Julie's Article: SCI in the Great Outdoors

In case you never got a chance to read Julie's article entitled SCI in the Great Outdoors, I am posting the content below (originally published in the University of Michigan Model Spinal Cord Injury Care System):


I am sitting amidst hundreds of acres of national forest land, overlooking grand old ponderosa pines, raggedy sagebrush dappled with colorful bursts of purple and yellow wildflowers, the air around me cool and brisk as the sun gently warms my skin. I am also in a wheelchair with a T-7 spinal cord injury and getting here wasn’t exactly easy.

It is the summer of 2004 when a friend and I flew from Detroit, MI to Reno, NV where we stayed overnight at a friends’ house. The next morning we hop in a rental car and head two and a half hours north towards the Modoc National Forest – we are going to attend the annual Rainbow Gathering of the Tribes. The Rainbow Gathering is an annual event which takes place in a different national forest each year. The first gathering took place in 1972 in Colorado and it was a coming together of folks to pray for peace on earth. Nowadays the gatherings continue to take place during the first week in July, culminating in a silent meditation on the fourth of July, followed by a great big ‘Om’ chanting circle and prayers for peace. Hundreds of people attend from all walks of life, as everyone is welcome and respected as a human being. For one week in the majestic national forest it is as though a temporary wilderness city comes to life complete with filtered, running water (from the streams), kitchens created from felled logs,
tarps strung up over fire pits, solar showers, designated latrines, and a network of trails to navigate.

Different camps are established with themes ranging from ‘Kiddie Village’ to ‘Yoga Camp’ to ‘Instant Soup’. My friend and I drive our rental car into a remote area of the forest near the California/Nevada border and finally discover the masses of cars parked in rows by our fellow travelers. After asking for directions from several different people we find the parking spot our friend reserved for us which is close to the trail head. I’ve brought with me a duffel bag packed with clothes and other essentials as well as a larger bag which contains my sleeping bag, small tent, tarps, and pillow. Many people are milling around and it’s not hard to find someone to assist us in carrying our belongings down the trail towards camp.

We are camping with other folks from Michigan at a camp designated ‘Turtle Soup’- no, we don’t eat turtles, in fact most of us are vegetarians; we are named Turtle Soup because we move around slowly and deliberately just like turtles.

I feel like the ultimate turtle as I slowly and steadily maneuver my wheelchair over tree roots, rocks, gravel, and sagebrush. At times when I struggle to keep my balance a pair of hands will appear behind me to help guide my four-wheeled ride. After a joyful reunion with our many
friends we get down to business setting up camp. Once I gain my orientation of the way things are set up I realize that Turtle Soup is kind of at the far end of the happenings (one of the main happenings being ‘Main Circle’ which is located in a large meadow surrounded by huge rock formations, it is the place where everyone and anyone can meet at dinnertime
to be served delicious food.)

I decide that I’d prefer to set up my tent near ‘Yoga Camp’ where I plan to spend most of my time attending yoga classes and meditation. (Oh, and by the way, the yoga classes are free, so are the meals, in fact everything at the Gathering is free, no money is allowed, and instead the barter system is used at a place called ‘Trade Circle’).

My friends help me lug my bags over to the yoga site where I manage to find a decent spot free of sand (which becomes ‘quicksand’ to my wheelchair) and complete with several trees to hang my tarps from for protection from sun and rain. A kind brother offers to help me get set up, or
rather I help him get my gear set up. With a sense of relief that my space to sleep and keep my belongings is secure, I settle into a peaceful mood.

Unfortunately my mood is quickly interrupted by a pretentious yogic egomaniac who tries to tell me to move my campsite because it’s too close to where they’re holding classes. I explain to him that due to my wheelchair I need a space that is close to an established trail as well as a spot clear of rocks and sand. He shows no sign of understanding this and I fight to hold back tears as I watch him point to a spot off in the distance where he says I should camp instead. I think of all the effort my new friend had put into helping me establish my campsite and I feel defeated.
My friends urge me not to let the negative encounter get under my skin and they recruit a few more people to help me move my gear to a new spot next to a ‘Chai Kitchen.’ It is already late afternoon and I feel exhausted from maneuvering my chair over the rugged terrain. I have to pee so I wheel off to a spot unencumbered by tents or kitchens and I cath from my chair into the pale grey-green sagebrush.

