The Pledge, The Turn, The Prestige: A Fiasco

My wheelchair crapped out on me on Tuesday. Wednesday was worse.

I had been noticing over the course of the last couple of months that I had one wheel that appeared to be a bit out of alignment, but it was only noticeable if I was at my therapy clinic where I could see the chair head-on in front of a full-length mirror. Some wheelchairs have a camber angle built into them, the purpose of which I believe is improved stability and steering, but don’t quote me on that. Regardless, my chair doesn’t have that and so a wheel out of alignment is something that should be checked out. My wheelchair has a collapsible frame, and I went so far as to check to make sure that the frame of the chair was properly extended and the slight tilt of the wheel wasn’t being caused by some small, correctable adjustment to the frame. Then when there wasn’t anything that could be done to the frame to fix the tilt, I sort of let it be and forgot about it. Every once in a while I’d catch my reflection in the clinic mirror and notice the tilt to the wheel, but it didn’t appear to be getting any worse, so I didn’t do anything about it. Worse case scenario was that maybe the axel bracket was coming lose in some way and needed to be tightened. Something that could be gotten done down the road or at anytime in between when I thought about it..

I already have plenty of complaints about the design of my chair and its wheels. First of all, any of the decisions I made about what kind of chair I wanted, were made at a time when I was still trying to get healthy enough to leave the University of Michigan hospital for the first time after my accident. At that time, my strength and functional abilities were drastically different than they are now and so the chair I have now was ordered based on what I was able to do over three years ago. One currently needless feature is that I ordered the aforementioned collapsible frame, because at the time I was without my own transportation and so any time I wanted to go somewhere, I needed a chair that could be folded up and stowed in the trunk of friends’ or family members’ vehicles. Even though it affords the owner some flexibility when traveling with other people, folding frames are heavier than rigid wheelchair frames and ever since I bought my van I never fold it down now anyway. I have a bracket bolted to the bottom of my chair that holds a pin, which in turn slides into a lock mounted to the floor of my van to keep my chair secured while driving. The bracket prevents the frame from being collapsible. A second drawback to the bracket is it also adds a significant amount of weight to the chair. Another change I would like make to the chair would be to get rid of the inflatable tires. I’m constantly adding air to my tires to maintain a hard, fast ride. Under-inflated tires add resistance when trying to push around and I have also blown out the inner tubes in either tire at different times when trying to have someone help me inflate the tires with my shoddy, tire pump. The next set of tires I buy will have solid, tubeless inserts so I never need to worry about low tire pressure. In addition to the tires, I don’t like the design of the leg supports and foot plates at the front of my chair. Currently, the leg supports are designed to swing open and the foot plates pivot up and these features were selected at the time to ease my transfers in and out of the chair. I learned, however, that when I perform my transfers it is much easier to balance and complete the transfer if I leave my feet on the foot plates; therefore the flexibility of my chair’s current configuration is kind of pointless. However, those are all minor gripes and only interfere with my mobility on an occasion. Without a doubt, the aspect of my chair that gives me the most routine grief are the specialized wheels I’m using.

My wheels have a battery powered electric motor in them that, even though I propel my chair manually, allows me to do so without burning out my shoulders and arms in the everyday process of getting around. My power-assist wheels have enough propulsion in them to make it possible for me to get up-and-down most inclines without needing help. The breaking-resistance function on a decline keeps me from having to worry about my chair getting away from me and sending me careening downhill out of control if I lose my grip. I’m also able to roll through grass if need be, although I found out over Memorial Day that soft, sandy ground is debilitating even with these wheels. When I have to traverse long distances, I can set the wheels to a low gear ratio that makes it quite easy to move my chair. So it is those features that make them the most viable option for someone like me who wants a manual chair, but doesn’t have the strength or stamina to go to a full manual set-up. Yet the wheels, despite their functionality, are not without their flaws.

