Getting Comfortable with being Uncomfortable
A few years ago, upon hearing a recap of the various mountains that my husband and I had hiked while on vacation, my good friend Jason told me that he would need a vacation to recover from one of our vacations. We had a good laugh over this. Jason would choose sipping cocktails on a beach over mountain hiking at least 99 times out of 100. Meanwhile, I get stir crazy “relaxing” on a beach.
Our family often chooses backcountry camping as our preferred vacation activity. We load up our canoe and paddle and portage our way into areas far from cell phone reception. Even when we’re not backcountry camping, we are often out hiking in areas with spotty cell phone coverage. We’ve summited Mount Washington (located in New Hampshire’s White Mountains and lovingly known as the world’s deadliest small mountain), Mount Mansfield (the highest peak in Vermont), Ben Nevis (the highest peak in the United Kingdom), and Old Rag Mountain (my personal favourite, and a fun little rock scramble located in Virginia’s Shenandoah National Park), just to name a few. Challenging myself physically while taking in pristine nature is my idea of a good time. Upon being diagnosed with MS, I instantly worried that I wouldn’t be able to go backcountry camping again.
Having Relapsing Remitting MS means that I could have an attack at any moment that may render me disabled, either temporarily or permanently. I went blind in one eye very suddenly over the course of about 24 hours, and I could lose my ability to walk just as suddenly. This is particularly worrisome when you are far from civilization and relying on your own strength to be able to make the return trip.
Having MS makes me uncomfortable because it makes life unpredictable. Now, many people would say that camping makes them uncomfortable. While it is one of my favourite things to do in life, I understand where those people who would critique it are coming from. A backcountry canoe trip is, admittedly, a lot of hard work. What makes backcountry camping comfortable and fun for me is that I have amassed a great kit over the years, I have the know-how to make for an enjoyable camping experience, and I have a truly great partner in Josh. However, the threat of an MS attack while completely off the grid has left me feeling uncomfortable in what was otherwise a comfortable and enjoyable environment for me. Having the sword of Damocles constantly over your head isn’t fun at the best of times.
Portaging… what’s not to love?
This bothers me all the more because I want to raise our son to be an avid camper. We had him backcountry camping when he was just 8-months old, much to the surprise of other campers who were caught off guard by the wee baby in our canoe. At the age of 3, he’s already a decent forager, having helped us with collecting fiddleheads, puffball mushrooms, wild blueberries, and wild black raspberries. I hate the idea of not being able to take our son to some of our favourite campsites that require a few days of paddling to reach (most notably the coveted “Anchor Island” site in Algonquin’s Burntroot Lake).
For my 37th birthday, my parents gifted me a Garmin inReach Explorer+. This top-of-the-line satellite communication device is a great idea for any backcountry camper, but it is even more important for me to have one now. It gives me comfort to know that Josh wouldn’t have to abandon me in the backwoods to go and seek help if something did happen that prevented me from paddling back. The Garmin inReach allows the subscriber to send both two-way text message communications, and an SOS signal for GEOS International Emergency Response. This piece of kit makes me feel much more comfortable with heading back into the backwoods post-diagnosis. This gift is truly meaningful to me because it gives me a piece of myself back that I feared I had lost.
Being on an aggressive Disease Modifying Therapy has also helped with mitigating my fear of being hit with an attack at an inconvenient moment. Kesimpta has kept me free from attacks and free from new lesions since September 2021 (the superstitions that I have internalized courtesy of my maternal grandmother have me knocking on wood as I type this). As more and more days go by without new disease activity, my confidence rises.
I am also inspired by other spoonies who aren’t letting MS hold them back. I read an article about a woman with MS setting out for an Appalachian Trail thru-hike with her spouse. I looked up their trail journal and learned that they didn’t make it, but Mule and Inchworm conquered the Georgia portion of the trail and over 100 miles of mountainous terrain. For those not familiar with thru-hiking, it is common that thru-hikers adopt trail names. I doubt that they will ever read this, but if they do I hope that they know that the fact that they would dare take on such a challenge while battling MS is an inspiration to me. I follow Matt Knaggs on Instagram (@runningwithms_official) and I am a member of his Facebook community, Running with MS. After he was diagnosed with MS, he started running marathons. He recently completed the Dopey Challenge at Disney World (for those not familiar, this involves running 48.6 miles in a single weekend), and he’s currently training for his first ultra-marathon. I also follow the Idiots Go Running podcast, where Colin Goodman and his brother document their efforts to complete a long run every month of 2023. Colin, who has MS, is running an ultra-marathon each month this year. What a beast! These two taking on such enormous challenges motivates me to push myself and take on challenges that push me out of my comfort zone.
Last August long weekend, we took on our most significant canoe trip since I was diagnosed. We launched from the Kingscote Lake Access Point in Algonquin and camped on Branch Lake. This involved a 1300-meter portage and a 660-meter portage. We also made a day trip down to High Falls, which involved several more portages and a ton of beaver dam pullovers. This trip took us well off-the-grid. Carrying my new Garmin inReach brought me a level of comfort in pursuing this activity that I love. Also, I must give a shout out to my, at the time 2-year-old, son who navigated portages that would be a struggle for most grown adults. We have four backcountry camping trips planned so far for 2023, starting with the unofficial kickoff to the camping season in Ontario, the Victoria Day long weekend (what we call May 2-4). It’s officially time to re-activate my Garmin subscription for the season.
So what does getting comfortable with being uncomfortable mean to me? It means that fear and anxiety are natural responses to living with MS, but my life won’t be made better by letting this fear and anxiety stop me from doing the things that I love most. It means finding ways to adapt. My risk profile has changed, so my safety profile needs to change too. There may be a time in the future where it means that I will have to adjust my expectations altogether, but I haven’t reached that point yet. I am intent to not let MS deter me from pursuing my passions.
In my happy place. My Swift Keewaydin canoe sits on the banks of Hogan Lake in Algonquin at sunset.
