A Thought Experiment Regarding PTEV Syndrome

First, let me just say this post is a prelude to something I suspect will take much longer and far more detail to explore, but wanted to get the raw idea down before it slips from my increasingly ephemeral mental moorings. You have heard me talk about the issue with our lower leg musculature, how the cell structure is radically different than in non-clubby legs. What has only just occurred to me, in thinking about this at some length, is that the very act of changing/altering our initial TEV toward a plantigrade position, through castings, bracings, and surgeries, may be setting us up for future pain issues because of the very nature of that cellular deformation.

If we look at how muscles work, by stretching and contracting to provide motive power, it is clear there is a level of elasticity that is critical to those functions over the course of one's life. If the elastic nature of these muscles is altered, that is, less elastic, then changing the position of the bones acts to alter the oppositional nature of the muscle groups, as well. This means that some of these muscle groups are likely to be subject to more stretching while the opposing group becomes more contracted, while at rest. In a normal muscle, such a change would be offset within a short period by the ability of the muscles to strengthen and grow. But if our muscles, already atrophied at birth, cannot grow or strengthen as readily, and as seems obvious for some clubbies, not at all, then there is less ability for the muscles to make those necessary adaptations.

This would suggest that the kinds of muscle pains (not joint pains, specifically, but in the muscle bodies themselves) some of us clubbies, especially as we age, experience may be the result of this musculature aspect of post-club foot syndrome. This non- or less-elastic nature may also explain why there is the propensity in some clubby children for regression of the positional aspect of the syndrome, where additional TALs are performed. If the original tendon lengthening or repositioning proves insufficient, perhaps it is not the amount of change that is the issue, but the act of making that change causing even further reduction of elasticity within the muscle body itself. By increasing the posterior group's length, the anterior group is thereby shortened. Both muscle groups, then are being forced to perform something they are poorly suited to perform.

This requires far more research and analysis, of course, but I wanted to put this out to stir the waters and get it down for further consideration.

Mind Shift Ahead!

There is one thing more difficult than dealing with chronic pain and the awful responses we clubbies get from the medical community - our own attitudes and beliefs. We as individuals are shaped by many factors besides our experiences as a clubby. Our communities, families, peers in school, media, the times we grew up in, our country, etc. So our beliefs - about ourselves and the world we inhabit - are often quite difficult for us to challenge and change. After all, we want to be a part of our community, and we already battle how our handicap separates us from that community. It might center around our need for AFOs or different-looking shoes, when we would greatly prefer to mesh with the fashions of our time and locale. Or it might center around how our handicap and the attendant chronic pain limits our participation in activities with our families and friends. It may also be strongly affected by our financial conditions that limit our options for responding to our pain and medical needs.

But however it affects us, we each have to find ways to respond to those forces in the best ways we are able. For some of us, this means often denying we even have a problem, while for others it means dealing with depression, or worse. However we do so, our main goal often appears to be to find ways to avoid dealing straight-forwardly with the fact of our handicap. After all, who wants to have to spend so much of their lives having to deal with this? We would all rather be doing better things, like living life the way our friends and families do.

Denial, however, has no positive impact on our pain or possibly worsening condition. We ARE clubbies - this is an undeniable fact. Thus, we need to shift our perspective, to admit the truth of our condition, and make our lives work with this fact fully incorporated in our daily concept of our self, and how we live this life. This does NOT mean that we do whatever the latest medical consultant tells us we need to do, because we, or at least many of us, know how little these people actually know about our condition. "Well, we COULD do...." is NOT a good answer to our needs. Yet we are, like most humans, conditioned to trust and believe whatever a professional tells us, especially in the field of medicine. The problem is, doctors are themselves conditioned to believe they are always the  expert, and therefor MUST know what the hell they are talking about. They, sadly, are often even worse at challenging their own beliefs than non-professionals are.

But we need to struggle against that tendency. We need to challenge such ideas such as whether to pay for a more expensive alternative that has the potential to really make a difference, or settle for the cheapest alternative that may only make a small difference, or only for a brief period of time. We also need to challenge our desire to wait for the insurance provider to be willing to pay for something, versus biting the bullet and finding some way to pay for it ourselves, rather than forgoing real relief. The truth is, accepting some bureaucrat's NO as something you have no choice but to be limited by is the same thing as doing nothing to help yourself find relief. I have always paid for my own custom shoes myself, both because I know they are the best thing for me, and because fighting with the cretins at an insurance company once was enough. Now, I get what I need myself, rather than allowing myself to be limited to bad decisions by ignorant people.

But I do not pretend this is easy. Money is tight, and coming to such decisions requires information that we may not have, or may not fully understand or appreciate. But the first step to real change is making the decision to not take someone else's NO for an answer, on any level. First, you need to decide, once and for all, that your needs matter more than someone else's limits based on their ignorance. Once you get to that understanding, the rest becomes easier. But you have to get to this first step first. Ask yourself this: "Why do I think I am not worth putting me first in my life?" Then ask, "Who tells me that?" And finally, "Why have I chosen to believe such lies?"

Shifting belief is not easy, and can be quite frightening for some of us. But we cannot avoid this forever, unless we are content to be a victim of the ignorance of others, and captive to the pain and limits you face every day.

It's your choice.

The Limits We Face

This is something I recently posted on the clubby FB group:

To continue the discussion on limits, I think we all need to remember that having limits is not to be equated with being inferior, or less-than. It is easy to fall into an unconscious response to our differences as a sign we are somehow worth less than other people. So much is made in our societies about being a "winner", a high achiever, about physical perfection, about what constitutes "cool." But these are all artificial ideals, and often serve to enforce class differences, rather than say anything true about any one person.

When I deal with my differences, and experience an adverse or somewhat muddled reaction from another person, I have choices in how to deal with their reactions and responses. I can choose to be upset, self judgmental, and depressed. Or, I can use the occasion to educate the other person, or to let them know they may need to seriously reconsider their own values by how I respond. I always feel like I exercise as much control over the situation as the other person, specifically in how I choose to respond. It is likely such people are anticipating that I will have a negative response, or self-damaging response, to their ignorance. But I usually find if I take the opposite approach to what they seem to hope for, I can nearly always fully control the outcome.

My feet may be screwy, but my mind is just fine.

 

How about you? How do you deal with your limitations, especially emotionally? Do you beat yourself up, or struggle to accept seeing yourself as having a handicap? Or have you lept over that chasm and landed intact on the other side?