Friday, July 30, 2010

Old News is Interesting News

I've been doing research for some time into locating my old medical records, or at least information on the doctor and clinic where I was treated. Well, I have a couple of things to report to you, my dear readers. First, I have made contact with a doctor who was a colleague and who trained with my doctor, Dr. Day, and who also worked at the Detroit Orthopedic Clinic. It turns out the records are almost certainly kaput, after fifty-plus years (no surprise there,) and the clinic is now renamed. And I've learned the clinic was originally started by a sorority! Cool, huh?

Anyway, I'll be filling this story in further in a later post, but for now, I will also share that I've learned Dr. Day's full name, after all these years - get ready - Dr. Andrew Jackson Day. Totally cool!

Stay tuned, more to come!

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.

Sunday, July 25, 2010

The Sub-Talar Joint - A Real Neighborhood Dive

You've heard me mention the sub-talar joint many times, and probably think I go to bars with weird names, but seriously - I do. I just have a preference for this particular joint, where all the tunes on the juke box are variations on the Twist. (Boy, am I dating myself. Which is a good thing, because no one else will - bah-da-boom.)

Actually, this is the first in a series on basic biomechanics. The intent of this series is to help other clubbies better understand their own particular feet better, and to make it easier to understand the strange foreign language of doctors, which is nearly as indecipherable as their handwriting (did you know that the last course a doctor takes before graduating is medical penmanship? If the professor can actually read your test answers, you flunk.) So today's lesson, cats and kitties, is the subtalar joint. Hop up on a bar stool, place your order with the bartender, and let's get started.


First of, without the subtalar joint, we would all walk like a cartoon figure, throwing one leg forward, planting it fully, then swinging the other forward. We most likely would not have evolved the ability to run, which means the saber tooth would have gotten more of us, as would the mountain lions, tigers, bears, tax collectors, etc., which by extension means we wouldn't be a very crowded planet, and probably no internet, and thus, no blog. And that would be a bummer, wouldn't it? Because without a subtalar joint, the leg cannot rotate over the foot while the foot is planted fully on the ground. Go ahead - try it. Try to twist your foot against the ground while your leg is directly over it, then keep doing that every step. It's OK, I'll wait.....

So? How was that? Pretty difficult, and I'm sure, very tiring. And if you did that all day, your knees and hips would be killing you tomorrow, trust me on that. The subtalar joint is the only joint in the body that operates in all three "cardinal planes." What, you are asking, as if I could hear you, is a cardinal plane? No, its not the one used by that team from St. Louis. A cardinal plane refers to the three planes we move in, and consist of the frontal plane (or coronal plane), the sagittal plane, and the transverse (or horizontal) plane. Here is an excellent and easy to understand explanation. And here is a video showing all three planes, with other motion-related terms for easy understanding. Most joint operate within only two planes, because there is no need for rotational motion to be transferred. While the hip and the shoulder joints move in three planes, they don't of themselves transfer motion. The subtalar joint allows the rotational motion of the leg as it passes over the ground to take place without making the knee and ankle joints provide the same motion, which they are not designed to do - the knee is a hinge joint, and the ankle, as well, and neither is capable of moving through all three planes of motion.

There are many views of the subtalar joint that can be found on the Web, but here is one simple one:


The talus is the bone over which sits the two bones of the lower leg - the tibia, and the fibula. The talus, in turn, sits on, or more properly, articulates with, the calcaneus, what we often refer to as the heel bone. It is this articulation, between talus and calcaneus, that we call the subtalar joint. It is the shapes of the "articular surfaces," or, the intersection of the two bones, that determines the motion that can occur between them, more properly, the motion of that joint. The talus and the calcaneus, in turn, articulate with other bones, and through that motion transfer motion from the ankle, to the mid-foot. You might liken the subtalar joint to a universal joint, that translates vertical motion to horizontal.

