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.
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.
I think the emotional stuff is going to be the hardest to over come. I still find myself thinking, I don't want to do that because it will be so painful, even though I know that with all of the work I have put into correcting joint alignment and muscle use, it won't hurt as much. Lately my chiropractor has been telling me that the pains are just muscle memory, because I am not out of alignment, things are staying in place. I sometimes think that he's just saying in the nicest way possible that it is all in my head. I partly think he is right, like when the pain suddenly comes on when I am doing something that used to cause great pain, other times I am sure that it is just pain, just because, like right now, the muscle belly on the outsides of my feet is throbbing, and I haven't done much at all today.
ReplyDeleteGek,
ReplyDeleteI have had this "muscle memory" theory run past me by several people, as well. Personally, I've come to see it as bunk. Here's why: Our feet are essentially at the bottom of the gravity well. That is, since we can't go through the Earth, our feet are at the point where the force of gravity is at it's highest as far as any Earth-bound organism is concerned. Now, add that fact to the years of pain your feet have gone through. It has been established through much research that chronic pain acts as a feed-back mechanism - the longer you are in pain at any given place on/in your body, the more persistent that pain will be. This results in inflammation, some clearly apparent with localized swelling (edema), and much more not visible, down in the deep tissues. This inflammation has a tendency to keep the pain closer to the surface, by which I mean, more spontaneously generated. All of this is governed by our lymphatic system, which is one of the more simple and one of the more primitive systems in our body. Now, the "on" switch for the lymphatic response is trauma - if you sprain your ankle, all that swelling is the lymphatic system doing it's job - to protect, and to varying degrees, to aid in the healing of the traumatized area. So - pain signal = lymphatic response. The trouble is, the lymphatic system has a very poor "off" switch. Now put the trauma on "continuous" and you likewise put the lymphatic system on continuous. In order to turn off the lymphatic response two things are required - stop the trauma, and trick the lymphatic response into stopping, because it has trouble knowing when the trauma has in fact stopped.
The trouble with chiropractic alignment, vis-a-vis our feet, is that as soon as we rise from the table, we put our feet right back down into the bottom of the gravity well. Orthotics, if they are made correctly, can aid in maintaining joint alignment, but note I said "correctly." There are many podiatrists, chiropractors, and others who cast for, or even make, orthotics for their patients, but there are fewer than you might imagine who fully understand biomechanics who can then apply it to proper casting and proper orthotic manufacturing. I say this as someone who spent many years teaching other orthotists, podiatrists, chiropractors, and others this exact subject.
Anyway, I am saying it is NOT all in your head. The presence of pain is the clearest indicator that your body is experiencing continuous trauma, right there in your feet. The only muscle memory you are having is that your feet hurt this bad compared to some other time when they hurt less or more, IMHO. Try this little experiment (you've probably already tried it, however,) sit with your feet elevated for several hours, to allow as much edema as possible to leave your feet. Then, stand up. If, as I suspect, they still have that throbbing feeling, then you are feeling the edema that is still remaining in your soft tissues. You've heard the saying that two things cannot occupy the same space? Well, the edema is fighting for the better seat against the other tissues in your feet. And it's probably winning. So, you need to find ways to reduce the inflammation. I will try to find some good resources on this issue, and post them here on the blog. Stay tuned.
Thanks so much for all of the info and insight!
ReplyDeleteI often find that when I get the instant pain on the outer part of my feet or arches, as soon as I change how I am moving the pain goes away in literally minutes. If I am at the gym and doing things like planks and or burpies (YUCK!!) the pain will last a while, and usually the only way to stop the pain is to remove my shoes, giving the muscle belly more room to swell.
My chiropractor was very open and honest with me and the fact that this will all be a work in progress and experimentation on treatments, but I was willing to try anything. Most often he doesn't adjust my joints, he does a lot of soft tissue work through active release therapy and the Graston technique. Since seeing him I have had 2 pairs of orthotics, I had to get a new pair after losing 40 lbs, the second pair the arch is even higher than before and has taken a lot of adjusting to get used to, and me focusing on where I put my body weight when I am working out, or just out walking. My podiatrist had added an extra piece to my orthotics to help balance my foot, but that caused me more pain in my lower back, and I was no longer able to do a proper squat while wearing them. When I went back to the podiatrist to have the change removed the girls in the office thought it was silly that I insist on making sure I could do a proper squat with them before I left, they claimed I wouldn't be able to instantly tell that there had been a change made (I feel they were so clueless!). It was my chiropractor who took one look at my orthotics and told me to get back to the foot clinic ASAP!! Now all is well, and things are back to how they were before.
