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And the Door Slams Shut
Written by Chloe on Thursday, August 7, 2008
July 2nd 2008 was a strange day. My partner had called me at work in the late afternoon to talk about her feelings, having spent most of the day taking care of her disabled sister. When I arrived home she wanted to talk some more about that. After a while she told me that there was something in the bedroom for me. I opened the door. There was my wheelchair; MY wheelchair. My first ever wheelchair! It had arrived. I thought it was absolutely beautiful.
The wheelchair had been delivered that day, and my partner had assembled it for me. I really appreciated how thoughtful that was of her. I sat in the wheelchair right away. It was beckoning irresistably. It felt SO comfortable, physically and emotionally; and SO right. My partner and I looked at each other. We understand each other very well from a look. She knew that I was happy to be in the wheelchair. I knew she was happy for me. We also saw in each other that we both understood how serious this is, and that it is not a game.
I wheeled towards the master bathroom. Negotiating the bedroom furniture was more difficult than I thought it was going to be. My partner’s instinct to help took over, and she started pushing me. I said: “No, I need to do this”. I was immediately sorry that I hadn’t said it more nicely. She was just trying to help; but I have a need to be independent. It seemed like the combination of practice, and a little furniture rearrangement would make things go more smoothly. I made it into the master bathroom, and checked out that I could access the toilet, shower, and walk-in closet. Then I wheeled back into the bedroom.
My partner and I looked at each other again. Again we understood. I got up out of the chair and walked into the dining room for dinner. She told me that it was hard to see her wife in a wheelchair after spending the day with her sister. I already knew this. I also knew not to get back in the wheelchair again that day.
After pizza we watched a movie my partner had picked out. The protagonist’s leg gets amputated. She frequently picks out movies featuring paralysis/wheelchairs/leg braces/amputations. And so to bed.
July 3rd
In the morning I transfer from the bed to my wheelchair. This was a big reason for me getting a wheelchair in the first place. The very first thing in my mind when I wake up is that I’m supposed to be paralysed. It was really bugging me to get out of bed and walk to the bathroom; it just felt so wrong.
The first thing I find out is that I am unable to propel the wheelchair on account of the hand splint that I wear at night to prevent flexion contractures due to dislocations. It is impossible for me to grip the rim with my left hand. O.K., obviously I need to take off the hand splint first and carry it in my lap to where I keep it. Every little detail needs to be figured out.
I wheel to the toilet and try to transfer without using my legs. No way! I have to cheat. Need to get rails installed. I realise I need someone to teach me how to do transfers anyway. It’s not obvious to me.
Now for breakfast. I wheel back through the bedroom and try to get out through the bedroom door. Due to the floor plan I find that it is completely impossible. ARGHHHHH!!!!! Yes, I am living in inaccessible housing. This sucks big time! I have to get out of the wheelchair, fold it, get it through the door, sit back down. BIG ARGHHHH!!!!
The kitchen seems inviting. I can reach the stove, the sink, the microwave, the fridge, the coffee, the food I want for breakfast. But wait; the coffee mugs are in that cupboard out of reach. I think about what to do. My partner is still asleep, so I can’t ask for help. I want to do everything for myself anyway. How about a cup or a glass? No, they are all out of reach. I give up. I stand up, get the coffee mug, and sit back down. I am feeling ridiculous and start laughing at myself. Oh well, I’ll figure things out. Everything else in the kitchen goes smoothly. I wheel into the living room, coffee mug between my thighs, plate on my lap, and turn on the TV to check the weather. Getting around the kitchen/dining room/living room areas is pretty nice. I gradually learn more precision in the maneuvers.
July 4th
My partner leaves on a two week trip by herself. I need to pick up someone from the airport in the evening. I’ve been wearing leg braces out for everything except work for almost a month. How about trying the wheelchair? I’m a little wary about it because I don’t have much upper body strength due to a physical condition. I figure this is a good opportunity to try it out though.
First time out in public with the wheelchair! I am excited. I park on an upper level of the airport garage so there’s not too many people around. I check to make sure nobody is looking; then I get out of car, haul the wheelchair out of the back, and immediately sit down. I find that I can shut the back of the car, lock it up, etc, all from the wheelchair.
