Independence: learning to enjoy the ride

Karen, diagnosed with RRMS in 2004

World MS Day is a month from today. The theme this year is independence, so that got me thinking about what the word means to me.

I was named Athlete of the Year in high school. Sports and staying active have always been important to me. My family lived on an acreage where I had horses, participated in Pony Club and competed in horse trials which involved galloping cross country and jumping natural obstacles.  I stayed involved with horses after University where my weekends were spent trail riding with my horse, Tessa.  I also continued to play recreational soccer and later took up mountain biking. After my diagnosis, I became depressed for a time because I couldn’t be as active or as competitive as I once could. I had to give up recreational soccer because the vision loss in my left eye made it hard to follow plays, and I ended up colliding with other players. My plans for competitive cross-country mountain bike racing were also sidelined. Then I had to give up riding, and sell Tessa.

But determination is a funny thing, and I got back in the literal and proverbial saddle, one step at a time.

I had always used a computer on my bike to track my speed and distance, but I took that off and learned to just enjoy riding – no more personal bests, no more training – just riding. I travelled to Fernie, BC for a women’s mountain bike skills camp. It was my first time biking in the actual mountains and I even learned to jump my bike! I can’t always bike as long or as hard as I’d like to, and I have to bring extra water on hotter days, but I got my confidence back.

Then an opportunity came along to adopt a race horse named Slew O’Rhythm (Slew for short) who was being retired. I wasn’t looking to get back into riding, but the more sports I tried, the more I realized I could do. I decided to adopt him and if it didn’t work out I could always re-home him with one of my  friends. I was still struggling with issues in my left leg and hand, so I went to a para-equestrian clinic where I learned a lot about riding with a disability thanks to specialized instructors and physiotherapists. I saw how other riders had adapted their riding technique, and they inspired me and made me realize I could ride again.

I started using an elastic band to keep my foot in the stirrup, which allowed me to focus on riding instead of worrying about losing my stirrup and falling off. Once I had myself sorted out, I started retraining Slew in dressage and we entered our first dressage shows at training level.  At that time, I was the only classified para-rider in Manitoba and there were no para-specific competitions available locally.  I was able to compete in regular classes against able-bodied riders using special dispensation for my adaptive equipment and rule exemption for the formal military style salute.  Because of the difficulty I have in my left hand it made it hard to take the reins in one hand and perform the salute without dropping the reins which was risky.  I was allowed to perform the salute at the beginning and end of our dressage tests by keeping both hands on the reins and just nodding my head.  It was great to be able to compete in such an inclusive way.  Getting back into horses was the best thing for me, I joke that Slew is my physical therapist and counsellor.  I’m not sure why or how, but I can go on long trail rides now without the elastic band, even though I still have abnormal deep tendon reflexes and numbness in my left leg. I still have to be careful when I dismount because sometimes I don’t realize my leg went numb while I was riding. Slew is a senior horse now, so our competition days are over and we’re just enjoying trail riding together.

I have recently taken up kayaking too, which I love. Being close to the water helps me stay cool on hot days, and my paddling partner brings a tow rope along in case I run out of steam. That hasn’t happened yet, but I do tend to need a nap on the car ride home.

Reintegrating sports into my life after my diagnosis has given me my “mojo” back, and regaining that confidence is one of the things I’m proudest of in my life. I’d still like to master a kayak roll so that I can try some white water kayaking. I’d also like to ride in as many different MS Bike tours across the country as I can, starting with completing the full two days of the MS Biking to the Viking. We’ve only been able to do the first half these past two years because of weather.

When I was first diagnosed with MS I was devastated. I thought my life as I knew it was over. Then denial set in, and I thought that by keeping my MS a secret I would be able to keep up the pace of my life before – but I constantly felt like it was kicking my butt. I finally had to accept that I needed to make accommodations.  That newfound acceptance led me to speak more openly about my disease, and now I’ve even done some public speaking! I made a speech at the MS Biking to the Viking dinner last year and got a standing ovation – it’s one of my fondest memories.

MS has definitely put a strain on my life and my relationships, but I no longer feel like my life is over. My house is always messy, but that’s because I choose to spend my energy on the things I love like riding and kayaking instead. I finally asked my company to make the necessary accommodations so I could go back to work full time and find a work-life balance. Now, I want to give back to the MS community. I’ve given speeches at the 2014 MS Connect Conference, MS Bike Tour dinners,  and at my company’s United Way campaign kick-off, I participate as a Community Representative on the MS Society research grant committee, and I volunteer for my company’s diversity committee, where we review company policies on employment equity.

Hearing about new MS research – like the announcement of a $4.2 million grant for the MESCAMS trial and our partnership with the International Progressive MS Alliance – makes me feel hopeful for the future of MS. But when I stop and think about what has made me able to live a balanced and stable life with my MS – what independence means to me – it’s more than the medication I take. It’s my entire person: my diet, my mental and emotional health, my exercise routine. It’s about creating my own coping strategies and figuring out what makes me feel like my best self. It’s about trying and failing and trying again to learn what I can and can’t do. It’s researching new ways to do the things I loved before I had MS and feeling empowered to continue doing those things.

Independence isn’t about doing it alone; in fact, it’s quite the opposite. Independence is about opening up and accepting the help and accommodations you need so that you can fulfill your dreams in new and unique ways.

Follow Karen on Twitter @cl3me