You can access it here as — of course — CURECJD.tumblr.com.

I think there are people who read lengthy blogs and then there are those who watch videos and digest smaller amounts of info…Tumblr is for that latter group. So the Tumblr account may be a more abbreviated version of this blog plus whatever reblogs I can come up with after I discover someone posts something on Tumblr worthy of reblogging…

Social media is just another useful tool in fighting the good fight. If you’re on Tumblr, please track the tag “CJD” on your dashboard and reblog the good stuff you can find. You never know who you end up reaching and how you can make them start to think about CJD.

You can follow me on Twitter @heatherlarson

Here’s a link to the BBC News story:

http://www.bbc.co.uk/news/uk-england-hampshire-13372323

Just one thing — can we ditch the tired 1/1 million statistic yet? I still think of 1/1 million as lottery odds; CJD has happened twice in my family. Some lottery to win, right? I know our lot in life is genetic CJD. But still. What are the odds of two people in a family dying of it, genetic or not? When you make it just a number game, the 1/1 million isn’t very meaningful. I wish we could leave it out of every news story. Sorry, but I’m bitter with Mother’s Day coming up. Happens every year.

We need more stories like this one about Michelle and Kip Laven. He talks about how he and the boys couldn’t even get into her computer because they didn’t know the password. We went through the same thing with my mom! By the time you know there’s no turning back and death is close, it’s always too late to say what you need to say, ask the right questions, find out where that spare key was hidden…

A community in Minnesota is wiser now about this disease. Those of us who are sharing it on Facebook and Twitter and our blogs are also helping to get it out there, searchable for all to see who may come across it somehow. Stories like this need to be told and repeated. I see so many similarities between Michelle Laven’s story and that of my mother. My mother also died quickly of CJD and left behind a loving family who had to endure watching someone they love go through horrible suffering.

What those left behind go though is also awful. It’s terrible to see your mother suffer like this, to not know what is making her sick, to not realize until the very last minute that she is about to die. It’s horrendous to not be able to say goodbye to her. It’s awful to not know if she can hear or feel you because she is not responding. You feel helpless. You are told there is no cure. You feel even more helpless. You watch a healthy women stop eating, stop speaking, stop living, lying flat on her back in a hospital, tested for everything, and told nothing.

Tell me where is the dignity in this? There isn’t. You do your best. But in a moment, your life as you knew it is over. You’re left without the most important person in your life and unsure why no one has found the cure yet. Where is the answer? Why are young people dying of this and leaving behind young children? Why? This is unacceptable. As unacceptable as it was in November of 2004 when my mom died.

We can do better. We can do better at everything regarding CJD. We can make others care. A few days ago, I saw 300 people in the South died in one day because of a tornado. Everyone cares about that! But 300+ die annually from CJD (supposedly, according to current statistics anyway). So let’s get people to care about that. Keep up the fight. Keep it on your Twitter, your Facebook, your blog. Raise money. Raise awareness. Make people know CJD. Do what the Laven family has done and call the news. May there be video and photos like this. You know damn well if I die of this too, I will make sure there is video and photos left behind.

The Laven family is in my prayers. I admire their bravery in sharing their story. I wish I’d had myself together enough to do the same in 2004. If there had been Twitter, Facebook, and Flipcams back then, I know I would have accomplished a lot.

@heatherlarson #CURECJD

Medical Billing

Another moment of life I never truly understood until now was what happened after my mom died. I mean, what do you do? You’ve been camped out at hospice and now you have to pack up and leave. The coroner has taken the body away. What’s left?

Redemption.

The day before my mom died was her 56th birthday. Someone had brought her a balloon as a gift. As we were packing up her hospice room to leave, my father took that balloon and started walking out into the common area. There was another family there that had a small child. A toddler. I don’t even really remember if the child was a boy or a girl. That’s not important — or what I remember. What I do remember is my father, who had just lost the love of his life. He presented that child with the balloon gifted to his wife and smiled, sharing a moment of joy with that child.

Redemption.

If you can do that on the worst day of your life, you’re going to be OK. And he was. Eventually. Me too. I think every day since, we have found a way to hand a balloon to a child in some way. That gesture must be recreated in our lives after a loss, after every door slammed in your face, after every heartbreak.

