Needle. Vein. It’s the tap, tap, tap of her rapping my hand in the hopes my veins will cooperate. Hot pads and the tang of disinfectant accompany me as I stare out this second floor window. I hear the creak of the floor as another patient wheels in. I turn my head averting my eyes when she struggles to enter the room. Uncomfortable staring and yet too ashamed to look away.
I glance at the wheels and watch the flurry of activity as she tries to move from her wheelchair to the infusion chair. In watching, I see her hand is curved toward her arm, unused, and she struggles with her right side.
“My legs won’t work anymore,” she says, to our small group. We are four patients tethered to our chairs watching the scene. I hope in my darkest of hearts that I will not become her. “Spasticity is the only reason I can stand.”
And stand she does with the help of our nurse Steph. I stare at two knobby legs and wonder at the severed connections that impair function.
Tap, tap, tap…
Age ain’t nothing but a number in my world. There is no “supposed to” when an immune system shreds your brain and spinal cord.
Myelin sheath; white matter; neurons; grey matter; brain atrophy; nerve connectivity; lesions…
I close my eyes and remember snippets of a recent conversation with my neurologist. Strange, the memories you keep.
“Is this normal? I’m worried.”
“You have a reason to be. Try to stay positive.”
“Time is money” no longer plays on repeat. No, I have a new mantra, “Time is brain.”
I watch her get settled before closing my eyes and waiting for the familiar prick of the needle.
How did I get here, I wonder as Steph brings me my Tysabri.
You’re not in Kansas anymore when you willingly take a medication that can kill you – all in the hopes of slowing disease progression. The haunting abbreviations: PML and JCV parade the vocabularies of us patients. PML, or Progressive multifocal leukoencephalopathy, is a deadly infection of the brain caused by the JC or John Cunningham virus. Much of the population has the JC virus lurking within their system. The virus only becomes dangerous when your immune system is compromised.
And so you evaluate your benefit-risk analysis: you weigh the odds and pretend that the worst-case scenario will never happen to you while on a life-altering drug. PML is the boogeyman that kept me on Copaxone two years too long.
I sit and watch Steph poke and prod at my hand with a surreal sense of detachment that I know won’t last much longer. Not when the needle breaks my skin and I feel the cold prick followed by pressure and a metallic slithering until the vein takes and my blood flows freely into the syringe.
“Extra blood work this month. Need to test you for JCV, check your white blood cell count, vitamin D…”
Next comes the saline and the cool rush as it enters my veins. I close my eyes while she hooks up my medication. Just one more push and the drug will enter my veins. The drug that has become my savior even as it left me weak in the knees and crying on the bathroom floor when I learned it was one of two scary options.
Close your eyes, Amy. Stand on one leg. Pretend this is just a dream.
And sometimes I do. Sometimes I image paper planes flying overhead and a sky made of chocolate whose rain tastes like Hershey kisses.
Pinch. Squeeze. Skin stretched taunt over bones. A mind that withers as your brain atrophies…
Do not think. Not today. Stay positive. Positive, positive, positive.
Close your eyes again. Hear the rap, tap, tap that echoes through the room like a woodpecker. Every month it is the same. The hollow noise sounds quiet at first then intensifies until you want to drown in sound. But it’s all in your head. Always, always, in your mind. Nothing more.