Cure CJD

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

Life, with possibilities.



All this is for me is life with certain possibilities. In my last post, I touched on all the stuff I felt compelled to do with my life once I accepted the possibility of my mortality. That’s a 50/50 shot that I carry the genetic mutation. Even then, there’s no guarantee I will die of CJD. My paternal grandfather is still alive even though two out of three of his children have died of CJD. He is one of 14 children and only one of them died of CJD. So if you’re trying to make this a numbers game, good luck. If you want a guarantee of survival or death, good luck. Neither is promised. So I live life with the possibility that anything can happen here.

But just in case life is short, I take some risks. I drove in a blinding snowstorm the other morning because I didn’t want to miss work and be shut in for the day. I’m going to run a marathon, probably not the best choice for someone (allegedly) missing an ankle ligament. But what if my life is short? I don’t want to miss out! So I accept the possibilities and live life to the fullest. 

There I go with that acceptance thing again. If you’re finding this blog and CJD runs in your family, or even if you just found out your loved one who died of CJD did carry a genetic mutation you never knew your family carried before (that’s who I was in 2004), I’m going to give you some advice that has worked for me. Let go. Release. You can’t control this. All you can control is your own personal choices, so make good ones. The answer to being able to reach acceptance and find peace in my life has been to live well and try every new thing that comes along. It’s simple and it’s enough. 

So why does this post have a screen shot from “Scarface” at the top that says, “The World Is Yours?” I have this passion for running that not even 14.2 inches of snow in Wichita last week could kill. I am training for the San Diego Rock N’ Roll Marathon on June 2 for the Leukemia & Lymphoma Society’s Team In Training. I am honoring my friend April, who celebrates ten years of survival this year! This is an aspect of life I am taking very seriously. I am just so happy and grateful my friend is still here. A few of my teammates are honoring those they lost, some of those children.

I felt an outpouring of love well up in my heart as I ran yesterday. Maybe it was just the runner’s high. Another neighbor entered the gym and turned on the TV as she hopped on the treadmill next to mine. She turned on “Scarface,” walked for a half hour and took off, leaving the violent flick blaring on the TV. So for two hours of my indoor, 8-mile run, I had that movie to keep me company and combat some of the treadmill boredom.  

I had a lot of time to think of others I have helped, not just April or the LLS. I’m on the board of the Kansas Writers Association. I help a friend of mine with his fundraisers for AIDS patients and will probably be joining his charity’s board soon too. I ticked off in my head all the charitable stuff I’ve done or any moment I made a difference in life. How a certain broadcast interview may have helped one young girl get off the streets. Attending a human trafficking conference. Yes, I’m a do gooder. I’m a research guinea pig for UCSF and proud of it. I’ll be happy to publicize a good cause or good work done by a friend. For instance, buy my friend Samantha’s books. They’re good. And she works her ass off. 

I was thinking about all these people who have become a part of my life and how we are all trying to reach the same goal here. We all want to create a better world for the next person. That’s why we create non-profts in help each other out. We’re all here together to create new possibilities, not to accept things the way they are. So when I say ‘acceptance,’ I don’t mean you lay down and die. 

I have accepted that the rest of my life, whether it’s 20 or 50 years, will be awesome. I’ve had over eight years since my mom’s death and really feel suddenly like I have perspective. I’ve accomplished a lot of what I set out to do and done some things I never dreamed of a decade ago. I gave myself permission to live. I’ve chosen to live in a place where things are possible and I don’t give up. 

I got a nasty virus for two weeks and didn’t run at all. I got back to training this week for the marathon and had to settle for the treadmill instead of the road. Not even 14.2 inches of snow can keep me away from living my life — that means marathon training. I’m an insane person who decided to push it to eight miles yesterday, even though I probably should have done six and called it a day. But I don’t want to get behind on miles and miss out. This is my chance to run a marathon! 

I’ve never seen “Scarface” all the way through. I just know it’s a gangster movie with the famous line of, “Say hello to my little friend!” So imagine me running these eight miles indoors and thinking of all this emotional stuff in my life, the level of determination I possess, listening to my favorite upbeat music, and thinking of how much my ass and feet hurt during miles six through eight. It took me 122 minutes and 40 seconds to make it to the eighth mile. Just as I got there, “Scarface” ended. The last scene of the movie ends with the camera on the indoor fountain with the globe in the middle and the pink neon letters that say, “The World Is Yours.” 

It was a personally fitting moment for me. You don’t need to run eight miles to have this feeling. You don’t have to be a runner. Whatever challenge this life has given you, whatever seems impossible now that CJD has become a part of your life, know that it is not impossible. The world is yours, your life is yours. You must accept that CJD has come into your life, but you don’t have to let it beat you.

Sure, it may ultimately kill me someday. But it has not beat me. Not once. 

–Heather Larson


February 24, 2013 - Posted by | Uncategorized

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