What I’ve learned in 15 years since losing my mother to CJD — and finding out I (possibly) face the same fate
This isn’t a story about grieving a parent — it’s a story about accepting one’s mortality at a young age and basing all decisions off the fact that I didn’t think I’d live longer than 31 more years beyond 2004. Well, 15 of those are already gone. 16 to go…if I am one of the unlucky ones. I’ve lived every day since 11-10-2004 as though the sand in the hourglass is running low.
Buckle up — this is a long post that gives you some more of my story.
What is CJD?
It’s a prion disease; many people call it the “human form of mad cow disease” but I don’t like the phrase MCD at all. My family carries a certain mutation of CJD that takes the person very quickly. It starts with a persistent, dry cough that isn’t very noticeable at first. You can google CJD to learn more, but with one caveat — this does NOT happen to the false statistic of “one in one million people.”
Reason being, you can’t find what you don’t look for. If it isn’t surveilled, it doesn’t get found and placed into the rest of the data. This happens because the only diagnosis is from autopsy. Not everyone gets one of those done for a variety of reasons, which I won’t get into. You can check out my older blogs, CureCJD.wordpress.com and CJDTalk.blogspot.com to learn more. Pretty sure I’ve already written in detail about it, though very long ago.
Yup, that was Blogspot. As in the Google platform I began blogging on shortly after my mom’s death in 2004. Times have really changed. Formats of finding others like myself to relate to have changed, too. Many of us started in a “Yahoo Group,” which was a listserv, if you’re old enough to remember getting on those… Now, you can get on a Facebook group for support, and we CJD families do.
My first problem after my mother’s death was my poor first attempt at sobriety. I stopped drinking cold turkey with no support and a family of drunks.
I quickly stopped being able to get along with my family. ALL the family of origin issues and my lack of coping skills came up immediately, though I didn’t know or understand any of that at the time. That’s why my stint of sobriety didn’t make it too much father than the summer of 2005.
I also had to accept my own mortality. We knew by then that two people in my family, my mother and her great uncle, had carried the mutation of CJD and it had killed them. We also knew my grandfather was the carrier. My mother’s brother died in 2008. My grandfather died many years later in his early 90s, carrying the genetic mutation but never developing it. He died of something other than CJD, though he had to endure watching 2/3 of his children perish from it.
I did seek bereavement counseling, which helped. But it didn’t crack the surface of the emotional issues I had back then, my former substance abuse, and the severe and debilitating codependency I suffered from back then. I was very alone and was desperate to make my new step-family work. It didn’t. Oh yes, ALL of this happened in less than ONE YEAR. By late 2005, I had an entirely new life. I was young and stupid enough to pretend that was healthy and interpreted it as a success.
I changed everything. I even quit my job, tried a new one, then another new one, before finally falling into freelancing in 2006. I fell into a very unhealthy relationship with a man who was similarly wounded as I was — there were just so many layers of codependency and unhealed family issues. My drinking became worse, I started attending Boston University, and I just kept rolling on…with little intervention as I wasn’t surrounded by anyone who would have actually done that.
Until 2008. That’s when it all changed.
When my mother died in 2004, I took small spiritual steps. I was reading about Tibetan Buddhism and doing yoga. I was beginning to listen to music that was a more mass-appeal Kirtan and trying to meditate — or just stay calm. My step-family began to take me to their style of church (no longer my preference) and I began to answer a nagging voice that kept telling me, “There is something MORE.”
In 2008, I left freelancing to return to corporate broadcasting, dumped the boyfriend, and finally began to find my soul family. This is when I began to awaken, choose churches on my own (I still struggle with finding one to this day), and find the blend of “woo-woo spirituality” that feeds me today.
This podcast is a condensed version of this, and I won’t be able to cover ALL this on the Fearless 5 Podcast episode #56. (It’s above). You’re getting the “Cliffs Notes” in the podcast and this blog you’re reading now is the meat of it. I get tired of telling my story. I really do. Years of going to those counter-productive XA meetings and being forced to do it under the guise of “service to others” burnt me out on it. I have learned when to tell it and when to hold back.
So that’s just a little chunk of the story and I’ll leave it at that. I want to be of service, but I don’t know how much telling and re-telling the story is really going to do for you. So I’m going to jump ahead to what I learned in case you, too, are struggling with grief and having your world fall apart.
Now, onto what I learned
Over all these years.
