Campfire Stories: Childhood Arthritis

 

When I tell people that I was two years old when my arthritis was originally diagnosed, the reaction is usually shock. In this era of everything-we-want-to-know-at-our-fingertips, I am surprised by how many people still don’t realize that arthritis is a disease that can afflict all ages. In fact, according to the Arthritis Society Website  “it is estimated that as many as 24,000 Canadian children aged 18 and under live with a form of arthritis.”

Yesterday I attended a fundraising luncheon hosted by the Manitoba chapter of the Arthritis Society. The goal of the luncheon was to raise funds for Childhood Arthritis Camp—an initiative that has been around in other parts of the country for a while and, thanks to the generosity of many donors, will be happening in this region for the first time this July.

One of the features of the luncheon was the opportunity to meet a group of young ambassadors—kids living with Childhood Arthritis—who openly and articulately share their stories to offer a glimpse into the impact of this disease on their lives. These are kids who are dealing with daily pain, mobility challenges, physiotherapy, fatigue, and some pretty heavy-duty drugs. I know what they are living, because I’ve lived it. But they are also kids who play hockey and basketball, who take dance lessons and gym class, and who are really excited about going to camp with other kids who comprehend the unique challenges they face.

Fifty years ago, I would have given anything to know another child with arthritis. There was no Arthritis Camp in the ‘60s and ‘70s when I was navigating school with an invisible disability that no one seemed to understand.

My primary school music teacher clearly did not understand how painful it was for me to sit cross-legged on the cold, tile floor for the duration of music period.

My elementary school teachers clearly did not understand how the practice of inviting students to “pick teams” for a gym activity can quickly become a form of teacher-sanctioned bullying.

My junior high gym teacher clearly did not understand that there were better ways to accommodate my limitations than relegating me to the bench.

To this day, I feel a residual discomfort in school gymnasiums, and I avoid any sort of team-based physical activity because I carry the deeply ingrained assumption that I will be a liability.

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A different camp, but with the same powerful potential for community. My own kid is in this huddle, not wanting to tear herself away.

I’m fortunate to have had five decades of good medical care, and no shortage of good friends. And I did go to camp. But I have never had a community in which I could look around and see my experience of living with childhood arthritis reflected back in the experiences of my peers. I envy these kids that, even more than I envy them the huge leaps in medical research and awareness that have occurred in the past 50+ years.

My parents didn’t have the benefit of that community either. Which is why I made a point of introducing myself to the mom of one young ambassador. Why I took the time to tell her that, just like her son, I was a toddler when I was diagnosed. And that here I was now— A successful professional. A parent. A happy and healthy adult with my arthritis well-managed and having minimal impact on my day-to-day existence.

One thing I’ve learned from living a story that others didn’t always understand is the importance of telling that story. And telling it again. And again.

Telling it, so the people who have never lived that story can grow to understand. And telling it so the ones who are living it will know that they are not alone.

 

Do you have a story that someone needs to hear?

 

For more information about Childhood Arthritis Camp, or to donate, click here.

 

 

 

Conjuring Canoes

It warmed up! It’s a balmy -14° C this evening (if you ignore the -25° C wind chill, and the drifting snow, and the storm warning, and the fact that for parts of the drive home I couldn’t make out the edges of the road.) It’s downright miserable out there. I’m glad to be home and not needing to go anywhere tonight, and I’m crossing my fingers in the hope that I will be able to get out of the parking lot to get to where I need to go in the morning.

This canoe passed by on one of my river walks back in September
This canoe passed by on one of my river walks back in September

And I’m thinking about canoes.

What, you are wondering, do canoes have to do with a blizzard?

Absolutely nothing, which is precisely the point. If I was sitting in a canoe right now it would mean that there was not a winter storm slowly imprisoning my car in its parking spot.

A couple of things have conspired to bring canoes to mind this evening.

I was sorting though some files of my long-ago writing, and I came across a piece I wrote when I was a teenager about canoeing in the rain. It’s not what you would call brilliant writing. OK I’ll be honest, it’s pretty terrible. I was going to quote some of it here, but thought better of it. Most of it is cringeworthy in an over-descriptive, trying-to-be-deep way. But it reminded me how much I love paddling in silence and observing things that you never see when you go crashing through the natural world in a motorized vehicle.

It also reminded me that my youngest daughter comes by her love of canoeing honestly.

Which is the other reason I’m thinking about canoes on this blizzardy January evening. Because camp registration always opens on the first Monday of January at 9:00 am. Last year I went to register her for camp on  the Tuesday and she ended up on a waiting list for her preferred session. (Thankfully she did eventually get in.) So my job on Monday morning is to boogie down to the YMCA near my office, as close to 9:00 am as possible, application form in hand, so that she can spend July in the blissful freedom of paddling, portaging and pitching tents in the Northern Ontario wilderness.

I confess, I’m a big-time planner and scheduler. Before the snow is gone, I will have the whole summer mapped out. I am always baffled by people who can get halfway through July before committing to a vacation date. The way I see it, when you live in a place that treats you to -25° C wind chill and four-foot-high snow banks for several months of the year, you don’t leave the summer to chance.

Once in a while I think it would be nice to take a more spontaneous approach to holidays. At work today I heard a story today about someone who got a last-minute invitation to escape the cold by visiting a friend in Phoenix, so she paid a huge extra fee to get an “emergency” passport. Who even knew there was such a thing? On the other hand, a study by a group of Dutch researchers demonstrated that the biggest boost to happiness occurs during the time spent anticipating the vacation. So it’s possible my lack of spontaneity is actually making me happier than I would be if I was running about doing things on a whim!

Paradoxical as it may be, the truth is that there is a lot of summer recreation that my family is able to enjoy precisely because I have spent cold winter nights plotting and planning. It’s worth conjuring canoes on a cold winter night if it makes it possible to paddle them six months later.

The video linked to below was made over the summer of 2013 to celebrate the 50th anniversary of the canoeing program that my daughter loves. The video makes it clear why she loves it! (And if you happen to know my daughter, you might just catch a glimpse of her in the video!)

The Way of The Canoe from White Noise Productions on Vimeo.