Despite taking great care to get a full charge every night, depending on how much I wheel around during the day, I often run the danger of running the batteries all the way down. It's not uncommon for me, upon arriving home after a morning and afternoon of consistent wheeling, to need to recharge my wheelchair batteries for an hour before heading back out for the evening. It's a contingency plan I learned after having one or both wheels die on me unexpectedly when out in public. The problem isn't so much that the batteries have died, but that when the batteries are dead, I'm then pushing an additional 50 pounds of dead weight, which is how much the wheels weigh by themselves. On top of the weight of the chair and my own body weight, this additional resistance prevents me from pushing up any incline or even pushing a moderate distance without significant exhaustion-inducing effort. In relation to the wheels needing to be charged every night, if I feel like going somewhere for more than a day I have to make sure and pack the battery charger. Over the course of three years, I’ve also had problems with the power cord to the battery charger and both charging leads developing shorts in them from general wear and tear. This in turn, can lead to an insignificant battery charge, my wheelchair batteries running low, and so on and so forth. The pattern repeats itself. Ultimately I’d like to be able to get into regular manual chair and leave all these issues of dealing with batteries and chargers and excessively heavy wheels behind me, but my arm strength, limited endurance, and lack of grip just make that proposition unrealistic in the here and now.

At the other end of the spectrum I could always get a full-sized power chair. There are plenty of unique power chairs with amazing features to choose from: chairs that recline, chairs that stand the rider, chairs that can go off-road, and even chairs that can climb stairs. The first problem I have with all these types of power wheelchairs is their sheer bulk. I constantly encounter restaurants, stores, and bars were I have hard time navigating up under tables, around cluttered floorplans, through crowds, and into restrooms in my wheelchair. Most power chairs sit up higher and have a larger footprint that would exacerbate getting around in these types of spaces. You can also forget about going into anyone's house that doesn't have a ramp, or traveling in someone else's car with a power chair. To my knowledge, there isn’t a power chair made that weighs less or that has a smaller profile than my current chair that would make any of those situations easier to navigate. Then aside from the logistical limitations of a power wheelchair, on a personal level, the other main reason why I don't want a power chair is how I feel about my self when I use one. Going out into the public-at-large in a wheelchair is a spectacle to begin with, but in a power wheelchair I feel like I stick out even more. Of course, high-level quads, people with MS, stroke survivors, or people with a TBI who have to use power chairs all of the time, would trade places with me in a heartbeat. The other added benefit of my current wheelchair configuration is that pushing my chair does provide me an opportunity to get a fair amount of cardiovascular exercise. So from the standpoint of my own self-esteem, even though my power-assist manual wheelchair gives me all sorts of shit, I prefer it over the power wheelchair because it makes me feel more vigorous.

On Monday the problem with my wheel worsened to the point where I thought it was in danger of falling off, so I anticipated making an appointment Tuesday morning to take my wheelchair in to get it fixed. I own a set of spare, manual wheels and I had my aide swap out the bad power-assist wheel for one of the manual wheels. I quickly recognized how difficult it is to push a manual wheel on my heavy-ass wheelchair across the carpeting in my apartment. Exiting down the ramp of my van without the assisted breaking of two fully functioning power-assist wheels added a new degree of difficulty, as the dead-weight momentum of the manual wheel almost sent me off the side edge of the ramp, and further drove home the point of how much I need my power-assist wheels. Unfortunately, I was informed at the wheelchair seating service it was probably going to be upwards of three weeks before I got my wheel back in working order. I asked if they had any spare power-assist wheels that I could borrow for the time being. They did not, but they could put me in a loaner power chair. I told them I’d think about the offer. Tuesday night, as I lay awake trying to massage the rock-hard knot of tightly cramped and fatigued muscle fibers at the base of my neck, I decided that if I was going to be without a properly functioning wheel for any significant amount of time, I was going to need a loaner wheelchair.

On Wednesday morning I drove back over to the wheelchair seating service to pick up the power chair they had set aside for me and I dropped off my defunct power-assist wheel to be shipped back to the manufacturer. The wheelchair tech who I talked to about the problem with my wheel reassured me that sending the wheel back to the company probably wouldn’t take as long as the three weeks he originally quoted to me if he put in an order for the parts to fix it himself.

“How long then?”
“Oh, definitely less than three weeks.”
That’s definitive. Fan-F’ing-Tastic.

