Living with ALS means that you are often straddling two worlds. For me, the first world is the one where my friends talk about school, their kids, their vacation plans, their jobs. In the other world, my friends talk about making their own funeral plans, how to take some of the burden off of their families, picking out what they will wear when their kids say goodbye to them. Both worlds are real, but it can be extremely challenging to toggle back and forth between them. I’m getting better at it, maybe? I’m not really sure.
I had a flash of former life last night, a vision of this yoga class I used to go to regularly. The doors that closed, the heat rising to 110°, me on my mat performing the same 26 poses in the same order, all that strength in my legs and arms. One time, lying on the ground, as calm and settled as a leaf, when the instructor came to stand over me, his sweat dripping down onto my own chest. How I flinched when the drops hit me. The way the room would begin to smell stale, a burnt popcorn aroma that I associated with mistakes, as if everyone there was purging what lay just under their skin.
Still, I left feeling toned, glistening with heat memory even as I stepped into the cool corridor outside the class. Though I’m usually chatty, I never was after those classes. I didn’t know anyone else there, and I guess I felt I’d shed enough of myself inside the overheated room. I would shower quickly, then climb into my car, a Volkswagen Golf that made me prouder than logic should have allowed. I had gone by myself to buy it, negotiating to the best of my ability, although I had no negotiation skills at the time, and my strategy was more to vacillate aloud while pacing around the dealership. As if I might actually walk out without the beautiful silver car that I had already fallen in love with. I bought it for slightly less than the Kelley blue book value, which made me feel as though I had won something. It was my first car, and the only one I’ve ever owned by myself.
And now, all of it, yoga classes and driving, showers, even just the idea of going into an office and having a meeting that doesn’t require the presence of a caregiver. It is all beyond me. In Manhattan, I used to visit client publishers and train them on our systems and databases. Walking, taking the subway, stopping for a coffee, being alone. These are such simple things, sometimes I am sure I can still do them.
The normal world is first grade picnics and mornings at the dog beach. The ALS world is assisted toilet trips and oatmeal spooned into my mouth, the way I once fed my grandfather in the hospital. The way I offered my daughter her very first bite of food. The normal world is drinks dates and parties that take place up flights of stairs. The ALS world is swollen feet and hanging out on the back porch with my dog who is having a very serious farting problem. I try to roll away from him, but he is intent on being near me and covering me with his disgusting scent. We are trapped here together, both of us waiting for what comes next.
I live in two places, the ALS world and the normal world. I don’t get to escape from either one, no matter how much I would like to. I can sink back into my memories for a while, but occasionally when I resurface, I am just more confused. How did these worlds collide? And how do I inhabit them both without losing my mind?