But with talipes equino-varus, the talus is dis-articulated from the ankle "mortise," and also from the calcaneus. A major part of the re-forming of the post-natal club foot is designed to get the talus and the calcaneus back under the ankle and in proper articular positions. Hence all the stretching, casting, and bracing, not to mention the surgical interventions. Yes, there are other joint-alignment issues, as well, but this - the subtalar and ankle alignments, are the most critical.

But we post-clubbies know, if not by word, at least by function, that we have less subtalar motion, and more subtalar pain, than non-clubbies. Most of that pain occurs in the space between the talus and the calcaneus. Because of the shapes of the joint surfaces of both bones, there is a sort of cave between those two bones, properly termed a "sinus," the sinus tarsi, to be exact. It is in the sinus tarsi where most of our degenerative joint changes are going on. You can test this quite easily. Grab your foot (any foot- your choice) and stretch it back toward it's original clubbed position. You should feel immediate reduction of the pain. This is because you are, in effect, opening the sinus tarsi, thus relieving the compression of the joint, which is what you are doing all the time you are on your feet. So finding ways to open that joint up are the key to reducing pain in that area. Unfortunately, the solution of fusion of the subtalar, while it will in fact (temporarily) reduce that pain, it will simply force the ankle and knee joints to produce motion they are not designed for.

So the key is to find ways, such as massage and stretches, properly designed orthotics, and proper fitting footwear, to keep that joint even a little more opened up, instead of staying at its end of range of motion continuously. Wikipedia has an excellent explanation of the concept of range of motion here.

If you want even more on the subtalar joint, its quite easy to find way too much on the Web. I recommend shaken rather than stirred, but that's just me. Next time, we'll go down the street to the mid-tarsal joint.  They have lots of micro-brews. tell 'em Lenny sent ya.

Thursday, July 22, 2010

Do You Have A Favorite Shoemaker?

Well, kinda blows the column, doesn't it? The title, I mean - pretty stand-alone, right? But you know me, always ready to talk a spell.

I have asked, and will continue to ask you, dear readers all, to share your resources with others here, and I am doing so once again (I suppose you should expect a pitch every month or so, just in case you missed the last one:-) But today, I am especially looking for shoemakers and shoe modifiers. Yes, there is a difference. A shoemaker makes shoes from scratch, or in Britain, bespoke. Whereas a shoe modifier, who may be a pedorthist, or even a very skilled shoe repair/cobbler person, takes existing footwear and makes modifications - lifts, wedges, rocker soles, inserts, orthotics, etc. For some of us clubbies, the later folks will do the job just fine. But for some of us, modification is not enough. We need truly custom footwear.

The problem is, there aren't a whole lot of these elusive creatures left in the wild. There are very few younger people who want to learn the craft, because well, its hard - to learn and do - and pays less than a software engineer. Or most other fields, for that matter. And many of the old timers are getting, well, too old to continue much longer.

You probably didn't know that, prior to 1890's, there were more than10,000 shoemakers in this country alone. But as the industrial revolution and mass production came into greater prominence, most of these shoemakers were absorbed, and eventually, segregated by the parts of the operation - last making, pattern making, mounting, "making" (sewing the uppers,) soling, finishing. The result was fewer true shoemakers, who are really capable of making the entire shoe as well as the last (for those unaware, the last is the first - step, that is. It is the form upon which the shoe upper is stretched, or "mounted" that gives the shoe its shape and size.) Hence the great decline in practitioners. Even today, at shoe-making operations doing custom work, the work is often segmented by parts, for greater efficiency and cost savings - it is not cheap to make a shoe, especially today. Few people bring their own hides into the shoemaker as part of the payment for the shoes, and yes, people actually did that at one time in this country.

It is no surprise, really, that most people don't get their shoes custom made anymore - it is far more expensive than the local big-box store sells mass-produced shoes for. But then, they don't exactly make many claims about fit, do they? But many clubbies tend to have wide feet. There are only a few mass-produced shoe lines that make 3,4,5 E width shoes anymore - New Balance, Alden, PW Minor, and a couple others, and no one can accuse any of those companies as making sexy shoes. But hey! They fit many of us.

