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Home / Thoughts / Other's Thoughts / Chloe's Thoughts / Heavy Metal: Part 4

Heavy Metal: Part 4

Written by Chloe on Saturday, October 11, 2008

The final installment about the two week road trip from which my partner and I just returned: I’m getting very comfortable about knowing when to use leg braces or wheelchair or both.

DAY 11

My partner wants another quiet day in the motel room. We talk a great deal. We are good at this together. She brings up various BIID stuff; like strategies to get the lawn mowed since I am now disabled.

In the evening I go out to dinner with one of my close friends. She has been one of the most supportive of all the people I’ve told about my BIID. She really seems to understand what it is like. She is an MtF transsexual. She has complete comprehension of the analogy. We have a very nice long dinner together.

After dinner I go to the restroom. My chair won’t fit through the door. It is completely inaccessible. HA! Somehow I get a kick out of this. I could in fact use the restroom since I am wearing leg braces, and I am thus able to get out of the chair. I decide not to. I figure that way it sends a stronger message to the restaurant manager that they need to change things.

As we prepare to part, my friend hangs out and watches while I do the wheelchair to car transfer. This is a somewhat complex process, with a precise sequence optimised through trial and error. My friend attempts to help, without asking, thereby screwing things up. I give her a gentle education about offering help to people with disabilities.

DAY 12

After taking a shower I stand up naked in front of the full length mirror. I don’t like the marks my back brace leaves on my body, but it has to be tight in order to be effective. I think I’m losing the sense of necessity for appearing hot and sexy whenever I am presenting as disabled. Today I’ll wear the back brace underneath a full coverage top. I’m comfortable just being my normal, somewhat frumpy, self. I’ll save "hot and sexy" for special occasions.

We go to the breakfast buffet at the motel. I note that EVERYTHING would have been out of reach from the wheelchair. There are advantages to wearing leg braces. I don’t even notice if people are looking at my braces at breakfast. It is so not a big deal.

As I check out of the motel, the manager on duty asks what happened to my legs. He and I have been engaging in small talk for a week, so I don’t mind answering. It is only on those rare occasions when strangers ask soon after meeting that I find it rude and obnoxious.

After the day’s drive I check us into the next hotel; another nice bathroom, with four transfer rails in the shower. I tell my partner about the bad fibromyalgia that has developed in my upper left arm. She says that it’s no problem; she will push me to dinner. I am very grateful for that. At the restaurant, off the casino, they get the table ready for us very smoothly. Other wheelchair users have been here before.

We have a nice dinner together. My partner wants dessert, but I don’t. She says that she doesn’t want to keep me waiting around by taking time for dessert. I say that I don’t mind at all because I like being seen in the wheelchair. She asks me why. I tell her that every time someone sees me, it is a validation of my self image. She says that she likes me being in the wheelchair too. I give her a quizzical look. She explains that despite it causing her emotional pain that I am disabled, she feels that it makes her look like a more compassionate and deep person to be seen with me (well, she is compassionate and deep). She says that she especially liked being seen pushing me up the steep carpeted ramp to the restaurant. I liked it too because I could not have handled it in my current condition. We are a team! My partner is excited about pushing me all the way back to the room. I point out our reflection in the full length mirrors close to the elevators, and she pauses. We agree that we like this image. It suits us both.

DAY 13

I remember three of my wheelchair dreams. I note that in my dreams, not only are my legs always paralysed, but they are also lacking in sensation.

After a hot shower, my arm is feeling good enough for me to try wheeling to the Starbucks off the casino for breakfast. My partner wants to stay in the room. On the way I think of Claire’s post "You look so happy". I was jealous of Claire when I read that. I didn’t think that I would be able to do what she was doing. But she was inspirational for me; and here I am wheeling into a Starbucks for the first time! I expect that I shall always think of Claire whenever I wheel into a Starbucks. This is making me cry!

After I return to the room, my partner wants to talk some more about how she liked pushing me yesterday evening. She says that it seems appropriate since I am in fact disabled. I look at her, presuming that she’s talking about my arm. But she says "You are mentally disabled". I find it touching that she wants to push me.

I’m glad I have the leg braces on. It makes it much easier to transfer from the wheelchair to the toilet, with one crutch, without using my left arm. As I’m sitting here trying to start peeing (not easy for me), I look closely at the braces caressing my legs. It seems normal. But surely it is not normal to think that this is normal. How could I ever be a "normal" paraplegic? I will grieve about a lot of things when I become paraplegic. That is normal. But I will also have a sense of arrival. That is not normal.

I go down to the Starbucks again for my afternoon latte. This time I am pointed in the direction of the special table for disabled customers. I had wheeled right past it this morning without noticing. I sit in my chair looking at the sign on the table saying it is for disabled customers. For me it is a validation; but I am wondering if other people have sat here looking at that sign, feeling it as a stab to the heart. I start crying… I think of Claire again. I think about how grateful I am for transabled.org; how much I am comforted by reading about other people dealing with this; how cathartic it is to write all this down; how good it feels to know that I am not alone. I keep on crying…

After coffee I head to the casino. Everything is carpeted. I check the roulette table. I like roulette because it can be a very social game. Neither of the guys at the table look interesting to me, so I decide against it. I have to go back up the long steep carpeted ramp. This was a REALLY bad idea. My entire left arm is exploding in pain.

Back in the room, my partner is asleep. I sit quietly in front of the mirror observing myself. There is a serenity that I have not noticed before. Being in a wheelchair is slowly changing me. I see both happiness and sadness. It makes me happy to get real with myself; to be me. It makes me sad that this is what it takes.

