What a difference five years makes in the emotions of this

Yesterday, November 2, marked five years to the day I was told my mother wasn’t going to be coming home.  Her neurologist took us into the most remote corner of the floor where my dad and I sat next to each other as we were told she wouldn’t be coming home.  We were hysterical–or at least I was–so we left after that.  It was around 5 pm on election day, 2004.  We had meant to go back into her room to see her again before we left for the night, but since I was such a mess, we walked past her room in a rush, hoping she would never notice how upset we were.

I think she did though.  The nurse told us the next morning that she had had nightmares and hallucinations about snakes crawling on her legs.  (She had always feared snakes).  It was her last communication that made any sense to anyone.  She sank into herself after that night and never came back, save for horrific screams the night she arrived at hospice and a final laugh two days before she died.  She had laughed at her brother’s joke.  Now he is dead too, having passed on last year.  Yes, from the same disease.

I have always known that she saw us upset when it wasn’t our intention for her to see it.  She had seen us walk past her room in our horrible state that day.  And she knew.  I do believe she knew she was dying before we did.  But that day, she knew that we finally knew.  So she withdrew as only a CJD patient can.  It’s like they fall into quicksand, but the quicksand is their own body.

I am telling you this because I can.  Today, I can.  Thoughts of this on November 2 for the last four years have burned me from the inside out.  But at five years now, I can share it.  I was actually surprised yesterday at how little pain I felt.  I just remembered the day.  I was fully conscious of what day it was in my life and what it meant.  But I didn’t feel like crawling into a hole.  My life is still forever changed from the events of October and November of 2004.  You don’t get to go back.  You don’t even get to visit the way it was.  Once you get over this fact, the feeling of loss diminishes.

Some of us grieve again each time we try to bring our memories of our past back to life.  We remember, then we snap back to the present, which is all we really have.  For me, I was like that.  Once I let the past go–and that took some time–the weight lifted.  But I also delved directly into my pain and got through it.  I believe you suffer longer if you bury your pain or ignore it.

My mother is still here, alive in our memories.  But I no longer miss the past where she was alive.  Instead, I remember her fondly as though she were only on a vacation.  She’s still a part of this life of ours, always affecting my father, my stepmother, and I.

“Only love can leave such a mark.”  –U2

Great article today from Edinburgh: A mother loses her son to vCJD

There is nothing that I think is more important–and more difficult–about CJD to convey than what it is like to watch a person’s body endure the suffering caused by this disease.  This article does a really great job of showing how a young man went from healthy to helpless in mere months.  This is why the disease must be taken seriously and not be the butt of jokes on shows like “The Simpsons.”

Seeing this happen to a human body has given plenty of us long-lasting PTSD symptoms.  You can’t watch a person go through this range of neurological symptoms and not have your perspective on life forever changed.  I know, even five years after my mother’s death, that there are some things I’ve seen that I will never get out of my head.

This one portion of the article really stands out for me and talks about Kate Madden’s son, Alan:

“Later he’s pictured in a wheelchair and lying in a hospital bed with padded sides to stop him smacking his face against the metal frame as his body was wracked by uncontrollable jerks. He’s blind and he’s mute, he’s lost control of his bodily functions and he’s dying.”

Imagine losing control of your bladder and being unable to swallow.  Imagine experiencing non-stop jerky muscle movements and seizures.  Imagine being completely unable to walk or even hold a glass to your lips.  Imagine this happening to someone you love.  You mother, sister, husband, grandparent, or worse–your own child.

My heart goes out to the Madden family and all families affected by CJD.

It’s great to get a discussion going.

Take a look at all the comments at the Ecorazzi post about the “mad cow” episode of “The Simpsons.”

