paidiraiompair: (Can do)
[personal profile] paidiraiompair
 Over the last many years I have struggled with physical challenges. I and a few friends like me, have come to call ourselves “Border Gimps”, especially since society not only loves to have a name for things, but also to help sort through the current “P.C. phrase of the month”. Now I know there are as many thoughts on that sort of thing as there are people to think them, but here is how I and mine define it.

 


Border Gimps usually have some capacity to stand, likely even to walk, in one mode or another. Our bodies are usually all intact, just not 100% functional. Our issues are usually more related to the pain surrounding mobility in general. We go to doctors when the problems begin. This is often a long, multi-layered journey, at the end of which modern medicine provides little to no solutions for us. We usually have a mixed status officially, as in we probably won’t qualify for any sort of governmental disability assistance, but most of us have tags, called “rock star” or “princess” parking passes, for our cars. Some days, we might appear completely “normal”; others, our young or middle-aged bodies betray us into the stance of the very elderly. Likely, we have no control or way to predict what “status” any given day will bring. We spend our days on the border between “capable” and “handicapped”.

 

When you are a border gimp, one of the first things you’ll realize is that you are never enough of any one thing to please anyone. You can walk, perhaps with a decisive limp, but you CAN do it, appeasing those who are concerned that you will need special accommodations. When you walk, pain is always apart of the decision so you get really good at hiding it, a relief to those who are made uncomfortable from your mere presence. You find convenient excuses not to travel so long or so far. You learn to always have everything at hand. When you do move, you do so slowly and carefully, holding your body as firm and as erect as you can. You keep close to walls and other stable objects to catch an unexpected fault in your stride. You smile a lot, so folks don’t look too closely at the unavoidable catch of breath or flinch of pain. You’re clumsy but less an obstacle than in your chair. The chair gives you mobility but the world limits where you can go. First outings in chairs demonstrate just how “handicap accessible” the world and people around you, really are not.

Folks either can’t look away from you, or refuse to see you at all. Your very presence makes them uncomfortable. They don’t know how to act, so they either fall over themselves (and you) to “do” for you, or sprint and dash to get away from you. Either way, they wish you had just stayed at home.

People always want to know when you’ll “be better”. Why were you able to “walk” with a cane yesterday, but are in your chair today? They think to themselves, “There is NOTHING in this world that would put me in a wheelchair; I’d go down swinging.” They secretly think you are a pretender to the handicap world. You must be in it only for the “attention”.

There are medications to ease the pain, but even they are a double-edged sword. If you take them, you are “better”, in that you are more mobile, less “gimpy”, and easier to be around. You are also judged as an “addict”. You are weak for not just “powering” through your pain with guts and guile. Surely exercise, meditation, biofeedback, yoga, acupuncture, prayer, crystals, and determination can overcome any hurt better than “drugs”. There is the perpetual “have you tried….?” Everyone knows someone who has just what you have and tried whatever he or she is suggesting, and since it worked for them, it must be the cure. If you are relying on pills, then you have “given up”.

Border gimps know that we HAVE, in fact, tried it all. We have allowed doctors and healers to poke, prod, prescribe, inject, inspect, and x-ray and MRI us to the very limits of our ability to withstand physically and our ability to pay financially. But whatever our reasons, (and they can be complex and varied), there comes a moment when we are face to face with a physician who eventually throws up his or her hands and says “there is NOTHING I can do.” We have to accept that even “modern medicine” can’t fix everything, and it cannot fix us.

It is usually at this point that one of two things happens on the medical front. One, the doctor decides that since there is no “treatment that will lead to a cure”, he or she is done with you. That’s the dreaded diagnosis of MMI, Maximum Medical Improvement. Even if you are still “broken” you are expected to be resigned to your fate. Yes, your pain, your symptoms are still ever-present, but since there is no prize of making you better, the doctor shows you the door. You are left to “just deal with it” for the rest of your life. One doctor, who by the way, had admittedly NEVER laid eyes on me, told me that I could “walk enough”. Another told me, that though there were “abnormalities” in both MRI and x-rays, what I had wasn't, in his opinion, “significant”. He was once a physician for a major league football team, and THEY played hardball all the time with “real” problems. Life sucks; get a helmet.

The second thing that happens is that they turn on you. Since they cannot figure out the “why” of your affliction, then there is nothing wrong with you. You are lying. You are exaggerating your plight. You are an attention seeking, drug-addict who is a weak, lazy, mentally unstable drama queen. No, they are not going to “treat” you anymore, because there is no “treatment” you responded to. You ask what to do, and as one doctor said to me, “Well, just stop it”. Stop using a cane, stop walking with a limp, STOP being a whining pansy and just “pull yourself together”.

It is about at this point that most border gimps buy into this crap. It is one of the stages of grief; denial. We are not only in mourning for our lose mobility, but are told the lost is all in our heads. So many of us has given in to the doctor’s logic and said, “Well, I am all better now”. Even with or without pain medications, we push our bodies to the breaking point to prove to ourselves that we were just being weak and silly. During this time, we power through each day in mind-robbing agony. We swim the river of denial. Our overtly brave happy faces turning on a dime to “unexplainable” tears mixed with random rage. We do more than “seize a day”; we wrestle it to the ground, punishing ourselves with pain in frustration that our will alone cannot conquer our condition. We give ourselves no mercy, because no one “believes” us. They say what we feel isn’t real. We do this until our bodies give out. One day, there is no mental will or physical strength to get out of bed. We sink into a depression, hitting a wall without socially viable choices.

