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KAFO to Work
Written by Chloe on Saturday, May 2, 2009
It had been in my mind for quite some time that in due course I would switch from using a crutch at work to wearing a left KAFO. Now that I had good shoes attached to my KAFOs, with an identical unattached pair, everything was ready to go.
Prelude
The purpose of making this switch is to provide better treatment for my BIID. Everything would still be consistent with what I’ve told people at work, which is that there is nothing wrong with my right leg. Incidentally, the fact that there is some actual nerve damage to only my left leg is pure coincidence. It has always been my left leg that I have felt a greater need to be non functional.
Chloe’s KAFO peeking out of skirt.
First, I wanted to make sure there were no unforseen problems, so I wore just the left KAFO at home on the weekend for an entire day. It went very well. There were no practical problems whatsoever; no need for a crutch. Moreover, it gave me a VERY good feeling, regardless of whether I was in or out of the wheelchair. This was my first time ever to use one KAFO by itself. My partner said it looked very natural for me.
At the end of the day I was MUCH happier with the psychological benefit of using just one KAFO than I thought I was going to be. So far so good.
Getting Ready
I wake up excited; too excited to go back to sleep. A glance at the clock; early, but not too early to get up. I stare at my wheelchair next to the bed; not thinking anything in particular, just staring. My partner stirs; I kiss her cheek and her hand. She smiles and goes back to sleep.
I transfer to the wheelchair. Must have done this hundreds of times by now. Nobody’s watching; it’s just for myself. At least I can start the day thinking I am paraplegic. Usual morning routine: wheel into the bathroom; take off my wrist brace; take off my neck brace; take out my retainers; cheat with the transfer to the toilet; pull down my diaper; pee; pull it back up. I have the feeling that I’m a bit crazy… I mean: wheelchairs, diapers, what the heck! I’m comforted by the idea that people reading this are just as crazy. Right??
Usual breakfast: crazy pills, vitamins, other pills, crackers, coffee. Everything is within reach except for the coffee mugs. I use my grabber to get one. Then I hang the grabber back on the screw my partner put in the wall, just for that purpose.
The weather forecast says partly sunny, with the possibility of thundershowers in the afternoon. Don’t think I’ll bring a jacket, just a sweater. I’ll wear my long denim skirt. Next question: what to wear underneath the leg brace? I opt for opaque navy blue hose.
Why am I so nervous to put on the leg brace? I have been out countless times with both leg braces. But they’ve been seen mostly by friends or strangers. Somehow that seems easier than all the acquaintances I have at work. The other thing is the sense of the irreversibility of this step. Once I have worn the leg brace all of today, it will be like this EVERY work day.
I put on the brace slowly and deliberately. Then the rest of my ensemble. I decide to forgo the wrist brace. It’s feeling significantly better. I’m still nervous. I check it all out in the full length mirror. I know this isn’t most people’s idea of a fashion statement. Whatever. Before I head out, my partner comments on how good I look; that the leg brace suits me a lot better than a crutch.
Off to Work
My first errand of the day is at the orthotist, to pay the bill. The amount seemed correct, but the mechanics of how to pay was confusing me. I figured it would be much easier just to stop in on the way to work. Plenty of disability parking spots; nobody else using one; no brainer.
I had told the orthotist that I can get around for short distances with just the left leg brace and two crutches. However, there is a steep ramp down from the parking lot. My experience is that ramps are easier in a wheelchair than they are in leg braces. I transfer to the wheelchair. Everything goes smoothly. She asks how the leg braces are working for me. I say they are great! She says I can come back any time to see the orthotist if I need adjustments.
Next stop is the university bookstore, also on my way to work. The computer service department there has had my computer for the last ten days to fix it. If cars were as unreliable as computers nobody would ever buy one. We’d all be using wheelchairs instead.
Plenty of disability parking spots; nobody else using one; no brainer. I transfer to the wheelchair. It seems that wearing a leg brace is not likely either to increase or decrease my wheelchair use.
