A Photograph of me without me in it

A Photograph of me without me in it
A photograph of me without me in it

Friday, May 24, 2019

Don’t say that!

Since I had neurosurgery, people have sometimes said the strangest things to me. Though I believe most people are well-meaning, some comments have hurt. Here’s a short list of things people have said. If you’re well-meaning, too, this may be helpful. If you’re obviously disabled, like I am, you probably have things to add. Of course, this has been my experience. Other people with disabilities may think differently.
1)   Will you get better?
A woman who was sort of my boss asked me this a few years after my surgery. She had not known me before, and her predecessor had hired me. When we met, she asked,“Will you get better?”
I responded, “I am better.”
2)   What would have happened if you hadn’t had surgery?
An acupuncturist who didn’t help me at all first asked me this question, and I have since often been asked. I think I would have had hydrocephyllus https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Hydrocephalus-Fact-Sheetand died a slow, painful death. I don’t remember asking what would happen if I didn’t have surgery. The tumor’s effects were already painful, and everyone I talked to seemed to assume I needed to have it removed. Asking me this question post-surgery isn’t helpful because I couldn’t go back and undo the surgery even if I wanted to.
3)   You’re so lucky you get to park in that [disabled parking] space!
I’ve often written about this. Here it is:
Leaning my weight onto my cane, I struggled to remain upright while I stepped off the curb to my little blue Honda in its disabled parking spot. A middle-aged woman whisked past me. It was the end of the day at the high school where I worked as a literacy specialist, and I was so tired I couldn’t feel my fingertips. The speedy woman kept looking back at me on the way to her car in one of the two non-disabled spots past mine. I could feel her watching as she zipped to her car and I fumbled with my keys, cane and backpack. I hated being watched when I struggled.
She hollered over her shoulder at me, “You’re so lucky you get to park in that space!” Then she dropped into her car, ripped into reverse and spun her tires as she left the small lot.
I paused in my attempt to get the key into the keyhole, fuming. I wanted to yell something cutting at her, something that might make her regret such a stupid comment. I wanted to tell her that when I had walked more easily, I had parked further from the door, leaving closer spaces for those who needed them. I wanted to tell her I had hiked in the mountains, biked more often than driven, traveled the dusty backroads of lands where I knew neither the language nor the customs. I wanted to say I had been a high school classroom teacher, but I couldn’t manage teaching teenagers anymore, so after taking a year off for healing and learning to walk again, I was now working part-time, trying to help other teachers. 
I wanted to tell this zippy woman about loss and about how I was doing my best. I wanted to tell her the comment hurt. I wanted to hurt her back. But she was gone, so I returned my focus to my key, my cane, and backpack, held the window’s edge for balance, and worked my way into the car. Before driving, I took a deep breath and exhaled, shaking my head as if I could shake off how offended I felt. When my hands stopped trembling, I put the key in the ignition and backed out of the space. I drove home slowly, so I wouldn’t run into anyone. Each time an impatient driver laid on the horn, I pretended I had a bumper sticker that read, “Honk if you think I’m beautiful.” That way I could laugh at their impatience.
4)   You’re evil. That’s why you are the way you are.
This person didn’t say this to me, but to another person with disabilities who was riding the bus. I wrote about it soon after it happened. Though it wasn’t directed at me, I felt like I’d been punched. Here’s what I wrote at the time:
Today, I am riding the Metro bus. I sit on a front bench seat with other people with disabilities, and a well-dressed man in his fifties boards the bus with three plastic bags from the drug store. He talks loudly on his cell phone. He sits in a seat generally reserved for people with disabilities, and drops his bags in the middle of the aisle. A woman who walks with a cane has trouble getting by, and he turns away from her so as not to see her struggle.
She asks him to move his bags and to give up a seat for her. He interrupts his cell phone conversation to say, “You’re evil. That’s why you are the way you are.” Then he returns to his phone call, jiggling his penny-loafered foot. I want to scold him, but I can’t get his attention.
Fortunately, such meanness is unusual.
Here are some of my favorite questions and comments. 
1)   Are you a pirate?
Once a far away teenager saw me walking with a walker and sporting my pirate-like patch. He yelled out, “Argh!” This pissed me off, but usually small children asked, and they seem so excited. It happened a lot, but here’s what I wrote once:
A three year-old boy notices my black eye patch and asks, “Are you a pirate?” I say to him, “I am. What are you?” His father seems afraid he’s being rude and pulls him away. I hear the boy say to his father, “I get to ride on the airplane with a pirate!”
2)   She’s blind! She’s blind! She’s blind!
This one could go in either category. Ann and I were downtown. Because going downhill into the parking garage was hard for me and didn’t seem safe, so I waited on the sidewalk while she got the car and pulled up. When I moved towards the car, a man walking towards me on the other side of the car panicked and yelled out, “She’s blind! She’s blind! She’s blind!”
I‘m not blind, but my glasses had turned dark in the sun, and I was using a cane, though it was for balance and wasn’t red and white. The man ran around and “helped” me into the car. I said, “Thank you” because he intended to be helpful. 
Having someone “help” in a way that isn’t helpful infuriates some people with disabilities. I generally find this kind of unintentional blunder, which happens all the time, amusing and say thank you because the person intends to be helpful.
Sometimes, however, someone puts me in danger by “helping” me in a way that isn’t helpful, such as grabbing my arm to keep me from falling (offer an arm or a hand, but don’t grab someone) or opening a door that I am pushing open.
3)   Do you need an arm?
A helpful offer. See above.
4)   Go ahead.
I’m slow, so I often move aside for others to pass, especially when I’m going downstairs or getting off a plane. Usually people say thank you (or not) and whiz past, but every now and then someone says, “I’m in no hurry. Go ahead. Take your time.”
When I hear this, I don’t feel so lonely. This kindness makes me feel connected to the world and to others around me. 
5)   I read your blog. 
This makes me feel like someone cares what I think, so thank you for reading. I need to take a break from writing this blog for a long while so I can work on my memoir and continue helping other writers. I will post information here about my publications—I hope shorter pieces in the near future and later a book (which I’ve been writing for 12 years now and started as this blog.) If you receive this post in your email, this info will go directly to you. If you’d like to receive updates in your inbox, go to this blog http://www.cantduckit.blogspot.comand provide your email address in the right-hand column. 
Much love to you. Mary



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