Monday, July 26, 2010

You're Disabled - NO! I'm Not! Nyuh-huh! Uh-uh! Nyuh-hah, too!

Its a pretty conundrum we clubbies have - we aren't really "disabled," right? Unless we are. I'm having a bad day. I don't know if you can tell - cyberspace is pretty poor at expressing emotions, emoticons notwithstanding. And it's also a place where anything you say can be held against you in the court of public, er, opinion? Or, perhaps, attitude explosion? Yeah, that's it.

We were most of us I'd venture to guess raised to "keep the secret," about being disabled - after all, the doctors, and by proxy, our parents, assured us we were "just like anybody else." Sweet. But then one day we wake up and our feet scream at us, Whoa, there, just a minute, not so fast - you ain't steppin' on ME today, bub! And that's the beginning of doubt, the start of a small but irritating picture in our minds that, well, we been flim-flammed on the jim-jam, as some famous cartoon figure of the distant past used to say. But we won't use that word, nosiree! Not on your life. 'Cuz we're just like everybody else, yep, no doubt, none at all. Uh-uh.

Yeeaahhhhh, wrong. Sorry to break it to me and you like this, but we are - disabled, that is. Doesn't mean we can't do as much as we are willing to try to do, but we just don't have the same range, the same endurance, the same absence of pain that all those "normal" people do. We are "differently-abled," if that makes you better able to stomach this major change of focus. But the sooner we come to terms with this, the better we will be at doing what we need to do.

I got my wake up call on this issue a few years back. I was working on a certificate in training and human resource development, and in one of my classes, the instructor invited each student to run their own five-minute training for the rest of the class. One man began by having the class stand along one side of the room. He then would ask everyone to respond to various types of self-identified groups we all might consider ourselves part of. As he would announce a specific group, or affiliation, people who so identified would go to the other side of the room. It got to where there were only three people on the original side, and I was one of them. the other two finally responded to something or other, leaving only me. Not unlike being the last one to be picked for a team in baseball when neither wants you.

And then he said, "disabled, or handicapped."  At first, I didn't really hear the words. But suddenly, it was like a big hand pushed me from behind, and I stumbled forward. I must have looked pretty shocked, because the instructor suddenly came toward me, and then, I fainted. Yep. No kidding. I have never fainted in my life, not before, nor since.

It has taken me many years, now, to process this event, as well as this acknowledgment of my situation. I believe I was so adamant that I was "normal," or not disabled, that I was simply not prepared to deal with the response my body had to that word, that idea. Even today, I fight against the concept, firmly believing I can, should be able to do whatever I want to do. Which, by now, you'd think I was too intelligent to be so self-deluded. Apparently not.

Today I was in a great deal of pain. Every step was an effort. I couldn't take the dogs for their walk, which made them cynical and deeply disappointed, and, well, mainly concerned. They aren't cynical, sorry, but I sure as hell am. And it occurs once more that this cynicism is built on a foundation of denial of my true situation. If I am NOT disabled, then this pain is a failure of what - my will? My manhood? My belief in this long-held and well-cemented lie? Yep. that one will do. I am in pain because my feet just don't have the strength to deal with relatively mild, and by most people's estimation, normal demands of getting through one's day. So, I get in a pissy mood, or go in for some really rock-em-sock-em self-abuse, and get to feel even worse. Oh, lucky me.

But this afternoon, at the height of my miserable, rotten day, I went to an event, as part of my job, actually, that really punched me in the nose. It was held at the main branch of the library, in their big auditorium. It was The 2010 Superfest International Disability Film Festival. Now, I was there because I needed to interview someone about, well, I just needed to interview this person, can't really go into specifics, sorry. But there I was, surrounded by a flash from my past, just like the orthopedic clinic I attended throughout my childhood. Wheelchairs, walkers, prosthetic limbs, the works. Disabled people being proud of themselves as people first, disability second, while never once denying who they were, and the nature of their situation on this planet. And me. Mr. Not Disabled. With a cane. And a limp. And two screaming puppies hollering to sit down right now, dammit! Oh what fools these mortals be!


If you are born without an arm, lets say, there is never a moment where someone tells you, hey, guess what, you are NORMAL. Or with dwarfism, or Down's Syndrome. But clubbies? Hell, normal as an Iowa cornfield. Right? Man, I could just slap myself sometimes. Wake up, fella, that little voice of rationality and logic screams. And I just go walking along, in pain, and supremely in denial. But these films, they offered a portrait of life with disabilities, and great, sometimes insurmountable difficulty, and the people so affected, bless everyone of them, just keep on bulling through all the obstacles, even if it means getting their heads bruised in the process. Because, while they might be disabled, they are first and foremost free, autonomous human beings who have as much aspiration and desire as any so-called "normal" person. Which, if you think about it, makes them all, well, normal.


Truth? 

I am freakin' disabled. Get over it. And get on with it.

