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The Wheelchair as a Vehicle for Change
Written by Chloe on Saturday, November 14, 2009
Last week I had an epiphany while hiking… Yeah, okay, another one of Chloe’s tedious hiking stories: she gets to a point of pain and exhaustion where she just wants to stop, and then she takes the next step and isn’t it a wonderful metaphor for life and blah blah blah blah. Why would you want to hear about Chloe’s hike number five thousand four hundred and twenty seven? Dunno. Let’s talk about wheelchairs instead:
I’m not a full time wheelchair user. I don’t need to be. Wait! Chloe says she’s supposed to be paraplegic. What if that entails being a full time wheelchair user? Well, I’m just fine with that. My preference would be to have the option of using leg braces, but if it doesn’t work out that way it’s okay.
I’m not using a wheelchair to treat paraplegia; I’m using it to treat BIID. There is a difference. I don’t feel a need to pretend to myself that I’m paraplegic. I know that I’m not paraplegic.
In terms of managing BIID with the use of assistive devices there has never been a point where I had felt it was enough; until quite recently. This needs clarification. It is NOT enough in terms of actual paralysis. However, a left KAFO and a wheelchair IS enough as far as my presentation goes.
Why not throw in a right KAFO for good measure? I already have one after all. Well, my BIID is asymmetric. Wearing a left KAFO while in the wheelchair satisfies the presentation aspects of both the paraplegia craving and the need for asymmetry. Two KAFOs and a wheelchair is actually LESS satisfactory.
How do I reconcile the self image of paraplegia with the need for asymmetry? I can’t. It’s just what my brain is telling me. I simply accept that it’s not logically consistent. Why would it bother me anyway? Try telling me that wanting to be paralysed is logical in the first place!
So… Four months of using a left KAFO and a wheelchair a large majority of the time on a large majority of days. It is as far as I can go with this modality of treatment. Throwing in more accessories or further increasing the proportion of time simply isn’t going to help. All I can say is that you know when you get there. A distinct threshold is crossed and you can feel the difference.
I had discussed the idea with Sean at some length before I became a majority time wheelchair user. It was truly not obvious to me how I would benefit from this, nor how long the benefits would last. Sean (correct me if I’m wrong) predicted that I might get around three years of relative peace with wheelchair treatment before the sense of desperation sets in again. I have no reason to doubt his estimation. He was far more accurate than I in predicting when I would start wheeling at work all the time. I also have no reason to delay in those three years to see if Sean is right. If paralysis happens tomorrow, so much the better.
Relative peace… The wheelchair doesn’t make the BIID go away, but it is easily the best treatment that I have tried so far. It’s a bit like Prozac and depression.
Some things about wheelchair treatment were entirely non-obvious to me. This is just my personal experience. I would be interested to know if it is like this for others. The relationship between amount of benefit and amount of wheelchair use is massively non-linear. There is a huge increase in benefit when the proportion of time spent in the wheelchair passes a certain threshold. Changes below the threshold, or changes above the threshold, make relatively little difference. Perhaps the threshold is different for different people? Perhaps this model does not apply to others?
Another thing that surprised me about using a wheelchair is the cumulative effect; again, a bit like Prozac. In the first weeks I got a bit distracted by the novelty. This wears off. Only then did the gradually increasing impact on BIID begin to show.
<strong>The Epiphany</strong>
Surely you didn’t think you’d escape the hiking story?
I started crying on the hike… "So what!", I hear you say. Chloe always cries when she hikes doesn’t she? Well, she used to; not any more; not for quite a while; not until last time.
I had seen it coming. I was already there at a cognitive level, but I hadn’t felt it yet. "It" was complete forgiveness and compassion for my parents. I didn’t want to force this. I figured the time would come when I was ready. It came. To be sure, I already understood; I understood their traumas, the ones they had so carefully tried to hide; I understood their emotional wounds which would not heal; I understood the projection of their fears onto me. "Understanding" is not the same as "feeling"; hence the tears. I blame my parents for nothing. Anger is replaced by loving compassion. You know deep down when a psychological shift like this is real, and is not imposed by one’s will.
What does this have to do with my wheelchair?
As I trudged through the snow up to the ridge, I contemplated the timing of my epiphany, which was so long in coming. The wheelchair. Yes; my wheelchair is a tool for psychological growth. What has changed is the sledgehammer trying to bash my head in. To be sure, there is polite knocking at the door; knocking which I expect to get louder. However, I have now been granted some brainspace. There is more to life than BIID. There is forgiveness of one’s parents. There is compassion felt from the heart for those who seem to have caused one pain. And there is more…
The wheelchair has given me a window of opportunity for change. I saw my psychotherapist yesterday, and I told him about my epiphany. He was very excited that I had come to this change in the way I see my parents. We discussed at length the complex set of factors which had got me here. Among these, he totally understood the important role that my wheelchair has been playing.
Tags: BIID, Blah, KAFO, Leg Braces, Pain, Paralysis, Paraplegia, Presentation, Wheelchair
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5 Comments
This reminds me of an older woman I observed on 2 occaision about 20 years back. She walked along using a single under arm crutch, motioning in back and forth to match her stride, but the crutch never touched the ground. I could not figure this out until now, I think.
Chloe: why the wheelchair at work but not on the hiking trail?
I agree. Wheelchairs are very therapeutic. At least in our cases.
@Ronald: A large majority of my time at work is spent sitting at my desk. There is no downside to me spending this time in a wheelchair. However, there IS a downside to strenuous exercise in my wheelchair in that it is detrimental to my physical disability.
Chloe, I want to thank you for this post.
This sentence hit home with me in a big way :
You know deep down when a psychological shift like this is real, and is not imposed by one’s will.
I had a truly awful relationship with my sister, and I blamed her, amongst other things, for my depression, self-harm and self-destruction. On her wedding day, I saw her with her husband, so in love, and with her beautiful child and something in me shifted. And at that moment I forgave everything and truly loved her again.
Thank you, so much, for sharing your experience and validating mine. xxx
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1 On 14 November, 2009, Ada said:
Thanks for this post Chloe! :)
I feel I need to read it again or twice more to comment further. But I will :)