicely from the flu and pretty much stayed home and did a bit of work. We took a drive to the huge regional park near us and got a little 'lost'. Not 'lost' like we didn't know where we were going, but lost in exploration mode. It's rainy season right now and it was awesome to be in the forest amidst the rain. Love exploring. It is when I do my best thinking. We visit this park quite often now. It's quiet and lovely. Nature really is the ultimate designer. Everything looks good...proportions, shadows, lighting...
It's been bouncing from extremely rainy to very sunny and we ended up in this farm land area that had gorgeous rolling green hills. It was very nice. I came home after that and made a bunch of food. I had not been able to cook for the past week (+) and living off of gross carryout food :(, so after a hint of feeling better I got back to cooking. I made a huge pot of homemade chicken noodle soup, homemade stock and all. It was so good. Nothing like a pot of warm soup during rainy weather. I was in my glory, too.
Cooking really is my happy place. Cooking really is so much cheaper than eating out, too. I've never been good at controlling quantity when I cook. I always cook large batches of everything. I think I adopted this from my mother. We had a large family and she cooked large portions. It's ok, because we end up living off the food I cook for days. I just wished I had people around me that would just stop by and eat all my food. I love that. I think a house is meant to be filled with people eating your homemade food and hanging out. I probably adopted this from my grandma.
April looks to be gearing up as a very busy month for me. I just finished my portfolio and will begin job searching. Working from home has been ok, but it is not my style. I need to be among other people. I feed off of their energy and it stimulates more ideas and self-improvement. Now that I have finished my portfolio I am working heavily on my charity bike project Bike for Kam. I'm working on the website, design and PR materials and hopefully we will launch the project next week.
Look for it :).
I've been meaning to recap my weekends here, but not exactly consistent with it.
I'd like to show my interests, things we do around the city, etc.
Just because I have a disability doesn't mean life stops, and though I mainly speak about my personal limitations here- it doesn't mean HIBM is the only thing I'm interested in.
I think sometimes people think because you have a disability you're not interested in other things, or more so can't be.
I think this is not out of meaness, but perhaps because many have not experienced those with limitations within their social or work circle, so when they see one they automatically think their world is limited. And when they see someone disabled out in the world or accomplished they stop, pause and wonder how that is.
Then they congratulate the disabled for challenging the world not built for them. Limitation is only in the mind's eye and able bodied are not exempt from limiting themselves.
This weekend was not exciting, however, since I spent most of it recovering. I hate staying in bed. I've had the flu since last Thursday. It started Wednesday evening and then escalated mid Thursday morning. I was home alone, so Pippi was my only caretaker until Jason got home. She saw how pathetic I was and curled up right under my chin.
Who is taking care of who?
I'm told I barely got sick as a kid. While most kids had pink eye, colds, strep throat, flu I somehow managed to avoid these. I guess I was saving up for the big one...HIBM. It was only a couple years ago that I got the flu for the first time and oddly right after my very first flu shot. It may be a lowered immune system due to HIBM, not sure, but I have a harder time fighting them off.
I was working at my desk when it hit me and so I dragged myself to bed. Feeling incredibly weak and outrageously freezing with hot/cold sweats, I covered myself in whatever I could find and hoped I wouldn't need to go to the bathroom until Jason got home. I didn't think I'd be able to walk and get myself there in time.
By nature I'm always very very very cold. My legs and feet are unbelievable, like frozen ice blocks. If you sleep next to me you might feel like necrophiliac ;). I feel bad for Jason when my legs get that way. Another HIBM patient told me that is because I don't have insulation because of the depleting muscles. Makes sense. It's not the kind of atrophy where you can visually see the muscle loss in the limbs-exposing the bones underneath. My legs and arms look normal. If you felt them, though, you wouldn't feel much muscle in them. Just hanging skin where the muscle used to be. Otherwise, I'm pleasantly plump ;).
I have an illustration idea to show my frozen feet, depleting muscles and increasingly saggy skin. I've wrote it down for when I have time to draw it out. I have a long list of those. Daily, I think of 4-5 illustrations that explain my experience and sometimes I wish I could work full-time on them.
Not feeling much better today and still weak, congested, freezing and sore throat. Not able to do much today, just shuffling around the house with my pockets stuffed with tissues, heating pad wrapped around me, sipping on Nyquil, hair pushed back and wearing a housecoat with a ratty old tshirt over it. Sound hot? Yea. I try.
