ALS is whittling my body, and marking it as it goes. Most of the changes to my body are slow, gradual shifts that are only noticed once the damage has gone pretty far. Holy shit, I’ll realize one day, the palm of my hand is concave at the base of my thumb. Huh. My calf just tapers from my knee to ankle, instead of the graceful curve it used to have. A slow, glacial injury without drama, but still with much import.
Some of the marks ALS has left on me were more sudden; sharp, violent signs of change. I’m no stranger to scars – I used to self-harm as a teen, into my twenties, and what is a tattoo after all but a pattern of scars filled with ink? Each of these little marks my disease has left me tells a little piece of my story – a concession, a loss, a search for an answer.
The first scar is the first nail in my coffin. One and a half inches, on the outside of my left thigh. A thin, straight line of white against pale skin, flesh tone once described as “ghost-ass white”. I’m regaining sensation there, but for a long time it was a patch of numb skin. I got this scar from the biopsy that sealed my diagnosis. A little chunk of flesh taken to examine for nerve degeneration, degeneration that was confirmed and my fate thus sealed.
The second scar was First Blood. An L shaped mark behind my right side, under my rib cage. I took a fall getting out of a car, catching my flesh on the corner of the door as I went down. My first disease related injury, and sadly not the last – but so far the only one to leave a mark on the map of my body.
The third scar is two-part. A dash and a dot. The scars of my port surgery. A dot over the right artery in my neck, where a line was fished through, snaked into my system of valves and tubes and blood, and connected to a bubble of plastic that rests under the second scar. A one inch line cut and pulled apart for the port to be shoved in and connected to the plumbing. This was a violent scar but a relief to get; it’s made infusions of medicine indescribably easier. My only visible to the public scar, a surgical badge of Legitimately Sick.
The fourth scar is one of persistence. A year of puncturing the port for infusion has left a pink dot under the incision line. Scar tissue building up with each stab, eventually making the stabs less painful. A welcome scar.
I have an appointment on the 20th of May to discuss acquiring my fifth scar, the scar that will hopefully make my life oh-my-GOD so much easier. I’ll speak with a urologist actually familiar with ALS and therefore not liable to suggest that I do some motherfucking Kegels to keep from peeing myself all the time. I’ll ask for a superpubic catheter to be inserted, and hopefully get approval and a surgery date. And hopefully then I can go back to wearing clothes that I don’t have to strategize how to get out of in 30 seconds or less otherwise they get peed on. I wanna wear my shark onesie again.
I’m willing to get a scar over it.