Hut life, patients included

photo (13)

We made our way along a snowy trail in the woods of New Hampshire, a small train of 6 backpack-toting, sled-pulling women (and one man). The area was still recovering from an ice storm, so beneath the inch or so of snow was a thin layer of glare ice, which we navigated and slid along until we reached the ’66 Dartmouth cabin. The log cabin was more like a lodge; what I imagine an old logging camp in Northern Michigan (from where I hail) would have been like. It had a giant main room with a wood stove and fireplace; multiple sleeping lofts piled with those humorous vinyl-coated camp mattresses; gas lanterns and moose paddles hanging throughout. It was rustic and charming.
My companions were a group of mostly strangers, members of the Outdoor Mindset community in the Hanover, NH area. Outdoor Mindset’s goal is to help patients with neurological conditions spend time in the outdoors, doing activities they love. My old friend Jeanie had invited me to the outing; we’d been co-captains of our college ski team back in the 90’s, and Jeanie’s now in med school at Dartmouth. Her husband, Jake, is a co-founder of Outdoor Mindset.

Most of the people on the outing were patients with various neurological conditions like MS and epilepsy, and one woman had multiple autoimmune issues (like I do, but hers were different from mine.) I don’t think they knew I was a patient at first, as I was kind of a random and unexpected addition to the trip, so my pointed questions about their symptoms and diseases might have been a little off-putting at first. But as we walked through the woods, first on our way to the cabin and then from the cabin to the top of a small mountain lookout nearby, we spent a lot of time talking and getting to know each other. I found that many of us had symptoms in common – even if our diseases were different. A lot of us talked about neuropathy – tingling and numbness in our extremities. The conversation swung seamlessly between health talk and outdoors talk; from the cost of healthcare to a hiking trip at Kilimanjaro; from treatment options to a climbing trip or a trek through the Indian Himalayas.

Now these are my kind of people! Maybe just a ‘little tiny bit’ noncompliant patients who don’t always accept the limitations of their diseases. Who push themselves to spend time outdoors and find ways to mitigate the impact their symptoms might have on their abilities. I’ve had the autoimmune disease Myasthenia Gravis for over 20 years, and I’ve recently been diagnosed with Sjogren’s Syndrome as well – both neurological autoimmune diseases. But I’ve always been able to maintain an outdoor lifestyle; I was a ski bum in Montana for a few years, and I’ve lived/hiked/skied in VT for about 8 years. I understand what it’s like to push through symptoms to get outdoors and keep up with the activities that make you feel alive.

***

Later in the evening, a friend of Jeanie and Jake’s came to the cabin and taught an intro class on Pilates. She was witty and a great teacher, and we worked on our ‘six packs.’ Jeanie and the dinner crew made a great meal, and we spent time chatting into the night over a shared bottle of wine and some cream cheese brownies. I shared my personal project that aims to help patients tell better stories about their healthcare when they’re visiting with their doctors, and I got some good feedback and input from the group.

Overall, I was so pleased to have the chance to refresh my mind and body in the woods with some like-minded patients. I’m excited to have now joined OM officially, and I’m hoping to make it to more events and get other patients involved.

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