The ninth anniversary of my mom’s passing has passed — unceremoniously might I add. It’s been 9 years. we all process grief differently. This was the first year I just let it pass, just let it go. I marked the day of her birthday (November 9) by doing nothing. I spent time with friends. I was conscious of it being her birthday. I posted this message on Facebook for friends because it was where I was that day:
“I’m thankful today, on this day that my mother would have turned 65, for the chance to set things right in my life that my mother never set right in hers. I think most of us in my age group (and more) saw our mothers sacrifice and give to us and never once take care of themselves like we as women are meant to. I am thankful I finished my college degree at BU. I am thankful I make doctor and eye appointments. I am thankful for pursuing everything I want to do or need to do to take care of myself like becoming a Reiki practitioner, making good friends, and having hobbies. I didn’t see my mother do this for herself. I’m sure it’s part of the reason for ill health at a young age. Young ladies reading this, take care of YOU. Put YOU first. I have a piece of art my mother never finished on my desk always as a reminder.”
There are a great deal things I can do better in my life than she did in hers. This would be true for any daughter who has lost a mother. My mother did NOT take care of her health. She had worn the same pair of hard contact lenses for 20 years. I had only learned this in the months prior to her death. I am amazed to this day that a person can put her own health on the back burner for decades. I’m sure there’s some link between self-neglect and CJD but I am also certain it goes many layers deeper than that and for me to simply type these words is oversimplifying it at best.
To mark the day of her passing (November 10), I posted my annual request for research dollars for UCSF:
“My mother died on this day in 2004 of a genetic neurodegenerative brain disease called CJD. In 2012, I paid my own way to San Francisco and paid for my own lodging, food, transportation etc. so that all of Dr. Geschwind’s research dollars will go to a clinical diagnosis and the CURE. UCSF needs more research dollars. Help me pay it forward and donate in Phyllis Larson’s honor today! Thank you.”
Some years, someone makes a donation.
After nine years, this is what it is. The grief is past. There has been much therapy and counseling over the years. I’m past that. Nothing more than the annual “oh yeah that happened this week and what a trip” reaction to it. I am merely conscious of it. I am conscious that November 2 was the last “normal” day of my life in 2004 before the weirdness of CJD crept in for good. There are certain calendar days that stick out like that. But my mother was only in a hospital or hospice for a total of a month and two days.
Some 32 days. That was it.
I know most aren’t as “fortunate” as my family. Ha!
If your loved on has died of CJD it’s hard to get over, yes. I agree with that. Unspeakable grief is the problem. If you are struggling, you need help. I think many who have dealt with CJD don’t talk about it. Many see it as a taboo. Why? It’s not. Maybe you have a cultural issue at work there. I don’t know. I’ve been fearless in talking about this (within reason) for the past nine years. Speak about it. You will get over it, through it, past it. The more we talk about CJD or our grief at having to endure such a strange loss, the more we help the next person. Until there is a cure, there will always be a next person.
This is not something you can fix on your own. If you are sitting at the bottom of the abyss of grief over losing a loved on to CJD, get help. See a medical professional for depression. Get counseling. See a psychiatrist. Get meds if you have to. Take a trip. Many have symptoms of PTSD after going through this. Take care of yourself. I am speaking of this grief today because I remember the pain. I am grateful it is nine years later and I feel at peace with this loss to this disease that runs in my family.
Especially if your CJD loss is a genetic one — get help. Grief doesn’t have to be unspeakable. It’s a natural part of life and it doesn’t have to beat you.
Eric & Sonia have their GSS study fully funded now. Every dollar they raise in the next two weeks will go towards researching FFI and E200K fCJD (the latter of which runs in my family so I am so excited about this). http://www.prionalliance.org/2013/09/17/gss-study-funded-now-fundraising-for-ffi-and-e200k/
If you don’t like it, be a part of the solution.