When I first started going to see him, my calf muscles were rock solid in any position, now they are only hard when flexed like they are supposed to be, I think due to a combination of the Graston and a few contemporary acupuncture sessions. I often use ice and heat to control swelling when it is out of control, it seems to be the worst on my it bands and hip flexors.
I haven't been putting my feet up much lately, it's summer, it's hard to stay inside when it's nice out! But will try to make more of an effort, especially on days where I work out.
I think one of the issues we clubbies face vis-a-vis doctors is how they seem to convey different messages. While this is logical as regards their different training, it can be a problem when we are getting treatment suggestions from two or more at a time, when elements of those treatments are at cross-purposes. You end up feeling like a yo-yo, but worse, it becomes confusing as to which treatment is causing which compensatory pain. I have found it necessary to make sure I have a longer window between the various specialists, to help me better evaluate the effectiveness of any particular treatment.
ReplyDeleteAs for the issue of changes to your orthotics, and having (sometimes) radical reactions to such changes, I would offer two things for your consideration. First, most people with (otherwise) healthy biomechanics will have a reaction to changes in their orthotic balance ranging from nothing to speak of, to oh you've got to be kidding me! When clubbies, as with other people with clearer pathomechanics, even the smallest change in balance can cause referred trauma - back, knees, hips - even neck. Because clubbies usually have a lesser range of motion, such reactions can be quite intense. The best way to adapt to such changes is to have two pair of devices. Have the change made to only one pair at a time. Then, use the modified ones for no more than an hour a day for the first week, then increase by an hour each week until you can wear them full-time without any compensatory pains. Simply switch back to the other pair the rest of the time, and then have that pair adjusted once you've adapted to the first pair. Remember - sudden change of biomechanics can be, and often is, traumatic, even if it seems to you like a minimal change, because minimal is a relative term in this instance.
Secondly, its not usually a good idea to have changes made to your orthotics by a doctor who did not prescribe them or make them, as this tends to pit one set of assumptions about your feet against a competing set of assumptions. This almost always makes things more difficult to resolve. It certainly makes sense to get another opinion, but better to communicate that second opinion back to the prescribing doctor for them to reconsider. That way, you don't end up becoming a ping-pong ball.
It may be helpful to know how different orthotics are seen and casted/imaged for by the various specialties. I can assure you there is a great difference. I will try to do a longer post in the near future covering this topic, but here I will just say that difference can be profound. The various specialties have radically different training re: biomechanics and foot orthotics. Having taught and lectured some of these specialties, I can assure you there is quite a difference.
As for the "cluelessness?" Yeah, lots of that. It's easy to lose sight of the fact that you are the one being most affected by the prescribed treatment/orthotic/wetc., not them. I have found few doctors or their staff have anything more than mild biomechanical issues of their own, so their evaluations are colored by their own subjective experiences. Which, obviously, are not your subjective experience. Listen to YOUR pain, not their finger-wagging.
Do you take anything when the pain just won't go away? My knee's, calf's and feet have been feeling sore and tight for days. Usually stretching and foam rolling do the trick, but not this time. I have even tried the elevation trick along with icing.
ReplyDeleteYeah, my left knee and calf is going through hell right now, and I've been forced to go along for the ride:-) I've tried the dilaudid (hydromorphone) the doc wrote the scrip for, but while it can take the edge off the pain, I have to take it too often for it to do any good, and I prefer a clear head, thank you. There are only two approached pharmacology seems to have re: muscle/tendon/ligament pain - anti-inflammatories, and muscle relaxants. I have found the anti-inflammatories of little use, though old-fashiooned aspirin therapy seems to have the best effect over time. Thats a problem if you have a sensative stomach (ulcer, etc.) but I get around that by using enteric-coated aspirin (Ecotrin or a generic version.) But there are some folks who cannot take aspirin in any form, so they are left using NSAIDs, or going whole hog with steroid injections (plenty of downside there, however.)
ReplyDeleteBut when it gets real bad (lots of that, lately) I find the muscle relaxants the best choice. Problem there, however, is I can't use them during the day, as they can interfere with other basic skill sets such as driving, which doesn't help my image with the boss, ya dig? So, I take them in the evening. Best if taken just after I get home form work, as taking them nearer to bedtime can make you groggy the next day.
This is one of the topics, BTW, that I am proposing for discussion on the on-line conference for Club Foot Week - see my newest post.
Meanwhile, soak 'em if you got 'em! :-)
You are so right.Most of the sites on clubfoot especially for parents are misguiding as they say that "your child will lead a completely normal life and the leg wont stop him from anything".It makes me crazy.Yes it will!!!! and he will have to learn to live with that.
ReplyDelete