My Wife Went to Carnivale, and All I Got Was This Lousy Chair

Staying home again...you know how it is. The spouse wants to go to Carnivale, where you have to walk 20 blocks just to get near the parade, then stand and cha-cha for hours, watching your kid or your neighbor's kids in the middle-school samba party selected for the twentieth space of the parade, then shuffle back through the hoards to find your car, or wait for the trolly, whichever. And you used to go with your spouse, until that last time when the pain was so bad you walked home on your hands (and you had never walked on your hands once in your life,) but that was better than scootching home on your butt. So now, you stay home, and spend six hours in front of the computer in your on-going search for the best scooter at the best price, and wonder when you will finally give in and get the damned thing.

I find it puzzling that I even need to justify such a purchase, not unlike the mental gymnastics I went through on that whole handicap placard question. You know: There are many people already in wheelchairs who need them, and I can still (sort of) walk. Man, was I stupid - or perhaps just overly stubborn, who really knows. But here I am, realizing that staying home all the time is just plain warped, as though it were some virtue. Oh, for crying out loud, man - get a clue! Just call me slow on the uptake, I suppose.

But the reality is, you aren't merely getting a scooter - wait! There's more! Yes, much more. First, if you have steps, you need to build a ramp, unless you live somewhere they actually have garages, which we don't. So - a ramp means altering the front yard -  all 8 x 18 feet of it, which in my case means no more plants in the front of the house, which is pretty sucky, ya dig? Which means a serious negotiation with the esposa, that I promise you is going to be epic. Then, you need a lift for your vehicle, as you need some way to carry the scooter when you are going more than several miles from home. There's another $400-1000. Ain't this grand?

And as for the scooter itself, well, that is where the fun truly begins! You want a three-wheeler, or a four-wheeler? One is better for outdoors, and the other for indoors, so if it looks like you just can't do much walking at all, then three wheels is for you, because the turning radius is shorter, meaning you can maneuver it around the old abode easier. But if you can still walk around the house OK, then go for the four-wheeler because it is better for the outdoors, and some models will handle off-roading better than a Willy's in four-wheel drive. And Sugar Magnolia, to you, too!

Then there is miles-per-charge - the greater the range, the higher the price, it seems. And carrying capacity - that is you, your groceries, and Spot all together, so keep in mind what you plan to do while you are out and about. If you like going to big street parties or Disneyland, plan for the higher capacity, because you know the grandhoppers will be tuckered and think of you as the bus. Just sayin'. And don't forget the accessories - most come with a nice old-fashioned wire basket to hang on the front for shopping. But then there are the rain covers, the locking back trunks, the three-toned horns, and those plastic streamers you add to hang from the handlebars, just like when you were a kid. I kid you not!

Anyway, the spouse came home with glitter painted on her face and looking blissed out. I, on the other hand, merely had a glazed expression, not unlike a doughnut. And no churros for me.

Another Window on the Issue of Pain

Pain, especially chronic pain, and even more especially bone-deep chronic pain, is not just one thing. It has many variables, solicits many reactions, has multiple dimensions. This is why it is so difficult to manage, and everyone who experiences it knows that the best you can hope for, most of the time, is to manage the pain. This kind of pain, as most clubbies come to learn, is never really just going away.

Perhaps the most difficult thing is to successfully explain such pain to others, especially to doctors. They are quite fixated on their vaunted 1-10 scale, with all the happy-to-miserable faces, as though all pain can fit such a system. They seek objective measures for a subjective reality, and while this might suit sudden-onset, short-term types of pain, it hasn't a clue when it comes to life-long chronic pain, bone-deep or otherwise. This also, I believe, explains why pharmaceuticals fail at dealing with such pain, because they are designed to target how the brain processes pain with little regard for where the pain is being generated,  which for us is in our feet and lower legs. And it also explains why some clubbies are now exploring and seriously considering amputation as a real long-term solution, for which they have ample justification.

