Disabled Chronicles, No.2d2
After Spinraza injections, the ‘floaties’ in my eyes appear like straight lengths of ‘string’ with an impressive knot in the middle. Uniform, peculiar as my ‘normal’ floaties go, which are bendy, twisted affairs, beautiful in their organic go at existence. Plentiful when I am sick and sparse when I am properly hydrated.
These ‘new’ style of floaties cut across my vision, like slow moving cargo ships, pregnant with genetically modified packages for my body.
I notice them most the next day as I recline in my fancy schmancy foldy chair on my front porch-lette, my eyes and face upturned to the pale blue bright sky.
It is the most quiet it will be for me in those moments, as I honor my body and allow Her to integrate with this medicine. Careful to drink my water, eat nourishing foods, rest.
I wonder if those floaties are the Spinraza molecules, for reals? I wonder how possible is it that my eyeballs and optic nerves can ‘see’ them. They glide, jerky when I move my eyes too fast; calm when I track their journey leisurely.
I haven’t seen a straight-string, knot in the middle floatie since my last injection two months ago.
The floaties in my field of vision now look cluttered, their ends curled in. Wrecked, still knotted in the middle and mangled. I’m not sure if their demise is them doing their job and dying or if it’s my body getting what it needs from them and spitting their carcasses out.
My muscles know the answer, though they’re not exactly telling.
My arms – shoulders, biceps, forearms, fingers – have had a burning sensation under my skin lately. I’m not sure if it’s because the medicine has plateaued or if I’m dong too much. Maybe both?!
I’m struggling with some things that were so novel and amazing during the loading doses, like holding a 3/4 full bottle of water or manipulating many successive tasks with my fingers without getting tired.
I get tired now and have to rest. Not nearly as often as pre-Spinraza, but it’s noticeable. The neurologist assured me I have enough medication in my system to carry me through to my upcoming maintenance dose in February.
He was dismissive about my concern.
But he can’t see those floaties like I do. He doesn’t know how they’ve changed and how they now resemble mangled car frames.
I hope things steady out until my next dose…