This is when the border gimps find they cannot physically live the “lifestyle” of a full time bi-ped. We want a life that is as rich and diverse and yes, even as free of pain, as anyone else. The smart ones begin to be their own advocate. If they are lucky, they have support of loved ones who will stick up for their right to make their own decisions about what sort of life they want. The very determined stick to their guns until they find a doctor who is more interested in helping them achieve that goal than “fixing” them. We want to STOP being patients and get on with whatever we were doing before we “starting going gimp”. But those of us on the border have to first buck up to one major fact. There will ALWAYS be people who are going to disagree (sometimes loudly and obnoxiously) and criticize our choices. We must, unfortunately, come to terms that those people who do not know us, do not know our struggle, and do not know our bodies can go straight to Hell.

There will be prices to pay for this force of independence. If we make concessions to our bodies, be that a cane, a walker, a chair, we are exhausted by having to “justify” our daily choices. We have the ABILITY to walk, no matter what else is involved, so why are we drawing attention to ourselves and inconveniencing everyone around us. If we educate ourselves and conclude that pain medications in some combination remove some of the hurt and enhance for our own decided quality of life, again we are judged. Anything must be better than living “dependent” on “drugs,” say people who have never lived day after month after year with constant, unfix-able hurt. Who wouldn't wish to live a life in which the daily choice isn’t “pain or brain”? The fact is, time factored by education and experience gives one the right to make choices for oneself. If others think they “know better”, there is no way to change their minds.

Sometimes worse are the “well wishers” those who can’t help but “bless us” as if we were dying victims. They tweak their voices into the same high pitch tones one uses for simpletons and small babies. I have a blind friend who laughs when people speak “clear and slow” for her to better understand them. We will often suffer as politely as we can through their easing of their souls to tell us we are “so brave”, “a trooper,” or the worst of all, “an inspiration”. We know they think they are being kind, but they do not know that all we really want is to go about each day just like everyone else. Good days and bad.

In my own life, I often attempt to cut these nice folks off with humor. It is how I have always lived, finding as much laughter in this crazy existence as I can. Yes, it IS a mask sometimes, but one that many use without malice. I smile as they fumble with which PC term I might be comfortable with, and then I let them off the hook. “I am a gimp, you are a bi-ped. You annoy the shit out of us,” I add, with the same silly tone of a good Southern “bless your heart”. They can’t help it, so I try to move along.

Border gimps, however, are often those with “invisible disabilities” on good days. Please know, we do understand and appreciate what our bodies ARE still able to do. We have choices that others do not. We are wheelchair users, not confined to a chair, and we know the difference. (BTW, lots of gimps of any stripe HATE the phrase, “confined to a wheelchair” so all you bi-peds make note NOT to use it). Yes, for some of us, we must face that eventually those choices will become more and more limited, as many of us have degenerative problems that will only become worse with time. Yet all of us only want to have the best quality of life, which is what all humans strive for, or I optimistically hope they do.

Life is a struggle, and all of us have our own “box of rocks” to tote around. We like to give names, labels, to the weight of those stones, so we can identify them when we see one. It has taken me a long decade to come to understand all the names I carry. So all these words are written just to be a voice for those like me. If you read some truth from your experience, then know, “I am a Border Gimp too, and we are not alone”.


Hello, and an Invitation to the Blogging Series

Date: 2014-06-22 12:58 pm (UTC)
From: (Anonymous)
Hi! I loved your post.

And... I'd love to connect more - I am hosting a summer blogging series now regarding disability and including allies of people with disabilities.
I can send you more info on it if you like (my email address is meriahnichols@gmail.com) - and here is the post that explains it all - http://www.meriahnichols.com/summer-blog-hop-series-challenge/

Looking forward to getting to you know you more,

Meriah

Date: 2016-04-19 11:23 pm (UTC)
From: (Anonymous)
I'm not sure there has ever been truer words spoken or written as this. 100% home run... Fibro, Lupus, POTS, DDD, CFS, Endo, hypothyroid, chronic headaches, chronic pain/fatigue.
I use a cane now... waiting for the call back to start ordering process for a wheelchair. I'm 41. I have 3 kids and this makes me feel that this is all ok.. I'm ok. I'm someone else's normal also. I'm not quitting or 'giving up'. I'm at my tolerance level max.

Thank you for this. all of this.

Date: 2016-06-05 12:05 am (UTC)
From: (Anonymous)
Well said my friend. This is me and I have been ignoring assholes and their comments for years. I know who I am and what I can do. I have fought with Drs and pharmacist (some who refuse to fill m rx's) and their opinions of my need for medication. I have wonderful medical care now...most of all a wonderful family...especially husband and daughter....who know me and my needs. I tell everyone who wants me to use the jazzy in Walmart that I will walk as long as the good Lord lets me...yes I'm slow, yes I grunt....go around me. I am me and I deserve the same level of respect...maybe more...than others!

Date: 2016-06-07 03:16 am (UTC)
From: (Anonymous)
I have been going through the same problem for the last couple of years and had to stop working as my body is in pain none stop and sometimes it's so bad I could cry but still get up and push myself to the limits I just wish the could tell me a name of what it is so I could shove it in bosses face as she has treated me like shit for being taken off of work for my pain without enough notice I have been six weeks almost with no income still in bad pain pins and needles when my feet hit the floor and back pain and neck pain and wrist pain and no strength in my arms and hands that was bearable to work 8 hours on my feet I pushed my way through it day after day but then came to a point where walking has become unbearable and limping around my work place like I just gotten run over by a car by the beginning of my shift.My boss begain telling people I was lazy and moody and even tried to get me to wear a boot that was her daughters to offering me some of her meds to stay and do my shift .I have worked since I been 15 started then and didn't stop and work up until I was 45 and hate being home every day to the point of no return I've been gaining weight because I can't do much of anything but sitting I've had A.D.D and my mind won't stop but by body has and been treated like shit sitting home starving waiting for money which I've payed into my whole life to not knowing what's coming next .I so feel your pain

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