Invisible Feud
[6 AM September 19, 2013]
Hmm… maybe if I move my leg this sharp stabbing pain will stop... nope, okay that didn’t work...let me get up and walk around.
Countdown....3… 2….1… Go… Okay, I’m up. I’m walking, good. Shit, that's not good. My foot still feels like it's asleep. Like pins and needles are boiling underneath my skin like it's trying to burst out of my body. Okay, now it's spread to my hand, throbbing, like it's being stabbed by 9-inch urchin spines, spewing venom. And now my... Earlobe…(?!!)...even the left tip of my nose is sizzling hot like it was fried in oil. It's on fire, but it looks fine. The right side doesn’t hurt. My left jawbone and left pinky toe are simultaneously bubbling, like mixing vinegar with baking soda, there’s nowhere for the toxins to go, I’m about to POP(!), but, the right side is completely fine? I think I am having a stroke.
Me: Hey Doctor, I have serious localized pain on the left side of my body. I wake up every day, every minute of every day with this sharp pressure. You know that tingling, buzzing feeling, like when the foot falls asleep.... Am I having a mild stroke??
Doctor: Good news, you’re not having a stroke, but I think you might have multiple sclerosis.
Me: What?!?! Half my body is burning, my spine is straight!!! I do not have scoliosis, I’m having a stroke.
Doctor: Uh, no, I said multiple sclerosis
Me: What’s that?
Doctor: The neurons in your brain are accidentally attacking your myelin sheath, there is inflammation at the site causing neurological pain.
Me: Uh, okay, how long will it last?
Doctor: Well, it's still unclear what you have, and we still have to do some tests.
Me: I’m confused… Yesterday I was fine, I was doing yoga in Dolores park...I don’t understand... How did I get it?
Doctor: …. It is uncertain, [scientific jargon]...
Me: When does the pain go away?
Doctor: It's unknown… it may never go away... [scientific jargon]…
Me: I don't understand, I’ve been a vegetarian for 5 years now, I have always been mindful of my health, I always eat fresh produce, I grew up picking fruit off the trees in my backyard, and blending weird herbs together with my grandfather! I’m healthy.
Doctor: Go home, get some rest, try to relax
Me: I am relaxed, I do tons of yoga, I go bike riding every day...I don’t understand… I can’t feel my hand or my left side of my body. The tingling, buzzing feels like a never-ending text message from your phone, except it never stops.
Doctor: The body will recover on its own, there's nothing I can do. I will be referring you to a neurologist. You’ll get a better understanding of what is happening. You take good care of yourself and email my secretary if you are still experiencing any pain 2 weeks from now.
For 3 weeks, I couldn’t blink, I couldn’t move, I couldn’t be touched, any muscle movement would make the electrical nerve zings worsen. I would muster all my energy to squeeze myself into the tightest crevices just to stay still, and sometimes the stabbing pain would slightly weaken. Then finally, FINALLY, I woke up, it was gone, just like that, it stopped, and I was back to normal. In that infinite moment, I lived with the harsh reality that I will never heal, that I will never know what it means to achieve inner peace; that my body is in a constant war with itself, that there will never be a moment in time where I don’t think about the death of my own cells. And amidst this invisible feud I’ve learned: 1) ableism is a privilege, 2) disabilities are not something we choose, and we need to be protected, and 3) universal healthcare is a basic human right. I cried. I laughed. I sobbed and snorted uncontrollably. I opened and closed my eyes, I could rub my hands together and feel the gentle softness; I could touch my face and it wasn’t going to explode. I had recovered, the battle was over, I beat level 1, but deep down I knew that level 2— in this infinite, invisible war— was lurking around the corner.
But, what the fudge just happened? The technical term of my symptoms includes dysesthesia- the burning sensation along the nerves, paresthesia- the feeling of pins and needles, and a mix of anesthesia- complete loss of sensation. All are common symptoms when living with an invisible disease, like MS, an overwhelming majority of disabilities are invisible, but I’m visibly WOC.