Some Musings on Isolation

"It wasn't until I began to encounter other clubbies on the Web that I even knew there were others out there like me." This isn't my quote - I've been the lucky one, I think - I've met quite a few. No, this quote came from another clubby who asks to remain anonymous, and I will respect that, and I understand why he asks this of me. In fact, I have now seen quite a number of clubbies make similar pronouncements - how alone they've felt, how isolated, how "I must be the only one who has these problems."

First off, let me assure you, all of you, that this is not true - there are literally hundreds of thousand of fellow clubbies out there across the world, and far more than you might imagine have very similar issues - chronic pain, shoe and orthotic problems, the "skinny calf" issue, but more than anything else, the sense of isolation. I have given this particular issue many years of thought. In fact, I've spent more than thirty years working with a psychologist on the various issues related to my experience growing up and living with club feet. Believe me, I had no idea how much material I had to work with until, well, I started to work with it. And I believe I can offer at least a couple of insights.

If any of you have spent any time at all on the discussion groups, you will see posts from parents of new cubbies. All parents worry about their children's health, of course. But people who learn their child will have a disability are more worried than most - dealing with raising a child is hard enough without also having to cope with special needs, and even more, a daily concern for their child's present comfort and future happiness. They seek the doctor's assurances their child can be cured, fixed, made "normal." With some disabilities, such comfort is not possible, due to the either extreme nature of the disability, or the shortage of actual interventions available for their child's condition.

But with club feet, it's a different situation: doctors are able to make the feet look "normal," that is, sole of the foot flat on the ground, and looking like a foot, not like an ancient Scottish golf club. So the doctors, wanting to make the parents feel better, tell them that of course, their child will be normal. And they keep telling them that until the child is grown, and released from their care. And as the child grows, their doctors and their parents offer on-going reassurances, that, despite all the hell they may experience at school or with their peers for being the "different one," this too shall pass. Then, the child is an adult, and many soon learn, some later than others, that there is nothing about their feet that is normal. Shoes? Not normal. Sports activities? Maybe for a few, or for a while, but eventually, well, forget it. Want to dance with your spouse on that twentieth anniversary? What are you willing to give up for the next week to pay the price for that wonderful evening?

Too harsh? I wish it was an exaggeration, but unfortunately, I have heard all this and more from fellow clubbies, and it reflects my own experiences, as well. But what about that isolation issue we were talking about? When we grow up being told we will be normal, and then have to admit it just isn't the case, we have to deal with a number of realizations that are not very pleasant to come to terms with. One is (and while I don't believe this is a conscious flash of insight, I do believe it shows itself in some very distinct ways,) we feel we've been lied to. We may feel we are to blame for having failed at achieving this long-promised "normal" state. We may think we did something wrong to make our feet "revert," or collapse, or whatever words we formulate to try and explain the disparity between what we were led to believe and expect for our futures, and the actuality of our experiences.

But there is another factor at play here, one that is very hard to see, but that I believe has the greatest influence on our thinking about our post-club feet. Because our feet have been made to look "normal," unless we are consigned to shoes with braces attached, our condition is, in essence, invisible. Unlike someone with, say, cerebral palsy, there may be no outwardly discernible signs of our disability. This has a dual effect - on ourselves, and on those we encounter through the course of our lives. For us, we want to be normal, we want to be able to do the things we see others doing, have the same kinds of fun, and consequently push ourselves to do things we maybe should not.

My example? Well, at least one (there were far too many to bother you with.) I once walked the entire Lost Coast of California, 45 miles along the beach between the mouth of the Matole River, and the tiny burg of Shelter Cove. This is the longest uninhabited coastal stretch of the State, and is for most hikers a three to five day journey. And usually, no one does it alone. Most of those people are admittedly smarter than me. I took nearly ten days. I only had food for six. On the second day out, I slipped on a rock while crossing a very swollen creek (springtime is not the smartest time to do this) and sprained the holy hell out of my ankle. Needless to say, I didn't prove anything to anyone except how foolish I am capable of being.

But I did that, and all those other things, because I wanted to prove (to who? hell if I can remember now - it was nearly forty years ago.) I was normal. Notice I did it alone? Not much proof in that, eh? But, that was part of the isolation I kept myself in. You see, if I had asked someone to go with me, I would have been forced to reveal my terrible secret - that my feet weren't "normal."  But how does this affect others in our lives? In many ways, I've come to understand, but mostly through their unconscious sensing there is something we clubbies are holding back. We, many of us, that is, seem to feel it is, if not impossible, at least very difficult, to talk about our feet and their pains and limitations, so we don't. Despite the fact we continue to experience our feet hurting, and despite keeping mum about them. It is hard to see this at work, but we may feel it by sensing it is difficult for us to build new connections, especially as we get older. Which merely deepens that sense of isolation. Which can in fact lead to depression.

Now, I am certain this does not apply to all of us. But the input I've gotten, both on the Web and in person, with other clubbies, is that this isolation is fairly common. Because lets admit it - if we grow up thinking we are the only one feeling these things, because how do you meet other clubbies in public, if their disability is as "invisible" as yours, well, why talk about it with people who can't understand your experience?

Let me ask you all a simple question. This is my own experience, and I wonder if it may be at least in part, yours. Most people have fantasies - sexual, financial, super hero, whatever. Mine? To have one day, just one, where I get up in the morning, put my feet down on the floor, get up, and go about my day. I come home in the evening, make dinner, maybe see a movie, snuggle with my honey, and hit the hay. Here's the fantasy part - I do all this, just for one day, and I do not once, and I mean once, ever even think about my feet. Oh, I occasionally think about winning the lottery, because I have better odds on that one. But that's about as far out as my fantasies go. Pretty dull, eh? What's yours?

By the way, earlier I alluded to "hundreds of thousands of clubbies," and you probably wonder how I came up with that? The number is actually quite a bit larger than even that. Here is how the calculation works: club feet occurs in 1 in 750 to 1000 births (the lower number applies to a few Third World countries, sadly). There are approximately 285 million people in the US alone. That means there are roughly 28500 people just in the US with post-club feet. This is not counting recent births, immigrants, etc. Do the same calculation for other countries, and the numbers get pretty high. Since the current estimated world population is over 7.4 billion, the number is roughly 7,400,000.

See, you are far less alone than you imagined:-)