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Full-Time Becomes A Reality
Written by Peter on Monday, June 7, 2010
Relocation is Monday. But even before we moved, I had now completed 18 days (the past 10 consecutive) of full-time bracing/wheeling.
Every aspect of pretending is going very well. The technical problems with the brace have been resolved, the friends that I’m out to are being very supportive and other friends have had ‘the extremely poor prognosis of a rare genetic, neuro disorder that is quickly leading to the loss of use of the left arm and leg’.
Above all, Hubby is going along with the whole thing even though he did not want to lie. I allayed his fears by explaining that it was not exactly lying, just gross exageration.
So, for the third time today I arrived at our new home with a paralysed leg. I’ve visited all the shops and restaurants (very quickly done, there are only 1600 inhabitants!) and I have left an impression – not only because of the disability but the fact that I appear to be the only english-speaker in the town!
Of course, now it’s the world upside-down. Instead of worrying about being caught pretending, I have to worry about being seen AB.
Just one observation on full-time bracing. I was surprised just how quickly the brain forgets totally that the leg still has useable muscle. Twice in the past 10 days I thought fit to unlock the knee joints. I simply collapsed! There was no reflex response to kick the muscles back into action. But that’s partly due to an attentive husband who got very angry when one day I dared walk to the bathroom unaided. There is to be absolutely no cheating now, even in private.
True happiness will come after surgery, but this sure is a very close second.
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5 Comments
Ha ha! Yes, better not get caught pretending to be AB. I already decided that in the unlikely event of meeting someone I know while hiking, I really will tell them it’s a miracle.
And more like the reality of many mobility-impaired people — across a room unaided, short distances with a cane, maybe longer with crutches, chair for really substantial locomotion. It’s not totally black and white for many, e.g. totally paraplegic or nothing.
Hiya Peter. Congrats on the almost 20 days. As soon as Im finished teaching my last acting and voice class next week, I am going to start full time. Alot like you and Gordo I’m going to be using something all the time, whether chair or sticks. I have mild tourette’s syndrome so I’m just going to use that as my “reason.” I do often wonder if my OCD plays on my BIID, which I do think are related, but not. I do have a mild leg shaking tic, which in my chair just looks like a spasm, but out just looks like quick kicks. It’ll be pretty easy for me to transition if you will, execpt for the fact that… Ultimately my own goal is to be a DBK/LBE, but thats going to be along time in the making I think. However I hope that I can use the ts in my explanation of why I had to have my legs amputated. I’m gonna have to do more on muscle and never damage in order to explain that one. Sorry to babble about myself, but I’m having a pretty crappy biid day. It’s freaking awesome outside, so I’m probably gonna go wheel and have a beer somewhere. However, again 18 days is awesome and I wanted to drop a congrats! Hope to chat more soon, Gee
Here’s the latest update. We’re now coming up on 1 month of full-time pretending (3 weeks consecutive). The loss of muscle mass is impressive even though there have been lots of little cheats along the way.
I wear the brace from morning to night but I occasionally crutch for short trips around the house. For really long trips outside, I use the chair.
The difference in circumference between right and left is an average of 4cm mid-thigh and calf. It tends to vary on a daily basis probably to do with fluids – I am going back to swimming and I’m starting massage sessions to promote circulation. But I can feel the loss of mass just by squeezing the thigh and the calf. They’re all squidgy like soft foam rubber. Very strange but nice!
I will be taking a break from all internet activity starting this Thursday due to the move. But hope to report back with the latest developments near the end of July.
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1 On 7 June, 2010, Sean said:
World upside down – having to hide you’re an AB. The tangled web we weave.
I know that feeling entirely too well. We have no way out, when it’s not one thing, it’s another.
That said, I’m very happy things are working out for you on that front, if not the others…