It’s been a while. Where to start? How about with “24?”

It’s hard to be incredulous about Fox’s “24″ when the show is 11 episodes in.  But what were the Fox writers thinking?  Better yet  –  get them working for the U.S. government because they obviously know how to cure prion diseases!  How on Earth does Jack Bauer come back from the weaponized strain of CJD that was killing him last season?  There’s no explanation of how he got well.  He shows no signs of ever being sick!  I guess that’s Hollywood for you.  Damn.

I would have written this season’s “24″ by staying true to CJD and what it does to the human body. Even Jack Bauer is susceptible to that.  Sure, my “24″ screenplay would have been more of an under-budget psychological thriller taking place on a hospital room set.  But to the writers of “24,” I say this: as someone who has lived through watching a loved one die of the terminal terror known as CJD, I can tell you my mother’s final days were more stressful and action-packed than any Hollywood writer could imagine.

I’ve been too busy to think about CJD  –  which is often a good thing.  But the good news is that I finished my college degree finally.  I’ll be graduating with a BLS from Boston University in May.  BU has sucked up a ton of time over the last three years.  It’s the main reason I’ve never gained momentum with the blog or with anything I’ve wanted to do regarding raising CJD awareness.

I’m ready to usher in a new era where I can find the people in charge, ask them my burning questions, and post what I learn here.  We’ll see how that goes.

There’s so much more I want to learn about this disease that killed my mother, her brother, and their uncle.  There is even more I want to learn about my own chances, genetic testing, and who the hell is doing what to stop this disease.

–@heatherlarson

Today marks five years since my mother’s death.

It feels like so much more than just five years have passed.  I think I look older than 30.  I definitely feel older than 30.  Yesterday, my mother would have turned 61.  It was a harder day than I thought it would be.  As each anniversary has passed, I have never been able to anticipate how I’d react.  Perhaps if I’d built something more than just a blog, I’d feel like a better activist, like I’d accomplished something in the face of CJD.  But in the first five years, that was not for me.  This experience five years ago was so bad for me that I’ve only begun to really heal.  When a second death followed in our family last year as my uncle passed, the second blow was dealt.  I never thought another family member would go so soon.  We truly are not blessed with time in this E200K family.

I realize how lucky we are that there is no doubt their deaths were genetic.  We don’t have to live with the guilt other families do thinking it was something they did environmentally or something they ate. We have my mother’s autopsy results; there are no mysteries.  But, on the other hand, we live with the genetic threat.  Having a time bomb ticking in our veins is probably worse than wondering if it was a meal we had in 1986 when the world was pretty ignorant to this…

Each day I wrestle with bizarre thoughts about getting tested, not getting tested, what triggered it in my mother, how I can prevent it in myself…which of us will go next.  I wonder why my mother’s father is still alive at this age.  I wonder why we were so ignorant when we were told his brother had died of “mad cow disease.”  I wonder what year it will be when we solve the prion disease puzzles that baffle us. I wonder if my generation will grow to be old before it hits us, like my grandfather’s generation.  Or will we be like my mother and uncle and go in our 50s?  Will we all be so lucky as to be negative for the marker?  I wonder if something I know or have witnessed in all this is some doctor’s answer to finding the cure.  I wonder if I should adopt instead of having biological children.  I wonder if it’s fair to die and leave children behind; at least I’m 30, so any time after this if I have kids, I would be leaving adult children behind.  These are the things I think about.  This is my life.

I’d be remiss if I didn’t say that there are days when I don’t think about it at all.

CJD is a lens through which I’ve seen life differently.  This has taught me many life lessons that I wanted to or was prepared to learn in my 20s.  I know I have a deeper, more intense focus on life than others do because of it.

So that’s five years.  This is where I’m at.  I’m taking some time to relax as this year ends since I’m off from Boston University right now.  It’s my first real break in a long time.  Usually I have two jobs plus school going at once.  It’s nice to be able to have school off my plate.  I have one final class in January before I graduate.  One of my promises to my mother as she lay dying was that I was going to finish my college degree.  In 2010, with my bachelor’s degree finally complete, I can focus on other things, like doing my part for the cause of curing CJD.  For now, I will just continue to blog and raise awareness.

The story of my mother, of our family, has touched one life at a time.  CJD doesn’t get nearly as much press as the sexier diseases like cancer.  People still associate it with b.s. like it’s an old person’s disease or that it is rare, or that it can’t happen to their family.  People think it’s still something only a few hundred people a year die from, so it’s not that important.  Well, if those 300+ people who died this year aren’t important to you, well, I can’t help what kind of person you are.  But that’s 1,500 people (at least) in the U.S. who have died, including my mother and uncle, since five years ago began on this day in 2004.

Those 1,500 lives lost matter to me.  They matter to us all.

RIP Phyllis Larson, November 9, 1948-November 10, 2004.