The power wheelchair the tech set me up with is a complete P.O.S.: the low-profile seat cushion that came with it is uncomfortable; the back rest is too high, altering my posture and thus throws off my sitting balance; the foot plates are flimsy; the speed control adjustment is missing its knob and stuck on one setting; it lacks any sort of battery level indicator lights; and there isn’t a way to actually secure it to the floor of my van while I drive, so I’m banking my safety on the chair’s weight and the fact that its wheels lock up when the power is turned off. Before I left I had to send the guy back inside to retrieve for me the battery charger that fit this particular chair. After I got myself secure in the driving compartment of my van the wheelchair tech loaded my original wheelchair in my van behind me and he locked the brakes to keep my other chair from rolling around behind me as I drove. Of course this meant that I wouldn’t be able to get out of my van when I got back home, so I called my buddy Jak to meet me at my place to help me exit my van. When we got everything unloaded and back to my apartment, I had Jak help me clean up some of the grime off of the loaner power chair. We also switched out the crappy seat cushion that came with the power chair with my Roho air cell seat cushion. The Roho cushion is nearly twice as thick as the one that came with the power chair and helped to temporarily alleviate some of the posture problems I was experiencing. We then hung out for about a half an hour and then Jak got ready to leave.

I followed him down the hallway of my apartment and stopped at the opening of the hallway that makes up the living room-dining area. Jak grabbed his keys and flip-flops and headed out the door. In that moment I pushed forward on the control stick of the power chair and nothing happened. I looked down at the single, green power indicator light next to the control stick; it went blank, blinked red, and then went blank again. I pushed up on the control stick a second time, and again nothing happened; I watched the same sequence of blinks on the power indicator light. In that instant my front door closed behind Jak. I flipped off the power for a second and flipped it back on, hit the control stick again, the chair lurched forward an inch and then nothing.

“Jak! Wait!” I yelled as I quickly glanced down to my lap for my cell phone. It wasn’t in my lap. “Jak!” I cast a darting glance to the end table, eight feet away against the half-wall that separates my kitchen and dinning area. There amidst the clutter of things routinely I cart to and from my van—spare change, keys, iPod, sunglasses—was my phone, utterly out of reach. I looked out my front window to see Jak pulling away in his Jeep. Across the living room the digital clock on the cable box sitting on top of my TV read 12:38.

The next five minutes or so I spent trying to decide what in the hell I was going to do. Without battery power a power wheelchair is a hundred and fifty pounds of “I’m screwed.” I briefly thought about yelling until one of my neighbors heard me, but that would never work. I hadn’t seen the car of the woman who lives above me for days and it wasn’t out in the parking lot now. I was too far from any adjoining walls to try bang on and draw the attention of the neighbors that lived on the backside of the building, and who knew if they were even home. 

I leaned over the left side of the chair and looked down to one of the drive wheels. Situated on the top side of the cylindrical drive motor is a silver lever that can be positioned to disengage the gears that power the wheel. With the power off and both wheels disengaged, the chair can be pushed around by anyone who needs to reposition it; often an easier way to move a power chair than trying to control the chair under power for someone who is not actually seated in the chair. I thought if I could get both wheels disengaged I might be able to pull along the wall back down the hallway into my computer room and the cordless phone I have in there. After several more minutes of struggling to get the wheels disengaged my first pull on the wall succeeded in only backing the chair a few inches on an angle away from the wall. I might be able to produce one more pull but that would just position the chair completely out of reach of everything.

In the next moments, as I sat giving up on plans A, B, and C, I heard the new text message chime on my cell phone go off. I knew exactly who the message was going to be from, as I had previously made plans to attend the Detroit Tigers game that night. Tuesday afternoon my friend Tonya called to make sure we were still on for the game and I had recounted how I was having problems with my wheelchair, but that I was anticipating having those problems rectified by the time I needed to leave to meet her and her friends at the ballpark downtown. I thought about the possibility of just sitting there until someone came over, but that was also a ridiculous proposition as there wasn’t going to be anyone coming over until my aide came in the next morning. I couldn’t sit there that long. I started to curse the wheelchair tech for sending me off in a shitty power chair without charging up the batteries. I cursed myself for not asking wheelchair tech if they had fully charged the batteries before I left with the damn chair. I contemplated how much effort it would take to get to the point to where I would be able to propel a manual chair without any special wheels or batteries. 