Custom shoes, however, do more than fit (if made well, of course.) They allow for better incorporation of custom orthotics, hiding a necessary lift, better incorporation of a rocker sole, and because most shoemakers tend to use high-grade materials, they almost always last far longer than a factory-made product. My shoes last, on average, eight to ten years, and require resoling every two to three years. The fact is, the better the shoe is balanced, the more it works with your particular biomechanics, the longer it will last. Just sayin'.

So, who's your shoemaker, or pedorthist, or cobbler? Have you had to shop around before finding the one you currently used? What is it about their work that you can best recommend to others. Come on, folks, put it out there for your fellow clubbies! Because by recommending your shoemaker to others, the shoemaker is likely to remain in business longer, be able to find an apprentice one day, and thus ensure you with a steady source of footwear for the indefinite future. Imagine trying to find shoes that work for those sore doggies at the bottom of your legs at, what - Shoe Gazillion?

Wednesday, July 21, 2010

Coping With What It Is

I was recently made painfully aware, as those gentle readers who've been reading here for a while know, about how some people find themselves unable to cope with what might seem to some like a trivial, or at least not insoluble problem. And while suicide is certainly the most extreme manifestation of an inability to gain perspective, it is not by any means the only such manifestation. Chronic depression, drug addiction, alcoholism, inappropriate ways of dealing with inner rage, even obsessive-compulsive disorder, all can be outlets, self-destructive though they may be, for our own individual inability to manage the things, large or small, that overwhelm our coping skills.

Chronic pain, especially pain that interferes with our daily activities, the kind in fact that we see everyone else doing around us with no apparent stress, can push our coping skills to their outer limits at times. I would venture a guess that most clubbies, after ten, fifteen, twenty years of daily bouts with the feet demons, can understand this with little difficulty. We all know, many of us from childhood, that useless and unanswerable question - why? Why me can be a mantra, but one without any reasonable answers, which only adds to the dimensions of the pain, layering frustration, anger, resentment, depression, even resignation, upon the pure physicality of daily reminders of the condition we find ourselves bound to.

Now, I'm not a psychologist, nor a particularly insightful guru, or anything remotely resembling a person with answers. All I can do is share my own process and journey through this landscape I have to negotiate daily, and hope others find some resonance of their own experiences. And of course hope you, gentle readers, will likewise share with other clubbies your own story, your own search for respite from the pain. And I can share knowledge, information, resources that may be of use to you, as well.

But it does seem to me there is some insight possible with respect to our situation. Not rationalizations, mind you - I am after all seeking to upset some long-held falsehoods regarding club feet, and post-club feet, even at the risk of ticking a few folks off. No, not quite right - even at the possibility of doing so - its not really a risk. But I suppose you could call it a mission.

One such insight pertains to radical and poorly thought out "solutions" with the thought they will end the pain. I refer, as just one example, of the notion (one which I've expressed and thought of seriously myself, though not for many years now) that amputation and resorting to prosthesis would finally end the pain. Of course, this seems reasonable, from several points of view, I suppose. But it is in fact merely "trading up," replacing one type and location of pain for another, maybe not immediately, but sooner than you'd like.

Truth is, its important to be skeptical about any idea whose very radicality causes others to jump back in surprise when its put forward - that reaction is a pretty good clue that you might want to do a considerable amount of research before making a decision that cannot be reversed. Just saying.

Post-club feet, not unlike many forms of disability, are far more than a physical set of symptoms and pains. It encompasses deep and complex psychological elements, social stigma, sense of isolation, limits on life choices, etc. And for that reason alone, we need the input and kind ear of others as we each attempt to navigate through our not-so-simple lives. If my young friend, no matter what her internal demons caused her to believe, had reached out to even one other person before moving on her idea of ending her pain in such a permanent manner, she may have, at minimum, started her journey toward a solution. Maybe not the solution she believed she needed, but almost certainly one that would enable her to at least continue her search. Now, sadly, that option has no further value for her.

