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Home / Stories / Personal Histories / Other's Stories / Nor snow, nor ice, nor bitter cold…

Nor snow, nor ice, nor bitter cold…

Written by Claire on Friday, January 19, 2007

Okay, so I’ve paraphrased the mail carrier’s motto a bit, but in my climate, that’s what I have to contend with, and that’s what will not stop my wheelchair from getting through. Here’s the story of my second pretending trip, a 2-day struggle through below zero temperatures and a heavy snowstorm.

An hour’s drive from my house, just before you cross the border into the next state, there is a little parking area off to the side of the road. For me, the state line is the dividing line. In my state, I’m an able-bodied wannabe. In the next state over, I’m a para. I pulled into the parking area in order to set up my chair and the car.

I drive a mini-van, and what I did this time, rather than take the chair apart every time I got in the car, was to leave it assembled, but I removed the passenger’s seat directly behind mine, and put that in the trunk. I put my fully-assembled chair in that spot. When I get out of the car, I reach behind me and open the sliding passenger door, and then just roll the chair out onto the ground. This requires that I put some weight on at least one leg on the ground. But it works. If I was totally unable to bear weight on my legs then I’d have a better set-up – a more appropriate car, a lighter chair, more assistive equipment. But since I’m not set up for that, I do it the best way I can, and I have been assured by paras that some paras can stand, so there is nothing really wrong with standing, even if one is trying to emulate a para. With the chair on the ground I just transfer into it and then shut both doors, and wheel away. Getting back into the car, I roll up, and open both doors. I transfer into the driver’s seat, then lean out and pull the chair into the empty space behind me, and then lean across and close the sliding passenger door. Again I have to stand a little to do this. I saw that trick in a video posted by someone at a discussion group for wheelchair users, except he had the upper body strength and the reach of arm to be able to do it without standing up or bearing weight on his legs at all.

I stopped a little further on for a potty break and a water bottle, and for the first time tackled a completely snow-packed surrface. I quickly discovered that my rims got wet in the snow, and I could get no purchase on them with either of the two pairs of gloves I had brought (bicycle gloves, and a pair of regular winter gloves), so I went bare-handed, which was cold in the snow.

When I arrived at my destination I spent the whole afternoon at the mall, and ate lunch at the restaurant. I stopped at the information booth at the mall to ask the lady to take my picture trying to get up one of the impossibly steep ramps that you have to go up in order to get from one end of the mall to the other. She refused, saying that it’s not allowed to take pictures inside of the mall, since it’s private property! But she offered to push me up the ramp. Then she said “But you don’t have handles! How can anyone push you?” I told her I didn’t need handles when ramps weren’t too steep, but anyway, I could get up the ramp by myself, albeit with a lot of effort, pulling myself hand-over-hand on one of the handrails. She told me that she’d lodge my complaint about the ramps, but she was sure that they were regulation slopes. Perhaps they are, I don’t know.

I checked into my hotel, and ate dinner at the hotel restaurant, all without the slightest mishap or anything interesting to report. I was disappointed that this was going to be an uneventful trip! Well, that came back to bite me in the ass.

After dinner, I decided to go to the movies. I got there early to get a good parking space with no parking placard, and did, but even the best parking spots here weren’t very close to the entrance. It was – 5 F, with a wind-chill factor of a biting –22 F! I didn’t have gloves on, and my fingers burned fiercely from the cold metal of my rims and the snow that stuck to the tires and the wind. I had trouble getting in the door because of a slight rise, my tires spun, and the rims were wet, and I couldn’t get a grip on them, but I eventually manhandled myself through the door with the person in the box office looking on wondering if she should do something or not. There were no other patrons in sight. I paid for my ticket, and bought popcorn. For easier carrying I bought a little tray filled with popcorn, a candybar and a drink, that I could put on my lap, but the girl asked me if I would like her to carry it for me. I at first said "no", but eventually thought that better safe than sorry, so I admitted that yes, I would like a little help. My first reaction is always to refuse help.

