The Story Behind RUN LINDSAY RUN (2012)

I crossed the starting line when I was ten years old. The funny thing about this race is that we didn’t really know that we were starting it until we were in it. And we certainly never signed up for it.

It was Spring Break in Grade Five – and it was bittersweet because, as much as I loved the chance to play and spend time with friends, I was one of those smart and social kids who really loved going to school.

Just a few days before school started again, I got sick – really sick – and I spent days in bed fighting off a case of pneumonia. And I didn’t go back to school on Monday. Instead, I woke up and discovered that my ten-year-old body had been transformed into a prison overnight. I was unable to move a single bone or muscle in my body without screaming and crying from pain. Instead of spending that next week in my desk, I spent it in a hospital bed.

That week was a nightmare. It became a sprint for the adults around me – a whirlwind of tests, specialists, and prayers – while I lay there and waited to find out if I would ever walk again. That week, I saw my dad cry for the very first time, and I heard the word that would alter the course of the rest of my life: ARTHRITIS.

I’m glad that I was only ten years old. Children have no concept of a marathon, of how much strength and determination it will take to reach the finish line. They just take off running.

And that’s exactly what I did: I took that diagnosis, and I ran. The anti-inflammatories starting working immediately. Miraculously. In less than 24 hours, I was taking my first steps all over again – first in the water, and then on land.

And then I ran. And the scenery was gorgeous. Once we got all my meds figured out, most of junior high was straight ahead with a gradual downward slope. Like most young teenagers, I found out who my true friends were, and I began to discover the things I was passionate about. When I entered high school, the course got a little bit trickier and navigating those hills started to make me tired. At the beginning of Grade 11, the meds I’d been relying on for years suddenly stopped working, and we tried a series of seven or eight new ones before finally discovering a combination that kept my symptoms largely under control. Every joint in my body was affected at one time or another. But I kept on moving. I learned to drive, I got my first job and my first boyfriend, I volunteered at summer camp programs, and I had thousands of adventures with my friends. I couldn’t play sports, but I made signs, painted my face, and cheered on my friends who played on our school’s teams. I auditioned for and was added to the cast of our spring play, but at Saturday rehearsals I could sometimes be found throwing up in the girls’ washroom backstage – a nasty side effect from the meds I injected into my body every Friday night. I learned what most seasoned marathon runners could have told me – that for every uphill, there’s a downhill.

At the end of high school, my classmates voted to make me their valedictorian and I received a scholarship to study English at the University of Winnipeg, where their resource department was ready to help me with any accommodations I needed. For the first time, I felt like I might win the race.

It was during university that the surgeries started – a series of four procedures, designed to keep my jaw joints mobile and as pain-free as possible despite the fact that the arthritis had decided to take up residence there. The cycle became predictable: surgery, recovery, then a period of six good months, then a gradual increase in pain and loss of mobility, then another surgery. I felt like, with every repeat surgery, I was slowing down and losing momentum. My legs were feeling heavy and I was starting to wonder why I was running at all.

That’s when I decided to run a different kind of race: a marathon for The Arthritis Society’s Joints in Motion program. Everyone thought I was capital letters CRAZY. But I knew deep in my heart that I could do it. For almost a year, I worked with friends and family to plan fundraisers and trained as much as I was able to. As much as it was about me and my journey, it was also incredibly empowering to climb outside of myself and do something to help other people who live with arthritis. It was exactly the right thing to do at exactly the right time in my life.

In January 2004, my mom travelled with me to Hamilton, Bermuda where I walked a full marathon in 8 hours and 27 minutes. Crossing that finish line was one of the hardest things I’ve ever done, but that epic journey – and those final steps across the finish line – changed my life. Even now, in my darkest moments, I close my eyes and can still hear my mom screaming from the halfway point, ‘That’s my girl! She’s going to do it!’

Participating in Joints in Motion – and achieving that intensely personal victory – was exactly what I needed to recapture my motivation to keep running the ‘real’ race.