The value that we clubbies stand to gain, I believe, in building relationships across many states and countries, is a vastly larger set of possible solutions to put on, try out, that may indeed provide many others with solutions we may not believe we want, but cannot be sure if we don't even know they exist. They might in fact be solutions that change someone's life.

But we cannot know if we don't enter the conversation. What are you waiting for? Come on in, and let talk.

Sunday, July 18, 2010

Farm Fresh, and Out of Reach

So, I went with my Significant Other, and the two poods, to the farmer's market this wonderful AM. So many good things, all in one place that is NOT lit with florescent lighting. You know, some people have never actually seen the true color of a tomato, I swear. I lost count of how many people I heard exclaiming stuff like "Can you believe the color of this thing," and "So that's what an apricot tastes like. Amazing." Having grown up on a Mid-western farm (a series of them, actually,) the only thing that surprised me is how early the fog lifted today. Beautiful day, I must say.

So, toting my strong and colorful shopping bags, and poppin' with moolah (cash only, folks!) I went out among the scurrying shoppers like an icebreaker in Baffin Bay in mid-January. The feet started out just fine, the knee, well, not so much, but I was determined! I was NOT going to let anything spoil this lovely morning, not even the little old ladies of indeterminable ancestry shoving their way toward those incredible plums that had just drawn my gaze and my food lust. They didn't merely elbow their way past me, and several other poor slobs, they flat out DOMINATED their way to the vendor's tables. And there were three freakin' tables!!

But, I was not to be deterred. Being considerably taller than these elvin daemons of the market, I just reached over the top of them. And I was doing pretty good, at first. But one of them, I think it was the 90 year old one (as opposed to the 89 year old one) did what amounts to a body slam, and stepped right on my left foot. Now, I know what you are probably thinking - we were sanctioned for a twelve-round rematch on the Discovery Channel. But, well, no. I merely said, hey, watch it, and she turned to me and gave me this look that I am sure cursed my entire family line going back to Charlemagne.

When they finally left, muttering something about rude boys going to hell, I finally stepped up to the plums, only to discover they had swiped pretty much the vendor's entire plum stock. I looked at him beseechingly (always wanted to use that word - yippee,) and he just shrugged his shoulders. "They like to make plum jam." Oh, really? And how often might that occur, I asked, with an ironic, "oh, yeah" so I thought. He shook his head, "Every week," he said. I decided to avoid this vendor in the future.

But when I went for the nice ripe heirloom tomatoes? It seems they also liked to make and can pasta sauce. I could not freakin' believe it! Anyway, by the time I finished picking over the dregs, and made it back to the car, my feet were screamin', my temper was in shreds, and the damn fog was already rolling back in.

I'm going home to soak my feet. This was the only thing I could hold in my mind, certain these ancient daemons would not be able to access my own foot tub. It was after all in my own house. With my own water.

My mother-in-law was soaking her delicate undergarments in Woolite. In my tub.

Psh. Nap time.

Saturday, July 17, 2010

A World of Hurt - Clubbies Around the World

As someone who is very engaged in looking for news, medical articles, discussion groups, products, solutions, and kittens (oops, you weren't supposed to see that last item, sorry) related to post-club feet, I am struck by the rather significant differences country to country regarding treatment options, outcomes, etc. And I am not only speaking about the physical ramifications we all face, but the social and familial impacts on people whose only fault was to be born with a disability. Some countries, whether on the Asian sub-continent, or in Africa, or South and Central Americas, either cannot afford adequate treatment, or worse, simply ostracize and even abandon children born with club feet.

But lest we in the Western cultures think we are immune to biases against handicapped people, I recently picked up this little item on my myriad Web travels:


http://www.timesonline.co.uk/tol/news/uk/article669212.ece

From The Sunday Times
May 28, 2006
Babies with club feet aborted
Lois Rogers
"MORE than 20 babies have been aborted in advanced pregnancy because scans showed that they had club feet, a deformity readily corrected by surgery or physiotherapy.

