I spent the past week in Empire, Colo., on a Love Your Brain Retreat for folks like me. That’s right, there are folks like me. What a revelation!
Before the trip, I imagined I would seem like some kind of fraud (never mind my ridiculously complicated drug regimen, my enormous sleep needs and my goofy behavior). I figured I’d look like some kind of “normie” TBI poser next to my fellow campers, who surely hadn’t learned to cope as well as I had.
Turns out, I had a lot to learn.
My more than 40 newfound friends hail from a melting pot of states, including Massachusetts, Connecticut, New York, New Jersey, Maine, Pennsylvania, Ohio, Indiana(!), Michigan, Minnesota, Montana, Oregon, Colorado, California (I think), North Carolina, South Carolina and Georgia. I was the lone Illinois representative, and there was also one Canadian, from Toronto.
Their brains had been damaged by car crashes (like me), falls, strokes, motorcycle accidents, multiple sports-related concussions and, in at least one case, a serious illness.
Their ages, from what I could tell, varied from approximately mine (middle age-ish) to retirees to careerists to–and this truly broke my heart–young people who hadn’t had the chance to experience what I had, at 41, when my accident happened.
Good grief! I’ve been typing this long and I haven’t mentioned the Rockies! When I’m finished writing, I’ll get my husband to help me insert a couple of the too-many photos I took of the scenery. For the first two days, I kid you not, every time I stepped out of a cabin door I couldn’t help but look out and say, “Oh, my God!”
Anyhoo, in the circle, other campers echoed my concerns about not being taken seriously, because brain injury is an “invisible” illness. No matter how distant or recent their diagnoses, the common theme was what a relief it was to be with others who understand. We may look like everything’s hunky-dory, but there are a lot of intricate pieces holding everything together. Sleep. Drugs. Routine.
The retreat provided it all, and then some. The medical staff made sure we got our daily meds at the proper times, even if they had to hunt some of us down when we forgot. (Guilty!) Mealtimes (brain-healthy portions created by our neurologist-turned-chef-after-a-TBI) were at 8 am, noon and 6 pm sharp), plus unlimited healthy snacks, plus the protein bars I had stashed in my room. (A girl’s gotta eat!)
We had optional blocks of activities during the day, interspersed with two-hour periods of rest or free time. Those who know me can guess I didn’t want to “waste” a moment recharging my brain. I explored the area, talked with everyone I could find (name tags helped us all) and even played the piano(!).
The mountains themselves provided my greatest adventures. We were allowed walk alone but were required to have a running buddy on the steep slopes. My running buddy was a young man who became a runner after multiple concussions had sidelined him from hockey. Taking the safer wood-planked uphill path, we ran (jogged? I’d left my running watch behind, because who cares?) up and up, occasionally, getting a perpendicular break before heading upward again.
Exhilaration! Sure, I huffed and puffed, but my quadriceps muscles were giving me a hallelujah in comparison to my usual flatland training. When we turned to go down, I was in hamstring heaven–though, of course being careful with my steps. We ended up in a different place, so it was up again and down again (the brain injured leading the brain injured)!
Other days there were hikes, alone or with various groups. With two friends, I hiked quite a bit higher than I’d run with my buddy. One guy showed me a ramshackle cabin at a low summit. I can’t remember its original use, but various groups that have stayed at the retreat grounds have covered the interior with hilarious graffiti. I picked up a piece of chalk and added “LISA LIKES BRAINS.” If later campers think I’m a zombie, so be it.
I walked down alone and encountered a retired gentleman who was part of what I’ve come to call The Breakfast Club. This consists of myself and two retired couples–both with the wives as caretakers. I’d eat breakfast with them sometimes and came to see them as parental figures–especially the bearded Bostonian who called me “kid.”
The man on the trail seemed a lot like me–happy, silly, rebellious at his spouse’s attempts to keep him safe. Also, an adorable giggle (post-TBI). He wanted to get off the boardwalk and onto the more dangerous slope, so I made sure to protect him. (I should note here that staffers were always nearby.) We sat on a stump and talked. The gist: He’d been a corporate-type guy who was always stressed about this and that. After his brain injury, he’s a new man. Oh, and did I mention he walks with a staff carved with the face of Gandalf from “Lord of the Rings”?