And it’s a good thing I came home feeling inspired, because the eight weeks after the marathon were some of the hardest of my life – plodding straight uphill. My body was totally rebelling after the grueling task I’d demanded of it, and things were kind of crazy in my ‘real life’ too – a new job, the loss of some long-term friends, and a tough break-up.

But as the snow melted at the end of a long, cold Canadian winter, the path ahead seemed to level off. I was picking up speed, running faster than I ever had before… That spring, my medical team and I realized that my arthritis was in remission and I went off all my meds. And I was okay. I was more than okay – I began to see the finish line in the distance and my surgeon helped me plan my final sprint: one last jaw surgery, a radical one, that would make my jaw joints as good as new and set me up for life after the race.

It didn’t really cross my mind to be scared about the surgery, or the months of recovery that would follow. I was so excited to get to that finish line – the pain of the sprint didn’t matter.

My surgery date was September 1, 2004. It’s a date I’ll remember like other people remember the death of a loved one – because something inside of me died that day. The surgery was a complete success and everything went according to plan. But it was tough – and the recovery was even tougher. I fought through with everything I had, but everything I had wasn’t good enough this time. Days turned into weeks that turned into months, and I was still unable to work full-time, paralyzed by pain and an intense fatigue that absolutely overwhelmed me. I looked ahead, and the finish line was gone from my sight – instead, the road stretched ahead of me indefinitely. I was as surprised as anyone to feel my fighting spirit give in to the exhaustion. By Christmas, I found myself sitting down on the side of the road, unwilling to try another step.

My last ounce of energy was used to drag myself in to my rheumatologist’s office. At that appointment, he confirmed what I had suspected for weeks: that my arthritis was still mostly in remission, but the surgery had triggered the onset of fibromyalgia (a disease that’s a member of the arthritis family). At the same time, I received a secondary diagnosis of chronic fatigue.

It felt like a mean trick. I was within sight of the finish line, and then the race officials let me know that – instead of completing the course I’d been navigating for twelve long years – I’d be starting another marathon instead. Honestly, I sat there for a while. I wasn’t really sure I was up for another race. The first one had been hard – very hard – and I was so tired of running.

I needed some motivation. I thought back to the last time I felt truly inspired to run and motivated to WIN. And I knew in my heart that it was when I had completed my Joints in Motion project. It was that same place in my heart that told me I’d need to do it again. It was my only hope to keep myself moving forward.

In October 2005, I travelled to Lausanne, Switzerland with the Joints in Motion team. It was cold and rainy outside, and I had been limping before the race even started. I was there on my own, and I was about 10k into my half-marathon when I realized that I was going to be the last person to finish that day. The idea of finishing last was terrifying, and I was filled with visions of crossing that finish line with no one there but the marathon officials to witness what felt like an Olympic victory to me.

When I rounded the last corner and the giant red and white arch marking the finish line came into view, I knew I’d been wrong. I wasn’t there on my own. I was there as part of the Joints in Motion team. And I had no less than fifty people there at the finish line, screaming their hearts out for me – as if my slow, shaky limp to the finish line was a gold medal sprint. And in its own way, it was.

The official marathon finish line pictures are kind of hilarious, because I was sobbing uncontrollably. But they were happy tears. They were tears that meant I was ALIVE, and that this new disease had not captured all the best parts of my spirit. I was still in the race. And I was still winning.

From there, I pressed onward. I was still sick, but I wasn’t going to let it take anything away from me. I hunted down my dream job, and I grabbed it and poured myself into it. I explored some more of the world and I laughed and I crossed dozens of things off my list. I met a man who loved me and understood me and captured my heart, and Geoff volunteered to tie on his own pair of metaphorical sneakers when he married me in September 2007. On our honeymoon six weeks later, we travelled to Athens, Greece and he walked alongside me as we completed a 10K as my third Joints in Motion event.

Why only a 10K, when I had already proven that I was capable of more? Because it allowed me to finish early – early enough that we could spend some time at the finish line, cheering until the very last member of the Joints in Motion team received her medal, limping across the finish line.

Life stayed interesting after our honeymoon… Just a few short months after coming home and settling into our new house together, Geoff + I found out that we were unexpectedly expecting – on the very same day that my mom found out she had breast cancer. And that kicked off a very different kind of marathon for my family.