So I left the following comment on Boston.com’s status:
“CJD is genetic in my family. Please allow me to make one point clear to you. Humans do not get “mad cow disease.” That is the prion disease cows get called BSE. Humans get CJD in its various forms. If any of those exposed ever develop the disease, they will display symptoms of iatrogenic CJD. If any of this upsets you, please donate to the research being done at UCSF Memory & Aging Center. It will help people like the ones exposed as well as people like myself — all of us who are at risk of developing CJD. Thank you.”
Please check this out and share this link:
Add some dollars to their funding if you can. Sonia & Eric are so affected by genetic prion disease, they went back to school so they could study it. They are in the trenches and their own lives hang in their balance. I would have done the same thing if only I could do math! (We suspect I have discalculia, how’s that for neuro fun?) Cheers to the smart kids who can don a labcoat and get to work. This is valuable work that may save theirs, my, or ALL our lives someday. Please pitch in if you can!
Talk about fundraising! My friend and CJD sister in North Caroline, Jennifer Johnson, is hosting the SK5K Race of Hope today. They’ve raised over $14,000 for CJD research at NORD. The huge payout in awareness raising is everyone involved in today’s race now is just a little more knowledgeable about CJD. Great job, Jennifer and everyone in Clemmons, North Carolina. Check out event info here: http://sk5kraceofhope.com
I am very sorry. Where we stand today, there is still no known cure for CJD. I believe one exists and we just haven’t found it yet.
Every few weeks someone finds this blog I’ve had for the last eight years, which is called “CURE CJD.” It is called that because that is the goal – to eventually cure CJD. This blog is not called that because there is a cure for CJD; there is not. Today, April 26, 2013 no cure for CJD exists.
So please understand that before you email me asking me to give you information on the cure. It is insulting to me as someone who has lost a mother and uncle to fCJD, it’s socially awkward, and shows you never read much of this blog at all. There are eight years worth of writing here. I know you won’t read more than whatever posts are currently appearing on this front page.
This blog started as a place for me to express my grief and suffering over the loss of my mother to CJD. I have been extremely open and honest. I have been transparent in every way. This blog hasn’t made me a cent. It is a labor of love.
Then my uncle died in 2008. We were not on speaking terms when he died. But what that death did to me was kickstart my life in an odd way. How can you sit by and watch family members get picked off by a dreadful disease without having it affect your every daily life choice? That’s when my bi-anual mid-life crises began (laugh) and the amazing effort to complete bucket list items began.
So if you read through all these blog posts (and the early ones from eight years ago at CJDtalk.blogspot.com) you will not find a cure (yet) but you will find my story.
People still think a neurodegenerative brain disease in younger people is something that is taboo. People still mistakenly think this is “mad cow disease” and therefore the patients are “mad” or “crazy.” People still think this only happens to one in one million people, which is erroneous as there is no current system in place to offer a clinical diagnosis of CJD in a hospital setting. There is no current system to track deaths in America by CJD. The only definitive diagnosis is given after death in an autopsy.
And I am tired of writing about this because I have written some version of that sentence a million times on here, in forums, and in emails for the past eight years.
I recently found out there is also no current system in place to track deaths in America by a similar disease, multiple sclerosis. More on that later. That’s a whole separate post!
So here is where were are at. There is no cure. Yet. I’ve been spending much of the last eight years finding my way and living a life I can be proud that I have lived. This is because I could be in danger of dying of fCJD too. I am still refocusing the efforts of this blog. I am currently doing my first Team In Training event for the Leukemia & Lymphoma Society (to avenge a friend’s suffering by blood cancer). Because of this experience, I am learning hard lessons on patient advocacy, awareness raising, and fundraising.
I am learning very good lessons and appreciate this experience so much! I’d like to take what I am learning and apply it to fundraising for a disease I find extremely difficult to make people care about — CJD. Cancer is common and, in cases like my friend April’s AML, it is curable.
