I’ve been done with breakfast for about two hours, but I’m still sitting here.

The air in my room is heavy with the scent of tuberose and ylang ylang. The blazing warm light of the candle, shining where I feel I can’t.

I’m trying to convince myself of all sorts of things this morning:

– that I can get some coloring book work done

-that I can get some writing done

-that I can enter that intimate space of Study of Hands and create a piece for myself, you all, the world?!

So far, none of those things have won me over enough to move from this spot, sitting at my ‘dining table’, situated in front of my closed TV, in my room.

It’s quiet in here and a bit chilly, even in this August Florida summer. But I can feel the heat trying to reach through the walls to me. I want to get warmed by the weak sun at the moment but not even that promise of warmth makes me want to move.

Which is funny in an ironic kind of way?

For all the gifts Spinraza has been able to give me, the one I am using the most in this moment is the gift of sitting still, even though I know moving is made so much easier for me.

So I am sitting. Feeling. Thinking. Pseudo-working by plunking my finger tip on my phone absently, trying hard to follow the thread of what I want to accomplish and feeling like I am falling behind, out of step, too late?

Spinraza?

No.6.

I ate mashed potatoes, rotisserie chicken, gravy and sweet corn for breakfast that morning. Those Spinraza injection days are not good eating days. So I have to eat what I can early and it has to last until I get home in the evening.

My grown up lunch bag is packed anyway: water, straws, napkins. Maybe a make-shift warm cream of rice smoothie in my insulated cup. But not this time. I carry the water, in case I get thirsty behind this mask.

It is thick, this mask. Layers of cloth and filters covering my nose, drying my lips, cupping my chin. Close.

My face, slimmer half on purpose, half from nerves and worry and compounded stress, leaves small spaces where air flitters through. I use my reacher to adjust and move the mask so the spaces get smaller or disappear.

Looking at myself, I seem so strange. Like a paper cut out, eyes darting, a little vacant. I snap a picture.

The transportation beeps as it backs up in front of my house. The sky had been heavy and grey all morning. I take it as a good sign, like my mother had told me: ‘… rain means the Angels are with You…’ And I hope they are. Having the mask on makes me forget that I can indeed speak, though it will be quieter and more muffled than usual. The driver instructs me on where to park my chair and I only nod, making guttural noises of acknowledgement.

My chair tied down, we begin the journey. For social distancing measures, I am his only passenger. I feel at ease, solo in this careful capsule.

Arriving a full hour and a half early, I don’t mind. It allowed time to help the driver find the secondary clinic site.

Usually, I’d have to enter the main entrance of the main hospital, thread my way past the bustle of the front desk, past the cafeteria, to the out patient clinic. In the weeks prior, I knew that this particular hospital was to capacity with COVID cases. The thought of having to get this injection felt like I was literally going to have to go into the Belly of The Beast.

Thankfully, the day before the injection, they called to tell me that the clinic had been moved to the cardiac hospital on the main hospital campus. I breathed a heavy sigh of relief.

After exiting the transportation, I took my time getting to the front door of the cardiac hospital, gathering myself as I went along. Upon entering, I let them know which clinic I was here for.

They asked if I wanted to put their mask over my mask or take mine off and just use theirs. Either way, it seemed theirs would be the mask de jour. I asked the receptionist to remove my mask and put on theirs. She gloved up and assisted; I, holding my breath between mask changes. She took my temperature and ok’d me to come to the reception desk.

Standing a distance away, I gave my name through their mask, as I gripped mine in my left hand, like a security blanket. They nodded, motioned towards the waiting area and advised me to sit anywhere, as long as I was socially distanced. I picked a spot, eyes wide, waiting. It felt like a ghost town. Except every once in a while a fully clad medical staff popped out from the badged door to retrieve a patient from the lobby.

CNA Patrick came from the back to welcome me and let me know that they would be going by appointment. I assured him I was super early and totally understood. He disappeared to the back with a formally waiting patient. I tried not to think too far ahead than where I was in that moment. Not at risks of the procedure or the added risks of COVID. Not at the new surroundings. Not to my fear or loneliness and walking this walk. I just sat, with my podcasts, biding one moment for the next.

Before long, Nurse Tiffany ushered me and another patient to the back. I barely recognized anyone since they were all covered from head to toe and wearing masks. It was in that moment that I realized how much I relied on being able to see everyone’s lips in order understand them and fully remember who they were. I had to remember the sound of their voices in order to help me remember their names.

The usual pre-procedure rituals were preformed: I was undressed – this time fully, since the procedure would be performed in an actual operating room and not a procedure room. I was gowned, the last minute tests administered. The cardiac doctor cleared me and finally the administering doctor came by to chat a bit and see me before the show got on the road.

He seemed glad to see me and I him. Like familiar faces in a sea of turmoil and uncertainty. He shared how the hospital was full of COVID patients and in that moment of sharing, his eyes were as big as saucers. I was glad in that moment that the clinic had been moved. I think maybe, so was he.

In the operating room, CNA Patrick stood behind my knees as I lay on my left side, the heat from his body shielding me, the weight of his arms on my legs, keeping me steady on the table. I glanced at the familiar fluoroscope skeletal image of my neck before Nurse Yvette stood in front, holding my hand, mercifully blocking my view. Nurse Jo read off my information like church. The Doctor chimed in after, asking if I was comfortable and ok. I nodded the affirmative and the procedure began.

The two pinches of lidocaine came in succession behind my right ear. Nurse Yvette thumbed the spot between my eyes, reminding me to concentrate there. They’ve come to know: how I get scared, what I need for comfort, how to help me through the injection moments. In all the strength I have, they know how to show up during my not strong moments and rally around. I felt the pressure of the catheter entering the cramped space behind my ear, down my neck, to my spinal column.

I did not feel the CSF being drained this time or the medicine being administered. It was a total surprise to me that we had been done. The time seemed like nothing at all. The recovery period even less so. I don’t know what this says about this round of injections. If We as patient and Doctor and medical staff have gotten better, like a well oiled machine? Or if in the height of COVID, this reaching for Life, is not as bad as what it once seemed to be?

In the press of all that is, we were done. They dressed and packed me up, armed with one of their surgical masks, thanks to Nurse Jo, to face the Outside once again, a small bandage the only mark of the miracle that happened here.

The transportation arrived late, but drove me straight home. My early arrival a surprise to my night aide who expected me back closer to 9pm. I ate something light. My aide poured me into my bed. The day was done, no worse for the wear.

Spinraza No.6 is down in the books. #truestoriesof2020#spinraza#COVID#spinrazastrong