Adventures With The Head Case Club
Ten percent of Americans live with an invisible disability. Some of us are beyond stubborn about it. As one of 525 members of the Outdoor Mindset group, I place myself in this subset. To join, you or your partner must have a head case – a neurological disorder. For Kyle, the Colorado-based founder of the organization, a hell of a headache led to getting diagnosed with an inoperable brain tumor. For my recruiter Becky, it began with sporadic foot drop and a feeling of being off-balance. Vice President Jake had his first epileptic seizure when he was 11. Local chapter leader Amy also has epilepsy – and is still prone to seizures if she forgets to take her medication, goes indoors and allows herself to relax. Group member Rosie has a dual diagnosis: she has the incurable and rare Charcot-Marie-Tooth disease – and a Chronic Inflammatory Demyelinating Polyneuropathy. When Rosie was first diagnosed, she couldn’t pull up her own zipper. While she has good and bad days, she has since climbed Mt. Kilimanjaro (elevation 19,341).
Rosie’s feats are not unusual for Outdoor Mindset members. In the five years since I joined, I’ve watched Jake complete marathon on and off-road bike trips. Amy and Jake’s wife Jeanie have done crazy long Nordic ski races. I’ve seen Becky emerge from Body Combat classes only to hit the weights or climb the rock wall at our gym. My efforts pale by comparison: I swim. I walk a minimum of a mile and a half daily. I sporadically take yoga classes. Last year, I completed a three-day 50-mile fundraising walk in Cape Cod. On the second day, I swapped a 10-mile return on a round-trip route for lunch in Provincetown and a walk on the beach. It was Donna, a fellow walker – not my feet – that prompted the break. She reminded me that “we are here to have fun, too.”
Ever heard that Lao Tzu quote that a “journey of a thousand miles begins with a single step?” The journey to membership in Outdoor Mindset can start at any age – as long as you or your partner have a diagnosis. Even if you’re not eligible now, you may be later. The Outdoor Mindset website shares the stats.
Each year in the United States:
Over 100,000 people are diagnosed with a primary or metastatic Brain Tumor
181,000 people are diagnosed with Epilepsy
10,400 people are diagnosed with Multiple Sclerosis (MS)
50,000 people are diagnosed with Parkinson’s disease
1.7 million people sustain a traumatic brain injury
As my colleague Larissa Hopkins says, “We are all temporarily abled.”
I became eligible for Outdoor Mindset membership in May 2013. Unbeknownst to me, I had been living with a progressive neurological condition. The first signs came when I lost peripheral vision in my left eye in 2007: Cars visible in my rear-view mirror did not show up on my side mirror as they passed. My vision returned three days after an Optometrist diagnosed it in a word – stress.
Six years later, I experienced bilateral feet tingling, cognitive fog, and numbness. Over three weeks, my symptoms intensified to the point that I could not feel if I had a shoe on my foot or not. After three MRIs and a spinal tap, the initial vision loss was deemed as optic neuritis – a frequent harbinger of Multiple Sclerosis (MS). The MS diagnosis was confirmed by MRI results showing old and new lesions in my brain and one on my spine. I was left with minor nerve damage, but the cog fog dissipated.
I was waiting in my Neurologist’s lobby when Becky recruited me for Outdoor Mindset. At the time, she was a warm acquaintance. I was three weeks out from the same diagnosis she’d been given a year before. At the Neurologist’s office, I received a brochure that included a subtitle that read “MS can stop people from walking,” Becky was having none of it. She made a date for me to join her at the next MS Support Group meeting – and then, the following winter – she convinced me to go for an overnight Outdoor Mindset trip at the Dartmouth College Class of 66 cabin.
We made the trip in January. The temperatures were in the teens. There was a fresh layer of snow on the ground with ice underneath. We parked .6 miles from the cabin and brought in all of our supplies. With the exception of the kitchen sink, there is no indoor plumbing at the cabin. An outhouse in the woods serves as the facility’s only official bathroom. We unpacked and then went out for a hike up Moose Mountain. Borrowing one of Jake’s MICROspikes, I lagged behind the group wearing rain boots with slick soles. Becky, Jake, Jeanie, Rosie and Jeanie’s friend Katie cheered me on as we opted for the more challenging path to the top. As we hiked, I got sporadically wobbly until we reached the summit (’2303 feet). I told the same joke I always do when my balance is off: “Have you heard about the woman with MS who walked into a bar, then into a table and a chair?”
Smores!! What else is there during a winter cabin trip!?
Rosie and I slept up in sleeping bags at the top of a loft. With a small flashlight, I felt my way down a ladder at 3 am, put on slippers and made my way to the outhouse. As I climbed back to my bed, I could feel tears form in the corners of my eyes. I was going to be okay.
Since that night, there have been many more Outdoor Mindset trips – from winter cross-country skiing and spring mud hikes to summer paddle boarding outings and fall corn mazes. I have overcome my fear of needles and now give myself bi-weekly shots. While MS is an unpredictable disease, I have been told I have the relapsing-remitting kind for now – and I’ve had no new surprises in MRI results. To date, I have been unusually lucky.
On our most recent camping trip in late April, I fell while crossing a log bridge and broke the ice over a stream. I drifted for about two feet. There was still snow on the ground. We laughed, and I soon changed into warmer clothes. Hypothermia risk averted. No incident management report required.
When you receive a diagnosis that there’s something wrong with your head, the news is often followed with precautions. Epilepsy seizures lead to driving restrictions. Traumatic brain injury survivors are told to avoid sunlight. The National Multiple Sclerosis Society urges a conservative approach, “Any person with MS who is initiating a new exercise program should also consult with a physician before starting. Periods of exercise should be carefully timed to avoid the hotter periods of the day and prevent excessive fatigue.”
My Outdoor Mindset friends and I fly in the face of this advice. Our brains may be suboptimal in places, but we keep moving. We take our medication as prescribed, but we don’t sit back. It is okay to be impatient and to push yourself. After all, the definition of patient is to be passive:
Patient [prescient]
noun
a person who is under medical care or treatment.
a person or thing that undergoes some action
Archaic. a sufferer or victim
My team members and I don’t stand by waiting to “undergo some action.” For now, we are fortunate to be well enough to venture out on our own terms. As Amy says, “When you have a disease or a neurological disorder, you can handle yourself. It is everyone around you (including family and friends) that can be the stressful component of that diagnosis.” Outdoor Mindset lets us take a break from all of that. When we are together, we share experiences. We do not treat ourselves as if we are fragile. We keep moving – as if we can’t be stopped.
Chandlee Bryan has been an Outdoor Mindset member since 2013, and is active with the Vermont/ New Hampshire chapter. She holds a Masters in Education, is an undergraduate career advisor by day, and writer of narrative non-fiction at night. You can connect with @chandlee on Twitter.