Of course, amputation has its own issues, but bone-deep pain isn't one of them. But besides the bone-deep chronic pain, there are other types that occur with post-CF feet. There is compensatory pain - when our ankles, knees, hips and back begin to ache and scream because our biomechanics are completely screwy, and nothing is acting the way it should, our symmetry is shot, and our bodies are trying to find ways to ambulate without making our inner balance complete garbage.

There is the pain we get when our arches cramp, our calves seize up, our toes get corns from being hammered and press against our shoes. There is the feeling of our feet being in traps all the time, because we need all that tight support to get through the day, and when we take those tight shoes or boots off at the end of the day, or remove our AFOs, we scream from the effort our muscles and joints have to make merely to relax. It's almost as if we are better off inside those traps.

Essentially, clubby pains are all about trade-offs. We trade one pain for another, just to shift the pressure, just to take the edge off. An ice-water soak one day, heat the next, pay for a day at the museum by calling in sick because we can't even think about getting out of bed. We get tired of the tight boots and wear slippers all day Saturday, and then pay for this small cheat on Sunday. Trade-offs, but never substantial solutions.

Yet despite this, despite the pain, the half-measures, the frustrations with the medical community and their near-absolute ignorance when it comes to our particular feet, most clubbies I know are driven to enjoy their lives in spite of these awful realities. Some are driven with their love of sports, some are driven by their careers, some merely by the stubborn refusal to be beaten down by the dubious burden they were born to bear. We deal with pain because we must, but we deal with life because we insist on it. Nearly every clubby, at some point in their life, usually after bearing the burden of pain for many years, feels like it will inevitably bring them to their knees. Yet even then, they fight, they demand more of the world, of themselves, because they know something about dealing with life that people who are not carrying such burdens don't know, may in fact never know.

They know there are others dancing the same dance, limping the same limp, who really do get it. Who know that some stupid 1-10 scale is meaningless, who know how to dig very, very deep inside themselves to squeeze every ounce of life out of life. They face the battle with determination, because that is the only viable response. And I am happy to be among such fearless warriors, who help me lift my feet every day.

A Happy Hour, A Happy Life

I spent more than 30 years working with people by working with my hands - making shoes and orthotics, helping people walk better, with less pain, find a little more happiness in their lives. And I was pretty good at it.

But then, my hands went on me. That is, they began to go numb after not much use each day, and would become quite painful. So - it was time to change careers. And give up riding my motorcycle. Never got over either, really. So, things being as they are, I don't get to work with my hands as much as I'd like to. Until a few days ago.

My shoes had worn quite a bit, and my usual guy is now 86 and no longer doing the work - in fact, I'd been urging him to retire since he turned 75, but shoemakers are a stubborn lot. Fact, yeah! So, I went to my old colleague Arnie Davis at Davis Foot Comfort Center here in SF, and he just pointed at the shop and said, "have at it." So....

I spent two hours, fighting the numbing, but still - shear joy! As painful as it was, I found my hands and eye have not lost any of the skills I spent years developing. Dust, the smell of shoe dye, the noise level, the strain - none of it detracted from the shear pleasure of making something right again. To build, and shape, and finish to a beautiful surface, to find I can still achieve a perfectly balanced shoe....

If you have not been a maker of things, this may mean little to you. So few people are true makers anymore - it is not very fashionable, especially to have to spend years learning a very complicated and not very profitable skill. Let the computers and the robots do it seems to be the prevailing thought today. But to actually make a thing, especially something that has a use, that changes people's lives, that makes a difference? Well, I feel sorry for the people who don't ever get to know this joy.

I may not get to do such things many more times in my life, but to see that I still have the skill, that my hands, my eyes, my being remembered, acted, created - well, that is worth more than money can ever compete with. That, my friends, is real happiness.

Muddy Waters

A recent kerfluffle between several  clubbies on a to-be-left-unnamed group site showed how once again, there is a conflict between what we clubbies have come to know as the truth about our situation, and what the medical profession continues to misrepresent to the parents of children born with talipes. In their continuing effort to a) not upset the parents, and b) to keep the parents believing that the medical profession has all the right answers, they would have all believe that they can "correct" and "cure" club feet. This is such an insidious construct that even when such parents hear from us, people who have had to endure the weight of that lie all our lives, they react with sometimes angry responses, telling us that we are lying. Even in the face of those who have had to live with post-CF all their lives, such parents cannot abide hearing anything that contradicts the lies they are being fed.

