Disabled Chronicles, No.2c
UPDATE: Spinraza Injection No.3:
I wonder if this is what it was like to be made in the image of G-d that first time: glorious, innovative, sacred. Because what was not mentioned in all the awe-inspiring verklemptness of it all, is that it’s a bit painful and quite uncomfortable.
With Loading dose No.2, toward the tail end of the wait period before No.3, there was this swath of muscle, from the back of my right calf, across the outer side, sweeping down toward my ankle and spanning across the top of my entire foot, where it felt like the blistering hand of some other worldly creature had me hooked.
Was it an angel, I wondered, wiping away a particularly stubborn portion of The Death from my limbs? Was it the Divine, finishing Their work?
I do not know.
What I do know is that this melange of pain and discomfort lasted through the night and for some nights after, accompanied by tingles that doubled at whim at times as sharp pin pricks and a low hum in my body, as if it were trying to process #AllTheThings.
I felt aches in the places where my muscles connect to bone or overlap with each other. Sometimes flashes, most times low grade hurts I have no real words for or reasons for complaining about.
So far, not a week out and injection No.3 has brought more of the same, accompanied this time by jumpy muscles and a particular brand of restlessness in my legs that I am not accustomed to.
I laid on the gurney that day, labs done, mandatory pregnancy test completed (😂), while the Team of Five (Nurse Tiffany was out that day) scurried about prepping everyone else for their procedure.
I waited, daydreaming about un-had conversations, things I wanted to get done, things I needed to write. Nurse Yvette came carefully with the medicinal package from the pharmacy in a clear-sided zip bag. I assumed they had removed the vial from the box and placed them together in the bag.
I spent long moments on the gurney looking at that vial through the bag, amazed at how such a clear liquid could hold so much of my living (going forwards) in it. Thankful that the stars were so aligned to allow me this one chance first, now.
Lost in these thoughts, the time flew and it was my turn in the procedure room. Nurse Jo came to gather me and before she whisked me away, I asked her to take a picture of the box the medication came in.
She reached for the bag to oblige. Unbeknownst to Us, the bag was open, so that when she grabbed it, the vial I kept staring at, flew and clanked only the way glass hitting a floor would.
Both of our mouths flew open as our eyes met. Fresh tears readied themselves as my heart twisted in my chest. I imagined there would have to be much explanation and possibly grabbing the last remaining loading dose to make up for this wasted one.
I watched as Nurse Jo breathed out, carefully reaching down for what we thought was the medication; $125k possibly lost.
“Oh G-d! It’s not broken! Oh thank goodness! It’s just the lidocaine!”
We both laughed nervously, breathing heavy sighs of relief. All this way, I’m glad I hadn’t come all this way for nothing.
Nurse Jo tucked the box with the medication still in it, in her front hip pocket, patting it for extra assurance. And we were off.
The doctor went further down my neck with this injection. Possibly three or four inches below the back of my right ear; a place where my beenies are no longer able to hide my injection-site band-aide.
It felt better, this new spot. A thinner needle helping to better thread between the precariously small spaces to tap into my cerebral spinal fluid. Drain off CSF, slowly replace with life saving medication. Things went fairly quick this time. Not as painful, though equally as treacherous.
My kidneys, these powerhouses of filtration, doing their absolute stellar best, though I did not drink enough water this time as I needed to. Yet, they still managed to squeeze by the threshold to allow injection No.3 to proceed.
Thirst. No.3 has brought with it thirst I can only imagine one would feel while trekking the Sahara: deep, nearly insatiable, maddening. Last night alone I went through 3 bottles of water. My pee, coming out nearly as clear as the water that I drank to make it. These kidneys though, I will support them putting in their work.
Despite the pain, discomfort and thirst (!!!), I imagine these connections being made and remade. These muscles being roused from slumbers. This body being whispered and summoned into living, being awakened.
Is this how it felt?, I wonder. Is this what it feels like to be part of The Divine?
Injection No.3 down in the books. One more loading dose to go.
Take care of each other Fam 💗