According to figures from the Office for National Statistics covering the years from 1996 to 2004, a further four babies were aborted because they had webbed fingers or extra digits, which are also corrected by simple surgery. All the terminations took place late in pregnancy, after 20 weeks."

Now, lest you think I am a staunch anything, let me assure you I am a firm believer in a women's right to choose for herself. But what this, and a number of other articles seem to be saying is that the decision is being urged on parents, by doctors. Doctors! Medical professionals who supposedly took the Hippocratic oath. Now, how am I going to approach this issue? Hmm. Ahh, hmm. OK, ARE THESE BOZOS NUTS? How on Earth can a doctor, who should know that club feet is not the same as, oh, the fetus being so damaged that it puts the mother in danger, or won't even survive the birth process, be allowed to remain in practice? This isn't even a case of whether one supports or is totally opposed to the practice of abortion - it's a case of criminal idiocy! As much as us clubbies have chronic pain and associated issues, we are at least here to talk about it. When I hear about cases of children with club feet being abandoned by their parents in third-world countries, I am deeply saddened, but this practice, of not even understanding conditions that are amenable to treatment, that are well documented, well, this is beyond outrageous. It is, if anything, further evidence of selective knowledge. If the parent makes that decision based on what the doctor misinforms them about, that doctor should be sued, stripped of license, and put in hobbles, preferably welded in place.

Now, I am not trying to enter into the pro-or-con debate on abortion here. I am condemning the doctors who counsel such on the basis of clear and dangerous medical ignorance. I think I have made that bias quite clear as it applies to the outcomes many of us clubbies have to deal with. And I feel this position is entirely consistent - either doctors are acting in the best interests of the health of their patient, and applying not merely the knowledge they (hopefully) gained during their educations, but using their minds to inquire beyond the mere literature and into the frontiers of new treatment, or they are doing none of those things, and need to try out for a ditch-digging position. If there is indeed severe genetic damage, that endangers mother and/or fetus, that is one thing. But there is nothing, ANYWHERE IN ANY MEDICAL LITERATURE even suggesting talipes equino-varus poses any such risk. To counsel such a thing on not merely a fallacious basis, but a clearly non-existing one, in patently insane.

Please, someone, anyone, especially within the medical professions, tell me I'm wrong. Because while I know from experience there are ignorant people who are frightened by anyone handicapped from being anywhere near them, I would never advocate for abortion of fetuses suspected of harboring such ignorance in order to rid the world of same.

I'd rather just laugh in their faces.

But I am NOT laughing about this.

Friday, July 16, 2010

Parallel Syndromes

Post-club feet can be characterized best, I believe, by chronic pain in and around prior surgical sites, whose intent was to "correct" talipes equino-varus deformity, but whose subsidiary effect was to create a steadily building cascade of arthritis and soft-tissue strain. I suspect, if anyone takes up the banner to more closely, and one would hope, scientifically study this syndrome, they will deepen and clarify said definition. Until then, it will have to do.

But I have recently had brought to my attention at least one other parallel syndrome, whose characteristics are remarkably similar to post-club foot syndrome - post-hip dysplasia. I am as far as I know adding the "post-" to the term, but it appears apt - this syndrome is experienced by adults who, as children (of course) were diagnosed with and treated for hip dysplasia. The similarity is what such adults have come to experience - early onset arthritic changes to their hip joints, with of course accompanying pain, and facing the prospect of the need for early total hip replacement. This is occurring in people as young as their early 30s. And it appears that, as in post-club feet, there is remarkably little in the way of studies, or searches for alternative solutions, and, sadly, no apparent feedback loops from the adult orthopedic doctors back to the pediatric orthopedists so that there would even be the possibility of seeking improved treatment options based on long-term outcomes.

You see what I mean by parallel?

Thursday, July 15, 2010

Ponsetti vs. Everything Else

Going off two studies - the Dobbs study, and the Ponsetti study, both being about the only reasonably well done, as well as very honest studies available(willing to challenge their own biases,) it is striking to see the different conclusions. Ponsetti, following up on patients treated with his methodology, show positive outcomes with greater frequency, whereas the Dobbs study, following primarily patients treated at his own hospital setting, found negative outcomes more prevalent.

