I am angry and bitter tonight. But still hopeful.

Tonight marks four years since I had a normal and innocent “this can’t happen to me” life.  I knew my mother was sick that night but I did not realize she’d be dead in a month and three days.  I did not realize the next day, October 8, 2004, my father would take her to the emergency room only to never bring her home again.  I brought her home–as ashes in a small box.  The E200k gene of fCJD kills that fast, something we were reminded of once again this year when my uncle passed June 1.  

It was not supposed to happen again and especially not so soon.  I was very prepared to walk the road alone and find answers before it did happen again and I did not.  It wasn’t possible in four years.  I didn’t spend four years in a fiery pursuit of how to stop this thing from happening to people.  I spent four years fixing myself so I could move on and I have managed to move forward into a completely different life.  It does not mean I don’t remember because I do.  It does not mean that I don’t have bad days and angry, bitter nights when I don’t go out or answer the phone because I do.  What it does mean is I have more to give because I took care of myself before digging too deep into the mess that is CJD, a mess I have unwillingly inherited.  

With each passage of time, a piece of me dies and I let go of the pain more and more.  It’s a process I know will be lifelong; this is how CJD affects its victims’ families.  If there is anything I can give the world tonight, it is hope.  As angry and bitter as I am on this date, the date that to me signifies when it all began, I can hand out hope.  I can bottle it and pass it out to those who recently lost someone to this horrific disease.  I know I am truly blessed to have survived what I went through, the things I had to do (like organize my own mother’s out-of-state autopsy), and the things I had to see (her screaming in hospice).  Have this hope I learned to have that there will be a better day we will see, a day when there is a vaccine, a cure, and laws to prevent this from happening to others.  The experience dissolved my life as I knew it into a pile of dust.  I lost everything and started over.  I’m here to say that it can be done.  CJD will only take from you what you let it.  Have hope that you will move on from CJD, that you will be a better person with an amazing life after you heal.  Never give that up.  

Four years to me is a great distance I have traveled with many blessings along the way.  I know I am lucky today to have come so far.  I know there were moments when I made huge mistakes in my state of grief and I know I could have done better.  At the same time, I look at the person I was and I am so glad I am no longer that person.  I have become stronger and wiser.  I have lost my innocence and the myopic, self-centered view of the world I had at age 25.  My priorities are straight now.  The greatest gift has been the many people I now count in my life as friends and family because of what happened.  I have a much more certain view of life and the world that I wasn’t capable of having back then.  

There comes a point where you reach gratefulness.  I am so grateful to have had Phyllis Larson as my mother.  She gave me things growing up that made me strong and wise so that I could walk this road without crumbling or getting lost.  She gave me a perfect life and love for 25 years that I know I was far beyond fortunate to have.  If I could honor her memory in any way, it is through giving the world the same unselfish love, support, and compassion she gave to me.  

I hope as my family grieves my uncle’s death they are able to find peace and heal.  I hope they can see the light more often than they can see the dark.  I hope they are able to eventually see that they will live again and that amazing things await them in their future.  I know it seems so bleak in the beginning and that is the way it is supposed to feel.  You think you’ll never laugh again and that you’ll mourn your whole life, every occasion, every holiday, every birthday…but you do laugh again.  (It took me a couple months and anyone who knows me knows that I have the loudest, most free and boisterous laugh. I laugh often.  But not from November 2004 until I watched a Dave Chappelle DVD in January of 2005).  

We think so much about prions and genes and tests and the scientific aspect of CJD.  We forget the human element of it and that is what I hope to bring back by making my thoughts and feelings so public like this.  I think it’s time for CJD families to come out of the shadows, self included.

Allow me to introduce myself

My name is Heather Larson and you may already know me from CJD Voice (a Yahoo group), or my first blog on CJD that is now over two years old (and very dead), http://cjdtalk.blogspot.com/.  Or maybe you’re a doctor I spoke to at Barrow Neurological Institute, or maybe you know about my family.  Perhaps you found this blog about CJD via Twitter, and I thank you for stopping by for that reason.  Because I assume if you found me on Twitter, you’re one of my friends and have probably not heard me say much about CJD or haven’t heard of it.  I’m always glad to raise awareness of CJD, so I’m very happy you’ve found my new blog.  

My mission

My mother died at age 56 on November 10, 2004 after suffering through a mere month and two days in two different hospitals.  On October 8, 2004 we thought she has MS or Parkinson’s or early-onset Alzheimer’s disease.  We were very wrong and she died very quickly.  Unfortunately, there was nothing we could do; my family carries a genetic strain of CJD and the disease has no known cure.  My mission is to help find the cure.  I’m no doctor or scientist but I write.  I may not handle the test tube that contains the cure, but I can write about it.  So I’m here to raise awareness about CJD, get people interested in my cause, and see what I find along the way. It’s a start–and we have to start somewhere.  

Why now? 

I’ve blogged about CJD before, I’ve networked with my fellow CJD families, and I’ve done some volunteer work.  But I have a 50/50 shot at seeing age 60 (more on that later).  So for the past few years, I’ve been busy living.  I’m even busier living than ever before and some days I just don’t feel like being bothered by CJD because, on a certain level, I’ve moved on.  I think part of grieving the loss of a loved one to CJD is leaving the experience behind.  But those of us who’ve been through it know it’s always there lurking deep inside.  

The horror of CJD came back to slap me in the face while I was busy living my life in May.  I had all but stopped thinking about it when my cousin called on May 5.  I truly thought I could walk the road alone and that the rest of my family wouldn’t have to suffer as I had through my mother’s death.  But when my cousin called and told me what was going on, it was clear to me that her dad, also in his mid-fifties, was also dying of CJD.  He died June 1.  

I know a few things now.  I live my life to the fullest and live it well, so I don’t question that.  I’ve also come pretty far in the last four years so I also don’t question whether I’ve properly grieved or moved on.  One thing I know for sure is that the Internet is here to connect us in ways we couldn’t on our own.  With social media taking off along with a popularity and credibility of blogs we didn’t have four years ago when this all began for me, the time is finally right for me to put this online.  

This is also exactly the time of year four years ago when my mother started getting some really scary symptoms.  It’s the end of September, another presidential election draws near, the weather is changing, and memories are coming back.  Flooding back.  It’s a hard time of year for me.  

But this will all be worthless unless I put it online for someone else to benefit from.  So that’s who I am.  I’m just trying to make a difference.  I’m going to share what happened to my mother from my four-year-old journals here.  I’ll be tweeting about CJD on Twitter.  I hope you’ll comment on this blog and join in my Twitter conversation.  I hope you’ll follow me as I share what I’ve been through and as I embark on my mission to help find a cure for this disease.  

Thank you.