[Image shows three spoons on a laptop keyboard. Overlaid is torn white notebook paper with a red paper clip. On the paper in black text reads “Wheelchair and My Week” and below is a clipart of the disabled stick figure in a wheelchair logo.]
It’s been a while since my last post, thanks to college keeping me super busy. What time I’m not at college I try to study, or I’m at the doctors, or trying to spend time with friends and family. But since I can’t sleep due to stomach pain and nausea, I figure might as well let everyone know how things have been.
My port is still healing up, I’ve pulled the stitches a couple times by accident trying to carry my backpack or stretching too much while forgetting it was there. I go back to Cinci on Monday, just a follow up. They scheduled me for an MRI but we are not sure if that is going to happen since I really don’t want to have to pull my NJ tube and replace it all in the same day.
This coming weekend I’ll be going to Maryland for the LARP event I go to twice a year. It will be even better now that I have gotten my new wheelchair.
[Image shows me in a striped dress and black and white cardigan in a wheelchair outside my house.]
I got to take it for the first drive last Friday when I went to go see a band called Dino Drive that plays around town. My friend and boyfriend know the band members so they wanted to go. I figured I would take some pictures of the band and it would allow me to use both hands to take pictures rather than trying to take pictures with one hand on the camera and one trying to balance me on my cane. Not to mention I could take more pictures because I wouldn’t have to worry about fatigue or pain from standing during the show.
Of course, I soon realized just how awkward it was. I don’t remember if I felt awkward when I first started using my cane or not. But I know I was terrified people were going to think I was faking since I could stand up out of the car to get my own wheelchair. Or that they would think I was faking if I crossed my legs.
I began to feel this nervousness inside due to the fact that many people don’t realize all the reasons people use a wheelchair. I felt I had to commit to it once I started, despite the anxiety and nerves. I tried to act confident in order to “fake it til you make it”.
I wanted to be happy, because I was out of the house, my knees didn’t feel so strained like rubber bands about to break, my ankles didn’t ache, and I wasn’t dizzy. I felt better. Except for the butterflies in my stomach.
We went in through the back since the front entrance was just one big stair. Their idea of accessible was anything but. I was determined though to be independent, after all, that’s part of the reason I had gotten the chair was for freedom and mobility. Of course the curb before the ramp seemed to be too much and my friend helped me over it. Though I felt guilty because I could have pulled my wheelchair over the curb myself if I had just stood, even if it caused me pain and discomfort, I was not paralyzed. Except that once again the fear of being judged for being able to walk, even a short distance, I feared would lead to someone assuming I was faking.
Once inside, I mostly texted a friend. Feeling awkward and out of place. My anxiety getting the better of me. I tried to convince myself it was alright. I wasn’t faking my pain, I wasn’t faking being disabled. I just was not disabled in the way most people perceive. And it did not mean I didn’t need the wheelchair.
My friend made me feel better about it though, even suggesting that when I cosplay as Poison Ivy for PopCon that she would help me decorate my chair with ivy and flowers to match the cosplay.
Another one of my friends told me that I shouldn’t be afraid to ask for help because people want to help me 24/7 with things that they can’t help me with. They can’t take away my pain, can’t take away my nausea, can’t make my illnesses go away. But they can help me over a curb or up a ramp. He said, “You are doing them a service by letting them help you.” Which made me feel a little bit better.
I had a 3rd friend say she was going to get glow sticks to put on my chair for the Maryland LARP event to brighten it up and make it fun, and also to help see at night.
I had all these people supporting me and telling me how happy they were for me, and how much wheelchairs had helped them.
But then I had remembered the words my grandma said, “You better not get used to it, because I’m not going to see you in that all the time.” To my father insisting I didn’t need a wheelchair for vacation and so I pushed through. I thought of all the people who saw me in a wheelchair as giving up. I do not give up.
If I had given up, I wouldn’t be here right now. I would have thrown down the towel 10 years ago and said I’m done, no more surgeries, no more medicine, just let me die. But here I am, fighting to make my life the best it can be, because I DO NOT GIVE UP.
If I set out to achieve something, you bet your buns I’m going to do it. I’m the girl who will push through post-op pain and tonsillitis to make it to college for the week because I can’t miss my classes and test.
[Image of me laying on the couch in a tank top from the chest up, you can see my port incision, I am exhausted and have a worn out expression on my face.]
I am the girl who dislocates an ankle in the middle of her art class, hobbles down to the nurses hall, gets ice and wraps it and then goes right back to class. I am the girl who puts down my own feeding tubes, who’s intestines are on the outside of me, who has endured countless situations where I thought I couldn’t handle it anymore, I thought I was done, but I didn’t.
[Image of my foot in art class propped up on my leg wrapped up with an ace bandage and holding an ice pack on it.]
Using a wheelchair isn’t giving up, it’s me pushing myself through the pain to enjoy life. So I can go to the concerts, so I can go to events, so I do not have to be miserable and in pain to enjoy the little things. Having an NJ tube is not giving up, it gives me the nutrition I need to push myself. Having my ileostomy is not giving up, it’s given me freedom from being stuck in bathrooms and having to have countless fistula surgeries.
If you think I’ve given up, you are wrong. I’ve only just begun to live.