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?