The Night When I Could no Longer Keep my Mouth Shut!

As I continue to recover, I’ve finally reached a point where I know for certain that this journey is no longer about me. I’ve never been somebody who craves attention. I’ve never been somebody who needs validation from others to know that I have value (let me just say that I’m not perfect at these things though, I am after all…human, but I digress). I have, however, always felt a strong sense of responsibility and desire to give a voice to the voiceless and stand up for those that are hurting or feeling marginalized. Even back in elementary school I would pick on the bullies and get in their face if I saw them picking on somebody else. I’m not trying to toot my own horn here, I’m just trying to give you a glimpse into my heart and what drives me. What has kept me blogging these past 8 months is when I meet people that find it to be inspiring, encouraging, and helpful in their own lives (and it’s not just people dealing directly with Brain Cancer either). I always feel truly humbled by it, and Amanda Haddock is someone in particular who reached out to me. Her son David was diagnosed with GBM (stage 4 Brain Cancer) last year and was in the midst of his senior year of high school when Amanda reached out to me. We bonded over the disease but more importantly we bonded over Star Wars. The more I learned about David, the more I cared about him and his family. He possessed a peace and strength that I have always aspired to have and when I learned of his passing on Saturday, the emotions of everything (emotions around him and my own diagnosis and dealing with the hard realities that come with it) just welled up in me and then exploded out of me as if a dam broke. To help release the emotions I was feeling, I wrote a note on Facebook called “Join Me on a Mission of Great Importance”, which I’m sure most of you have read by now. The note has exploded this week in a way I never expected and has connected me deeper into the Brain Cancer community in a way that I could’ve only hoped for before all this.

Before talking more about the note, I want to take a moment to talk about the legacy that David is leaving us. David was 18 years old and had a rough diagnosis. In spite of it he chose to attend school and he eventually graduated and even went to prom. David was a trooper, a warrior, a jedi knight, and a young man who, from what I could tell, exuded Godliness through and through. Something that Amanda wrote on her blog once that struck me was that “it isn’t hard for a parent to “love” their child but it’s not always easy to “like” them” and she was grateful that she liked David and enjoyed being around him. I can absolutely guarantee you that my mom couldn’t say the same thing about me when I was 18. To me these qualities that David possessed are things that all of us should aspire to and that is the number one reason why I have chosen to carry this torch of ridding the world of Brain Cancer in David’s name. 8 years ago, long before I would ever hear the words “you have a growth in your head”, I knew a young man named Hunter Simpson. For two years I worked as a junior high youth pastor at a church in Bellevue, Washington. Hunter was one of the first kids I met when I first got the job. He was sitting on top of a pile of chairs (probably ten or so high) shouting at people with a megaphone and mouthing off to the leader up front who was trying to wrangle all the rest of the kids so that they could start the youth group session. I remember seeing this and thinking, “Great, what am I getting myself into?”. Hunter was always a popular kid that a lot of the other kids looked up to. During his senior year of high school, I believe, Hunter was diagnosed with an inoperable brain tumor. Like David, Hunter powered through, in spite of his dire prognosis. Hunter was granted a “Make a Wish” and instead of using it to do something for himself , he gave the wish to New Horizons Ministries, a nonprofit that serves Seattle’s street youth. His wish provided the organization with furniture and clothing. (Are you kidding me right now? Who does that? Only Saints, I imagine) In the last months of his life, Hunter ended up going to Trinity Western University in Langley, British Columbia. He saved up his meal-plan money by living on two cups of soup a day. Right before he died he used the remaining credits on the plan to purchase $900 worth of food from the school cafeteria and gave it to homeless children in Seattle. This was the same kid who sat on top of those chairs mouthing off and being a nuisance just a few years before. Sometimes the youngest amongst us can be the wisest, and it’s that spirit that we must carry with us so that their legacy never goes in vain. I thank God for people like Hunter and David so that they can show us the way in spite of our stubbornness.