Even with the application of Ponsetti treatment, there remains a failure rate of about 20%. But this, too, is misleading. Failure rate, as measured by both traditional and Ponsetti-focused practitioners, is based on how far the feet remain deviated from positional "norms". This is an important distinction: it affirms that the entire medical establishment focused on talipes remains convinced that positional deviation is the entirety of the talipes condition. The first clue is in the descriptive term itself - talipes equino varus/valgus - each word describes a positional aspect of the foot. Nowhere is there acknowledgment that the condition is other than positional. Yet there is substantial research showing that there are other elements, most notably, the distortion of the muscle fibers of the lower leg, that contribute to, attend, and potentially point more concretely to a more accurate etiology. The continual willful ignoring of this and other issues that are raised by both research, and by the actual life experiences of post-club feet sufferers by the medical establishment speaks volumes, and merely makes the divide between truth and fiction ever larger.

While I do not in general blame parents for wanting something positive to anticipate for their child, I find it beyond bizarre how, once faced with this new information, there remains a desperate desire to remain ignorant of the truth. However, it is their problem to deal with, not mine. I will continue to shake the trees of the medical profession until at least one reasonable professional emerges to start facing the realities we clubbies face, and who is willing to begin grappling with the true nature of club feet.

As for those who feel insulted by the use of the term "clubby": I will continue to use it, as a reclamation of the truth of what I endure. Those who object to this term are free to not use it. It is basically that simple.

 The following is an excerpt from a publication in the © 1981 British Editorial Society of Bone and Joint Surgery 0301 -620X181/30S6-0417

A HISTOCHEMICAL STUDY OF MUSCLE IN CLUB FOOT
D. H. GRAY, JUNE M. KATZ
From the Departments of Orthopaedic Surgery, Middlemore and Auckland Hospitals, and the Department of Surgery, University of Auckland, New Zealand 

Abstract 

A histochemical analysis was made of 103 muscle biopsies taken from 62 patients with idiopathic club feet. Any reduction in the diameter of the muscle fibres associated with wasting of the calf muscle was recorded. Histochemical abnormalities existing in these biopsies were revealed by comparison with normal biopsies obtained from the normal legs of 13 children with unilateral deformities. No significant difference was found between the diameter of the muscle fibres taken from normal and affected legs aged under six months. This indicates that wasting ofthe calfmuscle is due to a reduction in the number of fibres rather than their size. The muscle structure was normal excluding denervation and reinnervation. The soleus muscle in patients aged under six months contained 61 per cent Type 1 fibres in the affected legs, compared to 44.3 per cent in normal legs. Similar values were found in the normal and abnormal tibialis posterior muscles, long flexors of the toe and peroneal muscles. The change in composition of the soleus
muscle and the reduction in the number of fibres may be caused by a defective neural influence on the development of the limb in club foot.

 The next is the last paragraph of the Discussion:

The development of a full complement of fibres is under neural control in all types of muscle. Therefore defective neural influences on the development of the limb could account for the wasting of the calf and the maturation peculiar to the soleus. It is unknown whether this latter abnormality is an aetiological factor in the generation of the club foot, or merely concomitant with the primary genesis of the deformity in the bones of the feet. Isaacs et a!. (1 977) have also suggested that idiopathic club foot may have a  neurogenic basis. There appears to be increasing evidence that the nervous system is involved in the genesis of club foot, and we suggest that the result of such involvement is defective myogenesis.


It should be noted that this is merely one of 11 such studies I have located so far. There is nearly always a speculation as to the role played in the etiology of talipes, yet there is no parallel response from the same medical community as to how these factors might actually shift thinking, how they might cause some reconsideration of treatment, and most importantly, how they might re-shape how and what doctors tell parents about the true nature of talipes as it may affect their child. The silence, one might be pressed to say, is deafening.