Next was art therapy, where the idea was we often mask what’s really going on.
We all paired off, and one of us lay down while the other applied plaster-coated strips to our face, minus the eyes, nostrils and mouth, of course. Anyone uncomfortable with such intimacy could choose a ready-made mask. My partner, a former gymnastics school owner from Maine, eased my art anxiety as she talked about the sport with me, the mother of a former college gymnast.
Then it was time to decorate the thing. Oy.
I really had no idea what to do when I sat the table with two fellow campers and a staffer, who was also creating a mask. When I said as much, I got advice. Lots of advice. A head-spinning amount of advice for someone as easily overwhelmed as I am. One of these new friends, a soft-spoken, wise and caring man, talked with me about myself.
Somehow, with all of their counsel, along with practical help from the staffer, I began to make “art” out of the vision I’d articulated: “My mask is humor. I use wit and silliness to cover up tension, even sadness.” I forgot to take a photo of my mask–no way was I lugging it back on the plane–but it ended up with Krusy the Clown style hair made of glue-gunned feathers and a clown nose I made by hot-glueing a fluffy ball of some sort that I’d rolled in red paint. I found a silver sequin tear, so I put that on, too. Sad clown, I guess.
The other main activity was yoga–a couple of daytime sessions of gentle yoga and also yoga nidra at night, right before bed. Before this retreat, I figured all this yoga stuff would be soooooo unnecessary for me. I’m a trained yoga teacher … well, technically. I’ve volunteered as a teacher, but that was I-forget-how-many years ago. These days I just like doing yoga, learning new stuff. Selfish, now that I think about it.
And for the uninitiated, yoga nidra is a soothing, almost still practice done on the back. It’s not uncommon for people to fall asleep. There were lots of snores. Sometimes, buried emotions come up, and that’s what happened to me. With all the physical and mental “trying” pared away, I think I opened a door to some real feelings. Spoiler alert: Brain injury is hard. Anyway, a very gentle staffer was there to talk me through it.
I know I’ve already mentioned the food (See how I’m avoiding unpleasantness?), but a very interesting practice we did on two mornings, silent breakfast, deserves mention. The idea is to eliminate the distraction of conversation, which by that point in a week when you got to know so many people who understand and accept you as you are, is impossible. We. Had. Pancakes.
With butter. And syrup.
For me, closing my eyes and enjoying my food ever-so-slowly was a natural. We shared our experiences–some had looked around, some out at the mountains. One woman tried to make eye contact with people until they turned away. But another woman said she spent the whole time just watching me enjoy my food.
I don’t know if that’s called being in the moment or just being hungry!
The last night of the retreat was our talent show. It was a surprising, amazing, moving, hilarious night that displayed the many ways people living with brain injury still have–or come to develop–expertise. There was music, poetry, dance, art, comedy–all shepherded by a couple of wackily dressed MCs from the staff, one of whom had a literal hook for when someone went over their time.
I went over my time. I was reading one of my blog posts, *”Idiot-proof watch, meet idiot *Is not the title of this blog post,” when I got a poke at one of the laugh lines. My reaction? No ego. I doubled over in laughter as I exited stage-left.
The next morning, it was a frenzy of packing (we’d already started the day before), a quickie breakfast and tearful goodbyes before the airline travelers boarded the shuttle for our trips home.
This trip was a big deal.
So many wonderful people–and a therapy dog from South Carolina I’m in love with. It took me a couple of days of grieving, and I’m still wearing my Love Your Brain ballcap, but now I’m really back. I’ll be staying in touch with my new friends.
First off, getting there and back meant flying, and since I had impulsively decided against having my caregiver/husband along, it meant flying all by myself. Not only had I not flown solo since the 2008 car accident, I’m pretty sure this was the first time in our 30-plus-year marriage I had done that sort of adulting.
Luckily (or is there really such a thing as luck?), my super-protective and hyper-competent husband got things prearranged for me on the front end. As for the return trip, I was in the hands of my new heroes, a saintly husband-and-wife duo who call themselves the A Team. Later, at my departure gate, another angelic fellow camper helped me on my way.
Truly, traveling was the only difficult part of the week. The rest was bliss.
As I learned this week, I belong.
Continue reading “This one time, at brain camp …”
That’s Brain Injury For Ya 