But CJD is growing more common. It is insulting and wrong on many levels, but to people unlike myself who aren’t in the trenches of this disease, CJD is still honestly “rare.” It has never been something I could make people care about in eight-second sound bites. Every patient suffers different symptoms and a different length of disease. Stigmas surround CJD. It’s not media-friendly.
I am having trouble some days getting people to care about blood cancers and my LLS fundraising — and everyone knows about cancer. How do I get them to care about something that is even harder to understand?
I am closer than ever to being able to answer this question…
There are some things I have hope for and some I do not. I say this because every couple months or so I get an email from a very hopeful family who thinks there is treatment, a cure, or something they can do for a loved one who has (somehow) been “diagnosed” with CJD. If you want to be hopeful, look for clinical trials in your city/state/country. For example, in the United States, we can search for clinical trials at the ClinicalTrials.gov website.
Do a search. Go ahead, I’ll wait.
Yeah…so two quinacrene studies? Thanks but no thanks. I thought we’d given up on that long ago…
There’s also a study from 2010… Well, it’s 2013 now. You get the idea. You’re going to have to be in the right city a the right time in order to get your loved one in on any clinical trials as they suffer from CJD. Then there’s the ethical question of prolonging their life — a.k.a their misery — through a clinical trial. I am not sure I would personally want mine prolonged in that fashion. Of course, the E200K in my family kills so quickly, I’m not sure patients like ours would get more than 2 months out of a trial at most. You never know. You could be the first person saved, right? Someone had to be the first to receive FDR’s polio cure, right?
So that’s the kind of “hope” we end up having.
When I say on here that I “have hope,” it’s hope for the next generation of my family. My generation may get lucky. You never know. But if you’re coming here with a relative who is currently suffering from CJD, they are dying. I am sorry. There’s not much modern medicine can do for them.
I joined a research study at UCSF. It might help someday. This is about all I can do at this time. But I felt, out of hope, that I had to try and offer myself up to be researched. UCSF is doing a great deal of research studies and clinical trials. If you are in or near or can somehow get to UCSF in San Francisco, California, then go for it.
Take a look here:
As you can see, there are a ton more clinical trials listed than the government website lists. (Ok, two more but at least they are current). Also, UCSF is on a budget. For instance, I paid my way out there and back last year to enroll in the study. I paid for all my travel expenses. I chose not to stay overnight at the hospital so I wouldn’t cost them more money. I really want the money they have to go towards researching my brain health, not towards putting me up for a night and feeding me hospital food. I spent that night drinking with friends instead. ;) No, they didn’t pay me to participate in the UCSF study.
Hope is the place to be. But you have to be realistic about it. I hope I can enter more research studies. I hope UCSF can find something useful out of what I have given so far, and will continue to give of myself in years to come. Medical research is slow and expensive. Be patient and be realistic, but never lose hope.
Research studies to join at the UCSF Memory & Aging Center:
There are six clinical trials listed right now at UCSF, all for Alzheimer’s Disease:
As you can see, there are currently no options for a patient with CJD to undergo a clinical trial in America that I personally know of right now. Maybe there are some I am unaware of at another research institution. Please tell me in the comments and give a link if you know of one at any time. (It is Sunday, April 7, 2013, so if you comment anytime now or years from now I will still see your comment).
All this is for me is life with certain possibilities. In my last post, I touched on all the stuff I felt compelled to do with my life once I accepted the possibility of my mortality. That’s a 50/50 shot that I carry the genetic mutation. Even then, there’s no guarantee I will die of CJD. My paternal grandfather is still alive even though two out of three of his children have died of CJD. He is one of 14 children and only one of them died of CJD. So if you’re trying to make this a numbers game, good luck. If you want a guarantee of survival or death, good luck. Neither is promised. So I live life with the possibility that anything can happen here.
But just in case life is short, I take some risks. I drove in a blinding snowstorm the other morning because I didn’t want to miss work and be shut in for the day. I’m going to run a marathon, probably not the best choice for someone (allegedly) missing an ankle ligament. But what if my life is short? I don’t want to miss out! So I accept the possibilities and live life to the fullest.
