Wednesday, May 24, 2006

emotional fodder, round one

So let me give one of these emotional topics a whirl.
I'll start with an easy one.
And let us all cross our fingers and hope it makes some sense.
Or at the very least, maybe it makes no sense, but it clears up the blogging block I'm having.
If it works for all of us, I'll consider continuing....

Last week I wrote something very honest about myself in relation to being an amputee, how I am accessorizing my wardrobe as part of my healing process, the admission that I have a closet full of unworn shoes, and the gift of gorgeous sock yarns.

The very next day after writing that post, I went to my prosthetist's office for a new socket (the socket is the part that fits on your residual limb--in my case, my thigh).

I walked into his office wearing a leg with entirely blue and silver leg hardware, plus pink high tops (hence all of the effort by GoKnitInYourHat/BlackBunnyFibers and StrangeLittleMama to gift me with matching sock yarn).

I took off my prosthesis, the prosthetist took it back into the shop, and then brought it back out to me looking like this:

See the widgets connecting the socket to the actual mechanical leg below???
They used to be silver.
For some reason, they are now gold and green.

Now, I know this seems minor. And I almost feel ridiculous being so picky.
But it doesn't match.
And it foils my plan.
My plan to try to be more comfortable with the way I look.
My plan to create a wardrobe that is prosthetically functional, AND fashionable/coordinated.

I can't always wear exactly the clothes I want, nor the shoes I want...and, least I should be able to get a color scheme going. The offending widgets are throwing a wrench in things!! The blue-green-gold-silver-pink color combination is ugly to me.

But being shown the bad color combo was not what created the big emotional stuff.

The emotional part was that when I told the prosthetist that I didn't like the green and gold parts, he laughed at me.
I know.
How. Very. Professional.

Ya' know....I could pop him in the mouth, take out a front tooth maybe....and then he can see what it's like to explore options like these. He can leave a gap there, he can get a bridge, he can get a gold tooth with a playboy bunny and a diamond on it, or he can get a a tooth with a porcelain veneer dyed to match his other teeth.

When something like this happens, YOU HAVE A CHOICE ABOUT HOW YOU WANT THE WORLD TO SEE YOU.

Maybe it is important for me to remind you all that I'm still in the stage where I feel prettier, less restricted, and more comfortable with myself when I don't wear the fake leg. I still move more fluidly on crutches or a with wheelchair than I do in a prosthesis at this point. I'm in less discomfort. And my shoes match my outfit.

My prosthetist should NOT be giving me another reason to leave the leg at home propped up in the corner. I'm sorry, but his job is not only to make a leg that fits, but also to understand how prosthetics play into the emotional process of each of his patients. He should not be laughing at them for having preferences (especially given how much these things cost...mine is more than what I put down to buy my home. I kid you not).

And his laughter pushed the same button in me as kids laughing at me on the playground through my entire elementary school experience.

I was angry, and I had made my mind up that before I left the appointment, that the parts were going to be changed to something satisfactory to me, even if meant he had to call and order new parts and I had to come back later...but I didn't want to get too stuck on the widget topic, as I hadn't even gotten so far as to put the leg on yet and check out the new socket. So yes...I told him I was pissed, and that it was unacceptable....but I dropped it and moved on to checking fit (which is far more important, honestly). I warned him I'd be back to the widget issue momentarily.

So I don the leg.
Well, okay. It fits.
This is good!
My last prosthetist had made me a beauuutiful leg.

But it didn't fit. It did make a great vase, obviously. But I couldn't walk with because it fell off me as it didn't address my bizarre fit issues.

This new prosthetist has made me something that fits. It is not beautiful, and that is okay. But it's not even ordinary. It's a step below ordinary. It looks like I stepped out into the shed and made it myself with a glue gun and duct tape (actually this new one is better than the last one...but it still reminds me of a crappy attempt at making a homemade mummy costume for Halloween that you gave up on and slapped some tape on).

