Next up facing the feeding tube discussion with the GI doc. Even thinking about discussing it, makes me cringe.
But first a trip to NYC to see the reveal of the Christmas window displays!
Never underestimate the worth of those few friends who truly are there for you. I could never go on a trip to NYC by myself & let’s face it, it’s one of the toughest cities to navigate in a push wheelchair. If you have someone who is willing to push your ass all around the city, you are beyond lucky.
I am beyond lucky.
One of my dearest friends & I took a bus tour into NYC. She had never been to NYC. She was overwhelmed with the sensory overload NYC has for ones brain.
It was crazy busy, with everyone crowding to see the holiday windows. She never once complained. She pushed my chair through the crowds. She fought the hoards to get me to the ramps to get me up onto sidewalks. She lifted my chair when people just wouldn’t let us get to the ramps.
She saw how rude people can be, hurrying pass you. So many treating you like you’re in their way or invisible to them. Then literally having someone step over you, stepping on your foot and tipping your chair forward as they push down on the foot pedal. When people said, “there’s a wheelchair, let her through”, the over-stepper says, “I don’t care”. Its an odd feeling to have a stranger who only tried to help you, apologize for someone else’s asinine behavior. But thank God for the kind people. They renew your faith in the world.
Let me tell you what it’s like to spend a day in NYC in a wheelchair. Perfect strangers are rude and they let you know what an inconvenience your existence is in their otherwise rushed travels. All day while the rest of the tourists are looking at all the beauty the city has to offer, you are staring at asses. All day, asses & crotches, that’s your view from a wheelchair in crowds. Thankfully I’m not always in my wheelchair. But it hurts my heart to think that I will be & that millions of people already are. They deserve better than “I don’t care”, from the asses & crotches they encounter throughout their days.
Now imagine your friend is hungry. So you find a place to grab a quick lunch and the only way to the dining area is stairs. Oh but wait they have handicap seating. It’s a table that folds down from the wall. It’s in the middle of the line where people are waiting to order & it sits at a height for people to stand at & eat. You wouldn’t be able to reach it from your chair & there’s no seat for your friend. It’s very discouraging & you feel like a horrible person for putting your friend through all this.
One stop before going home. A rest stop for dinner as the last stop on the bus ride home. I’m starving, I can’t eat much today & I didn’t haul my nutrition & pump on the trip with me.
I decide to go inside & see if there’s anything I can eat. I get in a long line. I tell my friend to go where she wants to get food, I’ll be ok in the line. But then the restaurant has an issue and they shut down. Now I’m stuck, I’ll just get myself over to another restaurant & get in line.
There’s no place else I can order from. Nothing I can eat. I’ll try the store and grab a drink. I can’t fit my wheel chair in the store. It’s impossible for me to even enter with all the displays.
I’ll just use the bathroom, then find my friend & get back on the bus. I can’t fit my wheelchair through the bathroom by myself. I’m so exhausted. I try and figure it out, but it’s not gonna happen.
That’s it, I’m done. Suddenly it hits me, this is my life now. I’m invisible, I’m in the way, I can’t even get myself into the bathroom & there are places I can’t even navigate. This is my life.
I’m going to cry. I can feel it crawling up my throat & my eyes are filling fast. I must hide. Like a light in the darkness I see a family bathroom. I use my legs to get myself over to it & I use my cane to push the door open so I can get my chair inside. It’s not working. My body is so tired from the day.
I can feel the warm tears starting to run down my face. There are people all around me and no one, not one person offers to hold the door so I can get into the bathroom. I feel like everyone is looking at me, whispering about me & judging me. The tears are in free fall at this point. I must get inside and shut the door. I’m in, thank heavens, I’m in. After an amazing trip to NYC, I’m in a rest stop bathroom, crying my heart out. The pain & reality is more than I can bare. This is my life now.
I’m beyond grateful for my friend and all she had to endure to do this trip with me. But right this second hiding in a dirty rest stop bathroom, I feel completely alone. I can only think about the ignorant people, the thousands of asses I stared at all day, the troubles just trying to navigate, & so many other negatives just beating me up inside my brain.
I finally pull myself together, find my friend & just say, “please get me back in the bus”. I’m still barely holding it together & I just want to get in my seat & go home.
It still hurts to think of the negatives of that trip. But it also is a memory with a true & real friend, full of laughter & fun, that neither of us will forget. Those are the parts I will hold on to & the rest can fade away with time, I hope.
Treasure those friends, the ones that say they will be there & then…they are.