6 comments:

  1. Thank you for this post. I had a similar experience this year where I really had to accept the fact that I really do have a disability. Like you I was raised by my parents (who did the best they could with my feet) being told I could do everything the rest of the kids did, except I couldn't, and even had limits put on by my ortho-pod. So I couldn't play football or basketball, but I did martial arts, snow skied and was even a choreographer for a show choir in school, however I had days after I was done with that where I would fall through the front door cause my feet decided they had reached their step limit for the day before I could get in the house. I was told I should look for a career where I could stay off my feet however I had other things in mind and have been a paramedic for the last 12 years. Anyway I have been having an increasing amount of pain in my ankles over the last year and was finally told that any surgical correction would basically undo several of the previous surgeries that I had. For the time being I ended up getting a Cortisone injection in my right ankle. After the injection my wife and I were talking to the doctor and my wife asked him about getting a handicap placard for my car (she knew I would never ask, because I'm not disabled right?) without hesitation he filled out the paperwork for me to get a PERMANENT one, not a temporary one. I was not emotionally or mentally ready for that and felt like I was in the middle of a nervous breakdown. It took me several weeks to wrap my head around the idea of having it but I have come to accept it and have even used it on occasion when I am having more than my normal level of pain. Although I am grateful that there are other people in my situation I wish it weren't so. I think I can finally admit to myself that yes I am disabled, and though that realization will not change who I am or how I do things, I believe that it does let me accept myself a bit better.

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  2. Hi, Medikman,

    That Disabled Placard thing you mentioned? exactly my experience - the wife was on me about it for nearly ten years before I could admit it made sense (it seems I tend toward the dense side in some areas - or so she tells me). But once I did it, it made a remarkable difference in my willingness to go out more often for anything other than work.

    As for the surgeon telling you any other procedure would "undo" your prior procedures? Get another opinion - no good surgeon would ever make a statement like that. The only way a surgery would "undo" a previous procedure is if that was the actual intention of the surgery. The real question you need to be asking of any doctor you consult with is, will the surgery they suggest actually make a positive difference, or will it merely replace one problem with another. As for the cortisone injections? Be wary - you really should never have more than 3 such injections within the same 12 month period, or you could face significant joint deterioration (like that isn't already happening for us clubbies, eh?)

    Let me ask you - do you wear custom foot orthotics and custom or modified shoes? Go back and read some of the older posts here about rocker sole modifications, custom shoes, etc. You might find at least some relief with these approaches.

    I am currently undergoing something called prolotherapy, for my right knee. It focuses on soft-tissue repair by inducing inflamation - there's quite a bit of info about it on the web. I plan on starting to go through prolo for my feet after I finish with the knee. I cannot say whether it will work (though I do know it will be a bit painful in the short term, but that wouldn't be anything new, eh?) But I will keep all informed. The way I see it, this is the first non-surgical therapy approach that shows at least strong potential to making a difference in my long-term comfort, so i am willing to give it a try.

    Stay in touch, and stay tuned here - I will be bringing much more to all my fellow clubbies in the coming months, especially about pain management techniques. There will also be some guest posts coming. Good to have you on board!

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  3. Thanks for the welcome, I think I will have to get a better clarification on any new surgical correction. I was at the time in a lot of pain and therefore was not thinking very clearly. As to the orthotics I wore them in the past for about 6 years till my dog ate them. However we are currently in the process of getting me another pair. Hopefully the insurance company will find it in their black harts to approve the coverage. The molds were made by a prosthetic maker and we got a letter to accompany the paperwork from the ortho-pod who did all my previous surgeries. I have never worn custom shoes as an adult and wouldn't even know where to really start looking here in Utah. I currently wear these for not only my everyday wear but also wear them in black for work.
    http://www.workbootsusa.com/co9melaupdet.html

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  4. Never be ashamed to use a handicap placard, I have had one for years. I rarely leave my home other than to go to the doctors office, my wife drives me. I only drive in a emergency anymore. If there is one spot open and an elderly person needs it I will have my wife drop me at the door. I have seen people use them and run up to the door. The way I feel I can hardly walk in my own home so I won't hesitate to use it. This is a wonderful sight Motumbo, I just found it last night researching about specialists. Always get more than one opinion too on surgery. I have had many specialist growing up. Get second and third opinions. God Bless fellow clubbies, Tom W

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  5. Medikman,

    Check out http://www.merrellfootlab.com/ for a local (Utah) source for custom footwear. This guy is really good - tell him I sent you,

    Notty

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  6. Had this exact experience just this past weekend. I have had a placard/plates for a decade now, but only ever use them at parking meters... always figuring that there is someone less-abled than myself who can use the closer spot..

    I had a great weekend this past weekend with my son, starting with paintball and moving into camping (near the car... I was sore and tired after the paintball)... best day ever, by the way.. and totally worth the sleepless night from the aching dogs and shooting pains.

    Anyhow... we needed to stop at the store for dinner and breakfast supplies, and even with a placard, and what I consider a valid level of pain to take the close spot, I still parked halfway across the lot... Again.. there is probably someone less-abled than myself going to need the close spot.

    Some of this, I think stems from attitudes I have gotten in the past for using the accessible spaces with my placard (notsomuch with the plates)... because for all intensive purposes, in my day-to-day life, I appear, and live as a fully abled person, and have caught flack and plenty of under-toned comments when I use the space and hop out of my car... what the person that judges me doesn't see is the return trip to the car after a weekly shopping trip walking up and down the aisles where I am limping like a duck with a broken foot.

    I know I should 'just blow it off'.. but it does have an effect on me to be judged for disability fraud, and it is equally hard to face the fact that I AM DISABLED... there, I said it too.

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