Here we go! This is my first time ever for strangers to see me in a wheelchair; well, except when I had surgery, but that’s different. There’s a guy waiting for the elevator with me. He ushers me in first. I give him a smile, expressing thanks, and maneuver so that there’s room for him to get in. I’m next to the buttons, and he’s going to a different floor, so I push the button for him. Such a tiny thing; but it made me feel good to do something for someone else.
To the baggage claim: no problems. There are two other people in wheelchairs waiting in the baggage claim area. We give each other glances. Why do we do this? I don’t know. Are we just acknowledging each other? Are we wondering about each other? There are always people in wheelchairs at airports. None of the ABs gives a second look. I’ve been to the airport in leg braces. People stare at you a lot more when you use leg braces and crutches.
The plane is late, so I get to hang out for a while. I came prepared, with a magazine tucked into the back wheelchair pocket. It is difficult for me to reach because of my shoulder problems, but I manage it.
The person I’m picking up is surprised to see me in a wheelchair. I explain about the BIID. Doesn’t seem to be a problem. I’ve just been springing this on a lot of people I know. I think my friends expect me to be a bit crazy anyway because of all the OCD (obsessive-compulsive disorder) behaviours they’ve seen from me.
Now I have someone to help me back into the car. I transfer as plausibly as I can muster, and he stows the wheelchair in the back for me. I’m glad I chose something easy for my first wheelchair outing. Mission accomplished.
July 6th
I am alone in the evening, quietly sitting in the wheelchair, next to my partner’s side of the bed. I start crying. I knew this was an inevitable moment. (I just started crying again as I am writing this). At first I am crying because I miss my partner. She has only been gone two days but I miss her constant emotional support, for BIID and everything else. I wonder how she is doing. I know she misses me too.
Gradually my attention shifts to the wheelchair, and my emotions about that. I keep on crying. I relax into the wheelchair, letting it become part of me, feeling the joy of being at one with it. I am happy right now. This feeling is very different from sitting in a wheelchair at a hospital. This one belongs to me. It is mine.
Then I start feeling some regret that it has taken me such a long time to get here. Why couldn’t I have done this thirty years ago? I reassure myself that things just happen when the time is right, and late is better than never. I am still crying.
The seriousness of the situation begins to hit home. This was an irreversible step. I shall never be quite the same person I was pre-wheelchair. I am a person who has a wheelchair. I shall always be a person who has a wheelchair. I am scared about where this is leading. I like crying, so I keep on going until I am done.
July 20th
The dream: I am wheeling through some automatic doors into a brightly lit lobby area. There are some elevators to the left, a group of people standing on the right. Straight ahead of me is a large heavy door. A woman from the group of people pushes the door open for me to go through. I smile and wheel through into an unfinished concrete area, dimly lit with bare bulbs, a huge flight of stairs spiralling down ahead of me; and the door slams shut. I am alone. The door does not open from this side. It is very quiet. The area is soundproofed. Nobody would hear me call for help. There is only one way to go; down the stairs leading to an unseen destination. I am unable to get out of the chair and walk down the stairs because I am paralysed. I have no choice. I wheel over so that the castors are right on the lip of the first step. This is going to be a bumpy ride…
That’s where I woke up. Some dreams seem like meaningless nonsense. This one was an exact representation of where I am in my life. There is no going back. The door behind me has slammed shut forever. I have no choice. This is going to be a bumpy ride…
I transferred, and let the new wheelchair smell envelop me with it’s comfort. I looked over to where my partner still lay sleeping; and I started crying.
Thank you Sean, for your encouragement and being there for me. Thank you Claire, for your inspirational writing; for writing And the Universe Shifted, which inspired me both to get the chair, and to write about it.
Tags: BIID, Braces, Leg, Paralysis, Wheelchair
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7 Comments
Ditto what Claire said. This was a very riveting read.
Inaccessible housing is such a big deal for me too; I remember discovering how inaccessible my house is (even though it was only built in 1994). You don’t really realize it until you’re in a wheelchair.