I use a wheelchair when I'm outside, but not in the house. I keep myself walking while I'm in the house. Not ready to be a full-time wheelchair user quite yet. Besides, once I do then other issues arise like how do I get up and down to go to the bathroom. Unfortunately, my arms are too weak for transferring and I definitely can't get out of it by myself. I probably could with some creative thinking, but it is not a bad idea to hold on to what walking I can.
So, here I am at the desk attempting to do some work. Not an excitiing update, but I'll have something better next time.
It's 4AM and I can't sleep, so here are a couple Mister Rogers quotes...seems like a natural sequence of events. ;)
"I hope you're proud of yourself for the times you've said "yes," when all it meant was extra work for you and was seemingly helpful only to someone else." --Mister Rogers
"You rarely have time for everything you want in this life, so you need to make choices. And hopefully your choices can come from a deep sense of who you are. " --Mister Rogers
Mister Rogers is an American children television series that was created and hosted by Fred Rogers. Episodes didn't really have a plot and consisted of Rogers speaking directly to the viewer about various issues in an inviting conversational manner, taking the viewer on tours of factories, demonstrating experiments, crafts, and music, and interacting with his friends. The half-hour episodes were punctuated by a puppet segment chronicling occurrences in the neighborhood of make believe filled with creepy looking puppets. Premiering on PBS, it would become the longest-running show on public television network. Every episode began the same way with him putting on his iconic sneakers and ended with him taking off his sneakers while singing the theme song, 'Won't you be my neighbor?'.
I wasn't a fan of his show, though. I in particular liked Mr Dressup, a Canadian children's television series that also integrated creepy puppets. I know, I'm a traitor. Mister Rogers was a little too "good or perfect" for me, not that Mr. Dressup was some revolutionary outlaw in children's television ;).
But, later I kind of liked more offbeat kids programs like, 'You Can't Do That on Television' and the like. I digress.
Mr. Dressup was pretty much the same formula with a different delivery. Mister Rogers seemed more stoic and controlled, and Mr. Dressup was a little more casual and quirky. Plus, he seemed to focus on making crafty artsy things. He would lead children through a series of songs, stories, arts, crafts and imagination games, with the help of his "friends". Yes, "friends". I don't know about you, but anyone who speaks to puppets voluntarily has to have a screw loose and I mean this in a good way.
But, Mister Rogers won tons of awards including lifetime achievement award. He was very soft spoken, an American educator and actually a Presbyterian minister. He was an advocate, on government level, for public broadcasting funding and education. He also fought the manufacturing of VCRs when Sony and the television industry objected. Fearful of home recordings they felt it should be regulated and taxed. As if the entertainment industry needs more money, RIGHT?
The Supreme court listened to his testimony and decided that recording did not infringe copyright. He was all about community. As ONE you CANNOT do it, but TOGETHER, you CAN. Scratch that, I shouldn't say ONE can't do it, but it does make it a whole lot easier if everyone is pitching in.
Random post, but I liked his quotes and what he tried to do. What have we learned? Creepy puppets are cool. Indeed.
Work for others, community, passion and promoting imagination...one of the most important things I think we should have. There are some things from a childhood that are never forgotten, and underlyingly influences us. I tend to have more memories of what was good rather than what was bad, and tend to remember the feelings, or the weather/environment conditions that accompanied a moment, more than the actual event.
Not that my childhood was bad. Sure, there was much struggle in the first part of my life, especially the first 4-6 years of my life as an orphan and adoptee, but overall I am pretty satisfied. Not everything is perfect and that includes people. I think you just work with what you have, try to build upon that and hope that in time they will follow. You can't tell people how to be, you can only patiently wait, hope, and while doing so lead by example--however difficult or unfulfilling it may feel. Work with what you have and and keep moving.
Well, I only planned to post that quote, but it ended up turning into some long random post. Thanks for sticking with me...if you did. If not, I don't blame you.
With that, I am looking at my blog page and I seriously need to design it. Add it to the list. I also want to get my own domain name, which is something I'll try and do soon. I've also been wanting to make use of my 'Inspiration' tab and post things I come across whether they are related to disability or not. I should get on that, too. Thanks for following/reading me.
If HIBM was like a tree, this is how it spreads--while a ball of yarn clings to me and draws me in closer. And to think, there are so many more balls of yarn left beyond the chair.
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 :)
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 ;)
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.
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?
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.
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