Today marks a year since my mum died. It took me 5 weeks to say out loud “my mum is dead,” and saying those words physically tore through my body.
Today it still feels like we lost her yesterday. But to reflect on that period of my life, seems like a lifetime ago.
I lost my mum to a disease called Creutzfeldt-Jacobs Disease. It affects about 1 in 1 million people. We had 10 days left with her after we received the diagnosis and prognosis, following 6 weeks of tests and a rapid decline into a vegetative state.
Just in case were you wondering — no, it’s not Mad Cow Disease, a common misconception of this diagnosis.
We didn’t tell many people what disease took her. The hopelessness and brutality of what it did almost made the disease almost unspeakable.
This is what you get when you Google it:
Pretty brutal to read huh?
The dates of her fast decline are pretty much seared into my brain. The change of seasons from Autumn to Winter now smells like fear.
Mum was first misdiagnosed with MS when she started to lose some mobility and had tingling in the right side of her body.
The day of Patrick Cronin’s extremely sad and unnecessary funeral we realised that her emotional and logical reasoning was a bit off. Two weeks later, she couldn’t walk and we realised she was having seizures. A week after that she was put into an induced coma to test for epilepsy.
5 days later, we received the news none of us will ever understand.
I was reading an article last week that said;
“It’s not just loss that we feel when we have our mothers taken from us, the reality is far more violent. It is an un-mothering that feels raw and fundamental, a pain that reaches all the way down to your ligaments and bones. If you think about it, before we are born, we swirl in the cocoon of that space in our mothers’ wombs. Our first firmament, literally, our first homes, the universe from whose substance we were formed.”
Whilst I don’t know why mum had to leave so early, what I have discovered, is that death is the one and only thing that every single living creature in this universe shares. Your birth isn’t really inevitable. Not every egg and sperm is fertilized. Not everyone falls in love. Not everyone gives birth.
But everyone dies.
And when you accept that death is inevitable and somehow find beauty in it, I truly believe that your entire outlook on the world changes.
Whilst the past year has sucked, my life has been filled with more love and gratitude than I’ve ever experienced in my 24 years of life.
The support that my family has received over the past year is so overwhelming that I’m still left speechless just thinking about.
It took me nearly 6 months to stand up in front of a group again without becoming overwhelmed and lost for words as I did the day of the funeral, looking up from my notes and seeing 700 people staring back at me, all beaming with love and experiencing the same sadness, offering unwavering support.
700 people there to say goodbye to my mum.
It was the most humbling experience of my life.
I want to share with you some of my experiences over the past year today in the hope that when someone you know inevitably dies, you can trust that you’ll find joy again.
Rewriting your story
“We live in a culture where it has been rubbed into us in every conceivable way that to die is a terrible thing. And that is a tremendous disease from which our culture in particular suffers.” — Alan Watts
In Western society, we’re told at a young age that the success story of your life, should go something like this…
“Go to school, get a degree, find a job, fall in love, buy a house, marry the person you bought that house with, have kids, retire and finally travel. Don’t worry about dying, you’ll be so old and well-lived that you’ll be happy to die.”
And when that doesn’t happen, people panic! They feel like a failure, they suffer from mental illness, they marry the wrong person, they work in jobs that drain their souls, they commit suicide.
Our modern world has been designed to brainwash us and we just accept it as “life.”
It’s far from living.
The first thing that flashed through my mind when Dad called me to say they were confirming the diagnosis of CJD was “Mum is never going to become a Grandmother.”
That was part of ‘our’ story that mum and I had written together. It was her secondary life goal to becoming a mother. Then I saw myself trying on a wedding dress and thought “If I get married, I’ll have no mum at my wedding.”
My heart was breaking to pieces as I saw my life without mum flash before my eyes as I curled up in a ball down some side street in Saint Kilda. It was so painful to think about my future, it took me weeks to think of any day beyond that day.
What I had to do and my psychotherapist helped me do, was rebuild the foundations of my life story without a mother.
I had to.
That was the reality. I couldn’t live in a bubble of today forever or I’d never get out of my pyjamas.
When I finally let myself see my world and my future without my mum standing next to me, it was like seeing the world new again.
A clean whiteboard. And I could map-out whatever I wanted for myself that made me feel safe.
That’s really all we do isn’t it? Tell ourselves stories that make us feel safe?
So dad, if you read this, you’ll be wearing a mother-of-the-bride dress at my wedding.
Once you’ve re-written your story once, you realise you can pretty much do it any time you like and you feel stronger than ever before.
The Stages of Grief
You know the stages of grief: First comes denial, then anger, bargaining, depression and finally acceptance.
Whilst psychologists have since discovered that this isn’t linear, it’s an extraordinarily narrow view of what it’s like to grieve.
For me, acceptance happened straight away. How could it not? We had zero hope, no treatment, no more tests, not one case of survival to give us even a glimmer of hope.
Bargaining? After seeing what the Cronin’s went through, losing their youngest son Pat to a cowardly punch at a pub brawl with no time to say goodbye just weeks before, I was so grateful and felt blessed that we had time to make mum feel like a princess and make her laugh for the last 2 weeks of her life.
Grief? duh… I had a doctor’s referred counsellor officially diagnose me with ‘Grief Disorder’ a week after mum’s funeral.
I called her a fuckwit and never went back. I found a ‘holistic’ therapist instead who understood that I didn’t need a label, I needed someone to help my subconscious process the trauma that this experience had put me through.
Whilst I experienced about 15 different emotions every 5 minutes, the one that affected me the most was fear.
For weeks and weeks I dreamt about my friends dying, tragically and graphically. Some of them were like Game of Thrones meets my real life… Not a joke.
I was always worried about Dad, Brige and James.
Was James going to get in a car accident?