I use a regular parking spot at work. It seems weird to get out of the car and walk to the main entrance without a crutch. I have a sudden urge to run away and hide. But I can’t run and I have nowhere to hide.
My office is in the furthest corner of the building away from the entrance, so I have a maze of corridors to negotiate. I smile and greet the usual people. Nobody gives any indication they have noticed the switch from crutch to leg brace.
After fiddling with my computer for a while, it’s time for the cafeteria to open for lunch. Might as well get this over with. Usual smiles and greetings to people in the corridors and in the lunch line. Nobody comments on the brace. Good! Sometimes we can build something up in our minds to be a big deal when actually it isn’t. It’s just a question of doing it with confidence.
The computer still isn’t working. The story is very long and extraordinarily boring. Suffice it to say that in order to get closer to a solution I need to walk all over the hospital a LOT. I suppose I could have done it by phone, but it can get very frustrating for me trying to understand complicated stuff. This was a great deal more walking than I was anticipating today. My right heel is starting to feel like a blister is coming. No issues with the braced leg though. People give me an occasional glance to where the brace is visible below the skirt. No big deal. No problem.
Today happens to be the first day for treatment of patients in the newly constructed ECT unit that is now part of the wing where my office is. On my last return from wanderings around the hospital, strains of Bach are floating out of the open door of the recovery room. I immediately start crying. How can I not wonder what sad story has brought a person to this?
Later in the afternoon my laboratory assistant comes in to do some stuff. I’m sitting at my desk, legs not visible, so nothing to see. His arrival brings into my consciousness that I’ve actually been doing quite a bit of work; carefully figuring out some details of metabolic processes I am interested in. It really hit me. I have been able to focus on work MUCH better than in a very long time. I’m not constantly distracted with intrusive BIID thoughts. Wow! It seems like a leg brace is a huge improvement over a crutch for treating BIID.
There’s an interesting point with this. Sometimes people come up with the idea that we’re just trying to get attention or something. But anyone coming into my office would previously have seen the crutch leant against my desk. Someone coming into my office now would not see my leg brace hidden under the desk. The benefit to me is direct. It’s NOT about what other people are seeing.
Soon after I return home my partner points out to me that there is a rip in the back of my skirt. I suppose it must have had something to do with my leg brace, but I have no clue how it happened. Guess I still need to figure out some practical issues.
Day 2
A couple of very slight modifications to the system today. Some tape over my right heel, since my computer is not yet fixed. A little WD40 to the knee locking mechanism. It’s smooth, but a little smoother would be even better.
Today’s outfit: pink T-shirt with a long dark grey skirt and matching jacket; dark grey patterned knee socks. I like this better than yesterday’s ensemble. It’s a better match with the brace and shoes, and the skirt is a little longer.
Not even the remotest hint of nervousness today. Wearing a left leg brace has already simply become what I normally do on a daily basis. Nothing to worry about. Nothing to be self-conscious about. Funny how the thought of doing this a year ago would have massively freaked me out.
I saw a bunch more people at work today, and chatted. Nobody said anything at all about the switch from crutch to brace. Maybe they didn’t even notice? Wow! This is SO much easier than I thought it was going to be.
Afterthought
These are just my first impressions, but it looks like wearing a left KAFO to work is much better for me than one might have imagined. Firstly the impact on social situations at work appears to be close to zero.
Most importantly this is of far greater psychological benefit than using a crutch to work. No, it’s not a permanent solution, but it definitely feels like an effective temporary fix. It also leaves me somewhere to go if things get bad. I can wheel to work.
No, this doesn’t take away my desire for actual paralysis. However, in terms of treating my BIID by means of presentation, it is pretty good.
