Identity and Sunlit Staircases

There is a sunlit staircase I can see vividly in my mind, made of the light-colored stone that so much University architecture uses. To this day, I can’t remember if it was Watson or Anschutz (probably Anschutz after a Psychology class), but I remember the warmth of the sun spreading between my shoulder blades. I remember how my energy that day felt like the ground was nudging me up with every step. I jogged up the steps to the top and blew through the door of the library to study something clinical and science-like that really interests me but probably would bore most readers (really admittedly, I am pretty dull unless you somehow break through my shell, which can be difficult!). It was one of those few perfect days without pain or fatigue enough to really break consciousness. It was a day I felt so free and untethered that it felt like if I just jumped a small way in the air, maybe for a second, I could fly. Or maybe for me, being able to run up some steps was being able to fly.

I did not cry during my appointment a few days ago when my Doctor gently brought up getting a disability placard for bad days. She’d signed the forms before, but I never took them in because I was still resisting the reality they signified and I think I ended up throwing them away. When I was asking for her advice about parking and some of the distances on campus, she was emphatic that I needed the placard for bad days and the access to an ADA parking permit on campus that the placard would provide as well. I knew instantly that she was right, and that I’d give pretty much anything in the entire world for that not to be true.

Yet, in contrast, this morning I completed my preferences for practicum placements next year for my program. A sign that my ability to manage my condition is improving. For the first time in a long time, my apartment is completely clean (which imagine being a neat-freak not physically able to keep up with of all the house tasks without falling down on other responsibilities!). I’ve been able to do more with the careful physical therapy I’ve started (which unfortunately doesn’t involve fanciful and impulsive sunlit-stair runs).

I didn’t cry either when I took the form signed by my Doctor attesting that I really needed it for x,y, and z reasons in to the Treasurer’s Motor Vehicles office to get the placards and the i.d. cards that you have to carry with you at all times if and when you are using the placard. It was bizarrely anticlimactic. The entire significance of the placards, what they meant and revealed about my body and ability were wiped away by the neutral accoutrements and stereotyped conversations of government offices.

A few nights ago, I was able to dance again for a very few minutes. Not for long and not precisely well, but I enjoyed it. I played a short song that you’d have to be completely devoid of a soul to not experience an immediate moodlift (Chicano Batman’s version of La Cumbia del Sol for the curious), or so I think anyway. I might or might not have imagined being in a dance hall (not too loud or too bright) out on a weekend looking good (or what passes for good for me anyway).

No, it wasn’t until tonight. While sitting here at my desk remembering that carefree stair-run. Because now, I always have to weigh and measure anything that I choose to do or think about doing, in terms of the energy it will expend, and the amount of fatigue and pain it will cause and what that means for my responsibilities and the activities I enjoy in the future. It wasn’t until I had time to remember that impulsive stair-run to understand what the placard signifies to me. Because it signifies to me the loss of the self that didn’t have to run endless predictive equations of energy costs and balances. 

But in that moment, I also understand how vital that moment was, how I wished to God that I had spent more care and focus with it knowing what it would mean to me later. How my body felt fueled by the sun and my hair felt slightly hot and as if it were lit from within. How the word phoenix really did float into my mind as I darted up the stairs before I dismissed it for being too cliché. How I still am the same person as I was in that moment, and that no matter what happens with my body now, I can carry that memory as a living testament to me and that even as I am weighed down by my body now, I will always be that girl lightly tripping up the stairs (ITM friends are groaning right now, and rightly so!) glowing with the sun.

And yes, then I cried.