Was Brigette going to accidentally poison herself in the lab?
Does dad have cancer?
It was constant, consuming and terrifying. I’d never really experienced anxiety before and it took me a lot of mediation and writing to move past it and take my confidence back.
My mantra became, “Don’t cry because it’s over, smile because it happened.”
Post Traumatic Growth
Psychologists have more recently been studying post-traumatic growth instead of the stages of grief.
They’re pretty straightforward so I won’t explain it, but it’s comforting to see those stages and say “You know what, I have grown. I appreciate life more now I haven’t gone backwards, I’m not broken. There may be some kind of meaning I can find in this tragedy.”
Finding Your Resources
As a logical and rational personal, I compartmentalised my grief, if people cried when they spoke to me me, I’d swallow my own tears and sometimes awkwardly laugh.
I felt like a burden and automatically comforted them.
I knew that if I started to cry, I wouldn’t know what type of cry it would be.
It could’ve been that crying that scared people.
I’m also a really ugly crier.
But what I did know is that I had to cry.
I set myself times, almost in my calendar, to let go and I made sure I cried and became consumed by whatever I was feeling in my body so that I could begin healing.
I was reading Sheryl Sandberg’s new book Option B the other week and she spoke about the concept of the ‘button.’
A psychology study put people in a high-stress environment including heat, loud noises and were then told to pass a test.
They either left the room in frustration, cried, failed the test and all ended up experiencing physiological fight-or-flight responses, leaving with high-levels of cortisol.
The second group were put in the same high-levels of stress, challenged to pass the test, but were given a button to press an ‘opt out’ if they couldn’t handle the high-stress environment.
The people with the button all passed the test and were seen to have significantly less level cortisol. They were able to handle the stress. They didn’t need to press the button, but knew that button would be there to keep them safe if it became too much.
All of my friends, you were my buttons.
I also knew that I needed professionals if I were going to process this shit properly.
So made a list of all the help I needed to make it through, as I knew I couldn’t do it alone. I thought, fuck it, I’ll find people whose job it was to help me.
I found a psychotherapist, a spiritual mentor, an crystal aura healer, a personal trainer, a great Chinese massage place for $1 a minute on Swan St, and a business coach.
I also got told from someone “If people offer to help you, just say yes, it’s more for them than to feel like they can do something.”
So I said to yes the angels who wanted to cook us dinner, clean our house, buy us groceries, give me a head pat. It was overwhelming and I’m so stoked we said yes because coming home to a home cooked meal without having to actually cook it every night after work was bliss.
All I had to do was buy the bottles of wine.
Between wine, I then consumed book after video after blog, covering Hinduism, the afterlife, the Eastern vs Western views of death, Chinese energy to learn how to conserve and tap into mine, books on psychology, reading other people’s stories etc.
Some turn to faith, spirituality or extreme religion, I just tapped into as many resources as I could and took from it what felt right instinctively.
I knew logically that I should listen to my gut and learn everything I could as to come out of this and grow somehow, so in every instance I did.
A few of my favourite books:
- The Tibetan Book of Living and Dying
- The Power of Now — Eckhart Tolle
- Dying to be me — Anita Moorjani
- The Perfect Day Plan — Jost Sauer
- Option B — Sheryl Sandberg
I also watched some pretty crazy shit on Gaia about spirituality if you want to challenge yourself.
One of the most important things to do at any time, is to look at yourself from within, not the outside in. The outside in where anxiety will take over your body. That’s when society will decide who you are.
I spent a lot of time terrified that my identity would become “The girl with the dead mum.”
After all, I was brought up on movies and TV shows about people’s entire lives being shaped by their dead parents.
Harry Potter, the Vampire Diaries, Cinderella, Beauty and the Beast, The Lion King, Snow White. Plus a whole lot of other like cool stuff I watched…
I was always thinking, should I be crying at work so people know I’m sad? That’s what they do in the movies? Do I collapse on the dance floor at my birthday as I realise I shouldn’t deserve happiness ever again?
Am I actually a wizard?
When does the plot kick in when I get to become a princess as the trade off for losing my mother at 23?
As dad says, turn to page 25 of the manual for what to do when you lose your wife. It says “No fucking idea.”
You just gotta make it up, listen to your instincts and remember that life is fleeting and whatever comes next is unknown. Don’t waste it feeling sorry for yourself and butt hurt that it was you and not that mean person over there.
I read this quote about 4 years:
“In every situation, you get to choose how you perceive and then react to that situation.”
It changed my life.
The one thing we never denied ourselves was to choose joy.
Music is on in our house every day, it was on the day mum died, and the day after, and the day after that. If our favourite songs came on the radio, that music was turned up and laughter pursued. We never denied ourselves happiness.
We could’ve chosen despair, anger, fury, hatred and denied our own smiles, but we chose to lean into the sadness and find joy every day.
Mum’s diagnosis was the most hopeless feeling. You hear stories about Stage 4 Cancer sufferers finding strength to heal to remission and people learning to walk again after severing a spinal cord.
But it’s not all too often you get a “There’s absolutely nothing we can do and there isn’t much time left.”
We all made the decision to chose to find happiness and gratitude in each and every day and most of that came from being surrounded by some of the world’s most incredible friends.
This is my story. My dad, brother and sister’s stories I’m sure are very different as are all of those who have experienced losing a loved one to CJD.
I appreciate if you’ve taken the time to read this, it was cathartic to ‘put pen to paper.’ I highly recommend it if you’re going through anything yourself.
Feel free to reach out and chat if you want.
If you’d like to know more about CJD head over to the CJD Support Network. We will be fundraising in November for the foundation, running in the City to Sea event in Melbourne. Unfortunately this disease is so rare it doesn’t really get any government funding so you better start training!
One last tip, I highly recommend getting a puppy when your sad.