What would it mean to you to be surrounded by people who understand you?
Multiple sclerosis in children and teens is not as common as it is in adults, which leaves many young people without anyone in their friend network who can relate to their experience with chronic illness. MS Summer Camp is where young people can meet others their own age who are dealing with the learning curve that is living with MS. It’s a place where their symptoms are understood and don’t set them apart. It’s an environment where campers can relax and enjoy all the activities summer camp has to offer without having to explain or defend themselves to anyone.
“I can’t go to the library without having to explain to five people what my life is about. They don’t sound well meaning, either; they tell me I’m ‘too young’ or ‘too pretty’ to be in a wheelchair, and it feels accusatory more than it does caring. I end up spending half my time explaining myself and my situation to people every time I leave the house. That’s not something most people have to deal with,” Anna says.
For Anna’s mother Rebecca, camp means a week of not worrying about her daughter’s safety or well-being. “It’s great knowing she’s at a place where she doesn’t have to explain herself. She can just be there and experience it and have fun. Anna is a counsellor at another camp that is working hard to become more accessible, but we worry about how she’ll get around and how fatigued she’ll become navigating a space that wasn’t designed for her. We don’t have those concerns with her at Merrywood, [where MS Summer Camp takes place]. That place is set up for her, and she’s surrounded by people who get it.”
Over the past few years, the importance of strong communities for young people living with MS has become increasingly obvious. In a conversation between MS Walk ambassadors Kayla and Lizelle, they talk about how much it meant to them when they were first diagnosed to be able to find an online community of people their own age going through similar experiences. Kayla was driven to create an online platform devoted to raising awareness about MS called Keep S’Myelin and runs a weekly conversation called #ChatMS with her friend Randy every Monday at 7pm Eastern.
Billy Talent drummer and MS advocate Aaron Solowoniuk runs F.U.MS, which is “trying to take that anger that comes with being young and being told you have MS and channel it into something hopeful.”
Our federal government recently launched a Youth Council to involve young Canadians in decisions about our country’s future. It would be wonderful to see someone living with MS on the council who could represent the needs of young Canadians living with disabilities or an episodic illness. You can apply here until August 12 if you’re interested.
The reality is that growing up and trying to fit in is difficult for everyone, but when most of your peers can’t understand your reality, it can be that much more challenging. Anna puts it like this:
Rebecca adds that, “Anna has to deal with lots of challenges during the year that are both emotionally and physically exhausting, and by the end of the school year she’s worn out by all of those challenges. But when she goes to camp and she comes back, she seems to have been revived. It changes her outlook, and she feels like she can meet the challenges of the year ahead because she’s absorbed all of these positive interactions with people who get her. She doesn’t have to defend herself constantly. People at camp understand what it costs her to get up and go about her daily life. They get her.”
So how does MS affect your daily life? In what ways are you asked to defend or explain yourself to people you meet every single day? And what would it mean to you to have a week off from all of that?
We’ll be live-covering MS Summer Camp on Sunday, August 14 on Snapchat, and it’s going to be great! Add us using our Snapcode to follow along and ask the campers questions!
Thank you so much to the Slaight Family Foundation, who fund MS Summer Camp so that all campers can attend at no cost to them or their families!
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