When life gives you Lyme

When life gives you Lyme

'Be vulnerable. Listen to your body. Take time to just breathe. Find your people, and ask them for help.'

By Arianne Jones for CBC Sports
July 3, 2019

I was the underdog who competed at the Olympics.

I won a World Cup medal. I broke my back. I came back and won gold. Now I have Lyme. If my life was an amusement park ride, it would be the most epic rollercoaster.

Let me share a pivotal moment from February 2016. I am standing in the leaders box with my relay teammates. We have won the Luge World Cup. Gold. This is my first-ever gold medal. You train your whole life, every day, to be your best, and that day is today. You know this feeling is fleeting. Next week, someone else will be the best, but today is yours. Now, I want to freeze this moment and rewind.

Arianne Jones suffered a broken back in 2015, and underwent months of rehab. (Arianne Jones/Instagram) Arianne Jones suffered a broken back in 2015, and underwent months of rehab. (Arianne Jones/Instagram)

Eight months prior I was sitting alone in a sterile aluminum tub, ice cubes floating in the frigid water. The walls echoed my sobs and gasps of air. I had just finished a training session, and something had gone horribly wrong, I knew it in my gut.I was in so much pain I could barely see straight. I could barely walk.

Three days later, I learn that I have broken my back. After my diagnosis, neurosurgeons said, “We have no idea if I you will ever be able to compete again. For 12 weeks you can only sit, stand and move at the absolute minimum. You have to spend the majority of your time lying down. Lying down and physio is your life for now. We will meet again and discuss.” This was my lowest low, the darkest reality I’ve ever experienced. I walked into the gym July 18, 2015 the strongest version of myself; I was an Olympian, I had won medals the prior season, I could lift more than my body weight in every exercise. Summit a mountain? Sure. Ride 80s kilometres for a charity? Let’s do it. Learn to surf? Catch medicine balls while balancing on a slack line? Handsprings? Sounds fun!  Now, in the blink of an eye I had to relearn every movement. I could no longer balance on two feet with my eyes closed. The next eight months of rehab were the definition of humbling. To come back from that and win my first world cup gold was life changing. I had risen from the ashes. 

Back to our podium moment, I sang “O Canada” with my whole heart. I had no idea at the time, this would be my very last race.


Olympic focus cut short

After the gold medal race, I focused on the 2018 Olympics. I began training with all the confidence in the world. I was one of the fastest starters in the sport. I was strong again. Twelve down weeks had allowed me a pivotal insight. I learned to meditate, I understood the magnitude of the mind-body connection and I got a feel for what was important in life. My mental game was stronger than ever before.

One day I suddenly noticed that I was overcome with fatigue. I know what it’s like to be tired, this feeling was different. Sleep didn’t fix it, naps didn’t help, no amount of rest gave respite. I started to fall asleep on the gym floor, amid crashing weights, blaring beats and motivational screams. My medical team recommended a week off to rest. I slept 18 hours a day for a whole week and came back just as exhausted. I’d never felt this way before and it was starting to scare me.

It got worse. The ‘episodes’ began once a week. It felt like I was getting the worst flu. I couldn’t breathe properly. It was like being at high altitude, unable to get a full breath. Then the pain began; in my bones, in my nerves and in my muscles. It was as if my cells were screaming out in pain. It crept into my spine and spread around my entire body. I was suddenly sensitive to light and sound. My brain felt so vulnerable, the world took on a constant and slight dizziness. For me to understand someone speaking, I needed to focus all of my energy on their face. My resting heart rate doubled to 80-120bpm from my normal 55bpm. I got neuropathies down my arms.  My nerves were on fire in zinging bursts. Walking 15 steps from my couch to my bed seemed impossible. The exhaustion was unforgettable.

Once an ‘episode’ has subsided, I am left with a crippling fatigue, constant pain and impenetrable brain fog. My brain stops working; this may be the most maddening symptom. It is as if someone has turned the lights off in my brain. I am easily confused. My short term memory is shot, any conversation I have in this state is gone, poof, forgotten. I cannot write even a single-sentence email. To know that you are intelligent, brave and thoughtful, and yet reduced to this state is utterly devastating.


