Not my street cred: A story about livers and attitude

This is not my story. But it is a story, nonetheless.

Almost 2 years ago, I joined my current company. As part of the onboarding process, I was teamed with an “office mate”, a dude named CSD, to show me around, answer generic questions, be my go-to person about life at the office. He worked in Ops, was a manager and was chosen because he is “youngish, funny, outspoken, opinionated like you, Vanilla. Pretty sure you guys will really get along.” CSD quickly became my friend & my ally. Ops and Finance sometimes struggle to collaborate, so it was great having someone to keep me connected to the “real” world from up top in my ivory finance tower. CSD is super smart, efficient and pig-headed like me, but goes about office politics very differently from me. I value his opinion, and would often seek it out. We chatted almost every day.

About 9 months ago, CSD started missing work with semi-regular frequency, and working from home. I missed my buddy – who could I rant to, when I needed to say the things that I couldn’t, as a manager, say in front of my team? Why was CSD not in the office when I needed him? I didn’t pry, bc CSD has excellent work ethic, so his absences could only mean health issues, and that was none of my business. About 6 months ago, the frequency became almost weekly. I worried. But coworker-friends are different from non-coworker friends: privacy & boundaries are a thing. CSD eventually asked for my advice on how to broach a health update with senior management, because of my talent for writing: revealing enough to address their worries without over-sharing. That’s how I found out that CSD was up against a big-time health issue, not a small-time hypochondriac issue.

It’s no secret that the Qc healthcare system has not been good to my family (Exhibit A: my mom. Exhibit B: my youth, how I was branded a cripple before I turned 12. Exhibit C: my difficulty finding a GP). So when CSD’s health issues proved to be complicated to diagnose, I mourned, anticipating another life derailed by Fate and our bureaucratic, incompetent, healthcare system. It seemed so unfair: CSD was young, took care of himself, ate healthily, exercised regularly. Pretty sure he recycled.

Last week, CSD underwent a successful liver transplant, necessary to save his life. Chatting with him via Messenger, 24 hours after surgery:

Holy shit I’m kicking some ass and taking names! Vanilla, I’ve set 3 hospital records already. What did I tell you about that attitude, lol? I woke up today and demanded the ventilator be removed. I was eating solids and walking less than 24hours after the op. (Side note: that alone BLOWS MY MIND. In each of my surgeries requiring a general anesthetic, I was puking my guts out for almost 2-3 days, so violently did my body reject those drugs.) How? Well, I’m a bit of an animal. I hate hospitals. And I have a tenacious attitude to get the fuck out. I gave myself a goal: I get a new tv and PS4 pro if I can get released for home. Then in 6months a 2week vacation down south, and in 1year a 2week trip to Greece with the fam.

Here’s my philosophy: I don’t know what’s in front of me but I know I have to jump off the deep end and just keep swimming. Can’t turn around, just keep moving no matter how fast the current. (*)

I sat with a goofy, teary smile plastered on my face for an hour after getting the news his surgery was successful. My relief was so profound. I realized that for all these months, I’d assumed that his would not be a happy ending. That’s a pretty fucked up attitude to have. Maybe my friend is not wrong when she suggests I have room for improvement in my optimistic outlook on life. I marvel at CSD’s messages immediately post-op. That would not be my attitude. I am not sure I am even capable of that attitude (**). I do know that no matter what life throws at me, no matter how deep my despair, I have this seemingly endless capacity to keep putting one foot in front of the other, even when I can’t see my way forward – that is what makes this battle with my shadow so exhausting, but is also, as my therapist reminds me, what stops me from being suicidal, so “count your blessings Vanilla!