Tags: BIID, Crutch, Diapers, Disability, KAFO, Leg Brace, Neck Brace, Orthotist, Wheelchair, Wrist Brace
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12 Comments
At the end of the work week, as I write this little update, four co-workers have conversed with me about my leg brace. The first person commented that I looked much more comfortable with the leg brace than I did with a crutch. I had to agree with her! The other conversations were just as easy and amiable. Nobody asked for a reason. Presumably six months with a crutch makes it seem reasonable.
Another awesome step. I love my braces. I have ball catches on the drop locks, so I can choose to lock them. When I lock them more, people make lots more comments, so I guess my experience is quite a bit different.
One hint. Stay away from WD-40, 4-in-1, 5-in-1, and other lightweight oils. They are poor lubricants and will encourage galling (ie. they will cause damage over time by turning the worn bits into an abrasive). Try a liberal amount of lithium grease on any joints and mechanisms instead. Then wipe the excess off, so it doesn’t get on your clothes.
If the uprights get goobered up from constant daily wear, you can even use vinegar and water to clean them, and then use a tiny film of light oil to protect them again.
Love the diaper part, too - very close to my own heart. Are you always dry in the morning? It’s easier, and IMO more authentic, to change on the bed than make a questionable transfer to the toilet. Not for everyone, tho.
Thanks for the tips, Lane. I have bail locks, so they always lock automatically any time the leg is straightened. I’ve been practicing a technique of using the edge of a chair to disengage the lock when I sit down.
Thanks for the embarrassing question, Lane! ;o)
On the particular morning I referred to, my diaper was wet. However, it was not because I peed myself in the night (that I’m aware of). I had been skiing the previous day, while wearing a super duper extra heavy duty reusable diaper. The most frequent time I pee myself by accident is while skiing, and not just because I sometimes piss myself with sheer fright. I had in fact peed myself by accident that day, though the quantity was not great. I decided just to keep the same diaper on that night. Almost all of my accidents are in the daytime. A diaper at night is massive overkill. It just feels right.
How’s that for TMI?
i re-read your post and noticed the thing about needing your left-leg to be nonfunctional more than your right one. i’m like that too, except that it’s my right leg. and i’m guessing that the fact that my right leg is shorter than my left one is a coincidence, although i can’t be sure of that…
Just to add to the confusion, I need my right leg to be nonfunctional and my left not so much, but my left is shorter than my right though not dramatically, a half-inch or so.
Not TMI at all IMO. For those with para desires, incontinence issues (of various sorts) with naturally flow from the neurological ones that will be required to achieve the paralysis. I see this as a plus.
Wearing a diaper to bed does feel great. I always sleep better and it is very convenient as well. I look at it as BIID-friendly nighttime “hardware” - even though it’s really “software”. I guess you do have other hardware anyway.
This is yet another topic I should write about, I guess - if I EVER get in the right mental space. How do you TA-ers find the time?
As I’ve said in another context, diapering or using a cath has never had the least appeal for me, but I have for years used a urinal bottle at night rather than walk to the bathroom, which I’m sure, at this stage of my life, is a by-product of the BIID thing.
@Lane, I would be inclined to call what we suffer a “need” not a “desire.”
Yeah, I need my left leg to be less functional than my right. I also have arthritis in my left ankle because of an old injury, and my left hip gives me problems, so I don’t know if that has any affect, but I just thought I’d weigh in also :)
Today was one of those rare days when I actually don a lab coat and rubber gloves to work in the laboratory. It was absolutely no problem with the KAFO, unlike the crutch which was a bitch. Seems like a wheelchair would work okay as long as the logistics were well planned.
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1 On 2 May, 2009, Tora said:
no, it’s definitely NOT about what other people are seeing. i agree completely. i’ve worn bandages to school twice (asked to go to the bathroom and put them on at school… haven’t done that for awhile because i get really nervous and it takes awhile to put them on while keeping my foot above the gap between the stall walls and the floor) and both times wore jeans, knee length socks, and shoes to hide them. i actually did show one person (but that was lexi and it was just to tell her why i didn’t want to take my shoes off) but i felt sooo awesome all day.