We went into the theater and I parked in the last row where there is some space at the end of the row for wheelchairs. There were three people sitting there (in regular theater seats), and one lady said "we’re in your spot, aren’t we?" I said no, I was fine. But I didn’t like sitting in the back of the theater so I ventured down the sloping aisle, thinking to get closer to the screen and transfer into a real seat to be more comfortable. Once there, I thought I had gone too far, and that I would have to crane my neck up to see the screen, and I hate that. So I spun around to go back up, and I found that I couldn’t wheel back up the slope! Especially with the popcorn on my lap. One of the people sitting in the wheelchair row asked me if I needed help, I said “No, I’m fine, thanks.” About two seconds later, I dropped my popcorn, and trying to pick up the box, I started rolling backwards, grabbing onto the theater seats to stop myself. The guy who had asked me if I wanted help went “Awwww….” and jumped up to help me, and there was another lady sitting just behind me, and she got up, and she leaned down and said into my ear, “It’s okay, I’m right here. I’m a nurse. I have my foot right behind your wheel, you’re not going anywhere” as if I had been panicking or something. The people still sitting in the wheelchair row watching kept saying things like “awwww” and “poor thing” and “just gotta be independent” and “oh, such a shame” and so on. All I did was drop my popcorn!! I must have been absolutely beet red because I wanted to die of embarrassment. The nurse pushed me back up the slope, noting that “you don’t have any handles!”. I replied “Usually I don’t need them.” I allowed her to push me, although I really felt like I could have made it up the slope, given time to pick up my popcorn, and figure out how to keep what remained of it on my lap. The guy who had come running down the aisle gave me back my box of popcorn, minus most of the popcorn but with the drink and chocolate still intact. I thanked them and felt like a total fucking idiot. I said “I should have known better, I didn’t realize how steep that slope was” and that “I have a shoulder injury, I have a hard time pushing uphill” (both true statements). They got me back to the wheelchair row and I parked next to the lady who was sitting there. She got up, and she was very obese, and could hardly walk, clearly was disabled herself. She shuffled slowly out of the theater…and returned with a box of popcorn!! She handed it to me and said “I was going to buy you a new popcorn but I told them it was for you and they wouldn’t let me pay.” I just about died…I didn’t ask for that kind of treatment, but I thanked her about a million times, told her she didn’t have to do that, etc. It would have been far easier for me to go get my own popcorn, wheelchair or no, than it had been for her.

This kind of thing is where pretending does become problematic. If you get yourself into a jam, and strangers have to help you…what then? You have to accept their help and inconvenience them and feel guilty about that or stand up and expose yourself as a fraud. But that’s my old guilt talking. I will probably never lose that, completely. The real truth is that I have to do this to manage my feelings of BIID, and that as a person with a mental illness I’m not less disabled or less valid or less real that someone who physically can’t walk. A psychological need for a wheelchair is not less valid than a physical need for one. I know this to be intellectually true. It’s still hard to accept it. I’m not a fraud, but anyone who saw me get up and walk wouldn’t know about BIID, nor had time to ponder it’s meaning and come to these conclusions.

What I need to do is to know my limits, and do my best to stay out of these situations. Like anyone would.

The next morning, after breakfast at the hotel I dragged my ass and my chair through 2" of fresh snow, haphazardly tried to knock the snow off the car (from the chair), and drove off towards town. When I was a few minutes out, and was on a totally deserted stretch of road with forest on both sides, I realized that the car sounded strange and was making odd vibrations. I thought…"Oh no…it’s not a flat tire…is it?" So I pulled to the side of the road, stood up (trying to look like a para who can stand somewhat), leaned forward to see the tire that I suspected and sure enough…flat. I don’t have a cell phone. I was in a wheelchair, and even if I wasn’t, I still don’t know how to change a flat tire. I couldn’t wheel all the way back to the hotel in this snow on the side of the road, could I? It was still snowing, and the temperature was still -5 F. So I got back in my car, turned it around, and drove slowly back to the hotel, praying all the way. Let me get back, let me get back… I know you’re not supposed to drive on a flat tire but I didn’t know what else to do, in my situation.

