Cure CJD

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

Unspeakable grief is exactly the problem.

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. 

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November 12, 2013 - Posted by | Uncategorized

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