One of my favorite movies (especially from a filmmaking perspective) is the 1976 film “Network”. It’s a satire about a national news station who decides to exploit the nervous/mental breakdown of one of their anchors for the sake of ratings. There is a famous scene where Howard Beale (the anchor) gets inspired by his anger with the state of things and as result goes on a rant that resonates with people and ends up starting a national movement. All I can is say is that when I wrote the note. It just poured out of me. I wasn’t thinking about any of the possible ramifications (or any movement) that might come from posting it. In my head, even if just my friends read it and shared it then that meant at least a few thousand would see it. I was most concerned that Amanda would like it though, so I was pleased and honored that she was touched by it and was actually sharing it with others (this being only about 30 hours since David passed) after I woke up. Then slowly throughout the day it kept getting shared and reposted and retweeted and as of the moment I write this post, it has been seen by over 22,000 people. That is still a relatively small amount of people in my personal opinion, but it’s definitely a start. It’s definitely enough for me to feel empowered to be a voice in leading the charge towards finding the cure.

Here’s the famous scene from “Network”. Warning : There is some foul language in it! After watching it though, you may find it to be quite relevant to today’s world. The movie was quite prophetic in that way.

Brain Cancer research is one of the most underfunded forms of Cancer research and the people researching new treatments and a possible cure are some of the most overworked and (overlooked) scientists there are. That HAS TO CHANGE!!! There are 600,000 Americans living with a form of Brain Cancer right now. That doesn’t include the millions of people that love and care for those people and of course the 10’s of millions of people that have lost people to this horrific disease. Pediatric Brain Cancer is the most deadly form of Brain Cancer and the number 2 killer amongst all other pediatric forms of Cancer. Knowing this, does not help me sleep at night and I believe it should do the same to others. I spent a year working on a project with the Salvation Army called “The Worst Crime” and it was a film/action campaign that was meant to expose and build resources to help victims of Child Sexual Exploitation in the U.S.. There have been over 2 million victims in the U.S. alone of the horrendous crimes of child prostitution, pornography, and sexual slavery. We couldn’t get the funding or resources we needed to get it out the door and that was a very depressing time for me because I met several of these victims (we’re talking severe abuse and repeated rape) and also met the people on the front lines trying their best to help these victims and you could just see in their eyes that they had one of the most thankless jobs ever. I get teary-eyed remembering back to that time, but the tears of dealing with Brain Cancer and losing people I care about is what’s freshest to me at this point.  I have to be honest, I hope this is all making you angry. Of course,  finding better treatments and a cure will greatly benefit my life but at this point I’m most concerned about the people that are dealing with Stage 4 (GBM) or parents with young children with Brain Cancer because they need it now!!!!

I spent awhile talking with the folks at Accelerate Brain Cancer Cure yesterday. They are a great resource as they are not relying on just one organization or company to find the cure but are investing in several companies and research projects to get as many people on this as possible. They also do fundraising events and can even help facilitate your own fundraising event if you ever feel compelled to do so. I am so pleased to see the support from my friends and loved ones that have come on board and have showed support in practical ways this week. I proudly welcome all my new friends that have become interested in what I’m up to as a result of the note about David. I ask that you continue to send love and support your way to Amanda (David’s mom) and her family as they continue to grieve, but I tell you what…she’s on board with the mission of “Operation: Annihilate Brain Cancer” and if you’re interested in coming on board as well, there are two immediate things that you can do. You can of course like the Facebook page www.facebook.com/operationABC and also “share” David’s note on your Facebook page as well. Small actions that are already making a ripple. We need that ripple to become a WAVE!!!

One of the things that I’ve done during this time of recovery is work on stencil art. I posted a couple of them below. These aren’t the completed versions (basically these are what I start with, then I add a bunch of stuff to them when I print it on a canvas or a shirt) but here are a couple early versions of some that I’ve made that I think are relevant to the current events.

Howard Beale from “Network”

“Furious” Styles from the movie “Boyz in the Hood”

Much Love,

Alex

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