Still, I can draw certain parallels btn CSD’s approach to life, and my own. We both believe in investing in one’s health on a regular, preventive basis. His habit of regular exercise and mostly healthy diet is a huge factor in his supersonic recovery. Most of my therapy sessions are not covered by my insurance, because mental health is still taboo, and psychologists do not enrich Big Pharma and the economy, so insurance companies do not typically cover more than a handful of therapy sessions. I calculate that between my previous 20month therapy stint, and my current one, I’ve paid $10K out of pocket. This funk might be a bad one, but those $10K have given me a toolbox to help me put the breaks on this funk’s attempt to spiral into something much worse. Then I wonder if maybe we both are kidding ourselves: if Fate really wanted to fuck shit up, there is nothing anyone could do to prevent it.

I’m so happy Fate decided not to fuck shit up this time. And I’m so so happy that CSD’s story has a happy ending. 

This is the Facebook post CSD made public yesterday, which I share with y’all to raise awareness of both the medical condition and the organizations in our province and country that work to bridge the gaps in our healthcare system, and because I can’t possibly do a better job than he at conveying his inspiring attitude.

As many of you may not be aware today is the one week anniversary since I was the recipient of an orthotopic liver transplant. This emergency and life saving operation was required due to a very rare genetic blood disorder known as Budd-Chiari Syndrome and without it, I would have been lucky to have made it to my birthday next month.

Because things have been going quite well and (fingers crossed) I’m on my way to a successful recovery, today I finally felt comfortable to publicly start sharing a few photos of my story as well as take this opportunity to draw some much needed attention to highlight a few of the many, many amazing people and organizations that make life saving transplantation in Canada possible.

Firstly, I want to share my thanks to the selfless and incredible work of the nursing and support staff from the ICU and transplantation units at the MUHC Royal Victoria Hospital. Without them none of this would have been possible and I cannot begin to express my gratitude for the incredible quality of care. They, along with the doctors, have been the highlight of this whole experience. We are very fortunate in this country to have these men and women dedicated to our healthcare and make no mistake, they need our support. So especially if you’re a resident of Quebec, please take the time to become informed on the funding current situation. Our nurses and doctors deserve better.

Side note – I will be writing about my experiences in an upcoming op-ed in the coming weeks as I’ve had the chance to hear many, many of their stories. And, after spending a number of weeks deeply imbedded in the public healthcare environment, I’ve become a very strong advocate for a patient-specific healthcare system in this country.

Finally, I would like to draw attention to a number of the organizations that raise awareness, funding and provide support for transplantation in Canada. Please consider donating. Without them, many of our fellow Canadians would not be with us today.
The Canadian Transplant Association (CTA), is a registered charitable organization founded to enrich and celebrate life while promoting organ and tissue donation across Canada.
The Canadian Liver Foundation (CLF) is devoted to providing support for research and education into the causes, diagnoses, prevention and treatment of all liver disease.
CORD is Canada’s national network for organizations representing all those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.

Thanks, and look forward to sharing more of my story as I continue down the path towards better health and a full recovery.

Disclaimer: I requested, and received, CSD’s full permission to share his story on my blog. This is one of those rare times where I write about a coworker on my blog – mainly because this story is far bigger than the restrictive label “coworker”.

(*) CSD would like it to be known that he was high off morphine when he wrote that. While he stands by the content, he wishes to clarify that his normal writing style is mildly less grandiose.

(**) CSD also would like to point out that he played an 18-hole round of golf after getting the phone call that he’d been matched to a liver, and was to show up to the hospital the next morning for the transplant operation. I am definitely not capable of that attitude. 


That time I stopped being a cripple

Yesterday, I did box jumps. Lateral hops. Mobility drills with the ladder (à la football drills). NBD, right? That’s how boxers train. 

In Grade 5, I dislocated my knee doing a glissade (aka the simplest ballet move EVER). Typically an inconvenient but manageable injury, this freak accident was the beginning of a 5 year nightmare of hospitals, multiple weekly physio appointments, chronic inflammation, shattered cartilage, old-lady advanced osteoarthritis in one knee. During those years, between 10 and 15 years of age, I underwent 6 surgeries requiring general anesthetics; the shock of these drugs on my body, already undergoing the huge hormonal changes of puberty, resulted in permanent hair-loss. To this day, I am self-conscious about my noticeably thin hair. I spent more time in casts, requiring canes, crutches or wheelchairs than I did able to walk without assistance. I missed half of my Grade 9 school-year, and was home schooled by my mother, as I recovered from the first reconstructive surgery to my left knee.