I can totally relate to the other people in wheelchairs acknowledging you too. I wrote that to my friend the other day (the one “real-life” friend who knows about my BIID). It’s as if there’s an invisible pact among wheelchair users. ABs don’t give us as much as a second glance, but wheelchair users tend to nod to each other or something as we pass by. It reminds me of how bus drivers wave to each other if they’re driving opposite directions on a bus route. (Well, bus drivers do that here in Vancouver, at least.) I find that a bit fascinating; I’ll probably write a post about this at The Wheelchair Zone or here, or both.
‘July 6th’ sounds quite similar to a day not too long ago for me. I found myself alone, and in the solitary silence, thinking about myself. I make a poor avenue of support for myself; the person with whom I’m in a relationship with is a great support - and I, too, found myself (hard as a guy to admit this) crying at the lack of her presence, because she made everything seem valid…while I had ignored my own thoughts and haven’t taken time to really accrpt it (BIID), myself.
I had a similar experience comparable to the last part of the ‘July 6th’ as well, except that I experienced it from a ‘native’ standpoint (I’m naturally a paraplegic)…when left to my own thoughts I can feel like I’m all alone as well…
…stairs are certainly bumpy…but you all make it a little more smooth for me by turning it into an escalator, and hope we can collectively do the same for you, Chloe.
4 On 7 August, 2008, Sean said:
Thanks for sharing that Chloe. It is indeed amazing how similar these experiences can be. We’re all different, yet, there’s so much in common.
As to why you haven’t done this 30 years ago, simple: You weren’t ready. But, just ask Claire, it’s likely to snowball from here ;)
Gordo, I do think the social dynamics of PWD is very interesting, and also quite complex.
Yesterday I had a very long day in leg braces, which became the starting point of many social interactions with strangers. We went out to lunch, then to an opera, then visiting with a friend, then out to dinner.
The nicest interaction was after the opera. We were slowly crossing the street when another opera patron whizzed by in her motorised wheelchair. She waited to cross the other street and greeted me with a broad inviting grin when we caught up to her. I said “You’re faster than I am”. She said “Did you have polio?”. She’d had polio; we had a nice chat until the lights changed.
All sorts of comments from ABs: “You’re doing very well”; “What did you do?”; “My grandson just got braces”. My favorite was from our friend’s neighbour’s kid: “Why does she have those?” (gotta love kids). I fielded the question even though it was not addressed to me.
This was all in a relatively small town. It was a much more pleasant experience than going to a movie theatre in the big city. There I get stared at as if leg braces mark me as being an alien from another planet. Is there something about small towns, or is there something about movie theatres? I don’t know.
Dante, yes you do all make the ride less bumpy for me. Thank you everyone for that.
That is quite remarkable, out in public a few days after receiving your wheelchair. I wonder how much “stuff” accumulates dust and rust before it is used?
You know what? Two days before I saw Quid pro Quo and became aware of BIID, I had a dream which I’d call the opposite of yours…
I dreamt I was wheeling down a road to the village where I originally come from. I realised I “finally” sat in a wheelchair and felt georgeous. Then I came to a point where the road ended, there was a house in the middle of the road, you could refresh yourself there. I could only go on by passing stairs which led to a higher level. I knew I could just get up and walk and carry my chair, but there was somebody else in the house and I wondered whether I could ask him for help. Which I did after some hesitation and he said he could help me. He was very strong, and I recognised him. He was a guy from the ballerina film I wrote about, the man who encouraged the girl the most that she should dance again and not give up.
He drank some water and as I waited for him, I woke up.
This is full of symbols to me and I believe it wasn’t an accident that I dreamt it.
I am still wondering how the dream would have ended, but for some reason I think he would have talked to me and helped me to get out of the wheelchair and use my feet again… because he was that guy from the film.
I wish I would dream the end, though. I’ve often had dreams which were like a series you watch in tv… so I still hope I’ll see the end. I don’t know about the symbol of my home yet, though…
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1 On 7 August, 2008, Claire said:
Chloe thank you for that. It’s amazing how we all seem to have the same basic reaction to our first chair. I really admire you for your bravery and honesty telling people up-front about BIID.