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.