Cure CJD

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

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.


October 8, 2008 - Posted by | Uncategorized

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