My partner wakes up. She just had another nightmare about her legs getting cut off. Shit! I feel SO guilty about this.

We watch a movie in the evening. My left arm is in agony. I gasp with pain every time it peaks. I talk to my partner about it. I go to pee before bedtime. There is a mirror opposite the toilet. I see nothing but pain.

DAY 14

I suppose this must be Day 14 already. I have been lying awake for five hours, unable to sleep because of the pain. I decide that I might as well get up. This is not an easy task, and a transfer to the wheelchair is out of the question. I push the wheelchair to the desk, sit in it, and start writing my thoughts. I want to cry; not because I am in pain, but because I am very upset about not being able to transfer from bed to the wheelchair. Body functions start to shut down as the levels of pain increase. I am now where the pain levels have gone beyond the point at which it is still possible to cry. The pain has started to creep across my upper back from my left shoulder to my right shoulder. This is one of the things about fibromyalgia that scares the crap out of me. I know how much worse this can get. Both arms can get badly affected at the same time. Then I feel completely helpless, unable to take care of myself. That’s without the paraplegia! I don’t like telling people that I’m in a lot of pain. I have childhood issues about this. Pain makes me irritable. I need to find a place of inner peace. I need to keep my partner informed of everything I can and can’t do. Recently she has been saying that I am her rock. I need to live up to this. I need to be there for her.

I am exhausted. I should try again to get some sleep. I lie on my back, the only position that is not completely agonising. I think of the most comforting thoughts that I can come up with. I imagine that my legs are completely paralysed. I imagine that my legs have absolutely no feeling. I move my right hand over gently to touch my partners arm. I want to move my foot over to touch her too, but I can’t. My leg is already paralysed in my mind. I imagine my genitalia being completely devoid of feeling. I drift off into sleep.

It is light outside. I have been drifting in and out of sleep for three hours. I wonder if most people would think I’m a total freak if they knew that to me the most comforting thought in the world is for there to be absolutely no sensation in my genitalia. I even wonder if the folks who read this at transabled.org will think I’m weird. I’m not going to censor it though. It’s real. Maybe someone else will relate to this, and feel like less of a freak because they are not alone.

With my arm screwed up, I can handle leg braces and crutches better than the wheelchair. Best of all is for my partner to push me though. Off we go to the car for the penultimate part of our road trip. My partner calls me "mechanical girl" as I crutch to the passenger seat. I must look like half robot.

At the next hotel room my partner says "Oh, Chloe, you’re going to love this shower; it’s the most accessible yet". She pushes me so that I can see. Awesome! One can wheel right into the shower, and easily transfer to the built in shower seat.

My partner pushes me to dinner. It feels a lot different from when strangers push. It feels like a manifestation of the close bond between us.

A woman and her husband are seated at a table close to us. She asks me what I ordered since it looks so good. I had ordered what I could eat with one hand. My partner is noticing that she seems to be taking an interest in me. After they are finished, the woman comes over to our table to talk to us. She says "It’s great to see you two ladies so nicely dressed, elegant, and well mannered. I hope my daughter will be like you". I say "Thank you. It’s so sweet of you to say that". Later on in the room my partner says "I think she was really impressed with you being in a wheelchair, showing such class and dignity, and acting like a lady". Yeah, I can handle compliments!

After dinner we head to the casino. My partner plays the slots and wins three dollars first time. She quits while she’s ahead. Then we go to the roulette table for my turn. There are no available spaces to sit. Oh well. As my partner pushes me back to the room she tells me about a casino employee who was checking me out big time; trying to get optimal views of my braces and wheelchair. I hadn’t noticed; sounds like a devotee.

Back in the room, my partner wants to talk about fashion, her favorite subject. She thinks I should wear above knee skirts most of the time, to flatter my body type. She thinks I shouldn’t worry about showing a lot more of my leg braces. She says they are obvious in any case. Maybe she is right. After all, I don’t seem to be at all self conscious about them.

As I am writing these notes, my partner is checking out what movies are available to watch this evening. She says "Check this out". I look up, and am astonished to see "Quid Pro Quo". We both agree that it might be too intense for her right now. We have both understood that she can go into overload about BIID. She says she will order it when we get home.

DAY 15

My arm is quite a bit better this morning, although the pain did wake me up several times last night. It has made a HUGE difference having someone to push me the last couple of days. I feel that I can handle the bathroom by myself.

This is the first washbasin I have come across where I can wheel all the way underneath with my feet touching the wall. It should be really easy to brush my teeth. Argh! My ultra sensitive breasts bash up against the edge of the basin! ("Umm, thanks for sharing, Chloe!" Well, I’m just trying to be honest with all my experiences).

My partner says she used the shower seat. I give her a funny look. I’m not sure why one would do that if one didn’t have to. I remove the left armrest and wheel into the shower. The transfer to the shower seat is easy. I push the wheelchair back and enjoy. This is easily the most accessible shower I have been in.

Back in our home town we stop to buy groceries. We go to our designated leg brace/wheelchair store. I don’t want to give the impression that I am the recipient of too many miracles.

We unpack. This is easier for me in leg braces. Then I sit in the wheelchair, take off the braces, and settle comfortably for the evening. It feels good to be home. It feels good to be me.

Tags: Accessible, Back Brace, BIID, Claire, Crutches, Disabled, Leg Braces, Pain, Paraplegia, Wheelchair