I cursed the irony of the fact that, the entire time I lived in my apartment, I had the I’ve-fallen-and-I-can’t-get-up Medic Alert system at my disposal and that last week my insurance company called me and told me they were no longer going to pay for the service. If I wanted to continue using the service (I didn’t) I’d have to start paying the monthly fee out of pocket. In the beginning I wore the alert bracelet, but took it off because I kept bumping it and setting off the alarm. Then I just kept the bracelet on my wheelchair for a while, but stopped carrying it altogether when I traveled overseas two years ago and haven’t carried it since. For two years my insurance paid for a service I had no capability of using because I quit carrying the alert button and I paid a local phone bill for a phone I never make calls on just because the service needs to be hooked up to a landline. I was awaiting the arrival of the next bill to cancel both services in one fell swoop. Oh Irony, you are on top of your game today, bastard.

It was now approaching 1pm and only one course of action remained. It was the course of action I knew from the moment that I didn’t have my phone on me would end up being the only way I was going to bring this fiasco to a resolution. The course of action I was avoiding; I was going to have to crawl to my phone.

I spent several more minutes trying to decide just how I wanted to position my feet in preparation of making my "controlled" fall onto the floor. I didn’t want to get a foot hung up on one of the foot plates and then be stuck on the floor, further compounding the problem. If I placed my feet on the floor and then fell awkwardly to one side or the other I might run the risk of twisting a knee or worse. That wouldn’t necessarily prevent me from crawling across the floor, but I would compound things later on down the line. The same thing could said if I fell too fast and cracked a knee cap or chipped an elbow. In the end, all of this scheming and preparation really boiled down to psyching myself up for the fact that once I started down to the floor, there was a very small window in which I would be able to pull myself back up before I reached the point of no return. Once I crossed that event horizon and landed on the floor I wasn’t getting back into my chair without someone coming to my rescue.

So, I pulled the arm rest off the right side of the power chair, lifted both of my legs over to the right side of the seat cushion, hooked my right arm around the push handle behind me and started to lean forward over my knees. The toes of my shoes started to turn towards the right under the building momentum and I was able to hold up for a moment to straighten them with my left hand back in the direction I wanted to head towards. I let go of the push handle with my right arm and extended it out in front of me to brace for my fall. With both arms out in front of me I was able to control the speed of my fall a lot better than I expected and the tone in my legs seemed to help carry a bit of my shifting weight; I was expecting my legs to simply collapse underneath my body weight. I landed on the carpeted floor resting on my left forearm with my legs bent at the knees pointing in the same direction as my upper body faced. From there, rolling over on to my stomach was kind of easy and I ended up in a pretty good position to combat crawl over to the end table and my phone. At full extension, my body length significantly cut down on how far I was anticipating needing to crawl. I also happened to already be wearing an elbow pad covering my left elbow as I had been having trouble with keeping my elbows from getting skinned up at therapy this spring and summer. I hoped I wasn’t going to re-open a long-healing scab I had on my elbow for several months.

The combat crawl is something that I have practiced in therapy sessions within the last year and a half. I’ve done multiple lengths of a fitness studio before fatiguing which may equate to 30 feet of crawling or more. What makes it difficult as a quad is that all of the crawling is done with the arms and whatever percentage of my body weight my legs and lower torso comprise is dead weight. But the distance to the end table, I was able to cover in less than 10 pulls and so I arrived within an arm's reach of my phone in pretty good shape. I propped up on my left forearm and reached towards the top of the table with my right hand, but I needed to get a little closer and then I made my first mistake. I pulled closer, but instead of propping back up on my elbow I lost my balance for a second and rolled over on to my back at the foot of the end table. Laying on the floor looking up at the ceiling and the underside of the table I could picture where my phone was just a few feet above me. In that position however, I was only able to reach up and back onto the top of the table the distance of the length of the back of my hand to my wrist. With the backs of my fingers I could feel the outline of the TV remote control that sat atop the edge of table where I had left it that morning. Blindly fishing around next to the remote, I could just barely feel the leather of the case that covers my phone and if I rushed trying to pull it towards the edge of the table, I would just end up knocking it back onto the table further and out of my already limited reach. I kept knocking into the TV remote and at one point, as a result of my fumbling, the remote swiveled on its rounded plastic body and it bumped my phone to where I could no longer reach it. The concentration and visualization of the top of the table and its contents began to zap my strength after even the modest crawl. I rested for a minute and looked for a tool.