Hoping I wouldn’t seem too pathetic, I wheeled into the lobby and told the receptionist that I had a flat tire, and could she recommend someone to come out and fix it? So she called someone, and I wheeled off to wait somewhere. I was pissed because I was going to miss time wheeling, but I supposed that it was all part of the experience.

The towtruck arrived, and I wheeled out to show him which car it was. He put air in the tire, and waited a few minutes to see if it would stay inflated. It did, and he suggested that I return to the garage to have them check it and make sure that it was going to be OK. I agreed, and I opened both car doors, and transferred into the driver’s seat, with him looking on. As I bent down to grab the chair and pull it into the van behind me, he said “Let me get that” and leaned down and grabbed it by both wheels and attempted to lift it. Of course the frame spun around on him, and he dropped it. I told him not to grab it by both wheels, and he got it into the back of the van and closed the door. I thanked him, unable to resist adding “I can do it, though.” He said "I know, but it’s easy, for me!” Ha!

I was able to follow the towtruck to the garage after he put air in it. When I first pulled up, the guys were on break and they told me it would be about 15 minutes. My tire had been filled with air, and I asked them if they thought it would be good for another 15 minutes, they said yes. So I decided to go to Duncan Donuts to get some coffee. As I drove by a McDonald’s I pulled in there instead, because it was closer. It was still snowing, and there was fresh snow on the ground everywhere. I was on the lookout for a good parking space (not a designated accessible one), but there were none. There wasn’t even a ramp! At a McDonald’s! I drove around to the other side of the building and right in front of where the drive-through cars go by, there was a short, steep ramp, covered with fresh snow. I said “Forget it,” and kept driving. At Duncan Donuts, there were again no spots, except for the accessible spot which I couldn’t use. I parked a bit a way, where I could sit and wait for someone to leave, but I didn’t want to get out of the car there, because there was a slope, and I wouldn’t be able to get back up it in the snow, I was sure. While I was watching, a young woman pulled into the accessible spot and got out – no permit, perfectly able-bodied. I just watched, hoping I would get into the restaurant before she left, just so she could see me, and feel guilty. Finally someone about 4 spaces away from the accessible spot pulled out, and I drove in, got out of my chair, and wheeled to the ramp. There was a bunch of lumpy, packed snow at the ramp, and I got totally, completely stuck for the first time ever. I just could not move. My wheels spinning, going nowhere, neither forward, nor back. I was right next to the illegally parked car, and, wonder of wonders, the lady who had parked there walked out at that moment! (There is some justice in this world). She asked “Did you need some help?” and I admitted, “Yeah, I do,” so she came around to help me. Neither one of us made mention of the fact that she was illegally parked – the idea is to win them over, not alienate them, right? She went behind me and said “You have no handles!” I answered “No, I don’t like to be pushed. Normally, I don’t need it! But this snow…” so she pushed my back rest and I pushed hard on my wheels and we made it past the snow and up onto the level, better shoveled surface. I thanked her, she said you’re welcome, and drove on her way. I wonder if that little encounter will make her think twice next time about where she parks?

I really try to live by the principal that my wheeling should never act negatively on the next wheeler to come along, and should instead act positively. My being there should make a positive change. I try to do that, every chance I get. While I didn’t engineer this encounter, it worked out well.

