What Did I Have to Lose?

I am very fortunate to have survived six brain and spine surgeries in less than one year of time. June 20, 2022 to March 1, 2023 marks the period of time when I lived in survival mode overwhelmed by uncertainty, anxiety, depression stuck in a fight or flight response. Like a deer caught in the headlights, I kept seeing flashes of lights and hearing voices but this was not really living. It was existing, moving one foot in front of the other, nothing more, nothing less.

Today, almost a year has passed since my last surgery. It has been a tumultuous year not only because I have changed, a lot, but also my financial situation changed, my career changed, my body changed, my ambitions changed. Imagine if everything you have ever known and appreciated and wished for all of a sudden became redundant, obsolete and completely irrelevant.

My journey of writing a memoir about this period of my life has brought to the surface the question of what did I have to lose?  As I delved deeper into my story, the answer revealed itself in unexpected ways.

1. My health - after my first surgery on June 20th, 2022, I ended up in a wheelchair unable to walk. My heart would race every time I moved going up as high as 160 beats per minute. I could not eat, I was ingesting liquids through a tube in my stomach taking nothing by mouth, not even water. I needed help with personal hygiene, dressing, my speech was very hoarse and hard to understand. It felt forced and uncomfortable when I tried to talk. It was like a switch was flipped and here I was alive but feeling dead inside.

2. The life I was used to - I was on maternity leave with a ten month old baby when all of a sudden I was pulled into brain and spine surgery. To mine and the doctor's surprise, it was a disaster that I was later told was not even necessary. It was the wrong treatment for the right condition.

3. Financial security - prior to my exuberantly expensive treatment outside of Canada, I was comfortable financially. I had a house recently purchased under an excellent interest rate, I had a new car, I had a Tax Free Savings Account (TFSA) with five figures in it, my safety net. It's fair to say that I was comfortable and blessed in every way given my age and the circumstances of my upbringing.

4. My brain - I am very protective over my best asset. When I was diagnosed with Chiari Malformation Type 1, it was like a train hit me. I could not believe that out of all the things that could be wrong, it turned out that my brain was too big for the skull and migrating into the spinal canal causing syrinx (cysts) to form in my spine. These cysts then blocked the flow of cerebrospinal fluid (CSF) and pressed on the nerves that run along the spinal cord causing neurological pain. Now imagine the reaction when on top of this tall order, several months later, I was also diagnosed with a brain tumour called chordoma. Of course the chordoma did not just occur, it was there, growing, for close to five years, undetected and undiagnosed by over ten doctors involved in my care. How difficult would life be for a 30-some year old mom with neurological damage to the brain? Or for anybody really to live with neurological damage?

When I contemplate what I had to lose, I think about my daughter's future, my role as a mom, my ability to function without needing assistance on a daily basis, and about quality of life. It is for these reasons and many more that I had no option except to seek treatment in the US, and specifically at a specialized skull base centre, for my rare conditions.

So, while the journey may have been arduous and the sacrifices great, I am reminded of the words of an old proverb: "The stream is always flowing to get you where you want to be." And as I navigate the twists and turns of life's ever-changing currents, I hold onto that belief, that many blessings still lay ahead.

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