Leaning against the right side of the end table, where I always keep it when I’m not using it, I have a lap desk with a raised edge around one of its long sides. I use the lap desk as a tray, most often to eat from while watching TV, but also to carry provisions back and forth from the kitchen to my dining room table. The raised edge keeps said provisions from sliding off the lap desk and onto to the floor, most of the time. I reached around the side of the end table and got a hold of the lap desk. With the raised edge facing down towards me, I held the lap desk in both hands and lifted it above my head over the blind edge of the end table. I began to use the lap desk to carefully rake the contents on the top of the end table down on to the floor next to me. My goal in this effort was to try and avoid bashing myself in the face with whatever items I brought cascading down from on high. In two pulls I had the TV remote, some loose change, a few meaningless papers, and finally my phone scattered about the floor around me. I grabbed the phone and called Jak. He didn’t answer. I left him a message summarizing the hour’s events, the gist of it being, “I’m on the floor. You’re not at your phone. I’m calling 911 to get help. They’ll come get me. Call me back.” After I left the message I called 911.

Once I placed the call to 911 and knew the paramedics were on their way I felt a relaxing calm come over me. I noticed that I was kind of comfortable lying on the floor. The carpet was cool to the touch. If I wasn’t expecting visitors I probably could’ve taken a nap. Instead, I took some pictures with my camera phone.








When the paramedics arrived they knocked on the door and I called for them to come in to my apartment. There is a scene from an old Tom Hanks movie, The Money Pit , in which his character unknowingly steps into an obscured hole in the floor of his multimillion dollar, in-the-process-of-being-renovated mansion. He slowly sinks into the hole up to his torso and remains trapped there for several hours until his wife returns home. He calls to her to rescue him and when she enters the study where he is trapped, she doesn’t see him at first glance and leaves the room. He calls to her again and she thinks he’s playing around because she already looked for him in that same room. Hanks’ response, in an exasperated, flat voice is, “I’m in the study, in the floor.” That scene flashed through my mind as the paramedics entered my apartment. I’d like to know what they wrote in their call report of what they witnessed when they walked in: two wheelchairs, in various stages of disrepair, neither occupied; young male, Caucasian, lying supine on the floor, arms outstretched, legs slightly crossed, alert—possibly relaxing.

“Are you okay, sir?”
“Yes.” I felt obliged to explain what I was doing on the floor before they picked me up. Pointing to my right, “That’s my wheelchair. One of the wheels is busted.” Then, pointing beyond my legs, “That’s a loaner chair. It wasn’t charged up before I brought it home. I didn’t know this. I got stuck and my phone was on this table. I crawled over here to get my phone.”
“You got on the floor on purpose?”
“Yes.”
“Which chair do you want to get back into?”
“Good question. I guess my busted one. At least I can sort of push that one.”

They got me back in my wheelchair. In the process of crawling and then being hoisted back in my chair, my jeans had fallen down around the middle of my thighs. The paramedics then executed a combination lift/pant readjustment; it could’ve been a bit done with a bit more grace. Before they left I had them plug in the power chair to the battery charger I brought home from the wheelchair seating service. It was now after 2pm. I made lunch.

I ended up going to the Tigers’ game, like I had planned, but like everything else Wednesday that too had its glitches. My plan of taking the power chair unraveled when I discovered that with my high profile Roho cushion on the power chair and the low-profile foam cushion on my wheelchair I sat in, the height differential was too great for me to clear transferring back into the power chair without risking another, this time unsolicited, trip back to the floor. I had done enough of that for a while. I went to the game in my crapped-out chair and needed to have Tonya push me around Comerica Park.

