Home / Thoughts / Other's Thoughts / Transitions
Transitions
Written by Claire on Wednesday, December 19, 2007
Newsflash: change is difficult.
I haven’t written much on what’s going on with me because I’m still trying to process it. And also because I’m afraid of being found out. The more I write about the details of what I’m doing, the more likely it is that someone who knows me in real life would recognize me in this blog. I worry about that, but that keeps me from sharing my experiences with you.
A few months ago I agonized about whether or not I should go to school in my chair. I finished off that post with this: “I guess it will come down to which is stronger; the fear of exposure and being thought of as weird in some way, or the desire to wheel with the peace and wellbeing that comes with it.”
In the end, wheeling won. There was no contest really. I knew I had to do it. I knew I wanted to do it so badly that I would have forever regretted not taking that opportunity. In all honesty, I knew all along that’s what I was going to do. I was just trying to psych myself up for it, and I needed some moral support. Thanks for that.
I’ve written about the beginning. I went through a hell that I’ve never before experienced in my entire life, and re-reading that blog entry I think I didn’t even begin to accurately convey the level of fear, anxiety, and stress that I lived through. I was so afraid of being seen in my chair by someone who knows I walk, or being seen walking by someone who knows I use a chair, that I was in a near-constant state of alert and near panic. I won’t talk about it here because it was so traumatic that even thinking about it now sends my heart rate up and I start to feel anxious. But that post finished off with this: “My psychologist who is in on all this says that the anxiety will pass as I get accustomed to the situation. I actually feel like once people start to find out that I wheel sometimes (or that I walk sometimes) and come to have some understanding that I have a rare neurological condition (they don’t need to know the exact nature of the condition)…in other words, once there are (mostly) no more secrets…things will be a lot easier.”
That proved to be the case. I found early on that I couldn’t compartmentalize both lives. Keeping them completely separate felt too disjointed, it was too much of a shock going from one to the other. The fear of exposure was overwhelming. And so I slowly began to bring my two lives together. In truth, that process had begun months before I started school, but on a small scale, designed to explain the presence of a wheelchair in my house. It started with a stroke of luck – or fate – where I came down with a real physical condition that affected my mobility somewhat. But the pieces still didn’t fit, it wasn’t enough. Bringing my two lives together involved having to explain to people what my condition is (vastly exaggerating the real physical condition that I have), and I agonized over questions of truth and lies and morality. I finally settled on an explanation that was very close to the truth, without being the entire truth. I had found the “perfect” explanation but then discovered that it was too big of a lie for me to feel comfortable telling. So I settled on a less perfect explanation but one that was close enough to the truth that I felt I could live with. And it also leaves me an “out” if should someday decide that I can no longer go through with this. I didn’t want to paint myself into a corner. It’s not the wheelchair that I am not entirely sure I can live with…it’s the lies and half-truths. The wheelchair, I’ll take, I want more of.
I’m not going to tell you what explanation I came up with. For one, I fear it would make it too easy to recognize me. For another, it’s mine. I did the research, I did the planning, I did the agonizing over it. It’s right for me because I actually "kind of" have the condition, but it might not be right for you. And if suddenly hordes of pretenders start saying that they have X Condition, well, that lessens its effectiveness, doesn’t it?
It’s been a slow process, and has taken planning and patience. I couldn’t just suddenly announce to those who know me as a walker that I have X Condition and that I’m using a wheelchair now sometimes. I had to ease into it gradually. I didn’t announce anything to anyone, but was ready for an answer when questioned. I was questioned, and the answer was for the most part uncomplicated. People accepted it. Over a period of a few months, more and more people know that I have this. I have also found that word tends to get around and people to whom I’ve said nothing already know. My condition’s "worsened" gradually. And when one day I showed up at my daughter’s soccer game in a wheelchair, no one was terribly surprised, no one asked any questions, and I only got one or two kindly comments ("Hey, Claire’s got the best seat in the house!"). Nor are acquaintances totally shocked when they see me in my chair at school or around the town where my school is.
This process of merging my double life into one has done a lot to calm my anxiety. I feel more calm, more in control of the situation. I feel safer. No, it will never be perfect, because in the end, I don’t really have X Condition, and can’t ever dot all my I’s and cross all my T’s. But it’s the best that I can do. You might wonder (because I have) if that’s actually easier than just giving up pretending. Honestly, I don’t know sometimes.
I have immensely complicated my life. It’ll never be perfect. I’m an inherently honest person, the kind who will sometimes tell you more about my personal life than you really wanted to know. Having to hide the truth and mislead people – even when avoiding outright lies – hurts, and is difficult, and makes me uncomfortable. But it’s vastly preferable to the constant calling of BIID in my head, the longing, the unfulfilled desire, the incessant daydreams. Now at least, when I’m in my chair, all this is for the most part stilled. I feel normal in my chair. I am happy in my chair. I never long for my legs to be paralyzed when I’m out wheeling. Now that only happens when I’m walking, or sitting in my office in my chair not going anywhere. When I’m out wheeling, I’m not mentally ill anymore.
I see it as a process. The more I integrate it into my daily life, the more that time passes and people around me learn that I use my chair, or that I can walk, the easier it gets.
[tags]Pretending, Pretenders, Wheelchair, BIID, Transabled, Lies[/tags]This entry appears in Claire's Thoughts, Other's Thoughts, Thoughts. You can follow any responses to this entry through the RSS 2.0 feed.
You can skip to the end and leave a response. Pinging is currently not allowed.
3 Comments
You have complicated your life and calmed your life at the same time. Please keep sharing this journey or process, it is fascinating.
Otherwise, I don’t know what to say other than that I am in awe at just how much fortitude it must have required to start a public part of your life in a wheelchair.
Good luck and all the best.
Pardon my envy, Claire. Had I known when I was in my 20s what I know now, I’m sure I would have found my way down the same path. Because of the nature of my career, and family considerations, I have never had the opportunity to integrate the physical expression of my BIID into my everyday life, but over the space of a couple of decades, once I found out in my early 50s that I was not alone in this, I acquired forearm crutches, got my right kafo and left afo from Bob, and engineered a couple of dozen day-trip ventures and a few opportunities to indulge in 3-4 days of the mobility impairment my mind says my body should have. Even previous to that I had occasional forays swinging through on crutches when the lid could no longer be kept on the emotional cauldron. My huge fear always was, and would be if I venture again, the possibility of running into someone who would recognize me, since coming out would render my career kaput. Other than that, experience quickly showed me that strangers won’t probe about the nature of your condition, and those that do can be brushed off as the rude bastards they are. My gait is authentic enough that once in a while I’d be asked if I had polio. My reply was always that it’s a rare congenital thing, which is no lie since BIID has been with me for as long as I can remember, which is congenital enough as far as I’m concerned. Wheel on, Claire, and keep us posted.
Post your comments
© transabled.org - 1994-2010 - All Rights Reserved.
1 On 21 December, 2007, Wheelman said:
See Claire, I told you it would get easier the more you wheeled and got out there and the more you shared yourself with others and let go of the “what ifs” as you are seeing most people really don’t care too much about other people so they really don’t care to question the chair, the ones that do are concerned yes, but as long as they see your fine with it they normally are, and the ones that you come plan out truth too in the future, will only understand you much better than you ever expected them too, most of them anyway.
-Wheelman