My doctor was an preeminent expert in his field. He was also a dick. Infamous for his terrible bedside manner, I never had an appointment with him without crying tears of shame and humiliation. He treated my body like a piece of meat, would speak about me as though I wasn’t in the room. He deplored my lack of dedication to my rehab; when my mother pointed out that it was only reasonable that a teenager might have counter-will when faced with this bleak existence, he lectured her about being a good parent. Little did he know of the daily wars that raged at home as I tried to avoid the repetitive, painful, boring physio exercises, while my mom nagged, bullied, pleaded, bribed me into haphazard compliance. Rationally, I understood the link between the daily hour of physio and eventual health and mobility, but emotionally, it felt like my entire being had been reduced to being a cripple. I rebelled.

Finally, in Grade 10, the doctor deemed that I had reached the end of my rehab, and no further surgeries were required. His final prognosis: my osteoarthritis would degenerate until I required an artifical knee by the age of 30, and if I was very good, maintained a healthy weight (thinner than I was then – his words), avoided all weight-bearing activity other than light walking, and indulged in gentle swimming to keep the joint mobile, I might be able to delay the surgery by a few years. He reminded me that an artifical knee typically only lasts 5 years, and does not allow for a very pleasant existence. He wished me good luck.

My mother wanted the best for me. Being an invalid herself, with restricted mobility, she was distraught at my fate as a life-long cripple. She made it her business to remind me to never run, only walk, never jump, and always, forever, “be careful of your knees”.

When I started dating my ex, at the age of 20, I couldn’t go down stairs without limping. I couldn’t sit without falling – I didn’t have the muscle strength to control the motion. My knee would lock. The winters sucked: my arthritis was very painful, and I was petrified about wiping out on the icy Canadian side-walks and injuring myself again. My ex didn’t understand my attitude: the doctor wasn’t God. He didn’t have a crystal ball that determined my destiny. My weak muscles and limp weren’t set in stone. A former football player and weight-lifter, my ex set out to convert me to the joys of weight-lifting. Through his tutelage, I gradually mastered body-weight squats and lunges. My limp almost disappeared. I owe him for that.

When I started kickboxing, I couldn’t jump on one leg: I couldn’t connect my brain to my muscles. I was 25 years old. Under Voilàaaa’s mostly patient coaching, I worked on my mobility until I could hop slightly on either leg. Victory! I still was petrified of injury, and really, I was an idiot to take up a sport that requires so many snappy twists and slides. However, kickboxing allowed me to reject my decades-long identity of a cripple. I was lucky to practice that sport for as long as I did. After 4 years, when I eventually blew out my knee, I was convinced I’d just proven Dr. Dick right and had just sentenced myself to a permanently crippled lifestyle.

Coach has read, and continues to seek out, every article and book available about training, mobility, injury rehab, from all schools of thought. According to him, optimal performance is always possible, with the right information, tools, dedication and hard work. Sure, every body has its limits, and some injuries are harder to recover from than others, but it is ALWAYS possible to improve one’s quality of life through the proper training, and diet. Injuries don’t define an athlete – they are part of an athlete’s life, and require intelligent management.

For the past 3 years, under Coach’s watch, I’ve strength trained and conditioned myself to the point that I can jump 24in high, repetitively and easily. My body feels strong. Alive. I can trust that my legs will support me. I identify myself as an athlete. I’m 31, and my knee works just fine thankyouverymuch. Sure, it creaks and aches, and sure, one day it might wear out, but right now I can jump. For the first time in almost 20 years.

It feels like flying.