Her finger landed in the space between my eyes gently, like a soft cat paw, sending a hush of quiet energy through my body and mind.

“In meditation they tell Us to tap and focus here…”

She couldn’t have known about the year I spent in meditation study under the Sant Mat tradition with Steve. And how before he doula’d us into the sacred silence of meditation following the teachings of Saint Kirpal Singh, he’d touch the same space between our eyes, firmly, reminding us to focus our closed physical eyes and our attentions there.

Nurse Yvette – voice, barely audible, triggered muscle memory by touching that same spot, causing this body, full of tension and worry, to heed.

I was startled at the instant calm. It surprised me, how a single touch, in such an innocuous place in conjunction with a few simple words could veritably turn out the lights and leave the night light on.

But it did.

There is no way she could have also known how, in the last four months, I’ve returned to meditation (Sahaja Meditation) and that I needed the reminder she gave me in those few moments.

Recomposed and calmly still on the inside, Nurse Yvette held my hands as the doctor set to work.

Two pinches of lidocaine kissed the back of my right ear in succession. They felt acute yet duller than I remembered.

My mind, unsure of the meditation sorcery that occurred just minutes before, turned on all the lights at the feel of the needle pinches and threatened to sound the alarms, which would have caused me to tense up or worse yet move, right as the doctor got ready to start snaking his way to my spinal column.

There is this place that can be reached in meditation, that I can only describe as the ‘space between thoughts’. That momentary silence between the thoughts of ‘I need to put the laundry in the washer’ and ‘I really feel hungry’ – this space, this is where the soul of meditation resides.

To get to those spaces, you have to notice yourself having thoughts yet not engage them. That’s how those spaces grow and become more than blips.

Yet deeper in those spaces still, lives a place where you are totally aware and utterly quiet, unmoved by emotion, free of your body. It’s where you exist in this world, how you originally came in to it.

Being enough in that space, I grabbed my mind by the shirt collar, pulling it from the breakout panic it threatened and turned the lights back out, leaving the tiny nightlight Nurse Yvette turned on.

In that split second, it was go time.

The catheter (? I suppose it is a catheter that’s used – I haven’t found the courage to ask or know explicitly) was inserted, making its way through my neck to my CSF. And it felt surreal, watching myself keep in this space while I allowed things to happen to my body, summarily detached, yet aware.

CSF was drained off to make room, thankfully I never feel it. Then the medication was injected slowly.

Maybe it’s the last few bubbly bits left in the syringe, but the final amount always goes in sounding like crunchy bubbles. Which is unnerving. And this time painful as a twinge of pain runs from behind my right ear to my right shoulder.

“All done, all done!” The doctor alerts me as he quickly removes the catheter amidst my beginning winces of discomfort. I am cleaned up and a solitary circle bandage is placed where everything began.

I am made to rest, my blood pressure checked, given a few sips of juice then readied and sent on my way back home; where I arrive, ready to be poured into my bed.


I wasn’t sure about marking this injection. The words have been long in finding their way to me. The focus and sense of sharing a struggle.

But it’s still important. Still the right thing to do. And so, I’ll keep writing about this experience. I’ll still keep thanking the folks who show up and support, I’ll keep updating everyone who’s been along with me on this ride. Know sometimes that the retelling can be hard, if only because the reality hits that it takes sooo much to keep me alive.

It’s awe inspiring, it’s miraculous, it’s daunting. Very few people have to go through these lengths to be able to go to the store, breathe or exist.

It gives me pause. It makes me realize just how unusual I am, how fortunate and how hard I have to work to keep going. Cheer the medication and champion the little brown body having to go through all of this too ?

Dose #5 is down in the books.

Be well and take care of each other.

#DisabledChronicles #Spinraza #SpinrazaStrong #TrueStoriesOf2020