From the Stages of Grief, In No Particular Order
Approximately 90-98% of amputees experience sensations and/or pain coming from their lost appendage(s). This is a freaky fact of medical science for which an explanation has never been identified, and yet doctors decided at some point that these “phantom pains” were not merely figments of imagination, that they could not be prevented or stopped by merely willing them away, and so patients, at some point, were no longer told that they were crazy and that they should just get over it.
The truth is, we all lose things – our keys or wallets, our livelihoods, pets, people, our minds – and we continue to feel the pain of these losses after these things are gone.
With ALS, though phantom pains are not a recognized symptom, they are very real indeed, except in this case the limbs and digits are still there to see and mourn over. Rather than a severance by accident, or to prevent the spread of an infection, there’s just this terminal diagnosis with an unknown cause, an observable mechanism that’s invisible to the naked eye, a definition and diagrams and charts on some website. I’m reminded of high school chemistry, how it all seemed so meaningless to my right-hemisphere-dominant brain, studying molecules and elements with numbers and symbols and equations.
The Things I’ve Lost But Still Can See list is growing:
- Chopping kindling
- Playing guitar
- Buttoning shirts
- Tying shoelaces
- Using chopsticks
- Cooking (as opposed to heating food up)
- Lifting (anything heavier than the bag of groceries, the bag that doesn’t contain the bottle and cans)
- Career & Income
- A decent night’s sleep
The phantoms are with me every single waking moment. I’m freaking haunted. I see other people every day enjoying something that I no longer can.
I see you, super fit, in your skin-tight spandex cycling suit; I see you in your short-shorts and running shoes; I see you in your Carhartts and hard hat; I see you in your kayak, gliding across the bay at sunset; I see you, mountain biker, caked in mud; I see you onstage playing that Fender Strat, stretching those fingers into crazy patterns.
So, let me make a suggestion: consider loving every single minute of it, consider not letting one day go by without expressing gratitude for bodies that allow you to move and sweat like that; celebrate that you can do these things that give you great joy, these things that get stuff done, that earn you a living, that keep you healthy. And, if you’re tempted to complain about all the effort it requires, the manual labor, the workouts, or the monotony of daily living, well, come pay me a visit.