Demand Some Truth!

"Cured." "Fixed." "Corrected." The three dirtiest words ever for a clubby. Lies, damned lies, evil lies. "Just want to help the parents feel confident." Right. So confident that they later refuse to believe their own child when the child starts really feeling the reality of their club feet. So confident they never question what the doctors have to say until the damage has been done. "Don't worry, Mrs. and Mr. Smith, we know what's best for your child." Easy for them to say - by the time the truth comes out, the statute of limitations has expired. Then Johnny and Janey just have to suck it up and deal with their "corrected" feet. Sweet deal, right?

I realize most parents of kids with CF don't like to hear the hard truth, and I understand why - they just want their kid to be "cured" and live a normal life - whatever that might turn out to be. But if you don't know about the reality - of potential outcomes, regardless of the good doctor's hype, of the differential in each doctor's skill set and what that might mean for your child - then you are likely to watch your child have some very hard times, and feel defeated and angry anyway. But better to be angry at the medical profession for their failures to at least be honest, failures to do the real research that is still being ignored. Be angry for being mislead by runaway egos. But don't be angry at your child when, as an adult, or even while still in their teens, they let you know that even if their feet look "normal," they most definitely do not work that way.

Better yet, get informed. read as much of the info on this site as you can, learn about the outcome studies, and demand the doctors discuss those studies frankly with you, and if they just blow you off and dismiss "your fears," point out that more and more parents of clubbies are learning about these same studies, and demand they start treating you like an intelligent adult. Demand answers - it is your right, and it is for the best of your child's future!

The Difficulty of Committing to Action

Let's face it - we clubbies are for the most part stuck out here on our own. The doctors when they do pipe up are overly-hooked on surgeries that for the most part either don't work at all, or make things worse. Maybe they suggest drugs, but then they have no real idea the nature of the kind of pain we experience, so they really just suggest drugs that numb our heads and shut our mouths. Truth be told, as I have said before, when you hear those magic words, "well, we could do...", run! Because this merely means the doc ain't got the foggiest.

So we can select for palliative solutions instead, some which work better than others, but which you may have to try a great number of different things before finding the one or ones that actually work for you. Even then, they won't work perfectly, or likely for many years, and then you are back on the hunt. It gets discouraging and tiresome. When all you want is a few weeks of your life where you don't have to even think about your feet. Is that too much to ask?

So when someone makes another suggestion, you find yourself skeptical, doubtful anything will really make a difference. But the next time you find yourself crawling around the house to keep from having to stand, you get a bit motivated again. But even that can pass without any substantial action. Then there is the money issue - so many solutions cost too much, or the insurance won't pay for it, or will only pay for one your entire life. Yes, the insurance companies and schemes have their heads up their asses - we all know that. But why is it that you have to be the one to compromise, to suffer endlessly not only with pain, but with the ignorance of doctors and bureaucrats?

What it really comes down to is whether you value your own comfort more than the things that seem to block you from getting that comfort. There is always a way around the blocks, though it may entail some sacrifice of other things that you want in your life. Custom shoes and orthotics are expensive, especially when they are made by people with the right skills. And the difference in function and comfort between something made properly and something that is generic can be quite substantial. The same with other solutions - a "foot rub" is not on par with a professional massage therapist, even if it is cheaper. For us clubbies, we really do only get what we pay for, and sometimes, not even that!

But if it really matters to you that you have some years of less pain, more mobility, greater freedom, then you will find a way - to raise the money, to go around the roadblocks, to rouse from your surrender. You will put those needs at the top of your list, get creative, and get moving again. Yes, it's hard to keep trying some time. But we all have few choices - if we don't do something, nobody else will. It's really that simple.

What Doesn't Kill You....

Compassion is a tricky bit of business. For it to have its greatest value, it must be heart-felt, never self-serving. And it reaches its zenith when offered to those who wish us ill. Once for the value it extends us directly by helping free us from the attachment to the person (and the falsehoods told by them) who harms or wishes harm to us; and again for the opening it offers to that other person to reconsider their own bitterness and spite.

It is a sad statement that there are out there people who bully, humiliate, blame and laugh at others with difabilities of all kinds. This is even more sad when it comes from family and others once considered friends. To be asked to have compassion for such people often seems the height of insanity - why should we feel compassion for someone who should know better, have greater understanding, and are family on top of it all? To be honest, I am not completely sure how to answer such a question, but I do have one possible answer.

Compassion must first and foremost be about one's self - about letting go of one's own attachment to the lies another tells about one's self. When we let these sorts of hateful words alter our own equilibrium, allow ourselves to be lowered in our own eyes by the falsehoods uttered by another, we are in a sense granting that person control of our own inner peace. We therefor suffer damage not by the acts and words of the other, but by our own acceptance that those acts and words might in some sense, even if we cannot just now understand why, have real truth. Compassion therefor must first be for yourself, for your own sense of what is true and just, by not allowing those false realities to become your own. Until and unless another walks in your shoes - quite literally in the case of us clubbies - they speak from their own fears, and not from any true knowledge or wisdom.

There is an easy practice that helps with this. Whenever another speaks falsely about you - what you do or do not feel or experience without them having a clue about you, or clearly only wanting to hurt you, say first to yourself, and then to the other party, that their words are not who you are. Their words are who they are. Their words are a sign of their own fears, and you do not accept their fear.

This takes practice, yes, and sometimes will get more negatives from those same people. But sooner or later, if you continue this response, with compassion, the others will begin to realize that you are not being affected by their falsehoods, and will eventually stop this behavior. You must be patient.

And most importantly, you must be true to yourself.