Author: Jana

I have a ritual that for my twice-daily dressings. It involves the expected hand-washing, opening of sterile wrappers, cleaning and laying out of tweezers and scissors, a dousing of the affected area with saline. Then I start to breathe.

In my yoga practice my teacher taught us to send energy through our bodies by imagining a furnace sitting at the base of our spine. With each breath in we stoke the fire of that engine, make it burn hotter and brighter, and as it enlarges and warmth shoots down our legs and arms–creating arcs of energy that spit out of our finger and toe tips. While I am doing a dressing change and I breathe this way I am less interested in shooting sparks out my fingers bit–rather, I imagine a pinwheel of fire in my belly that sends its light to my leg. The light warms and soothes the tissue, preparing for the moment when I have to grab the tip of the gauze that’s packed into the wound and pull. It doesn’t come easily–it is packed in with pressure and cemented by blood and slubs of new tissue. And that’s exactly the point–the pull debrides the wound, “cleans it,” keeps it open. For me it is a horror to hurt myself that way–to rip open a sore that is doing its best to heal closed. To tug at the tissue that is so raw and tender from months of inflammation feels counterintuitive from my deepest fibre. I find that it’s only when I breathe my special way that I can make my hand do what has to be done.

As I performed my ritual this morning, my mind stuck for a moment on how “this has to be done.” In my case it has to be done in order for my surgery to be effective. But I let that thought expand and enlarge as I thought of other times in my life that I am doing what “has to be done.” I thought of my life as an amputee, how much of that is simply finding ways of doing what “has to be done.” Walking with a prosthesis, ignoring the stares of passersby, standing unselfconsciously in front of a classroom–not easy things, but to me they are not courageous, heroic or unusual. They are a means to an end. I have little choice in the matter. Like the gauze that must be pulled, I cannot change my physical difference. It is what “has to be done” for me to move through my daily life.

And of course we all do things every day that “have to be done.” It occurred to me in that moment of gauze pulling that my situation is no way unique. It is what makes me just like you. You have lots of things you have to do, things that bring a twinge of discomfort and frustration– even outright pain. But they are “what has to be done.”

Although I didn’t articulate it in this way when I first began blogging, I would say that most of my online writing (at least on my personal site), is my attempt at making peace with the “what has to be done” of my life. A big part of that is writing about my disability. Because it’s so often difficult to experience the pity of complete strangers, I need to discuss what that feels like. I need to tell the story of what happens when a one-legged woman walks into an athletic facility or is harassed by TSA employees at the airport.

Last night as I was hobbling across the living room in frustration–trying to walk on my fake leg and my wounded leg and taking one big leap to the sofa because I just wanted to get off of both of my feet as fast as possible, my daughter came over to comfort me. She expressed her sympathy at hard it must be for me to walk right now. I was angry and tired and hurting. I looked up at her standing over me and suggested that her life might be a whole lot better if she’d been born to a Mom with two good legs. A Mom who could be outside playing and running and not one who had to ask for help each time she needed to use the toilet.

CatGirl, with all of her young wisdom said, “I only know what I have. I don’t know what it’s like to have a Mom like that. I only know what it’s like to have a Mom like you. So I only want you to be my Mom.”

I think CatGirl understands a lot about “what has to be done”–maybe more than I do. She knows that you only know what you’ve experienced and that’s that. So “what has to be done” for her is to be gentle with her Mom when she’s healing, to refill my water cup, to not complain as she trails alongside me through clinics and hospitals. She hears me scream and cry when I’m hurting and she takes in in stride. This afternoon she patiently helped me clean off all of the adhesive residue that was still stuck to my arms from my latest round of IVs–knowing that I couldn’t reach the goop on the backs of my arms myself. It was “what had to be done” for her Mom.

I think I’m still learning “what has to be done,” and that’s why I keep blogging. I’ve got to write to make sense of my place in this world, to understand the madness and beauty and arbitrariness of it all. And I also feel like someday after I’m gone (let’s say in 30 or 40 years from now) CatGirl might be facing something as painful as having to debride her own wounds, and maybe she’ll look back on this blog–these thousands of words that I’ve written here over the years–and something here will strengthen her to face the realities of her life. To do what “has to be done.”