Environment is everything
My environment was made up of mostly unhelpful people with very few helpful ideas in 2004. I had some friends, a new job, and a gym I belonged to. That was ALL the support I had. But, you choose your environment. I didn’t know this at the time. I didn’t know I was the architect of my own destiny. I didn’t realize I needed to start living on purpose. I just lived wherever the wind took me.
My life didn’t light up until 2008, when I began to choose to make the changes to my environment I needed. New job with potential for growth, new friends, more time and space for yoga, a new home, and I started hanging around the Southwest Institute of the Healing Arts. I later attended the school online for my life coaching certification. The seed was planted in 2008. Also, this was four years after my mother’s death. There were four years of stunted growth and failed attempts at happiness until I got to be really on a roll.
I learned in 2008 that environment was everything. Where I spent my time and who I spent it with was vital. I was around true friends I really connected with who helped me so much. One even saved me from severe illness by spotting my gluten intolerance before I was capable! We all made vision boards together, had family dinners with our kids, and yes — this was even back when I met my kid.
It was all because I became the architect of a whole new environment for myself. This is also around the time the idea for Destiny Architecture was born! That idea stayed with me until I started DestinyArchitecture.com in 2016, when I started as a coaching student at SWIHA!
Get all the therapy you possibly can
I am a believer in therapy and coaching. My very first opportunity to get counseling came when Hospice of the Valley in Phoenix, Arizona offered me a free year of bereavement counseling. I took it. I wanted it so bad. My mother hadn’t believed in psychotherapy. But this was also the women who wore the same hard contact lenses for the last 20 years of her life! (Something I only learned when she died).
I’ve had quite a few therapists over the years. The breakthroughs only came when I sought out a therapist who could help with my PTSD. I had PTSD from watching my mother die of CJD knowing I could very well die the same way. It’s a horrific disease to watch.
Do you have codependency? PTSD? Addiction? Anxiety? Depression? I had ALL of that in 2004…and I didn’t know it. When I got sober at age 33, my PTSD therapist actually had to explain to me the feelings I was having. She had to explain to me what I was experiencing was anxiety. I was so far out of touch with myself and my reality.
If you need therapy, get it. Even if you aren’t sure, go get it. Therapy is different that coaching. Therapy delves into your past. Coaching takes you where you are NOW and helps you get where you’re going. I started to receive coaching in 2008. Therapy was vital. I also believe coaching is vital, which I why I became certified in it and hung up my shingle. Everyone should pursue these services for themselves — in any way possible.
Life is short. But make a savings account.
I was 25 when CJD reared its ugly head in my life, threatening to take me, too. When you’re 25, you don’t understand what life can possibly be like when you’re in your 50s. The 50s is incidentally the decade in which the past two of my family members died of CJD. (Both were 56). One also died at age 69, so it’s a total crapshoot!
I decided to live life like it was short since then. I don’t know if that was the best idea, but here I am. That definitely fed some destructive spending and drinking habits. I morphed from, “live like you’re dying,” to “make sure to leave something behind.”
Build a savings and plan for retirement. Buy life insurance and make sure your family will be taken care of. But do the “life is short” stuff, too. I decided I’d become a radio personality and a writer. I decided I’d help people cure CJD. I decided I wanted to learn how to do all kinds of “woo-woo” things really bad. So I became a Reiki Master and then a Certified Transformational Life Coach. All of these decisions led me to the amazing friends and life I have today. You have to pursue your passions.
I also did some stupid stuff, too. There’s been a mid-life crisis annually. I’ve learned to keep it to tattoos and piercings because taking a header at 45 mph off that moped I didn’t know how to drive SUCKED. I also realized I didn’t want to jump out of planes after all.
But in my limited time I may (or may not) have left, I decided I am going to pursue my dreams so hard. So I opened this business, Destiny Architecture. I also cut my hair short because I don’t have time for long hair. That crap is a LOT of work!
I am impatient with “normal” people
You work a 40-hour week and watch Netflix? How boring. I get out of “work” chomping at the bit to do the things my soul needs. I want to meditate, spend time with God, talk on the phone with my friends, build my business, and CREATE something!
Dude. Build a life you don’t have to escape from.
But having faced my own mortality at a young age and having seen the things I’ve seen between CJD and addiction, I have no patience for when people are WASTING their life. I may be TOO productive.
Even in this season of my life, which has been rough for the past six months, I started this podcast! I doubled my page views in September. I just stay on my game. I stay disciplined. I keep going. I don’t give up. I don’t have a lot of time in the bigger picture of things.
There’s probably more. I’ll add it later… Or — more likely — write an additional blog.