I was reminded of that tonight watching the CMA Awards as Lady Antebellum performed Hello, World. This song is about that kind of redemption. I’ve cried every time I’ve heard it lately. I’m ready to hand off that balloon again in my life, ready to have that Hello, World moment.

If you’re going through this, you’re not alone. So many of us have come before you and lost a loved one to CJD. Some of us have lost more than one. I lost everything. One day soon, I’d like to see that last life lost to CJD. I still believe in a cure; I have no other choice. That cure is the ultimate hand off of a balloon — the ultimate redemption. For those who keep searching for the cure, thank you. I have a wound that can be stitched up with it someday. When that cure is found, we will all stand together with balloons in hand, ready to let go.

Tomorrow will mark six years since she died.  I’m posting today so that people who are going through this hell — this CJD thing — can know that life goes on and grief evolves.  It never leaves, but it changes through time because we change through time.  This is the first year I am taking time to…just…be…during these tough anniversaries.  Usually I work myself to death and stay busy.  I foolishly think this will keep my mind off it.  That never works.  I just end up bitchy and stressed out, unfriendly to all those around me.  This year, I’m not working.  I’m actually job searching and just chilling out at home.  I’m taking that quiet time I’ve never really taken on the past five anniversaries.  The ultimate goal was just to get the hell out of Phoenix for the entire month of November each year or at least take a vacation during this week.  I actually did that once; our whole family went on a cruise.  It was the easiest anniversary of them all.

Short of the cruise, I am stay-cationing this time.  I’ll let you know how it works out.  But the point is that you have to do what’s right for you.  This feels right this year.

I’ve been reading the journal I was keeping in 2004.  What I wrote on those pages are my only verbatim memories not clouded by time.  On September 6, 2004, I wrote down that I thought my mother was depressed.  My concern at the time was that I hadn’t eaten well that week; my parents had been keeping a lot of junk food around and I guess I’d been eating it.  I was complaining about the amount of junk they were eating and simply dismissed it as being something my mom was doing because she was depressed.  I simply thought she was suffering from depression!

I remember someone at some point telling me someone they had lost to CJD was obsessed with junk food before they got really sick.  I wish I could remember who that was.  If I remember right, it was sweets that my mom wanted all the time. I think there were thinks like cookies, donuts, and cakes around — but that’s one of those memories clouded by time.

Has anyone else had a similar experience?  In September of 2004, my mom was exactly two months from her death.  The disease was about to progress rapidly.  I knew nothing.  I couldn’t have been more clueless at the time.

“My father-in-law is lying in a hospital bed right now. Mute, blind, incontinent, with a feeding tube, and unable to move except for the spasmodic jerking movements of his arms & legs. Sic weeks ago he was holding his great grandson and cracking jokes, going up to his cabin with his dog and working on the fence. He’s in the VA hospital at home now, after being flown to the Denver VA, where the doctors diagnosed him with CJD (but not definitively – of course). We’re waiting for the spinal test to come back (testing for the 14-3-3 protein). So far – they haven’t seen the indications they might see on an EEG. Basically – the only thing they are basing the diagnosis on is his symptom list, the rapid progression, and the fact that EVERY OTHER test they’ve done has come back completely normal (including a full-body CAT scan, MRIs, blood tests, etc.) I have a question for anyone who has been through this with someone: He has “woken up” about three times in the past few days, and said something completely normal (after not having said a word for over a week). The family is holding on to that fact – as a possible indication that this is NOT CJD. Has anyone ever seen momentarily lapses of apparent consciousness in patients with CJD (when symptoms are this progressed)?”

The USDA should be making headlines because Secretary Tom Vilsack has yet to mandate testing every cow meant for human consumption for BSE.  Someone like Shirley Sherrod should only make headlines over her actions on the job. In other words, we should only care what decisions she makes that affect our nation’s food supply.  But I am not sure what those may be, because the week’s news cycle made this all about race, about black versus white, in the year 2010.  So we moved backwards in race relations and food inspection this week.  Thanks again, USDA, for keeping your eye on the prize.  How many downer cows are stumbling to their deaths on American farms right now?  That should be the real question for the USDA to answer.