transabled.org

 

• About
• Login
• Contact
• Accessibility

Google Search:
Web transabled.org Go

 

Home / Thoughts / Other's Thoughts / Chloe's Thoughts / Heavy Metal: Part 3

Heavy Metal: Part 3

Written by Chloe on Tuesday, October 7, 2008

Almost half way through our road trip: It has felt SO comfortable to be wearing leg braces every day for a week.

DAY 7

We wake up, and my partner rolls over on me for a closer cuddle than usual. She tells me that she has just had her worst ever nightmare. A doctor tied her legs together and made them numb. Then he cut through her ankles with a circular saw. She couldn’t stand (!) to live with stumps instead of feet, so she tried to kill herself. My partner explains to me that she had this dream because of seeing me in a wheelchair so much, and because I talk about being paralysed a lot. I know this is true. I feel guilty about it. I can almost understand the horror of this dream. But it’s not quite the same for me. Amputation of my feet does not sound that terrible to me. After all, if I’m in a wheelchair, what difference does it make?

I tell my partner about my dream. I dreamed that one of the guitarists in the heavy metal band we went to see was wearing leg braces. My partner says about my dream "That’s horrible!". I look at her, somewhat taken aback. She explains to me that most people find leg braces horrifying. Again, I find this quite difficult to grasp. Perhaps this is part of why some people stare? They imagine how horrible it must be to be me.

My partner wonders what it would be like if I was obsessed with rainbows and love, instead of with BIID; if I always wanted to check the "rainbows and love" website. I know my BIID takes quite an emotional toll on her. I feel very guilty about it. She says that she needs a break, and asks me not to talk about BIID today. I agree to this.

We are just staying in the room again today. My preference is always to go hang out with friends. I have a greater need for social interactions than my partner does. No problem; my back is hurting more than usual anyway, so I’ll get to wear the back brace all day without worrying about my vanity issues. I smile at myself in the mirror, naked all day again except for leg braces and back brace. I sure have a lot of hardware to help keep my mind and body together.

Later on, my partner has a massive BIID meltdown…

DAY 8

We are going to the wedding of the daughter of my closest work colleague. Since I don’t yet use leg braces or the wheelchair at work, I can’t use them today. There will be quite a few people I know from work. It’s probably good to take a break; I notice that there are bruises on my legs from a week of wearing leg braces. I am wondering how tough it will be on me today, to be able bodied.

One of the guests is a psychology professor with whom I have collaborated on a number of research projects since 1991. I also consider him a friend. For the last several years he has invited me to give a talk to his psychology class, on the psychological consequences of being intersexed. He reminds me that I got rave reviews from his students for my presentation last year. He asks me to do it again in a couple of months. I accept. Each year I feel better able to make myself very vulnerable for this presentation. The more I show my raw emotion, the more the students will get out of it. It is hard to get up in front of 100+ strangers and start crying. It’s alright; it’s a psychology class after all. It is going to be easier on me if I am in a wheelchair. I am trying to remember if the stage is wheelchair accessible. I want to tell my friend about my BIID and ask him about the accessibility. This is not the place to do it though. My primary concern about the presentation is my hearing loss. I had a very hard time understanding the questions last year. They were many, and interesting. I want to do a good job of responding. I had to ask people to repeat themselves a lot. They were too far away for me to lip read well. My partner and I agree that I seem to be more deaf than I was last year. It would probably go more easily if I explained to the audience about my hearing loss, but this is something that I very seldom admit to people. I am embarrassed about it. The wheelchair is going to make this worse. I can’t stand to think that people might pity who I am. A deaf hermaphrodite in a wheelchair just sounds way too pathetic!

At the wedding reception dinner I have a few moments of angst about not being in a wheelchair. It’s not too bad though. I seem to get a day of problem free "afterglow" following a week of being in leg braces and/or wheelchair.

DAY 9

I have a wheelchair anxiety dream. I dreamed I was travelling on the London Underground system. In order to change trains I had to transfer from the wheelchair to a moving conveyor belt, drag the chair as well as all my luggage alongside the conveyor belt, and then transfer back to the chair at the end of the conveyor belt. This was extremely difficult!

I go back to snoozing and have another wheelchair dream: I meet another wheelchair user. We start talking. She tells me that she is in the wheelchair because of BIID. I am very ecstatic to meet someone like me. I give her a big hug and start crying.

My partner wants to hang out in the motel room again today. I don’t. Things are still tense from the BIID meltdown. I head out by myself, taking wheelchair and crutches, without the leg braces.

