Multiple Sclerosis sucks. MS in college sucks worse. Imagine waking up every morning so exhausted and your back so sore that pulling on your socks hurts. Then the fatigue and the pain gets worse throughout the day until all you want to do is go home and crawl into your bed. That's how much it sucks.
I had to get that rant out of the way. MS took over my life in college. Seemingly one night I went to bed a normal teenager and the next morning MS hit me like a logging truck rolling off a mountain. I became a hidden invalid from an invisible disease. Since I looked fine, friends couldn't see how much I was hurting. They slowly drifted away when they couldn't understand why I never did much.
I've had that affliction for thirty years and researchers have come up with some amazing medications, but this story takes place before the miracles happened. This is a story of how I grew into the person I was supposed to be with the help of some remarkable women.
One wintry morning during my junior year in college, try as I might, I could not get the spoon full of cereal to my mouth. Ataxia had taken over and my fine motor control was gone. After I gave up on breakfast, I couldn't tie my shoes, and when I did make it to class, I couldn't read my own notes. Those problems resulted in a couple of hospitalizations and an unending course of rehabilitation. I managed to keep up with my studies and pass, but life became an exhausting up hill climb where I typed my assignments with only my index finger because that's all the control I had and where I counted taking a shower by myself as a major victory. I came home an emotional basket case with a dose of street heroin to do myself in if things got any worse. I'm not proud of it, but life at that point looked like a downward spiral into darkness without friends or love.
I placed the three packets of street heroin in my shaving kit where I could see them daily and ask myself if life was bad enough for the final option.
"We're sending you to an MS resort this summer," Dad announced over salmon with dill sauce one evening at dinner the week after I came home from college.
Salmon was supposed to be good for MS so Mom prepared it once a week. It wasn't until later that I realized it was an act of love. Nobody liked it.
I could tell by the grins on Mom's and Dad's faces that they thought I'd be overjoyed.
"I was looking forward to a summer of flaking off. It's been a tough year."
"This is supposed to be a great place," Mom said frowning at me probably because I wasn't jumping for joy, "it comes highly recommended in all the MS publications. There's a doctor and nurses on staff at all times, plus there's plenty to do. The brochure shows hiking, canoeing, sailing, archery, all sorts of games and crafts. It's got to be better than you hiding up in your room for the summer playing those computer games."
She flourished a glossy brochure from beside her plate and passed it to me. Sure enough, it showed all sorts of singles in high hair and bell bottoms grinning at the camera as they went about their glorious co-ed camping experiences 1970's style. They were standing, sometimes with canes or crutches while others grinned up from their wheel chairs. To my parents I'm sure it looked like a great place for an outdoor experience that would accommodate my limitations, but to me it looked like an open air MS ward replete with mosquitoes.
"Great, I get to spend my summer with people telling me how lucky I am to have a relatively mild case of MS,"
I thought to myself.
Doctors, nurses, therapists, and even my parents from time to time had told me that. Except I didn't feel lucky. I had a debilitating disease that kept me too tired to run, too sore to jump, and too drained to participate in most of life's little pleasures, but before I could object...
"Your father sent the payment for a five week stay." Mom added with an arched eyebrow, "and during that time your father and I are going on a long postponed European vacation, so you see it's the best of both worlds. You get a pleasant summer at a resort while your father and I get our first vacation in years."
She reached over and gave my father's hand a squeeze.
That was that. There was no sense complaining or negotiating. Mom had announced in so many words that she and Dad needed a break from me and I couldn't blame them. I needed a break from me.
That is how on the last Sunday in June, I found myself standing beside my luggage in a gravel parking lot reeking of pine and fresh air as my parents thundered off in the family station wagon. Dad showed enough restraint to not speed off in a cloud of dust. His wheels did throw a few stones though.
A guy wearing the official camp shorts and t-shirt came up to me.
"Charles Schaffer?" he said squinting at the sheet of paper on his clipboard.
"Chuck, call me Chuck."
"Okay, Chuck it is, my name is Brad, I'm your health consultant," he made a note on his clipboard and looked up, "you're my only add today, so let me tag your luggage, and then we'll hike back to your cabin." Brad was a big guy, one of those Nordic giants that populate mid-western high school football teams except he lacked muscle tone. I recognized the look. He had MS too.
We followed a gravel road a quarter mile through piney woods and pot hole swamps to a screened in cabin nestled into a hillside beneath towering red pines. Other cabins were scattered about at random up and down the hill. Down below where the ground flattened out stood a rustic lodge that looked like an oversized log cabin complete with faux cedar shingles.
"This is home for the next," Brad consulted his clipboard, "for the next five weeks."
He opened the door and I stepped into the semidarkness flipping on the overhead light. There was a bed, a chest of drawers, and a night stand with a nondescript lamp sitting on it beside the bed. That was it. It was easier to name what it didn't have. There was no minifridge, no microwave, no television, no bathroom, no air conditioning, no video games, no windows to shut, no room service and no carpeting. In addition, the walls and the roof were bare studs, and there were no windows, just screen stretched across large openings. The damp, musty aroma of decaying pine needles was included at no charge.
"It's pretty basic," I mumbled in a fit of understatement.
"Well, the whole idea is to give you an authentic camping experience and to get you out and mixing it up with the other resort customers," Brad said with a shrug, "the rest of the camp is pretty up to date. Our medical facilities are top notch, and you're going to be amazed at how good the food is," he walked to the door and pointed out a block building we had walked past, "the bathroom and the showers are right there. It gets very dark on moonless nights, keep a flashlight beside your bed in case you need to use the facilities at night, and if you take a whiz off the porch at night, cover it up. The camp director gets really torqued when people pee outside their door. It's a health department violation."
"While we're at it," he added after a little thought, "is there anything I need to know about your medical condition? My job is to look you up a couple of times a day to make sure you're okay. I'll get your file later on, but I'd like a head's before you fall out of your canoe and drown."
I shrugged.
"There's been no big changes lately. Mostly I get ataxia, numbness in my extremities, fatigue, and of course the ever present MS hug. If I do get a flare up it's usually my kidneys. I won't be subtle if that happens. It's agony to move at all."
He nodded.
The MS hug for you lucky non MS folks is a constant feeling that a tight band around your chest is constricting your breathing. It was my first MS symptom.
"Sounds like what I have except my flare ups are in the digestive tract. If anything changes or gets worse, sing out. We don't want anyone leaving camp in an ambulance. It's bad for you, it's bad for me, and it's bad for business."
"Where's everybody at?" I asked.
"Most people end up down by the lake on sunny afternoons like this. You're going to like it down there, the female to male ratio is skewed in your age group this year, so you should have no trouble finding female companionship. Why don't you spend your time exploring?" he pointed at a road cut through the trees on the far side of the activities area at the base of the hill, "follow that road. It'll take you to the lake. In the meantime, I'll figure out what happened to your luggage. It should be here by now."