There I go with that acceptance thing again. If you’re finding this blog and CJD runs in your family, or even if you just found out your loved one who died of CJD did carry a genetic mutation you never knew your family carried before (that’s who I was in 2004), I’m going to give you some advice that has worked for me. Let go. Release. You can’t control this. All you can control is your own personal choices, so make good ones. The answer to being able to reach acceptance and find peace in my life has been to live well and try every new thing that comes along. It’s simple and it’s enough.
So why does this post have a screen shot from “Scarface” at the top that says, “The World Is Yours?” I have this passion for running that not even 14.2 inches of snow in Wichita last week could kill. I am training for the San Diego Rock N’ Roll Marathon on June 2 for the Leukemia & Lymphoma Society’s Team In Training. I am honoring my friend April, who celebrates ten years of survival this year! This is an aspect of life I am taking very seriously. I am just so happy and grateful my friend is still here. A few of my teammates are honoring those they lost, some of those children.
I felt an outpouring of love well up in my heart as I ran yesterday. Maybe it was just the runner’s high. Another neighbor entered the gym and turned on the TV as she hopped on the treadmill next to mine. She turned on “Scarface,” walked for a half hour and took off, leaving the violent flick blaring on the TV. So for two hours of my indoor, 8-mile run, I had that movie to keep me company and combat some of the treadmill boredom.
I had a lot of time to think of others I have helped, not just April or the LLS. I’m on the board of the Kansas Writers Association. I help a friend of mine with his fundraisers for AIDS patients and will probably be joining his charity’s board soon too. I ticked off in my head all the charitable stuff I’ve done or any moment I made a difference in life. How a certain broadcast interview may have helped one young girl get off the streets. Attending a human trafficking conference. Yes, I’m a do gooder. I’m a research guinea pig for UCSF and proud of it. I’ll be happy to publicize a good cause or good work done by a friend. For instance, buy my friend Samantha’s books. They’re good. And she works her ass off.
I was thinking about all these people who have become a part of my life and how we are all trying to reach the same goal here. We all want to create a better world for the next person. That’s why we create non-profts in help each other out. We’re all here together to create new possibilities, not to accept things the way they are. So when I say ‘acceptance,’ I don’t mean you lay down and die.
I have accepted that the rest of my life, whether it’s 20 or 50 years, will be awesome. I’ve had over eight years since my mom’s death and really feel suddenly like I have perspective. I’ve accomplished a lot of what I set out to do and done some things I never dreamed of a decade ago. I gave myself permission to live. I’ve chosen to live in a place where things are possible and I don’t give up.
I got a nasty virus for two weeks and didn’t run at all. I got back to training this week for the marathon and had to settle for the treadmill instead of the road. Not even 14.2 inches of snow can keep me away from living my life — that means marathon training. I’m an insane person who decided to push it to eight miles yesterday, even though I probably should have done six and called it a day. But I don’t want to get behind on miles and miss out. This is my chance to run a marathon!
I’ve never seen “Scarface” all the way through. I just know it’s a gangster movie with the famous line of, “Say hello to my little friend!” So imagine me running these eight miles indoors and thinking of all this emotional stuff in my life, the level of determination I possess, listening to my favorite upbeat music, and thinking of how much my ass and feet hurt during miles six through eight. It took me 122 minutes and 40 seconds to make it to the eighth mile. Just as I got there, “Scarface” ended. The last scene of the movie ends with the camera on the indoor fountain with the globe in the middle and the pink neon letters that say, “The World Is Yours.”
It was a personally fitting moment for me. You don’t need to run eight miles to have this feeling. You don’t have to be a runner. Whatever challenge this life has given you, whatever seems impossible now that CJD has become a part of your life, know that it is not impossible. The world is yours, your life is yours. You must accept that CJD has come into your life, but you don’t have to let it beat you.
Sure, it may ultimately kill me someday. But it has not beat me. Not once.