Thursday morning I got into the now, hopefully, completely charged up power chair. I turned it on and got some movement like it was functioning properly. I toggled the power switch off and then on again and immediately activated the control stick: the nefarious blinking light sequence. I waited and moved the control stick again: still more blinking lights. I turned the power off and on again and then waited a second. Action applied to the control stick produced a corresponding movement this time…

The punchline is that, despite all outward appearances and symptoms Wednesday afternoon, the power wheelchair may not have actually been low on juice after all. All of that nonsense Wednesday probably could’ve been avoided had I turned the chair on and off a few more times and waited just a couple seconds longer before attempting to put it in motion. All of it: the anxiety, the trepidation, the crawling, the blind phone recovery, the paramedics’ house call. Every last asinine second, all of it might have been totally pointless.

Well, all I can say on that one is…effing A.

The Week of 1000 Miles: Fin

Saturday, May 26th: to Big Knob

For the past 12 years a group of my friends have been camping together every Memorial Day weekend at a secluded campground in Michigan’s Upper Peninsula. At its genesis, as I am told, it camping trip was a way for underage friends from Wisconsin and Michigan to convene at a midpoint destination and have a party. In the intervening years it has evolved in many ways and has seen a bachelor party, the ebb and flow of attendees, brothers and sisters, boyfriends and girlfriends, warm weather, freezing weather, sun and rain, late, late nights and sunrises, a ton of drinking, the odd hook-up, visitors near and far, marriages and now children. I have attended twice and this year, after a few years’ hiatus, returned for my third visit.

Big Knob campground is situated on the northern shore of Lake Michigan six miles down a winding gravel road off of U.S. Highway 2, west of bustling Naubinway. The entrance to the campground is so well marked that those who blink at the imprecise moment will miss the turn. This is not all bad, as its seclusion pretty much guarantees the campground is completely empty when we descend on it in mass every year. A little internet research yields that Big Knob gets its name from what amounts to a dune hill that rises a whopping 140 feet above the surrounding terra firma. I have yet to lay eyes on this Rock of Gibraltar, but the DNR claims it exists.

I have camped in a lot of places in my life starting in the backyard as a child and progressing through various stages of rustic to plush accommodations. As I got older many family vacations took the form of camping trips as we paraded around the state, first with tents, and then in the minivan towing a pop-up camper trailer. Both of my parents in their youth vacationed with their respective families on numerous camping vacations. My mother’s family undertaking a well-documented 3-week trip to the American West when she was a teenager and my dad’s parents driving he and his brothers to places like Gettysburg; quintessential American vacations of the 50s and 60s. The farthest my parents took me and my sister was a two-week trip to Gettysburg, Washington D.C., and into the Shenandoah Valley in Virginia. Aside from that most of our family camping experiences took place in any number of state park campgrounds in and about northern Michigan. Once I started college I met a group of friends that shared a love a travel and so, in varying groups and numbers, I’ve camped in several places in the western U.S. and Canada. These trips were undertaken with a greater sense of seeking adventure and bare-bones subsistence than compared to parking the pop-up on a campsite for three days and roasting marshmallows every night around the campfire. The pinnacle being backcountry hiking and camping in Denali National Park in Alaska: no manicured campsites, nary a trail, navigating by topographic map, fording rivers, filtering water from mountain streams, keeping an eye out for the odd Grizzly bear or irritated moose, and being bombarded by billions (yes, billions) of hellacious mosquitoes. Big Knob, despite its secluded location, lack of electricity, and pit toilets, is not rustic camping. This is fine because Big Knob weekend isn’t about adventure, it’s about camaraderie.