But it does fit. And I AM able to walk.

Wouldn't y'all think there is some middle ground here though, people?? *sigh*

So back to the appointment. The leg is on and I walk around his office for awhile (basically in my skivvies) so that he can assess the fit and tinker with the alignment (which actually created another debate...because we disagreed on the aligment...his argument being that the alignment was crappy because my muscles were weak...the same muscles that I walked through the door with 27 minutes earlier...I won that battle and the alignment was fixed...but ummm, why I am battling??).

So I'm parading around on the leg okay, and the consesus is that I take the leg home, walk around on it, see if anything is pinching or rubbing or whatever...and then come back in a couple of weeks. He agrees that at that point we will address the ugly colored widgets, and make any minor adjustments to the socket itself if need be.
Fair enough.

So I put my pants on to go.

And that's when I see this:

The lip of the socket on the inside of my thigh is so flared, it looks like I'm packing.
Or have ambiguous genetalia.
Or something.

And to this I get upset again.
And to this he laughs at me again.
And says he'll addresss it later.


So let's see......I get to walk around like this for weeks??
If I wear pants to cover up the ugly color scheme, I get to look like I have a penis!?!
If I wear a skirt instead, to hide my bulge, I get to feel uncomfortable with the widget thing!?!
And I'm being laughed at???

Somehow I completely ran out of self-advocacy juice at that moment.
I barely made it to my car...and when I got there I just sat and sobbed for a moment.

I honestly don't expect my description of this appointment to make sense in writing, but it just wigged me out. I'm not asking my prosthetist for a leg that looks and feels like a real leg and matches the skin tone of my organic leg (and believe me, many amputees do--and if that WAS what I wanted, he should be doing that too!). ALL I WANT IS TO FEEL COMFORTABLE WITH MYSELF. AND I AM NOT. And it is MY decision as to what will make "comfort" happen for me. In my opinion, it is half of the prosthetist's job to understand this fact, and to provide a service that delivers a product that satisfies the customer. Without ridiculing them for their choices in regards to costmetics, or any other need for that matter.

I needed a good cry and a few moments alone to gain the fortitude to set him straight. And you can bet your ass that he will be set straight. My plan was to settle down, call in later that day, tell him to get the parts ASAP, none of this couple of weeks shit, and be prepared to fix the penile flare...sooner, not later.
And that's when I remembered that he was leaving for and O & P convention or something right after our he's been out of the office, and I still have yet to talk to him.

After I left his office that day, I wore the leg, crying...penis...widgets...and the post office and then Costco. Within an hour and half of having the new socket, I developed an open sore on my butt cheek (yes, Sara...girdle time...I know). My prosthesis also kept rotating inward so that I became pigeon-toed.

So now he has to fix the "cosmetic" and the mechanical, too.

Not sure when that will happen...and it's kind of moot because the sore needs to heal up before I can do a ton of heavy walking anyhow.

So. What's the verdict. Onto the next topic........?


Anonymous said...

Extremely touching. I am absolutely impressed that you are sharing this. And I also feel that you are entirely correct in your request for color matching. And the penis-bit? Unacceptable! And to laugh at you?! I probably would have broken down in tears right there and not been able to voice my complaints in a rational manner. I had an orthopedic surgeon laugh at me when I blew out my knee in high school, it felt horrible so I can only imagine how much worse this feels. Hang in there and stick to your guns!!

strangelittlemama said...

I'm so sorry that that asshat laughed. What a moron, really!
I can't really understand what you are going through (not having been there) but I think I can imagine I'd feel very much the same way.
I hope the dude fixes it all up for you so it's functional, comfortable, and even makes you feel pretty. Because you are!!!!

Wheelchair Dancer said...