I’d love it if you would check it out and add your thoughts if you haven’t already.  Part of what moves this cause forward is YOU.  If we aren’t surfing the web and commenting as a community on the things that are important to those of us what have endured this, we’re really missing out.  I encourage everyone to comment on blogs, tweet about CJD on Twitter with the hashtag #curecjd, and put up their own websites about CJD.  Put up your a blog about your experience.  Share what you’ve learned with others.  Join the discussion.  Please.

This is part of the reason why I post to my blog more now instead of to the CJD Voice Yahoo group.  The group serves its purpose and you’ll definitely learn more there in a day than you will learn here at my blog.  However, I believe in making my thoughts about CJD public.  I think there is a power in putting it out in the world for all to see.

If we aren’t posting online about this disease, it may as well not exist. But it does, and it’s a horrific ordeal for anyone involved in it.  Get your message out there.  Don’t be afraid; be more afraid that it doesn’t get out there.

What codon 129 does

Dr. Brian Appleby posted an interesting blog this morning about genetic susceptibility to kuru.  I thought it was interesting to learn more about what codon 129 is responsible for since wee see this on our NPDPSC autopsy paperwork.  As someone who lost a mother at age 56 to fCJD, I thought it was interesting to learn that codon 129 affects age of onset of the disease.  I’ll have to find my mom’s paperwork, because I can’t remember what she was on codon 129.

First “24,” Now “The Simpsons” Tackle Prion Disease

Another TV show is tackling the difficult and complicated matter of prion diseases.  This time it’s another Fox show, “The Simpsons,” however, the show does nothing to help my cause of educating people about CJD.  Instead, it does everything to reinforce stereotypes about “mad cow disease.”  Lisa Simpson is the only one who speaks the truth, calling it an “abomination” to feed cows to cows.

I found the clip on Ecorazzi, which does blog about the show with class.  Thank you, Ecorazzi for understanding that prion diseases are no laughing matter.

1. Vegetarians can, and have, contracted CJD.

2. CJD does not make every one of its victims “mad” or aggressive.  Usually when BSE affects a cow, it does alter the personality of the animal. A normally calm cow can become aggressive, but a normally aggressive cow can become calm.

3.  People do not get “mad cow disease.”  BSE is “mad cow disease” and affects cows.  If a person eats tainted meat and contracts a prion disease from it, it is called “vCJD.”

To be honest, I’m intrigued as to what’s going on at Fox.

That’s two shows now working CJD into their plots, even if not calling the disease by its proper name.  I also find it ironic that this ‘Simpsons’ episode shows cannibalism–when cannibalism in Papua New Guinea a couple hundred years ago is believed to have been the beginning of prion disease with Kuru.  There is another interesting moment where a brain comes out of a skull and gets covered with glasses and dentures, in effect personifying the brain.  (Relax, it’s a cartoon).  This also jumped out at me since CJD is a brain disease.  Seeing this reinforces what I’ve believed since “24″ saw Jack Bauer get CJD, that someone at Fox lost someone to CJD.

Who are you?

I see your grief working its way out through your art.  We need to talk–you can do so much for this cause that we share.

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.

Sincerely,

Heather Larson

October 7th & 8th are weird days for me.

Yesterday and today, together, mark five years since one of the most pivotal days of my life.  October 7, 2004 is what I consider to be the last normal and innocent day of my life.  October 8, 2004 was the day I knew something was terribly wrong with my mother.  It is the day I remember her calling me at work sounding a little high strung wanting to know if I’d be able to take her to the doctor at noon.  In those days, I was working in the national news unit at work, so I left at 11am each day.  She knew this; there was no reason why I wouldn’t be able to take her to the doctor.  She had already lost her independence at that point as she was already afraid to drive.  Her white Ford Thunderbird sat untouched, yet still impeccable, in the garage.

When I took her to her doctor’s appointment, she didn’t have one.  She had mixed up the dates and her appointment was actually supposed to be at noon on another day.  Imagine how weird that was to a 25 year old daughter with a 56 year old mother… So I took her back home and I took a nap.

Then, a phone call from a doctor wondering if my mother was suicidal.

