Cure CJD

Heather Larson's experiences in helping find the cure for CJD

It’s kind of like this.

Here’s a guy who, in his 20s, was faced with mortality. He had a heart attack and this meant the immediate implanting of an ICD to shock him back to life if/when his heart stops again. He’s in a punk rock band; he’s been shocked back to life a few times. He seems to be using it like a get out of jail free card. Instead of following doctors’ advice and retiring from his existence as a high-energy punk singer, he pushes his heart to its limits and the ICD kicks in to bring him back to life. The New York Magazine article about him mentions him smoking, so he obviously hasn’t quit. The article also talks about him re-evaluating his life by breaking up with a girlfriend of ten years, which is credited to how the mind changes after one has a near-death experience.

I can relate. The article struck a chord. Do you live within safe, doctor-prescribed parameters or do you go all out and live like you’re dying? Maybe I am one of those people who have had their mind changed by a near-death experience, although not in the traditional way. I think watching relatives drop like flies from a genetic condition I have a 50/50 chance of getting is akin to having a near-death experience. I think it qualifies.

I showed my best friend my last blog entry. I didn’t read it to her, just said, “Look at this extremely long blog post I wrote about trying to come to terms with my mortality…” Her response at seeing the mass of text on her computer screen was that I need to stop obsessing over it. Maybe so. Or maybe not.

I can sort of understand how this guy in the article, Aaron Lazar of The Giraffes, feels and his views on life. But with an ICD in his chest, he’s pretty much guaranteed to survive. I don’t know if that’s true or not, but it’s the way the article made it sound.

After my mother died, instead of breaking up a ten-year romantic relationship, I actually began dating like I was house shopping or something. This ultimately resulted in two disastrous relationships. I charged up my credit cards. I quit a job by walking out and never coming back and was punished karmically by enduring a three-month stint at an even worse job. I signed up with Boston University to finish my BLS online from Phoenix.

After my uncle died, I pretty much stayed the course of plans I had set. But I did make an attempt to conquer my fear of singing in front of others. It doesn’t sound like much, but for me it was huge. If my cousins have made similar reevaluations of their lives since their father’s death, I am unaware. We are not close. I wasn’t even on speaking terms with my uncle when he died. CJD had already torn my family apart when my mom died.

The mind and heart definitely change after a near-death experience. One decides what is important. What that is depends on the individual.

What’s important to me?

How I treat people and for my time to not be wasted. How I am remembered. What I leave behind. It’s important to spend time and be giving of myself and my time to others. But it’s also important to find a balance and make sure I take care of myself first. I think this is a hard thing for women to learn. Sometimes (like this very moment) I need to stay home and process some of the difficult emotions I have about past, present, and future. I think in some ways I am lucky because I can’t afford the time it takes to procrastinate anymore. I am actually lucky to have had this scare in my life so that I prioritize my time and endeavors in a way I can be at peace with no matter how long I live. I have learned it’s important to do what you love and to share your gifts with the world. It’s important to see yourself in a positive way and that you are deserving of great things in your life. For me lately, life is also about discovering things about myself and the world that I didn’t know. Life is about tasting every flavor and experiencing as much as can be experienced.

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June 14, 2009 - Posted by | Uncategorized

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