Girl. That's UNACCEPTABLE. How dare he. It's shoddy work, and it demonstrates a lack of professionalism. It is part of his job to create a leg that fits, works, and LOOKS good. He is also to understand that a prosthetic is that: a replacement for your leg. And as such, you have rights over how it looks and feels. OVER AND BEYOND the question of whether it works.

PS I'm with you on the question of beauty. When my hands hurt, I henna them. AND I am very protective of my wheelchairs and how they look.

I'm FURIOUS on your behalf. LEMME at him.

Gray said...

Of course you make sense!

You did a terrific job explaining what you felt. Who could read your description and see the photos and fail to understand why you felt crestfallen when blocks of safety yellow and high visibility green rudely destroyed your plans? We can imagine the bitter aftertaste of disdainful laughter delivered twice. We could see the prosthetist's disrespect of your right to decide who you are and how you look.

It would be interesting to see how much your prosthetist would enjoy having a green and yellow tooth. Would he like body work on his car to don in random colors? Your preferences are of course entirely rational and yours to make.

I know from this and the last entry that this was hard to write about. Thanks for sharing this with us. You deserve an A+ for blogging in my book.


p.s. I loved the yarn and leg color combination.

jodi said...

Sweetie. This may be easier said than done, but is it possible to find a new prostheticist? Shabby work is one thing, but open mockery of clients is totally unprofessional and assholish. He is making something that should stand in for and function as a part of your body, for crying out loud, and it's absolutely up to you to choose what your body will look like. And it's his job to keep his mouth shut and make it so.

Maybe you ought to find a way to make him aware of this blog. Perhaps if he could read how you feel, rather than only half listening to you explain it in his office while he suppresses his assholish chuckles, he'd understand. And be more sensitive to clients in general.

Oh, and your gift arrived today; thanks so much! I love it, and I need to start something complicated now so I have an excuse to use the markers; their message is one I can really use right now. You rock.

Mouse said...

I can't believe that he laughed at you.. I really hope that there is someone else you can go to, because that is totally unacceptable! By the way.. I love your Converse sneakers- if you haven't checked them out yet, has a HUGE selection of "chucks" that are AWESOME! I'm drooling over the faux shearling and suede ones on the site.

Carol said...

What an arsehole is the prosthetist! Honey, you don't need no stinkin' fake genitalia bulge: you've already got brass ones for getting through all this with sense of humor intact. I don't have any words of wisdom, and you seem to be plenty wise already so I'll just say that my dyepots are at the ready no matter what color the frickin' widgets end up. You shall have matching footwear, godammnit. You shall.

Anonymous said...

It took me years to be comfortable with my leg. It took me over year of walking on my leg before I felt like I didn't need crutches or a cane. I was undergoing chemo, but what took longer was the emotional part. The part of feeling comfortable and independant with my leg. It took me several years of having a foam cover before I felt comfortable showing my leg to anyone. Even when I had the cover I refused to wear anything where my leg would show.

It is also my experience that prosthetists are not always the most professional people. However, shoddy work is never exceptable. A leg is not cheap, and don't accept anything less. I didn't end up at my prosthetic company until 7 years of being an amputee. As much as they have screwed up before (you may have read about it on my blog) I still love them dearly. Heck, I travel to San Diego to see them.

I'm sure you are getting advice all over the place, but if you ever need help with anything, please feel free.

Anonymous said...

Oh, sweetie, I am so sorry this happened to you. This kind of thing is why I now always insist that Brilliant Engineer Boyfriend accompany me to my prosthetist appointments. Always. He is smart and understands mechanics. He is vain and cares how I look. He loves me more than anyone alive. And he will not allow anyone to disrespect my wishes about my own body, ever. Plus, he's a man, so other men listen to him more than me, even when it's me being discussed.

