paidiraiompair: (stepping stone)
 "dancing is an important part of music, but so is crying. ~ Katie Melua

My first bio in a program for dance had the line "I have loved dance since the moment Papa put my feet on top of his".  "Juking" as it was called in our home took the forms of Irish jigs, jitter bugs, texas two steps, the twist and later the hustle and other forms of line dancing.  It was turning on the giant stereo record player/8 track in our big living room way up loud.  It was laughter of teaching each other the latest steps.  As the generations gaps of my vastly spaced in age brothers came and went, this one private in home tradition could put a truce in on-going fusses, or put closeness to teen siblings for maybe an hour. Though tastes varied, we could all agree on Hank Williams, Elvis, the Beatles, The Eagles and any thing on the infamous Saturday Night Fever album.  As the only girl, I got to learn them all. It was often silly, but always happy.  
I performed in my first theatre play at 6, given the main role due to a freak ability to learn large amounts of dialogue quickly.  In the front row would be Papa.  For the next 10 years of plays, and as times changed, into the newer styles of performance art, he was there for all of those too.  (My first paid gig was as a gymnastic dancing piece of carpet, hand to God). He said to me in his lilting accent something he would say often, the world of abstract art not being his forte, "Baby, I didn't understand a bit of it, but you were the very best one".  
  He was there like that for all of us, despite the wide and often unconventional paths we took.  For me, I did some sports and a brief time in band, but theatre was my passion. No one was prouder than him when I won the lead role at 13 in the high school senior play.  For 30 years, even when I was only the stage manger, lighting or props designer, he was there.  He watched every show I directed, even joining the board of my own business production company.  And when I changed my focus to learn integrated dance, he was right there opening night, and every year.  Pride in his eyes, "Baby, you're so graceful up there".  That validation, bias as I know it was, always meant more to my heart than any review.
This year's big intown production, included a piece about the U.S. immigrants of the early 20th century, and I was portraying a girl from Ireland.  I was looking forward to this tribute to my Gaelic ancestors and thought how my father would enjoy it.  As I was about to leave for the theatre, I got the call.  Health wasn't going to allow for the 4 hour round trip from Papa's home to see me.  Of course I said it was fine and was more worried that my family was well and taking care of themselves.  Then I started the drive into town.  I navigated the streets with slow silent tears, feeling a bit foolish.  I pulled myself together, started the makeup and hair process, putting a Pink Floyd mix-tape in my ears. Warmed up and game face on, I lived up to the standards of performance I always strive for in my work.  Every audience deserves your best show.  
As the last number faded to dark and we made our way forward for bows, the lights came up.  There in the those same seats were now the applauding smiling faces of my children.  I fought the tears back and winked to them and made my way backstage.  In the lobby I hugged them and said how happy I was they came and other small talk.  Later, sitting briefly outside between shows, I let myself cry, not just in saddest, as I wrestle with the reality that my Papa, is in fact, very likely mortal.  I also had tears of joy.  I don't just dance for myself, for my own spirit.  I dance in the love of the family who always supports me, But for now on it will be in the faces of my kids, proud I hope.  Just like the show, LIFE too, must go on.  And I am damn lucky.  


note: this image is of a stepping stone is on the sidewalk near the neighborhood I raised my family
paidiraiompair: (Can do)
 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”.


paidiraiompair: (keep calm)
 An open letter to Amy Purdy and the cast and crew of Dancing with the Stars 
 
 
Dear Amy, 
 
First, I think you are amazing.
 
That said, I'd like to put before you a thought about a way you can REALLY help the disability community. PLEASE, stop allowing the folks on DWTS (I'm a big fan BTW) from CONSTANTLY calling you "inspirational". Folks with disabilities are sick and tired of being the focus of making the able bodied feel better by being their "inspiration". If you don't believe me, ask in the many communities peopled by the disabled and you will come to understand that you are in a rare and gift of an opportunity to use your participation to make a point. "Judge my dancing, judge my ability but STOP STOP STOP belittling all of that with the "I" word." (It is noted that Glen is less guilty of this so far and it's appreciated) 
 
It really matters, Amy, and it IS being taken note by your contemporaries. I was taking part is a conference today called "Nothing About Us, Without Us" and how the over use of the word was ruining the chance to educate the public about treating all of us in an truly EQUAL format. You are an athlete in the para Olympic games, and you would never accept the judges using anything other than your ability to measure your success. 
 
Please Amy, you really can do a wonderful thing with your wit (loved you on Jimmy K) and charm to educated the public. Ask the DWTS cast and crew to STOP using the word inspirational. We of the community ARE watching and hoping that THIS opportunity will not be allowed to slip away.  Thank you for listening. 
paidiraiompair: (dance warm up)
"Disability is not a brave struggle or ‘courage in the face of adversity. Disability is an art. It’s an ingenious way to live." - Neil Marcus

paidiraiompair: (dancin' in lot)
 So when we LAST left our story, our heroine was training hard for her FIRST 4 mile "Rolk" for Dimes with Team Duncan, nephew and ambassador of the North Georgia chapter.  To update, not only did she MAKE the entire course, despite that over half the distance was either:  Too narrow for a wheel chair, BROKEN, covered in trash/fallen branches/ glass and/or NON-EXISTENT (you could just HEAR the air quotes in "accessible route") the more amazing part was our group raised over $20,000.00 for the cause.  To everyone who donated, watched/shared the video I thank you.

