I have spent a lot of my professional life using microscopes. There is this rhythm you get into, when you do it a lot; lifting the edge of the slide out of the book with a gloved fingernail, pulling back the guard to slide the glass into place, spinning the fine adjustment back and forth with your fingertips. Sitting taller to look through the eyepiece into the tiny world below. Looking closely to see the ways you may have changed it.
The process of putting a sample on a slide and staining it can change it, sometimes even if you’re careful. Things look desiccated if you dry them too fast; elongated and distorted if you compress the sample. The dye sits heavy in some places and doesn’t wash off completely. When I look at a slide, I’m not looking at a sample. I’m looking at a sample that I changed in some way. These changes can be misread if not careful, because once I make them, they blend right into that tiny world. They are artifacts of my actions, some damage left behind by the process of being examined.
I spent most of last week in bed. My GI tract felt like I had swallowed lava. I had abdominal neuropathy that felt like electrical shocks spiderwebbing out from just below my xiphoid process. I was tired, weak and foggy from the anesthesia. I slept a lot and watched Netflix and did work from the relative comfort of my bed. These symptoms are not really so much from masto so much as they are from the procedure. Anytime I have a procedure, anytime I take medication, anytime I change my life to accommodate my disease. It leaves a lasting change not from the disease itself, but from the treatment of it. It leaves an artifact.
I have had several surgeries. I have had hundreds of imaging tests. I have had so many scopes I literally don’t know how many scopes I have had. Every day I take handfuls of pills, infusions, injections, push meds. This week I am acutely aware of the damage I have sustained by virtue of being treated for my disease. My mast cell medications bring my already slow GI tract to a dead halt. But of course the alternative is that I don’t treat my disease – and of course that’s worse. Right? It’s worse, right?
I know it is worse. I know that I will never live safely without meds. I in no way mean to imply that I am stopping treatment. It’s just getting really hard to know what is from my disease and what is from the treatment. It’s getting hard to know all the ways I have been altered by the experience of living with mast cell disease.
I feel more and more the toll this constant need for medical care is taking on me. With my accessed port, my surgical scars, my ostomy, I myself am becoming increasingly damaged by this process. I am becoming an artifact.