In the afternoon I stop at the store to buy wine, milk, and cookies; all the essentials one needs for survival. As I leave the store on the crosswalk to get to my car someone almost runs me over. Apparently I am invisible! I veer away diagonally at the last second when I realise he hasn’t seen me. He misses by a foot or two. I can’t stop thinking how wonderful it would be to be run over because I am in a wheelchair, with the result being paraplegia.

Later I go to pick up my fifteen year old from downtown, where he is hanging out with friends. He already knows about the BIID, and is cool with me being in a wheelchair. He, like my partner, sometimes says that I’m insane. I’m not disputing this. We go to see a movie. This is my first time at a movie theater in a wheelchair. There is only one wheelchair spot, all the way in the back. Not my favorite place to sit. Oh well.

Afterwards we go out for Indian food. This is another of those restaurants where one has the impression that nobody has ever seen a wheelchair before. No problem; I give clear directions as to where I can sit, and what needs to be done to make it happen.

DAY 10

This morning I have an appointment with my orthodontist. The braces came off my teeth in 2004. Then I wore retainers full time for two years. Now it’s just at night. I see my orthodontist once a year for him to check that my teeth are still in the right place, and to tighten up the retainers. I decide to go with wheelchair and crutches; no leg braces.

Of course I am asked about the wheelchair. I am careful not to exaggerate too much, and I leave the prognosis open. My orthodontist sometimes skis at the same resort that I go to a lot. Should he see me skiing on both legs, one leg, or sitting down, I want it all to be plausible. He tells me about his friend who skis on one leg, with the other one dangling. I also have seen people do this. I keep very accurately to my actual injury. I say that my right leg is fully weight bearing, and that only my left thigh is affected. This makes my transfer from the wheelchair to the dentist seat, using only one crutch, seem very reasonable. Afterwards I realise that I actually understated my injury in some regards. I have partial sensory loss extending up close to my navel. The female assistants are very encouraging that I’m going to get "better" (ugh!). The orthodontist understands that it’s more likely to get "worse" (yay!). He is as extreme a skier as I am, and knows that I will continue to ski , even at the risk of complete paraplegia, and that I will sitski after that.

My teeth are fine. The orthodontist tightens my upper retainer. I don’t put the retainers back in their containers because I don’t want them to dry up with my spit on them! As I drive back to the motel I enjoy the feeling of the newly tightened retainer pressing on my teeth. I like body hardware. I’m not sure if this has any relation to BIID.

In the afternoon, my partner and I go to the mall to shop for clothes. I’m not wearing leg braces today, but the crutches and wheelchair are in the car. As she parks, we look at each other. Things are still somewhat tense. She knows that I want to be in the wheelchair. I know that she doesn’t want me to be in the wheelchair. We verbalise what we already know. I am on the verge of tears. I’m not sure I can handle clothes shopping if I’m not in a wheelchair. She says it’s alright for me to be in the wheelchair.

My partner wants to select items for me to try on so that I have a fashionable outfit. She is massively into fashion. I am not. I am excited to be shopping for clothes in a wheelchair; another first time. I try on lots of clothes, and everything goes fine. I think it’s weird that the sales assistant keeps asking my partner what I like. Hello, I’m right here! She must think that a wheelchair diminishes one’s mental capacities. After several hours I have a cache of clothes that meet both my and my partner’s approval. My partner has some too. I enjoy being in the store since there are so many mirrors everywhere. I love seeing myself in a wheelchair. I almost get run over again, on the way back to the car.

We drop off our purchases at the motel, and head out to dinner. My partner makes a comment about how nicely accessible the restaurant is. I thank her for thinking of it. I wheel up to the table gracefully. I tell my partner that I feel very guilty for putting her though all this. She says she understands that I need to be in a wheelchair. We both had a wonderful afternoon doing our favorite things together. She got to go shopping. I got to be in a wheelchair. We have a beautiful meal together, enjoying each other’s company and the fabulous Mexican food. After some days of tension between us about BIID, the mood has shifted dramatically. We are closer than ever. I have learnt to be more considerate about shoving BIID stuff down her throat all the time. She has learnt that she can verbalise all her feelings about this, while still being very accepting and supportive.

After we get back to the room, we get naked on the bed and give each other a back massage. She knows to be very careful with me. I ask her if she can feel where I have pain. She says yes. She says she feels it up in my shoulders, from fibromyalgia. She feels it further down, lower on the left side than the right. I never told her about that asymmetry. I am amazed that she can feel it. She puts her hand right on my spine. I think about telling her "Go on, punch it hard. Finish this."… Not today.

Tags: Accessibility, Amputation, Back Brace, BIID, Braces, Crutches, Deaf, Leg Braces, Paraplegia, Wheelchair