I came supplied with a bunch of extra catheters, anti-bacterial soap to keep my hands clean,
and a daily cranberry extract supplement to help me fight off those pesky urinary tract infections. Once I’ve used up a handful of catheters I will soak them in a small tub of bleach water and then rinse them with fresh bottled water. I go to bed early later that night and sometime during the hours of darkness a friend drops off a care package of warm wool socks, a candle, and some trail mix to snack on. When the light of morning hits my tent I feel sluggish and grumpy but the sound of my name being called wakes me up. Two of my close friends invite me to join them in exploring the magnificent ‘city of rainbow’.

As I squint against the sun to see their smiling faces I can’t help but observe their puttogetherness – hip packs filled with sunscreen, toothbrush, and camera, full water bottles stashed in their backpacks, comfortable walking sandals on their feet. I feel a bit of wistfulness as I remember back to life before SCI – those days and years that I spent doing daily activities with ease, not giving a second thought to the abilities I was blessed with.

My mind races through the essentials I have yet to take care of this morning before I can join them. I still have to cath, do my manual bowel program in the privacy of my tent, change my clothes, gather my purse filled with necessities, and transfer myself from the ground up into my wheelchair all of which will take at least half an hour. A sense of overwhelming frustration and sadness creeps into me and I begin to question if all this effort is worth it – the sweat, the dirt, the bruises, the plain inconvenience of it all. Trekking through the wilderness is daunting and priorities easily translate into taking care of basic needs such as cathing, nourishing
my body with food, and staying hydrated. I spend a minute looking at my immediate surroundings and realize that I am kind of stranded here by myself for the most part. My friends notice this too and convince me to move my camp back over to ‘Turtle Soup’ where I will be closer to friends that can help me when I need it. They reassure me with positive support and agree to meet back with me in a little while.

They go off in search of some hot tea for the morning while I settle into tackling my first set of morning rituals. My dark mood begins to lift and when my friends return we go about the business of tearing down my camp once again and hauling everything over to ‘Turtle Soup.’
During our journey my feet continuously fall off of the footrest and dangle dangerously close to the front wheels. My friends help me secure my feet in place by tying several bandanas around them. Also, due to the bumpy terrain my purse bounces around on my lap so I’ve strapped it on using a bungee cord. Once we arrive at ‘Turtle Soup’ my friends help me choose a camping spot right off of an established trail and conveniently close to the kitchen. One of my friends rakes aside the debris of pine cones and rocks so I have a smooth, soft place to sleep on. My tent is up in no time with the help of others and I finally feel at home at my little campsite.

My days are spent visiting other camps, meeting new friends and old friends, eating delicious food, helping out in the kitchens, and basking in the majestic company of nature. During the evenings I go to drum circles and warm myself next to blazing bonfires. Every now and then I will be blessed with a special treat such as popcorn or hot chocolate. On the third night my
friend and I are headed towards a drum circle when we come across a small stream on the trail. My friend has to carry me over the stream by moonlight and then bring my chair over. We are feeling proud of our successful stream crossing when moments later I feel something under me get caught. I look down and observe that the hard plastic spokes on one of my front castors are all broken and the now useless wheel is turned sideways like a donut. Not having
brought a spare I suppose my options were to laugh or to cry. Although I’d come equipped with allen wrenches, duct tape, and an extra seat cushion cover it didn’t cross my mind to bring a spare wheel. Sometimes you can only plan ahead to a certain extent. I let out a howl and then began laughing at the absurdity of it all. Oddly enough my chair was still stable enough to continue rolling along the path.

Over the course of the next few days a small black dog that only had but three legs would pass me on the trail and inspire me to keep truckin’ along. I met several other wheelchair users as well. One woman had two long metal poles attached to the front of her chair, rickshaw style, so that when her friend pulled her the chair would tip back onto the large rear tires thus avoiding the undue bumpiness caused by the small, front castors. It is one thing to adapt to living life in a wheelchair and it is another thing to adapt a wheelchair to the landscape of a national forest. All I know is that the experience of it all is an ultimate workout, both challenging and rewarding, made possible with a little help from my friends.