As the Ponsetti method is the far more conservative approach, and with clearly better outcomes, why is it this method has not been fully embraced by the pediatric orthopedic community? It is my understanding there is another study underway re: Ponsetti outcomes, and I suspect it will further lend weight to that method.

But for the rest of us, this is entirely academic - Ponsetti can do us little good, except to let us know there will be fewer adults facing what we currently do, which of course is very promising. But despite all this evidence, there is still no evidence the orthopedic community considers post-club feet to be a specific issue - they are glad to fuse, or do additional soft-tissue surgeries in response to symptoms, but there is no study, no one trying to look at these issues in a comprehensive manner, with acknowledgment they are looking at a very specific syndrome.

I have sent emails to several orthopedic surgeons, including Dobbs, addressing these questions, with no response to date. I wonder why that is?

Wednesday, July 14, 2010

Seeking Outreach - What to Do When You Aren't Sure What There Is To Do

Clubbies come in all shapes and sizes. They also come from different circumstances, just like everybody else. Different cultural, socio-economic, self-identified groups. Not to mention different countries. So much of what shapes each of our success and experiences with post-club feet is essentially already in place upon our arrival on this small blue orb. Our family's circumstances, support or lack thereof from the culture around us, social biases, the innate cruelty of many children toward anything "different," all go into shaping our own self-perceptions and therefor impact us for much of our lives, for better, and often, for worse.

Then there is the long-term psychological impact of living with chronic pain, of seeing your feet as prisons, impositions, roadblocks, etc. These are real issues, they can impact us in many ways, some quite predictable, some not so much. Physical pain always has a psychological impact when that pain is chronic, and the longer one's search for solutions go without answer, the greater that impact will be. When soldiers came back from WW II with psychological problems, they were told to "be a man" get over it, don't be a malingerer. Vietnam only barely opened the door to a different understanding, soon to be called PTSD - post traumatic stress disorder. Today's returning soldiers are better diagnosed, better treated, and more accepted by society around them.

Many clubbies also suffer from a form of PTSD, especially those who suffered at the hands of other kids for their "difference." Yes, this was not confined to clubbies - any kid who differed from the perceived "norm" often found the same reaction. But I am focused here on clubbies, because that's what I am, and can only justify my experiences around that central truth. While few have the extent of PTSD that war can cause, it's there, nonetheless. And there are things that can help cope with the effects, help develop understanding and self-acceptance, help put our pain in perspective. We need to acknowledge that pain affects us at all levels, not just physically.

Finding a psychologist or other type of counselor can seem frustrating, but is worth the effort. I tend to suspect those who want to medicate me right off the bat - I want the person to show me they can get in synch with my experiences, my issues, before they start suggesting drugs. Even if there is evidence of depression (now, wouldn't that be a surprise?), I want them to show some fundamental understanding and compassion for the forces that shaped me thus far. And its important to realize there is no shame in seeking help - it takes the strength to admit one needs help if that help is going to work.

The issue many of us clubbies face is the sense of isolation, that we seldom if ever meet another like ourselves. Forums, discussion groups, blogs like this one are slowly changing that isolation into something we can deal with, but the long-term effects of our disability is no simple thing, easy to shrug off. Its there, its real, and its impact can range from minimal to profound. We have already shown we are capable of shouldering the burden of chronic pain. We should also be able to shoulder the opportunity to make some changes in what continues to shape us.


A Reminder:

The Comments problem is persisting, so remember you will need to probably send it twice - the first time it will send without asking for Word Verification, and then it will bounce back to make you enter the word, so don't just close the window after entering any Comments. Wait a few moments to see what comes back, then you can respond appropriately. This appears to be a Blogger-wide issue right now, and hopefully (are you guys listening up there?) they will have it fixed soon.

Thanks for your input, and for your patience!