But it’s another story with a happy ending. Briony Evangeline was born on November 16, 2008 – in the midst of her grandma’s chemo and radiation and surgeries – and by the time she turned one, we had received news that my mom was cancer-free.

We chose the name Briony (BRY-uh-nee) simply because we loved it, discovering later that the name comes from a plant that has long been used to heal people. Her middle name – Evangeline – means good news. And that’s exactly what she was and is and will always be. I wasn’t sure that I would ever be a mommy. But I’m grateful every single day that my illness did not rob me of this experience.

Briony is the joy in our lives. In the blink of an eye, she has transformed from the prettiest baby girl I had ever laid eyes on to this magnificent creature who creates nonstop (giggly) chaos in our home and in our lives. She is magic, filling spaces we didn’t even know we had with so much joy and love it’s a wonder the world can contain us.

Of course, I am still sick, and being a mom with chronic illness is terrifying (on a good day). It’s full of the highest highs and the lowest lows – and it’s something I wouldn’t change for anything. I pray that growing up with a sick mommy is only a positive in Briony’s life when she sees it in the big picture.

She is four years old now, and I’ve adjusted my career path from being Communications Director at an advertising agency to being a freelance writer and communications strategist, working mostly from home – a better fit for both my family and my health, at least for right now. I love what I do. But I’m not willing to sacrifice all the other parts of my life to be able to do it. And this compromise allows me to have it all, just in a different way.

My fibromyalgia affects me on a daily basis, along with the chronic fatigue that likes to tag along. My arthritis peeked out of remission after Briony was born and has steadily made its return. In 2011, I went back on daily arthritis meds for the first time since my early 20s. Right now, I’m working hard to keep it all together and under control through a combination of diet, stress management, exercise, acupuncture, massage, and a combination of natural and synthetic medications. If that list sounds overwhelming, you’d be absolutely right. But it’s worth it to be able to be fully present in this beautiful life that’s been given to me.

And I keep moving forward…

It’s not a record-setting pace by any means, but I’m moving – sometimes faster, sometimes slower, but always forward. The race doesn’t have mile markers to let me know how much farther I have left, but that matters less and less. Because with every step, I become increasingly certain that – no matter how long it takes – when I cross the finish line, I’m crossing as a winner.


UPDATE (April 2012): In March 2012, I celebrated my 20 year ‘sickoversary’ – and yes, I mean CELEBRATED. I was surrounded by family + friends and we marked the occasion with a party… And an announcement that I would be tackling my fourth Joints in Motion project.

This will be my last Joints in Motion (as far as I know!), and we’ve decided to do things a little differently this time… I’ve registered for the Disneyworld Marathon in January 2014 – and I’m bringing my family along. Geoff is registered as a participant. Briony is going to come cheer her little heart out (and run a kids race!). And then we’ll celebrate together at Disneyworld. It’s kind of perfect, right? I’m thinking of this event as my victory lap, and I can’t imagine doing it any way that wouldn’t include them.

Most importantly, we are going to be funding all our own travel – flights, hotels, park tickets, everything minus the actual marathon event – to maximize the percentage of your donations that will be going to arthritis research.

The day-to-day of living with arthritis is sometimes ugly. But the big picture? I believe that is ALWAYS beautiful – and always worth fighting for, for myself and for the 4.6 million other Canadians who live with arthritis. Chronic illness has taken away so much in my life, but there is so much more that’s left to celebrate. And that’s exactly what I intend to do.


UPDATE (February 2014): We did it! Geoffrey, Briony, and I all crossed our respective finish lines at Disney World – with my parents cheering us on – and we enjoyed an amazing milestone vacation celebrating LIFE and FAMILY and all the wonderful things I have to celebrate in my life. I’m tearing up just writing about it now. It was all kinds of awesome. And it was exactly the fuel we needed to kick off our next adventure: I went back to work full-time doing marketing for a fashion company. Crazy? MAYBE. Fun? DEFINITELY. Challenging to do with chronic illness? YOU HAVE NO IDEA.

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