chronic illness · chronic pain · disability · lyme · writings

you don’t know until you know.

www.shipwithnosails.com

Until February I always (naively) believed that for the most part we lived in a handicapped friendly world. I thought surely in this day and age things would be easy for those who had to use wheelchairs, canes, and walkers. I was wrong.

REALLY wrong.

I am shocked and saddened by what I have found since I have become dependent on a wheelchair. Getting anywhere is a challenge. How do we get me and the chair up on the sidewalk? How do we get the door open so me, you and my chair can fit? How do we find an elevator since me and the chair cannot go up the escalator? I am so grateful for the chair and the fact that it allows me to leave my bed but navigating it figuratively and literally is hard. 

(picture of girl in wheelchair) disabled, disability, crps, rsd, lyme disease
photo by jewel peach photography


Coming home on the train from NYC last night after a grueling week of appointments, I had a somewhat upsetting experience of trying to get to the dining car. Amtrak can say they are wheelchair friendly but it is anything but the truth. After traversing 3 train cars where the damn chair barely fit through the aisle and I apologized every other second to not hit someone’s elbows or have the wheels get caught in a blanket. In my head I thought “I have apologized my whole life for my body and here I am doing it AGAIN”. Because we were coming up behind people, I could see people take me and the chair in as my I passed by their seat. My first instinct was to feel ashamed because I am different and because I felt like a burden unable to just walk by myself.  We finally made it to the dining car but alas the wheelchair couldn’t fit down the hallway and I simply couldn’t walk that far. I started crying while these passengers behind us gaped.

I felt pretty small in that moment.


Thankfully a porter saw what happened and said “I will take your orders and bring your food go sit at these tables in the adjoining car” and a very nice man with an epic beard grabbed me by my waist and helped me get to the nearest seat. While we waited for our food I thought about all the people who have gone through this their whole lives and how much more this world needs to change to accommodate people with different capabilities. I don’t know why I am going through what I am going through but I now see the world very differently from that wheelchair. On our way back I felt so angry and used may rms to propel myself forward latching on to arm rest after arm rest and pulling myself forward while Dad steered me. This shouldn’t be the way things are.

I stopped apologizing for my body. 

xo,

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2 thoughts on “you don’t know until you know.

  1. Alicia is our common friend. I am totally excited to read your blog! I think you and I parallel on many levels. Keep on keeping on! You’ve got my support. Feel free to send me a friend request on fb.

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