Sitting in Duncan Donuts sipping my coffee I must admit I got very discouraged. I had had a hell of a time with the flat tire, the parking at McDonalds, trying to get decent parking at the donut shop and get past the snow. I was fed up, exhausted, and in a very rotten mood. But I told myself, I have to do this. I am not going to give up and go home. I can’t stand up and walk out of here. There are people who go through this bullshit every day and if I am serious about wanting to know what it’s like (even if I can only ever know a mere fraction what it’s like), then I have to go through this. I have to take the bad days, I have to get stuck, I have to get pissed off, my hands have to burn with cold because it’s –5 F out and the metal on my rims gets so cold my skin nearly sticks to it, and they get wet from the snow, which increases the cold, so that by the time I finally get inside my hands are red and burning. I have to be pissed at how inaccessible everything is, and I have to feel like nobody gives a shit because nothing is accessible, and I have to want to give up and go home but I can’t do that because I have stuff to do and I’m not going to give up. My shoulders have to ache from the effort and I have to feel exhausted by the challenges. And all the while, knowing that even that much isn’t real because tomorrow when I go to get my coffee at Duncan Donuts in my home town, for the rest of the winter, I’m just going to walk in. I am thinking, I’m fucking insane to want this, and wanting it nonetheless, and thus, I’m fucking insane.

And a little voice inside my head said a real para would have appropriate wheels and tires for these conditions, he would have decent wheelchair gloves, his arms would have built up strength that you don’t have, he’d have learned to negotiate obstacles you can’t handle yet. And he might have even moved to Florida! And that much is true, but it still doesn’t mean it would be any easier, were it real.

I dreaded going back out, trying to get past the snow on the ramp, and into my car. I just knew I was going to get stuck again, and need help, and my hands were going to burn fiercely with cold. But I took a deep breath and went out, and somehow made it down the ramp, noting that there was a new illegally parked car in the accessible spot, and made it into my car without further mishap.

I returned to the tire store and as I drove up, one of the employees came running out to meet me. Apparently, he had been tipped off by the towtruck driver that the lady in the grey minivan was in a wheelchair. The store itself being inaccessible, with a 6” step up, snow falling, and the temperature being – 5 F, they allowed me to just sit in the car while they jacked the car up, changed the tire, jacked it down, and the store manager came to my car to discuss prices, have me sign my credit card slip, give me the receipt, etc. Good service, I must say. As I was waiting, I was still in a foul mood from the flat tire and the whole ordeal at Duncan Donuts, and I took out my laptop and typed the following into a message to a friend:

“Fuck, fuck. Plus, I’m coming down with a cold, my throat hurts, wheeling in the snow is very difficult, and my right shoulder is falling apart. Reality bites.

This is all good. Every single bit of it will be remembered on days when I can’t stand it anymore and consider self-injuring. At the same time, it makes me more hopeless, because I see how impossible it really is. Sure, if it happened accidentally, I’d deal with it, and probably be happy about it, but at the same time, I would not be living the life of a para that I expected. Healthy para with no shoulder problems living in an easy climate…nope, that’s not me!! It’s too late for that, I moved from the south to a cold snowy climate and I’m 37 and my shoulders were falling apart before I ever sat in my own wheelchair. Too late, too late. It should have happened when I was 18. It will keep me from self-injuring, but makes me feel more hopeless…there’s no way out of this.”

I returned to my hotel to pack and check out. While checking out, I told them that there were some accessibility problems with the shower, and if they were interested I would point them out. The Front Desk Manager followed me to my room, and I showed her how I couldn’t reach the fold-away shower seat from my wheelchair, in order to fold it down. I also showed her how the telephone shower head was way too high for me to reach, and that if I turned on the water to the shower, the water fell two feet in front of where the shower seat was, so I couldn’t take a shower. (This felt like déjà vu because I went through this same thing at the other hotel where I stayed at last time). I admitted that I could stand enough to grab the showerhead, but that some people couldn’t, and that even when I had gotten the showerhead, the minute I let it go, it fell back against the far wall of the shower, where I couldn’t reach from the shower seat. She took in all this and remarked, “You know, I never thought about it before, but now that you point it out, I can totally see what you mean.” I said I thought a movable shower seat would be appropriate, as well as having the showerhead lower down where it could be reached, pointing out that neither of these things required much investment. She agreed. While she was there I asked her to bring my suitcase out, and she did, and put it in the back of my car. In parting, she said “I hope when you come back we’ll have that shower fixed for you,” and I smiled and thanked her. Again, I hope, hope so much, that my being there has made it better for the next wheeler to come along. You know, they may hate me passionately, but I mean it anyway.