'Something was very, very wrong'

I was getting worse every week; I could barely do groceries. One day during this time my fiancé came home to find me face down in our front hall surrounded by bags of food. I had just finished going grocery shopping and I was so overwhelmed that I laid down on the floor and could not get up. He knelt down next to me with all the love in the world and asked me how long I’d been there for; it had been three hours. I wasn’t sleeping, someone had just turned my power off. I clearly could not train anymore. I couldn’t even get out of bed. How on earth had I gone from being one of the fittest in the world to this? In the blink of an eye I lost the ability to work out, move or explore the world.

I told my coaches that I was scared that something was very, very wrong. One told me harshly that this made no sense, and that I should go and talk to a sports psych. He told me I was crazy. Others said, “Well, some athletes just can’t cut it.” I’ve never felt so alone. I’ve never felt so betrayed and let down. Five months prior I had won a gold medal, and now you think I can’t cut it anymore? I compete on your national team for five years, five world championships, and the Olympics…and now you say I can’t cut it? I have never felt so deeply hurt. Cruelly, though, because I was so broken, I was too ill to fight back.

Jones was diagnosed with Lyme disease three months ago, but has learned plenty over the last few gruelling years. (Arianne Jones/Instgram) Jones was diagnosed with Lyme disease three months ago, but has learned plenty over the last few gruelling years. (Arianne Jones/Instgram)

It took 1035 days for me to understand why my body rebelled against me. Three months ago I learned I have Lyme. It was three years of hell to arrive here and receive this diagnosis. I never had the infamous bullseye rash. I never had a noticeable tick bite. Chronic Lyme is controversial, but I live it every day.

There is no easy path forward here. No magic drug to make me better. It ended my sport career. It made people think I was crazy while I was in so much pain. Every day at some point, I feel intense loneliness, fear, sadness and panic.

This journey has given me deep insight into mental health. I was showered with sympathetic hugs and words of support when I had a brace on my wrist one season because people could see it. As with mental health, no one can see this illness. Lyme can be invisible. It should be said that I am grateful every day for those members of my medical team who stood valiantly by my side and affirmed I was not crazy.

I certainly don’t have it all figured out, but I have gained some wisdom on my journey. To anyone struggling with mental health, chronic disease, or whatever heavy burden:

Be vulnerable. Vulnerability is not weakness. I have learned that it takes courage but vulnerability helps build connections with others. Self-care is of the utmost importance. There is no weakness in naps. A little humor goes a long way! Get quiet. Listen to your body. It holds valuable wisdom which you cannot hear when you are swept up in society's glorified “busy”. Take time to just breathe. Speak kindly to yourself. Practice self-compassion. Find your people, and ask them for help. I would not be here without my people.

If you are in the darkness right now, you can do this. We can do hard things.

I have returned to the same dark place I lived in when I broke my back. This time I come equipped with a suitcase of knowledge gained through difficult experience. Once again, I will slowly begin to rise from the ashes.

(Top and bottom large photos submitted by Arianne Jones; Middle large photo by Alexander Hassenstein/Getty Images)

The Arianne Jones edition

Q: The best book you've ever read? 
A: The Obstacle is the Way by Ryan Holiday. The Gifts of Imperfection by Brene Brown. The Alchemist by Paulo Coelho.

Q: Must-listen podcast? 
A: The Rich Roll Podcast, How I Built This, and Ruthie Lindsay's Unspoken

Q: Best advice you ever received? 
A: The poem ‘Attitude’ by Charles Swindoll. My dad had it printed on our wall at home, and even gave it to me in a laminated card for my wallet.

Q: What word or phrase do you over use? 
A: Epic!

Q: What is a skill you wish you had? 
A: To be able to speak every language.

Q: What's something no one would guess about you? 
A: I adore elephants and foxes.

Q: What scares you? 
A: Spiders and failure.

Q: If you could have the ultimate influential dinner party, who are the 6 people you'd invite?
A: Brene Brown, Oprah, Emma Watson, Michelle Obama, Marie Forleo, and a videographer to remember it forever!

Q: What makes you cry, every time? 
A: P&G 'Thank you Mom' commercials during the Olympics.

Q: What's the next goal you want to accomplish?
A: Launching an online nutrition course and speaking career to inspire others to live their best life! Oh and learn how to make nut cheese.

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