The fact that this is necessary sucks, and it chomps my pride as a feminist, but this is the truth. I used to assume it wouldn't matter who came with me, if anyone, but at some point I realized, oh yes, even in the 2000s, even though I am dealing with compassionate people who only mean me well, it still matters. BEB couldn't believe it either, but to his credit, it only took one bout of hysterical crying to help BEB understand how serious was my need for his help. So he comes with me, every time. Just to the prosthetist. As a result, I actually require fewer visits to the prosthetist. Why? Because now I get what I want every time I go, no bullshit, few arguments, no patronizing.

I love my prosthetist. He's a great guy, not a jerk at all, a fellow right transfemoral amputee, an athlete, etc., etc., etc. But he's a guy. Because he's a guy, I have to bring another guy to serve as a translator and advocate or I don't get listened to and thus I don't what I need.

I have one other thing to suggest: model enamel. You know, the stuff kids use for painting model airplanes. Go to a hobby shop and ask for help choosing the right stuff. Remember, this tool, your fake leg, is your property and you can do to it what you wish. Just don't get any liquid in or on any of the electronic bits, and your warranty should hold.

Oh, one more thing: Yeah. I was sorely disheartened the first time I put on skin-tight, pastel-colored pants and saw that bulge, too, and mine is actually made properly. No one warned me because, guess what, they're not women. I still wear shorts, skirts, and even miniskirts if I feel like it, but none of them skin tight. For pants, I sometimes wear jeans, but usually pleated khakis. They fit great, and they also have lots of room for the equipment.

At my insistence (and yeah, once I started bringing my boyfriend along and people started listening to me and actually trying stuff I requested -- and remember, my prosthetist absolutely rocks, world-class, but still...), my prosthetist shaved off the inner bulge. However, due to the vagaries of carrying oneself on liquidy flesh inside a stable plastic cup, when I stand up, my socket still poinks outward. This is likely the best it will ever be. Some days, when my body's water volume is relatively low, I can fit my fist inside the hip side of my socket. Then I bloat and I can only fit my flat hand. It's not pretty. But it is currently impossible to make a socket that will flex with my every movement and volume change and at the same time hold me up. This is what happens when one must support one's leg from the outside instead of via interior structure.

Hang in there, kiddo. It's an awfully long, bumpy road, but you're coming along. And sorry I haven't been around much. A post of yours a couple of posts back, the one about your dance troupe trying to mimic the experience of one-leggedness, got me thinking so hard I kind of got stuck! heh heh More on that later.

Bethieee said...

I'm drawing a complete blank on citations at the moment, but there has been research done showing that doctors with bad bedside manners get sued for malpractice much more often than those that actually keep their patients thinking they give a damn about the People they're treating and not just the conditions those people carried in the door.

Anonymous said...

Hi. I slid in from Sara's blog. I see the first few things that came to my mind have been said by others, especially Sara: Change your prosthetist... hmm, I meant "find a new one" but if you can't, maybe the boy's in for a conversion experience. Paint, yes, model-builders' enamel. Comes in little teeny bottles, too, unlike, say, Rustoleum.

And Yeah, the glib version is "He's a guy so he doesn't get it." I suspect it's not as easy as "They don't get color coordination" or "Somebody, quick, call the Queer Eye guys." It's a kind of privileged view, in that guys get to say how good we women look, or not, but don't have to analyze why they think so; that's just not butch enough to bother thinking about.

Joe and I have a standing joke about that -- he's fairly butch even for a straight guy; I suspect it's a habit in self-defense, growing up smart and not huge in the deep South. I've seen him do stealth birding, too, same thing. He's also capable of laughing at himself over it. (It could be argued that I'm butch for a woman, myself; mostly I just wear and do what pleases me.) I recognize cerise and puce and chartreuse and taupe; he doesn't, but he does "see" bird colors like rufous and ferruginous. I have both sets, how versatile.

Plus I suspect your pros-man is still in the "ain't I clever" stage of life, which guys can prolong indefinitely if they choose the right work. Tinker, tinker, tinker. Sometimes they need a slap upside the head to jar them into remembering that their cleverness is supposed to benefit -- and please! -- the person paying them.