And I wonder…am I the only “para” to ever come their way? Hasn’t any other “disabled” person travelling alone ever stayed in that room? Didn’t they complain about the shower? Maybe they didn’t want to make a fuss. If they didn’t, then should I take it upon myself to do so? Or maybe they did, and the hotel didn’t do anything, and I’m one more voice calling for change..

I went to Wal-Mart, and nothing of note happened there, except that the guardian angel of parking spaces smiled on me and I snagged a great spot that was next to the accessible spots. Off to Mario’s East Side for lunch, and again, nothing special happened, except I got another great parking spot. I have an even deeper appreciation now for the preoccupation with parking spots, understand it in a way I did not, back when I did this in half-way decent (relatively) weather.

At lunch I was feeling tired and subdued. The waitress never once looked at me, just took my order and talked to me always with her eyes somewhere else. It was disconcerting, and didn’t do much to raise my spirits. As I ate, I wondered if I should come back again once more before this long, cold winter ends, or if I should hold out for spring, and if I do that, will that be because I’m chickenshit, or realistic, or what?

As I crossed town on my way home I started to reconsider driving 2.5 hours home this tired in a snowstorm. I stopped at a grocery store to find a pay phone. I approached an employee and asked him if there was a payphone nearby. “Sure, over here,” he replied, indicating the direction from which I had come. I spun my chair around, and he said “I was going to help you, but you have no handles!” I replied “No, I don’t like being pushed.” What is it with the handles!?! Besides which, what did he think I needed help with? Turning around? I called my husband and explained about the snowstorm, and that I was going to spend another night here. To tell you the truth, I didn’t mind the prospect of getting one more day in my chair, either. But my husband was angry, he was alone with the kids, and I was off galavanting in my wheelchair, and he wasn’t happy about it at all. He tolerates these trips, but just barely, and doesn’t understand why I do it at all.

I pulled up to the motel I stayed at last time I was here, thinking that this would be a good opportunity to check and see if they had fixed the accessible shower like they said they would last November. I asked if the room was available, but it wasn’t. They had regular rooms, though. I thought about whether I wanted to stay in a regular room. I asked them what the weather forecast was, and they put the Weather Channel on the TV in the lobby and they were forecasting snow for the next two days! I decided that as long as I have to drive home in the snowstorm, I might as well do it tonight, and try to restore some peace at home. As I pulled out of the motel parking lot, I noticed that hotel’s snow-removal tractor had taken over one of the disabled parking spaces, and encroached dangerously on the second one. And the remaining space hadn’t been plowed out in days!

On the way home, when I crossed the state border, I stopped to put the chair away properly. I got out of the car, dissassembled my chair, and put the frame in the passenger’s seat next to me, and the wheels behind the passenger’s seat. I went around to the trunk and got the seat that I had removed, and reinstalled it behind the driver’s seat, and closed the door, and drove off.

As I was driving, I felt a sadness that I was leaving the chair behind. Well, it was coming with me, but it would no longer be my means of transportation, it would just be an office chair, not my companion throughout the day. I felt attached to it, and unwilling to leave it behind. When I remembered how much trouble it caused me, how difficult it was, how my hands burned and how I got stuck in the snow and embarrassed myself, was pissed off and discouraged, I wondered that I could feel so nostalgic about it. But through the whole thing it was me and my chair, it wasn’t all sunshine and roses, in fact it downright sucked, but I was in my chair, I was getting done everything I needed to get done. It was a challenge and I faced it. And I wasn’t obsessing over being someone I wasn’t, I just WAS. Without that chair, had I gone through similar frustrations, I would have been pining for the chair and wishing I was in the chair and had my mind half on what I was doing and half on what it would have been like if I had been in the chair. Instead, I just had my mind on what I was doing, and I did it. Such a liberating feeling!!

I can’t wait to go back.

Tags: BIID, Transabled, Pretending, Pretender, Wheelchair, Paraplegic, Para, Wannabe