I am up early and on my way to Los Angeles for some ARM business and meetings; including another meeting with an LA Times writer who has been pursuing my story for a couple months now. In addition, it's ARM's 10th Anniversary and we are celebrating and fundraising in Gala fashion.  Let's see if I can encourage others to attend and support the event.  This is always the difficult challenge - getting people to come. We haven't sold many tickets which makes me nervous because the event is right around the corner (June 27, in Los Angeles). 

Jason packed the car before he left for work. This is Pippi's first road trip and I'm wondering how I am going to manage her and all my appointments, but there is no other option but to take her. Good thing I have good friends in LA :). Unable to sleep, I have been up since 3am so I'm already tired. I just stopped to get a coffee drink (shhh, don't tell Jason. He hates that I drink these overly sugared coffee drinks). I'm in the parking lot trying to unwrap a straw so the deliciousness can begin, but I'm having trouble. Ahhh, it's going to be one of those days. I find myself focusing on forcing my languid fingers to unwrap a silly straw.

I just arrived at San Francisco airport and waiting for my friend. I can't do road trips by myself anymore which makes me sad because it has ALWAYS been one of my favorite things to do. I love driving long stretches alone because it is where dream up all my best ideas. A drive from San Fran to LA is about 6 hours but I can't do that drive, so I'm at SF airport picking up my friend who flew up so she could drive me down to LA.  Since I moved to northern California this will be our second time doing this. Her name is Sandra and she is the wife of Dr. Babak Darvish; an HIBM patient, ARM Co-founder and President. She's so much MORE than just "the wife" but I'll formerly introduce her in another post. She paid for the plane ticket out of her pocket just so I could come and out of pocket I pay for the road trip and Jason's ticket so he can fly down to LA and drive back up to San Fran with me. Currently this is how we handle me traveling to LA. Sandra's only condition? That I buy her some black licorice for the road trip. ;)

ARM is a nonprofit that works hard to achieve every dollar donated, so it is these little volunteered acts that helps them in little ways. ARM and HIBM Research Group (HRG) are made up of only a few people who have accomplished much for the future of HIBM medical research - despite many struggles and financial barriers. It seems like we constantly do so much for so little, in hopes that around the corner someone with means will take interest, invest and help take HIBM research farther.

It's really nice that Sandra picks me u, but then does it on her own dime. I love her and the Darvish family. These selfless acts are out of love. They work patients like me; out of love and empathy knowing what it is like to be us because they ARE us. Knowing how emotionally painful it is for me and then knowing there are others experiencing the same moments makes the experience even worse. Generally I am a go-getter. If I see something that needs to be done, I'll do it but witnessing this sort of love is what makes me work harder.  It's not just for myself but out of love, gratitude and inspiration to those who work for me. Seeing those who have sacrificed their life and well-being for the greater good of this condition is not an everyday occurrence.

As time has progressed, I realize that not everyone responds to pain with love and giving. Some become inverted, angry and selfish, which is understandable in many ways, but I can't see it this way. How can I just stand by and do nothing? It would be like me ignoring this firsthand life experience, this opportunity to learn despite the struggle. I think it's love and will that keeps us going. That has to be it. That can only be it. Because it would be too difficult without it. I've found that giving comes from inspiration and vision of potential. If you're really inspired, grateful and humbled - giving is genuine; a natural act and less calculated.  If it's a conscious etffort to give then it is forced accompanied by a lack of understanding of what is truly important. Love, grace, selflessness, understanding, tolerance, compassion: less about "me" and more about "you".

Emotionally and physically dealing with our condition and then trying every day to work for a cause that is constantly hit with barriers, down moments, not enough money, not enough "hands". It has to be love that keeps pushing our tired bodies forward. I wish you inspiration today, and if you do feel inspired then hand it off to someone else.  Even if it wasn't me affected with this condition, if it was my family, friend...I would hope I would do the same.