Cure CJD

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

Leading up to the five-year mark

It’s October 17, which means it has ben 20 years today since the Loma Preita earthquake in San Francisco.  Some dates you just never forget.  They live in infamy in your mind, bothering you, playing tricks on you…and showing you how far you’ve come.

I know a lot of my posts here at the CureCJD blog are a little deep and heavy.

You kind of need to wear your wellies to read them sometimes.  It is on purpose; I know there are doctors and leaders in the field of prion disease research who read this.  I want them to know that their work is more important than words can try to express and that what they do affects our lives and deaths.  I want people who stumble on this blog by mistake to learn how terribly important and awful and pervasive this CJD thing is.  I want people to read this blog, whoever they are, and know one thing–that this is a huge problem that can’t be ignored.

But then there are days like today I can only offer hope.

No wellies needed.  Because the most important people who find this blog and leave comments or email me are the people just like me.  Your loved one is sick and you Googled “CJD Cure.”  You found this blog.  That’s on purpose too.  There is no cure today, although I believe with every cell of my body and mind that a cure exists.  We just haven’t found it yet.

Back to hope.

Someone you love is dying of CJD and you found this blog.  I was you only five years ago, except there wasn’t this blog to find.  I hope you’ll find the strength to put up your own blog like this.  The amazing Christine Lord did that after her son died of vCJD in the UK.  We all know hell hath no fury like a mother who has had to bury her child.  I think you’ll find what Christine has done is quite impressive.  My efforts pale in comparison.  I’ve also been impressed over the years by the undying anger of Terry Singletary in Texas, who lost his mother.  I don’t think I’ve ever seen Terry lose the energy it takes to fight for truth in this mess.  You can read his musings and extensive collection of research daily by joining the CJD Voice Yahoo! Group.

See, you’re not alone.

The sad thing is that so many of us have walked this road before.  What is even more sad is how many keep walking the road after.  I am reaching the five-year milestone of my mother’s death from fCJD on November 10.  Presidents Bush and Obama have changed a couple things in our favor, and many great researchers have come forward in five years.  I think we’ve learned a lot from each other (“we” meaning CJD families).  We’ve found each other online and networked.  Some of us even heal.  I can’t say I’ve “healed” all the way, because we all know this just isn’t possible.  You’re never completely healed from this.  And that’s OK.

What I can tell you after five years is that there is hope.

There is healing.  It’s easier when you accept that life is forever changed.  It’s easier when you direct your passion and anger in a positive direction to where you can DO something about this.  But in reality, it’s never really “easy.”  I look back now at the five years I’ve lived since my mother’s death and I’m amazed at what I’ve been able to accomplish, what my father’s been able to accomplish.  We have created all-new lives and homes over and over again.  We’ve discovered life is about “re.”  Re-creation, re-marriage, re-doing, re-discovering, re-moving, re-connecting, re-decorating…and so on.

We talk about how nothing phases us much after watching my mother die of CJD.  We see people lose it over petty stuff.  I know it makes us seem insensitive sometimes, but we truly have been through worse than a lot of people out there.  Only another CJD family can understand how true this is.  I have a completely different way of dealing with whatever life throws at me now.  When something catastrophic happens to me, I can’t say I’m numb to it or that I don’t miss a beat, but I do have a very constructive way of dealing with stress that I never had before 2004.

I couldn’t function for a long time after my mom died.  I screwed up a lot of things, learned some hard lessons.  Now when things go wrong, I deal with them quickly and move on.  That’s five years for you.  You change.  Some days, you change in ways that really suck.  Some days, you wake up and see a positive change in yourself.

That’s CJD.  That’s what it does to its survivors.

What I  notice the most at this five-year mark is that pieces of me are coming back.  The shock of losing my mother caused me to forget a lot myself, what I wanted, what my goals truly were at the time, what my true wants and desires in life were.  I’ve recently been able to get back in touch with a lot of this, being able to remember who I really am.  My true loves in life never really went away; they were just buried.  It seems unsafe to dream after losing a loved on to CJD. It seems pointless.  But that fear goes away.

You will live again.  You will have yourself again.  Life will be different for a while.  Painful.  You’ll wake up many days wondering who you are and how you got here.  But it’s OK.  It’s normal.

Moving On…

For me after five years, I learned the power of moving on.  I moved on in order to survive.  There are still days I choose not to think about this at all, choosing instead to live a happy life without this shadow hanging over me.  There are days I don’t read CJD Voice.  There are days, as many of you know, when I don’t answer emails or blog comments.  There are also days when I do.  There are days when I feel this so deeply I cannot turn my back on an email.  But here at the five-year mark, we know I’ve never really given up.  I always come back to this place of sharing my experience, of wanting to help others deal with CJD.

The ugly thing that is losing a loved one to CJD will always be a part of who I am.  I will always be trying to get the rest of the world to care.  I know I’m not alone.

The truth is, after five years, I know there is more I want to do with this.

But for the past five years, I’ve been busy working on a career and finishing a college degree at Boston University.  I tried to give myself a normal life as much as I could.  It’s what I had to do in order to be the kind of person who can do more for the cause, who can give more of her time and of herself later on.  I’m not going to make any promises right now or elude to big plans.  All I can say is that the first five years since my mother’s death have been about me.  I truly think the next five years have to be about something else.

I wish you peace in your own journey.


Heather Larson


October 17, 2009 - Posted by | Uncategorized

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