Camping in many ways is an ironic undertaking. In an effort to live minimally in harmony with the natural surroundings, we pack mountains of equipment that would be completely unnecessary were we to spend the weekend at a friend’s house or at a hotel. Packing for Big Knob is no different. In its twelve years, the core nucleus attendees to Big Knob have become a well-oiled machine in regards to knowing exactly what and how much to bring of everything. Those of us on the fringes are responsible for providing our own accommodations, creature comforts and bare necessities, but food, drink, and mess supplies are provided, plentiful and perfectly in order. It still amounts to a pile of gear though, especially now that children have been thrown into the mix. In my previous life as a traveler I often packed light and my general rule of thumb was “one bag,” regardless of the trip duration. Going to be gone more than a week? Depending on the climate of my intended destination I’d pack sufficient underwear and socks, but probably only one or two pairs of pants and only a few shirts of flexible utility. The less that gets packed, the less there is to carry, as well as get checked onto planes, or lost by baggage handlers. Of course this plan wasn’t totally foolproof as I once boarded an eight passenger plane, its flight plan taking me from San Juan, Puerto Rico to St. Thomas, Virgin Islands, landing twenty-five minutes after taking off; only to find after arriving in St. Thomas that my bag—one of ten bags to be loaded on the plane by the ground crew in San Juan—didn’t come through on the conveyor belt where I awaited it at baggage claim. Absurdly, the only time I have ever lost a bag.

In the three years since my injury, my travel exploits basically came to an abrupt halt. Health, money, stamina, issues of personal care and independence were all contributing factors in how far and how long I ventured from home. Gone are the days of packing a bag in an hour, grabbing some CDs, hopping in the car and dropping in on friends ten or twelve hours later in Atlanta, Philadelphia, Minneapolis, or wherever during summer vacation. Traveling wheelchair-bound puts a pretty big crimp in the assault-style method of travel I used to enjoy. There are so many other aspects and complications besides just packing for a two night trip to consider now. My biggest concerns in deciding to return to Big Knob this year were the weather, sleeping comfortably, and my wheelchair in Big Knob’s wheelchair-hostile terrain.

The weather at Big Knob is highly unpredictable from year-to-year and the best bet is to prepare for the worst and then hopefully be pleasantly surprised. I prepared for cold, which for me anticipating being outside all day, was basically anything less than 60°. I have poor circulation and terrible body temperature regulation so it doesn’t take much for me to catch a chill. In anticipation of nighttime temperatures forecasted to drop into the 40 degree realm I brought thermal undershirts, a hooded sweatshirt, a fleece jacket, a knit hat and mittens. When I arrived Saturday evening it had been sunny and 70° during the day, but as I got help unloading my gear the clouds had rolled in and rain drops began sprinkling down. From about 8pm Saturday night and onward a steady, light rain fell. I slept that night wearing everything I wore during the day, save for my shoes and the fleece jacket I put on upon arriving. The rain abated early Sunday morning and the day was cool, but dry. From the get-go on Sunday I layered in two undershirts, the hooded sweatshirt, fleece and knit hat. Staying warmer during the day and having the good fortune of being dry, I went to bed feeling much warmer than the previous night. True to form, Monday being the day in which we all had to pack up and leave, featured the best weather of the weekend: sunny and warm. Aside from Saturday night, I managed to stay fairly comfortable temperature-wise and with the ferocity of the mosquitoes this year I was glad I had plenty of long sleeves and a hat to stave off their ravenous swarms.

