Did you ever see the Lord of the Rings films/ Remember the climactic battle between Gollum, Frodo, and Sam, over the Ring? Remember how Gollum leaps onto the then-invisible Frod ('cuz he's wearing the ring, right?) and wrestles Frodo, while appearing to be riding on top of air, basically, before biting the ring (and Frodo's finger) off and raising it in triumph? Well, that's what it can feel like sometimes, dealing with all of the life-long joys of post-club feet. And I'm not merely speaking of the pain, the doctors, the recovery time, the shoe issues, those skinny calves. I am also speaking about the toll all of those things take on our emotional well-being.
Most clubbies learn very early in life that they are "different," especially if they have siblings who don't share the numberless visits to the clinics, the braces, the casts, the braces, the casts, the way parents treat you differently than they treat your sibs (even if they try really hard to treat all their children the same, it really doesn't convince us there is no difference - we can see how what we go through differs from the bro and sis. They go skiing, or engage in some sport, and even if we have the same opportunity, well, it is just different.. Now I am not trying to say, by the furthest stretch of the facts, that our parents don't love us, and try their damnedest to give us every opportunity. But there is no avoiding the fact that we are different, and there's also no avoiding the fact others perceive us that way. At the very least so when we are kids. Other kids, for example, are the best (or worst, depending on perspective) at zooming in on other kid's differences. And many are even better at sticking their proverbial fingers right into the most painful parts of our emotions. And this applies if the difference is as simple as, say, being the only redhead in the class. So it's not like they just single out clubbies.
But clubbies, as with nearly every other kid with a handicap, are the usual targets. Let's face it, we tend to stand out. Funny shoes, maybe braces, maybe limping occasionally, whatever. Kids have this sad habit of teasing, sometimes bullying, anyone they perceive as different. So, we get that.
But along side this social outcast stuff, we get this other message, from the doctors, mostly. But also from our parents, because that's what the doctor's told them, and so it must be true. I am speaking of this notion that we can be, that we will be, that we are now and forever "cured," "corrected," "normal." You have read other posts here (I hope) where I take great issue with this falsehood, so I won't put you through another round of that. But it does occur, and I clearly get why it occurs - it's what everyone wants to be true. And because the pediatric doctors drop us off into the "see ya later, kid, good luck" zone when we hit about 16, they (hardly) ever see the truth - the real truth - of those assurances. Yes, for some clubbies, it (seems to be) the case, that we are cured, normal, corrected (so far). But even kids who were lucky to have the Ponsetti approach have not been followed, in my opinion, long enough (the one substantial study followed to around 30 years of age a sizable number of Ponsetti-treated folks), and by the Institutes own admission, there are some kids that do not respond favorably to the method alone. Yes, many have less scar tissue because they have no, or at least very few, surgeries. But they still have the same atrophy, they have the same potential for poor joint alignment. So, these assurances, even when there might be some evidence to support them to some variable degree, do a grave disservice to our parents, but mostly, to us.
When the chronic pain and other issues finally surface, for that percentage of clubbies who weren't so lucky, the emotional toll can be high. Maybe it is our fault. The doctors said we were "cured," so maybe I did something wrong. It has been my experience, and apparently the experience of some other clubbies I have spoken with about this issue, that we tend to fall into a sort of behavior best characterized by denial and defiance. Denial there is really any problem, and defiance by setting out to prove we can do anything anyone else can do. The result for some is refusal to believe we are in fact handicapped. Until, one day when the pain just will not take no for an answer, we are finally forced to admit we've been lying to ourselves, and by extension, everyone else in our lives.
Let me remind everyone why I use the term "post-club feet" again. We clubbies face a very similar situation that polio victims began to face starting thirty years or so back. All their lives, the doctors (again, believing it was the correct course, without having any long term studies to support the theory) told them, as kids, to rely on the apparently unaffected limb, to exercise that "unaffected limb" as much as possible. And so, that is exactly what they did. But, somewhere in their thirties, forties, or fifties, (it is quite variable, just as it can be with post-clubbies) these people began reporting symptoms that were initially thought to be a recurrence of the polio. But alas, that was not the correct diagnosis.
It turns out these folks were merely still being affected by the virus they had originally contracted. You see, the doctors had mistakenly assumed that because in some instances the polio only affected one leg, or one leg and one arm, that everything else was "normal." But it turns out the polio virus attacked ALL the myelin sheathing, not merely in those parts of the body where the effects were visible. So in fact, this advice to use the (apparently) unaffected limb more aggressively, to compensate for the damaged limb, was precisely the wrong advice. What they should have been telling the polio victims was, you need to take it easy in your life. You need to not overdo your physical activity. Because the advice merely caused the slow and steady deterioration of the "good" limb. Thus, this became known as "post-polio syndrome."
Post-club feet, therefore, fits what we clubbies, as adults, have and continue to experience. We were not "cured." I know that what I am about to say seems harsh, but I have learned over the course of my life that, given the choice between sweet somethings and hard truth, I'll take the hard truth. Because then, at least, I can know to start seeking answers, without feeling like it was my fault, without feeling guilty, that I might "disappoint" my parents, or the doctors. The hard fact is, our feet were altered. Not cured. Altered. Because they clearly did not look or work like the "normal" feet, medical science wanted, for good reasons, of course, to try and make them "normal." But getting the sole of the foot to face the ground, or, to make it plantigrade, should not have been the only goal. But this initial goal failed to take into account all the other aspects of both biomechanics, and the full extent of the effect of tallipes on the human organism. Like muscle atrophy. Like not always ideal alignment of joints. Like the impact of accumulated scar tissue over time.
So, what does all this mean? It means, for one thing, we face both physical AND emotional issues, throughout our lives. I learned something many years ago, when I found out that Dudley Moore, who had club feet, was also a severe alcoholic. I didn't put the two things together on my own, however. I had an opportunity to meet someone who had known Mr. Moore, who, when I told him I had club feet in common with Dudley, told me that Dudley was in constant pain. It made me go back to watch several of his movies again, and I was able to look at them from a very different perspective. You can see this for yourself. Rent several of his films, say, "10" or any of them, really. Watch Dudley walk. Look for scenes where you can see his entire body, and notice the shoes. Yes, he did wear lifts, because he was insecure about his height. But watch him walk. This was not the walk of someone simply wearing lifts. This is the walk of someone who is constantly tensing his limbs against pain. I realize that, after twenty-plus years in biomechanics, watching thousands of people walk, that my eye is better trained than most. But you can see this in Mr. Moore's walk, because it is so pronounced in his case. So, why should anyone be surprised he was also an alcoholic?
This is a long and difficult topic. I know - I've been dealing with it for 58 years now, with more than thirty in therapy to deal with the emotional impact - -bullying, false beliefs (hey, I'm not handicapped, let's walk to the bottom of the Grand Canyon and back, what say? ((yes, I did do that - and I paid a steep price.)) (ya know - I only just realized the pun in that!) and more - much more.) So I do not expect to fully plumb the depths of this topic, not here. But hopefully, this will start a conversation. Here, yes, but more importantly, with yourself, your partners, your friends, your children. The day I was finally able to admit to myself that yes, I am handicapped, was like being hit by a truck. I don't mean I did not know I had some problems with my feet, I mean that, I refused to admit those problems could ever slow me down. They could not, would not, define me. But admitting I am in fact handicapped did not define me, either. It simply made me better able to accept my limitations, and begin healing those parts of my spirit that were taking on heavy damage from years of denial.
I hope this has been helpful. And I hope you find a way to be kinder to yourself. It isn't your fault you are not "cured." It's just what you have to deal with. But it is not your fault.
