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...

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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!