Disabled Chronicles, No.2D:

I glanced at the image the fluoroscope captured on screen: my neck, right side extended and exposed; vertebra like puzzle pieces, spaced out. The faint outline of the base of my skull, my jaw… was that my chin?

The earring of my left ear shown dark against the shadowy soft tissue forms of my neck and head. Love, there was this moment of Love for this this beautiful, misshapen body and all that it’s managed to see me through, all that it’s managed to endure and all that I ask of it.

That was Me on that screen, skeletal, shadowy flesh, indistinguishable from any other person that may have laid down on that table that day. The fluoroscope didn’t manage to capture my peach undershirt or my cow slippers. Didn’t manage to convey the journey to this final loading dose or what getting this life saving medication meant.

It just showed the bones of my neck, arranged in a curved arc, and the shadowy flesh surrounding them.

The doctor decided to finish out this fourth loading dose where he began the first one – behind my right ear. He swabbed the area, placed the plastic guard and began talking his way through the steps like he had the three injections before.

I listened, open to his direction as if this were still the first time.

“You’re gonna feel a pinch – it’s just the lidocaine.”

“Okay.” I whisper from beneath the plastic guard.

“It might burn a little.”

I feel the sharp poke of the needle behind my ear and take a deep breath in. He injects the lidocaine and a good portion of it evacuates out the same small hole he just made. I always wonder if it’s blood, as it seeps into the hairs at the nape of my neck. But it never is because my undershirt is never stained and neither are my beenies.

He makes quick work of injecting as much lidocaine as possible, then quickly begins his work of snaking his way towards my cerebral spinal fluid. I never ask for demonstrations of what exactly he does. If I did, there’s a good chance I’d never want to continue on with the treatments.

What I do allow myself to know is: it’s dangerous business, he is excellent at what he does, it doesn’t take long and it helps me more than he could ever know.

There is a measure of self preservation that we all do when faced with difficult decisions about our care. Do we know it all, down to the minutia or do we get the gist and just go with it? I’m generally a minutia girl. But with this? I just need to know the gist. I need to know enough of the risks and I just need to go with it, because really – what’s the alternative?

The alternative was watching my abilities fade quickly over this past year and a half. Feeling more and more trapped in my body, even as my brain is still robust and vibrant and willing. It was wondering how much longer before it was the end. It was making peace with a life not fully lived.

Do you know what it’s like to be robbed of living while you’re still alive? To be doing your best, knowing it’s not enough and just trying to get as much in the books as possible before your time was up? It’s scary and infuriating and heartbreaking. It’s wrong enough to make you willingly lay stark still while a thin needle gets threaded through your neck bones, in search of CSF to drain off and then be replaced with genetic material.

And here I was, after a years worth of tests and waiting, doing just that.

Behind the ear hurts more. Perhaps the adrenaline rush the first time masked the hurting intensity but this time? I felt the needle snaking, poking, prodding through the mass of tissue in my neck and it was all pressure. I listened as Nurse Denise advised me to breathe, while Nurse Yvette firmly held my hand.

I concentrated on keeping my blood pressure steady, my breath even while willing my neck muscles to relax and make this easier for me and the doctor. At one point, it felt as if he pinched a nerve and I felt the intrusion of the needle on the opposite side of my neck. I informed him of such and he eased back, relieving the pain.

It had begun to take so long that he had to inject more lidocaine. I kept my show of discomfort to low, quick grunts. The removal of CSF seemed to take forever this time. I began getting anxious, wishing I could rip out the needle, the guard in turn. But knew that was a fool-hearty wish. So I stayed as still as I could, hoping all goes well.

Before long it was time for the medication to be injected. Nurse Denise reminded me to breathe and I did, in a long slow breath. The medication went in with a growing warmth on my opposite side, which startled me. I commented as much. The final bit of medication went in with a gurgle, which sounds like crunchy bubbles in my ear.

“You’re all done.” The doctor says, as we all breathe heavy sighs of relief.

Right away the nurses swoop in to clean down the area and bandage me up. They put me back in the gurney and wheel me into the recovery area. We are all smiling and misty eyed.

We did it.

This journey started with the first injection on July 18, 2019. In theory, it should have taken me 10 weeks to get through all four loading doses. It took nearly three months because of set backs and miscommunications. At one point, the head neurologist suggested that perhaps I’d need to stop the treatment and await another easier method of delivery.

When he delivered this possibility, I crumbled inside but remained even more determined to continue, honoring my body and health in the process. I didn’t want to re-live the alternative.

And so I drank more water, I peed in all the cups they needed me to, I did every blood work requested and I showed up, even when I lost heart.

The team at the hospital was phenomenal. They have heart, they care and were all rooting for me with every injection.

On the day of my last loading dose on Tuesday this week, I took time to write them all a personal, handwritten letter, on actual stationary.

I thanked them for what they’ve helped make happen, for how much they showed they care and for helping to add a few more years of quality living to my life. I also wrote three different things I am now able to do because of this medication. In all, there are over 21 things I am now able to do that I wasn’t able to three months ago.

The doctor, a man of few words, thanked me and let me know that my letter made him cry ?

For everyone who cheered and championed me through these initial loading doses –


Thank you for your love, your magick woo, your well wishes. Thank you for keeping me in prayer and in your intentions. Thank you for checking up on me and helping to see me through when my spirits were low.

You guys rock!

Because of your help, I am now able to:

• put toothpaste on my brush by myself and brush my teeth without feeling like I’m gonna keel over

• I can eat an apple, with the peel for the first time in four years

• I can put my food in the microwave by myself again

• I can eat crunchy food again – that’s been at least 5 years

• I can do light shopping by myself

• my arms don’t hurt or get tired when I drive my chair, making it much safer to go galavanting out in these streets

• I cleaned off my dresser for the first time in six years by myself

• I’m able to write extensively without having to pay for it for the next two days

• I can lift up full water bottles again

• I was able to fix my arms without assistance and eat my GF pizza all by myself – I lost that ability over a year ago.

• I can keep my balance WAY better than I could even three months ago

• my tear-drop arms have changed shape and look like I’ve been pumping iron lol

• my legs are better able to support bearing weight on them

I go for a follow up with my neurologist in about two weeks to track my progress. And I go for a maintenance dose in four months. I’m told to look out for more changes over the nexts six months to a year.

But in this moment? Loadimg dose/injection #4 is down in the books!


#DisabledChronicles #SpinrazaStrong #SMAShit #Spinraza #SMA #TrueStoriesOf2019