This explains Chiari to a Tee. Wesley is one of the unlucky ones. This was taken from:
Some of us sport hardware (wheelchairs, braces, etc) but most of us don’t. We look like everyone else. This is what they call an invisible disability – There is no outward sign saying we are in pain.
Chiari pain is often chronic, and for some of us it is acute chronic pain. There is no magic pill to take to make the pain go away, yet we trudge forward each day choosing to smile and laugh even though we want to scream out in pain. Over time, we learn to go forward as life doesn’t stop even when we wish it would for a moment. We make choices every day of what we can and cannot do. Sometimes, our choice is to do something we know we will pay for dearly later … but we do it anyway just for the experience of enjoyment, if only for a short time.
Some Chiarians are lucky enough that surgery works to eliminate the pain (very small percentage) … For most of us, pain is reduced to a more tolerable level … While others find no relief at all. Doctors are too fearful of the "prescription abuse" stigma, so few of us truly find any relief. We are stuck in a world full of pain and frustration with no end in sight … and yet in the photos below you will see us SMILE!
So the next time you see one of us, please understand the energy it takes to smile, laugh, and PRETEND life is normal, when in fact, most of us want to curl up in a bed and cry!