What?

Apparently, while I was napping, she had called her neurologist’s office freaking out wondering why nobody could help her.  My mother already knew better than we did that something was terribly wrong with her.  She was in desperate survival mode, thinking if she rushed an MRI she may save her life.  She knew she was in danger more than we did.  I see that now, five years later.

To make a very long and traumatic story less long and deeply painful to recollect, she got her MRI that day.  I got the biggest scare of my life watching my mother unravel both physically and mentally before my eyes.  She could barely walk between her cerebellar ataxia and myoclonus.  She couldn’t communicate without telling the story of her day in circles, getting more and more angry each time she told it.  She was unable to end it, she just kept telling it, getting clearly more confused and agitated each time.  I wanted to take her to the emergency room.  She wouldn’t allow it.

When my father came home, we had a conference in the driveway.  I had to go to class that night; he would try to get her to an emergency room.  I didn’t think he could pull it off, but he did.  When I came home from school that night, he had gotten her to the hospital.

And she never came home again.

Today, I am working on moving to a smaller apartment in order to survive a furlough and pay decrease at work.  I am going through stuff in my closet and found my mother’s notes and drawings from when she had a hobby of tole painting.  It is so ironic to be going through her personal belongings today.  She wasn’t a big “stuff” person.  Her belongings were few.  But seeing her tole painting things reminds me of a once vibrant mother, a woman with goals and dreams.  She had hung onto that tole painting stuff since I was a baby, hoping to have time to return to her beloved painting hobby once again.  She didn’t, of course, having been robbed of her life at a young age by a genetic disease she didn’t know her family carried.

So what dreams sit on your shelf? What are you saving for later? What will your loved ones see unfinished when you die?

Think about it.  It will change the way you live your life today.

Just shut down the other site, CURECJD.org.

I didn’t think there was anything posted on that site that was important or up-to-date enough worth paying $5/month for, so this will be my only CJD-related site for now.  In case you’re wondering where it went, that’s why.  I haven’t yet had the time to make it into what I want it to be.  Plus, I have more fun posting blogs here at CureCJD.wordpress.com.

Dr. Appleby’s Blog

One of my fellow CJD friends on Facebook just pointed out Dr. Brian Appleby in Baltimore has a blog:

http://cjdblogger.blogspot.com/

He’s also on Twitter @CJDBlogger and @bsappleby.

Yes, the blog mentions the CJD conference and has some actual data on presymptomatic genetic testing. I didn’t realize anyone had such data! Cool.

Didn’t make the CJD Family Conference

I have never been to the conference, actually. I’d really rather not burn all my vacation time on the trip, which is a pretty hefty trek in both time and money from Phoenix. If I have time and money for only one major trip a year, it’s going to be a cruise. No offense. This is one of those life-is-short things I do. This is what it’s like when fCJD runs in your family. Time is really important and decisions on how to spend it can be tough. My dad isn’t interested in going with me; he has moved on. Or very likely doesn’t want to face his only child’s 50/50 shot at early mortality. Bringing back memories of his first wife’s death isn’t exactly his favorite pasttime, though once in a great while he’ll vent about what we went through with my mom in 2004.

So that’s the long-story about why I wasn’t there this month and why I’ve never been yet.

I know some folks who went. I believe they even wrote some blogs about it or planned to. I’d like to post links to their work here. If you were there and were reading this, please comment below and direct us to your site. I’d love to make an entire page of links from those who did attend this year’s conference.

If you went to the conference, please start a blog about it. Put up a web page. The more of us there are on the internet with blogs, websites, and Twitter accounts talking about CJD, the less this becomes a rare, hidden, or hush-hush thing. It helps us raise awareness and end stigmas. It helps us to be heard so we don’t have to hear b.s. statistics or slang used in describing this disease. It helps us to show that we are concerned about treatment, drugs, diagnostic tests, contamination, and a CURE.