Wednesday, January 30, 2008

Run Lindsay Run

I've wanted to do this for a long time... But it felt so strange to think about writing a story without an ending. I think that this latest flare-up of symptoms has made me realize that an ending isn't guaranteed - and that it's the journey that counts anyway.

And so, on one of those incredibly low days when life didn't seem fair OR fun, I began to write this. It's still a work in progress. But this is for my mom - in honour of 'our' four year Joints in Motion anniversary this month. Geoff's my official running buddy now, but you've always been my trainer and my cheerleader. You waited for me at the finish line in Bermuda for a loooong time (and with a serious back injury), and in my darkest moments I can close my eyes and hear you screaming from the half-way point, 'That's my girl! She's going to do it!'


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 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 became a sprint for the adults around me - a whirlwind of tests, specialists, and prayers. 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 ran. And along the way, the scenery was gorgeous. Once we got all my meds figured out, most of junior high was straightforward 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: music, literature, language, and politics. When I entered my high school years, the course got a little tricky 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 7 or 8 new ones before we discovered a combination that kept my symptoms largely under control. 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 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 of 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 this 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 6 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. For almost a year, I worked with friends and family to plan fundraisers and trained as much as I was able to. 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 it changed my life. It 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 had not appreciated 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 Winnipeg 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 it's a date when something died inside of me. The surgery was tough and the recovery was 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 my indefinitely. I was as surprised as anyone to feel my fighting spirit give in to the exhaustion. By Christmas time, 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 in fact totally gone from my body, but that the surgery seemed to have triggered the onset of fibromyalgia (a disease that's a member of the arthritis family).

It felt like a mean trick. I was within sight of my 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 beginning 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 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. And 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. 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. It was cold and rainy outside, and I was limping before the race even started. 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. The official marathon finish line pictures are 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.

I wish I could show you all the footage of my victory in Lausanne, but the Global television team didn't air it. Apparently, my choice of words after struggling through a half-marathon - and fighting with the French-speaking officials for the last half of the race to let me finish - wasn't exactly family-friendly... :)

From there, I pressed onward. 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 he 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 the 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.

And I keep on 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.



At January 31, 2008 10:11 AM, Blogger gloria said...

That was beautifully written Lindsay. It should be a feature article on living with Arthritis in a big glossy magazine or coffee table book somewhere.

Now THERE is a pet project for you. Get everyone on your teams' story and publish a coffee table book. :)

At January 31, 2008 12:19 PM, Anonymous Marilyn said...

Do you understand that your readers will read this with tears as well as shout, "Onward!?"

At January 31, 2008 1:13 PM, Blogger ka said...

Gee - you should be a writer... Or something. :)

At January 31, 2008 7:57 PM, Blogger Sherri McLeod Photography said...

Bless you Linds, Bless you.

At February 01, 2008 10:35 AM, Blogger crystal said...

Reading this brought tears to my eyes. Very inspiring.

At February 01, 2008 8:50 PM, Blogger JoJo said...

Your blog has captivated me.
Run Lindsay Run. People you haven't met are cheeriing for you. I am one of them.

At February 10, 2008 11:51 AM, Blogger Black Out Photography said...

It's funny that I knew most of this, and yet I still cry.


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