I am, Invisible Woman

Ever heard of an “invisible illness”…well, a chiari malformation is a member of that party. Migraines, fibromyalgia, and many others are also included in this group. You look fine (well sometimes bedraggled by the end of the day), but you’re battling your body on a daily basis. Every chiarian can have a multitude of varying symptoms.

My list is longer than I want to submit you to, but below are a few of the select symptoms:

left-side of the entire body (including my face) numbness

inability to feel my hands and feet

spike drilling through the top of my head

back of brain being squeezed

feeling like my head is set on a pike

difficulty swallowing and sometimes feel like throat is being squeezed

vision fading and at times I feel like I have chameleon eyes

eye floaters

major balance and dizziness issues which result in falling down

tinnitus

exhaustion

and the list goes on…

Most important though, I am slowly becoming paralyzed. Even though at times this is difficult, I try to remember, there are many people worse off then I am.

Commuting into work in NYC isn’t exactly chiari friendly, and it’s really not too partial to those with “invisible illnesses”. Here’s a little insight on my daily transport to work:

Just imagine a subway trip with only one or two of the above symptoms. That’s me the wobbly, cane toting – girl (not feeling much like calling myself a lady today, since I truly wanted to smack a subway etiquette offender with my cane). Struggling to see straight, not fall off the platform, and navigate stairs. Oh, there are elevators in some of the stations. They’re there, and you can use your nose to find them. Usually someone has designated them as their private loo. Also inevitably by the time I get out of the subway car and amble over, there is a long line of people who could readily take the stairs but well…there’s no polite way I can describe these people, so I won’t even try. I’ve seen people in wheelchairs nudged out and made to wait for the next lift by this lot.

Part two of our adventure: Desperately searching for the elusive seat on the subway… every   single   day. Here we go. Wait on the platform. Crowd starts to build. Subway pulls up and the doors open, and the seas don’t part. As people try to get off there’s always some idiot that rushes like a linebacker to get on. These are  the body slammers. Try to sit down. Here comes the side-swipe. Wham! Or there’s the full body check. Oof! Canes don’t matter. Doesn’t matter when I catch myself on a pole before I hit the floor. All that matters is, they get their “Precious”, that damn seat. There’s the other classic offender: the hipster douche dude that’s a siddler. They nudge, they shove, till they get to just the position they want by the pole and wrap their entire body around it, not caring who has their hands already on it. Another one that tops them all is the person that asks, “Why do you have a cane? You don’t look like there’s anything wrong with you. Chiari? What’s a chiari? I’ve never heard of that before. I bet if you just tried yoga, you’d get better.”

Then there’s the best one…the one that always surprises me. I’ll be standing in a packed car, swaying or just hanging on to a rail, and I’ll feel a hand on my arm or back. Glance down and there’s a seated young lady smiling at me. “Would you like to sit?” These rare moments give me a little bit of hope in people again.

Maybe I’m not always invisible.

#chiari #invisibleillness

Side note: Sometimes you just have to laugh. Can make the day so much better.

"Son of the Invisible Man" from "Amazon Women on the Moon"