Tent camping doesn’t lend itself to the most comfortable sleeping arrangements. Roughing it in Alaska, where my friends and I were setting up camp with what we were able to carry on our backs, finding a completely flat place to set up a tent was pretty much pointless. Traveling light we didn’t have extras of blankets, sleeping bags, or fluffy pillows with which to cushion our sleeping space and so most nights we made due with trying to be as comfortable as possible on the uneven ground. Even at Big Knob I think the best I’ve previously done in terms of cushioning between my body and the ground was a second sleeping bag underneath the one in which I slept. As the Big Knob experience has expanded and people have gotten smart about what to bring, I’m pretty sure that this year everyone slept on some sort of air mattress. For me from the perspective of dealing with paralysis, the issue of what to sleep on had less to due directly with comfort as it had to do with preventing sores from sleeping in one position all night long on hard ground. My sleeping arrangements at home I have tailored in such a way that I am able to get in bed and move about at night without having to worry about sleeping in one position too long and risking a sore. Tent camping eliminates all of that convenience. Not only did I have to rely on my friends to get me out of my chair and into my tent, but they also had to get me in my sleeping bag, and then set up the implements I needed at night for being able to go to the bathroom. I knew I wasn’t going to be able to turn and reposition at night because I didn’t have anything to pull against, so before embarking on the trip I made a stop at my local camping store and purchased a self-inflating ground roll. At full capacity it expanded to 2½ inches and kept me off of the cold, hard ground. I made sure and bought the six-foot long pad so that my feet wouldn’t be resting on the ground either. On top of the ground roll I brought a thick blanket and a second sleeping bag to give me additional, softer layers to lie on top of in my down sleeping bag. Lying still on my back all night long wasn’t the greatest, but it was comfortable enough that once I warmed up inside my sleeping bag, I slept soundly. The ground roll and extra sleeping ended up being sufficient padding as I made it through the weekend without any bruising or skin breakdown. Aside from reconciling those comfort-related issues I brought with me a small, battery powered, reading light that I set by my head so that if I needed to see in the tent at night I had a light source available. I also made sure to attach a leather loop to the zipper of my sleeping bag before I left so I would be able to work the zipper when I needed to open up the bag at night to go to the bathroom. To top it all off, my friends brought an extra sleeping bag that they draped over top of me and that provided an extra layer of warmth that was especially welcomed on the first night. In the end though I think two nights of that was enough as I awoke on Monday morning feeling quite stiff.

The final piece of the puzzle was figuring what I was going to do with my wheelchair. I use a manual chair that has power-assist wheels. The wheels are powered by batteries that need to recharge after every day’s use. At home I accomplish by plugging into the charger at night while I sleep. Big Knob campground doesn’t have electrical hook-ups and so bringing my charger would be useless. The problem of my batteries running out of juice meant that once they were kaput I would need someone to push me around everywhere. Without the power assist function working the wheels, because of their design, become 50 pounds of dead weight. I packed my backup set of regular manual wheels thinking that once my power assist wheels quit we could switch to the manual wheels and, at the very least, my friends would be able to push me around in a much lighter chair. Then a couple days before I left I had the idea to charge up the second set of batteries I own for my power assist wheels and see how long they hold a charge without being used. Upon discovering that they still held a full charge overnight I decided to bring the second set of batteries along as well. Driving up on Saturday the power assist wheels on my chair sat turned off for six hours and so when I went to bed Saturday night the first set of batteries still held a decent partial charge. After I got into my tent, I had my chair stowed inside my van overnight. In the morning we swapped out the first set of batteries and I used the fully-charged second set during the day Sunday, thus after they crapped out Sunday evening I still had the first set holding a partial charge to use on the way home Monday. In the end I never used the manual wheels I brought, but they wouldn’t have done me much good anyway as the tires on those wheels are only a half an inch in width and would’ve sunk right down in the sandy soil of the campground. As it stood, even in my power assist wheels, which are pretty good at powering through grass and uneven terrain, the ground in certain spots around our campsites was so soft that the front casters on my wheelchair dug in and I needed to be pushed around anyway. I spent a great deal of time perched near the fire pit and occasionally got help to move to more desirable vantage points or to be closer to the thick of the action.

So, despite my initial concerns camping in Big Knob came off with few hiccups. Considering what I felt were going to be the biggest obstacles and the fact that the weather was less than stellar, I can only assume that future return trips will only get easier. That being said, I'm probably not going to throw camping into my regular rotation of weekend activities. Big Knob was successful for me because of the people that were there with me. Basically I have my friends to thank who catered to my every whim and fancy over the weekend. From pushing me around the campsite, fetching me food and drink, helping me dress, unpacking and then repacking my gear—none of it would have come off without their help. All I really did was show up.

Round trip mileage: 699

Cumulative week's mileage: 1139

(does not include routine trips to Livonia on Monday, Wednesday, and Friday)

The Cat's Out of The Bag

My sister got engaged to her longtime boyfriend last weekend. The above is not a picture of him, but it is a picture of the bobblehead I gave him last Christmas because he looks just like the character Dwight from NBC's The Office. It's mostly because of the hairline and the glasses.

All kidding aside, he's a good guy though: an engineer by trade. Which is good because my sister has a Master's degree in Oboe performance. So, at the very least now she won't starve.

Congratualtions!