Since then, the dance company has performed at the Inman Park Festival, began learning two new works, crafted another to be presented this weekend at the Modern Atlanta Dance (MAD) festival, throwing in a high school workshop and a round of "dragon" school shows.  "Down time" has been dedicated to rehearsal, PT, work etc.  (You heard the air quotes on that too didn't ya?)  So in a moment of quiet I wanted to share one of those things that keeps me on task and mostly sane. 

A frequent visitor to our class noticed my humming different tunes as I went through my prep for rehearsal.  I explained that it was my "theme song" for the day.  My doctor likes it that I have "motivational music" to help me stay up and moving.  Some days, when I am facing an "adventure" i.e. life challenges, it's the theme from "Indiana Jones", over-scheduled days you can hear the Lone Ranger Overture.  Multi multi-task days, the most common, I "insert Circus Music here".  The idea is to move to the music in my head, keeping time to propel me forward through whatever sort of body issues are thrown in my way.  I find when I can push along until rehearsal or any morning begins, in the end, I leave feeling better, even if it's a better sort of tired. 

Theme songs set a tone, an emotional backdrop, for my mind.  Thinking a happy tune can brighten your outlook, even if only to put a sarcastic spin on things.  Venting via a hard bass line, or centering over a melodic one brings focus when my  brain is racing with too many or even unconjoined thoughts.  As a dancer, I seem to have the best performances when I remind myself to relax into the movement and let the music move me.  My body knows the choreography; it's my mind that sets into panic.

I find, most of all, my daily tunes are good for the soul.  That is why I advocate the practice to anyone. Use the old "mixed tape" format, on whatever music device you have (yeah, I still use actual tape) to put together a playlist as a way to start.  Think of media characters, heroes or villains, as many come complete with a theme.  Songs from childhood Saturday morning cartoons, opening notes from a family TV night, hummed memories of a grandparent.  All these are the music that moves our spirits and our hearts, and can get us passed the chaos of street sounds or even voices of negative thought. 

Before performance, there is a time to warm up and connect with the other dancers. In the wings, waiting in the silence, I remind myself to find calm, trust and have fun.  When I can do that, the music in my head and the sound in my ears come together, and all I feel is, "I am a dancer….”let’s DO this!”

paidiraiompair: (dreaming)
 It’s been a while since I've written here.  Mostly because we have been up to our noses in rehearsal as we prepared our major concert of the year here in Atlanta.  A time of hard work and jammed backed days, in the evenings there was no energy to form written sentences.  Yet, in my mind, in any quiet moment, I found myself thinking about the basic human need to express the spirit.  I've seen how that can translate into frayed emotions, pushing physical bounties, overwhelming the memory and frustrating the mind.  As the last performance played out, by intermission we were taking on the look of the “walking wounded” (pardon the pun).  Head collisions, bruised and battered feet/toes, a smashed set of knuckles and every ice pack found or made, when the lights came up, we were all on again.  This is what we do, more than just our livelihoods, but our lives.

Unlike dancing in a club or otherwise for oneself, dancing as performance is what Gabrielle Roth once called the “Light of controlled Chaos”.  When rehearsals transition into nonstop run throughs, the task is to get every movement exactly correct, all the while making it feel fresh and look spontaneous.  However, it is surely then that things go awry.  Roth also said, “Chaos has a shadow side, when it is not grounded.  And that is just a panic”.  Not really “stage fright” it is the added energy that makes dance going toward performance start to “feel different”.  Making mistakes you've never done before, turning ways you can’t image, forgetting moves you done a hundred times.  The only thing to do is breathe, turn nervousness into excitement, finding the balance, hopefully, before opening night.  Prayer, lucky charms and kind words can go a long way towards that end.    

 So the curtain rises, the lights are on and you and your cast mates are in it together.  Each performance will have moments of great syncopation, impromptu elements of inspiration and bumps in the beat that one makes do and carries on.  I think the best times are when the company pulls together, from reaching a steady hand in the momentary dark before the music rises to checking on the wonderful and the wounded as the applause fades.  "Happiness is essentially a state of going somewhere, wholeheartedly, one-directionally, without regret or reservation." - William H. Sheldon.  

Now in the week our director has given us off, I, for one, am using the time to catch up on my everyday tasks and much needed sleep.   The knot on my noggin all but gone, my feared broken toes are still black across the ridge, but only bruised.  I find I am getting antsy, ready to create again, eager for that wonderful “controlled chaos” that turns learned patterns into art, and simple counts into music of movement and life.  

paidiraiompair: (dreaming)
  Abilities and inabilities are all just art supplies. 
~Candy Kuehn 


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