Done with Being the Boogeyman

Every day this past year, I’ve chosen the attitude of taking it “day by day” and it’s definitely lead me down some interesting rabbit holes. Well, today became a Brain Cancer Advocacy day. During the health care reform hearing yesterday, Representative David Dreier made this comment, “A pooling process, is one worthy of consideration, because while I don’t that think someone who is diagnosed with a massive tumor should the next day be able to have millions and millions and millions of dollars in health care provided, I do believe that there can be a structure to deal with the issue of pre-existing conditions.”

When I first saw the clip of the congressman making the remark I was very angry, but I didn’t exactly know why. At first I thought it was because his comment seemed to imply that brain tumors require millions and millions and millions dollars worth of health care and somebody who is diagnosed is not “worthy” of coverage. I responded initially in a very reactionary manner. I then prayed about it, slept on it, and woke up feeling like I needed to call his office. I called it, not knowing what to say, so I left a message saying that I wanted to challenge him to a duel, I then hung up and couldn’t believe what I had just done. I was fully expecting the FBI to knock down my door any moment until I called the office back. The aid declined the duel on the congressman’s behalf and asked if there was anything else that they could do for me. I asked for an apology from the congressman and his aid said “I’m sure when you see it in context you will see that he didn’t mean it in the way it is being perceived.” I then said that if the congressman ever had time, I would like to take him to my brain tumor support meeting. The aid said that he would pass on the invitation. I think I was so relieved that he was able to see the humor in the whole duel thing that I wasn’t prepared to really know what I was looking for  from the congressman. After I got off the phone, I realized that what I wanted was a public apology, not for me, but for everyone who has had to suffer through the gauntlet of dealing with a “massive tumor” (whether as a patient or as a family member). I wanted a statement that would acknowledge the ignorance of his comment and the lack of concern that the comments showed towards thousands of people that already feel very helpless navigating the health care system with such a complicated illness.

I tried recruiting people to call and bother his office and even started a petition requiring him to give a public apology (Thanks to those that have already signed it by the way). Ironically, I had just done an interview for an upcoming film festival at a local television channel in the foothills of Los Angeles which just so happens to be in his district. I plan on going there tomorrow to demand the apology if he hasn’t given one by then, the executive director has already promised me airtime.

Now that I’ve had a little time to think about it…My beef with Dreier is really the fact that his comment was so flippant no matter the context or his intention. He could’ve used any other situation or ailment to prove his point but he chose to use the example of someone with a “massive tumor” and to me it is absolutely worth making a stink over. Let me tell you why — A few hours ago, I finally realized what it was about his comment that hit me so hard in the gut. “Massive tumor” was a shorthand way for him to paint a picture of a situation that is so horrific and expensive that if it ever happened to someone that didn’t have insurance, it would bankrupt the entire system, which is an absolute fallacy and that is why I’m looking for a public apology. To me, it’s a very simple step to help play a role in changing the public perception of this disease. I’m not going to lie, being diagnosed with a massive tumor is not cheap, it can certainly be horrific, but it’s not the end of the world, no matter how painful the journey is. It’s time for Brain Cancer/Tumors to no longer have this type of association. It’s time for this disease to come out of the shadows. Most importantly the time is over for Brain Tumor patients to be the boogeymen of the health care system. That’s what this is all about for me, bringing all this to the “oh so beautiful” light.  It’s not Representative Dreier’s fault that the disease has this perception. For the longest time, the health care professionals that dealt with tumors had a very fatalistic attitude regarding the illness, but  now that’s rapidly changing. The attitude of patients, surgeons, oncologists, and everyone that works directly with this disease are waking up to the fact that taking a holistic approach and focusing on quality of life is greatly improving the outcomes of the disease. I’ll never forget the reaction on everyone’s face when they heard I had Brain Cancer. Their look of despair will forever be etched in my mind and in a lot of ways, it probably contributed to me freaking out more than I needed to. I remember telling my brother, right before going into my surgery, that Brain Cancer is the worst thing that I can imagine having to go through. I’m thankful to report to you a year later that it’s not the worst thing and thank you God for your grace and mercy and to you for making that so (I also have my doctors and mentors to thank for teaching me how to take a well rounded approach)!!!

As I write this, I know that there are people that are reading this that have just lost someone to Brain Cancer or are watching someone they love suffer through it, but even they know that everything will get better with time. That’s what is so awesome  about progress, it takes time (Love is patient, right?). I come from a family of history nerds and if there is anything I know about history, it’s that progress starts with a simple small act that changes one heart and mind and from there changes many hearts and minds until the majority of hearts and minds see that thing very differently than the generations before them. For me this is a straightforward issue that is worth changing hearts and minds over no matter what it takes. That’s going to change the way that this illness is approached and it’s going to save the health care system millions and millions and millions of dollars as a result (again for anyone reading this, dealing with the disease doesn’t cost that much). Unfortunately this is an issue where progress needs to be made sooner than later, but that’s where taking it “day by day” really comes in handy.

Stay tuned as I continue my crusade of changing hearts and minds slowly but surely. Thank you for those that have participated in this mini-mission that I’m embarking on and thank you especially for looking past the politics of it all and instead seeing the humanity of it all. If you haven’t had a chance to sign the petition…Here it is and feel free to unsubscribe from any emails you may get by signing it. I already did.

Sign Petition

Mucho mucho Love,

Alex

P.S. If Representative Dreier or anyone from his staff reads this, please don’t see this as anything political. Try to see this as an opportunity to change the hearts and minds of the way this disease is perceived. An apology is always the beginning of healing.

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