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

Beginning Again

For my writing class, I have written three possible beginnings for a personal essay and outlined four others. It’s not just that I’m having trouble getting started. It’s that I can’t quite figure out what my story is. And I’ve been writing it for twelve years.

This difficulty getting started reminds me of the time, seven years ago, when I sat down with my niece Isabella, who was struggling to write her personal essay for college admissions. She had asked for help, but I didn’t want to help her if all she needed was a little encouragement, so I asked if she’d tried already. She said she had, and her eyes watered. 

“How many have you tried?” I asked.

“Eighty-five.”

I helped her. She graduated from Duke last year and now works for Twitter. The problem, clearly, was never smarts, and it wasn’t that she didn’t have anything to say. Maybe she was putting a lot of pressure on herself to write something that was both true and effective. Or maybe that’s my issue.

I’m not going to try and re-try 85 times, but I feel like I’m on Isabella’s trajectory. I keep thinking of Prufrock’s lines in T.S. Elliot’s poem, “The Love Song of J. Alfred Prufrock”:

When I am pinned and wriggling on the wall, 

Then how should I begin 

To spit out all the butt-ends of my days and ways? 

Prufrock seems to be trying to express love for someone, but he’s frozen, immobilized by his fear. I’m not trying to express love, and I don’t think I’m afraid to speak, but I do feel paralyzed. How should I begin?

First, I’m thinking and re-thinking about what I want to say. I’ve been so surprised about the gifts of these tumors that I haven’t been writing about the losses. I wonder if grief is at the heart of my story, and I need to address it. 

Thinking about this Sunday night, I wrote: 

My story is that I have never been conventional, one of the crowd, one to fit in. But I have tried. I was a feminist from a young age, staging my first feminist protest when I was five (or 6.) At 30, I divorced my husband and came out as a lesbian. Also, I did not choose a career where I might have made a lot of money, though I’m pretty sure I could have. 

Now disabilities have freed me—or cut me—from any possibility of being “normal.” Now I am not trying to be something I should be, rushing, overworking. I am more myself. Unconventional.

This has been freeing, but it’s also upsetting. In addition to being released from social expectations, I have lost parts of myself that I didn’t want to lose. So though there have been gifts from my tumors and disabilities, the losses are painful.

Although I’ve been writing about how grateful I feel—and I do feel grateful for my life and the gifts of this life—I’m also pissed. So far I’ve only been writing about gratitude, but I need to also write about feeling angry.

So how should I begin?          

Maybe I should begin with my anger, like this: 

The curb seemed steep, and I needed to step down it to get to my car’s door. 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.

Sometimes, my losses since neurosurgery to remove my first brain tumor overwhelmed me, but I kept trying to return to the life I’d lived before surgery. I couldn’t. I felt frustrated and angry at this woman and at my life. 

Now, twelve years out from surgery, I’ve had radiation for a second tumor and survived a car accident that sent me to the regional trauma center. Now, I neither drive my car nor work for a living. I’m living a new life.

In this new life, I do not feel lucky for my losses. I do feel grateful for the gift of living more slowly, more patient and aware of beauty everywhere, more open to so much kindness, less offended by the rapid world I am no longer part of. I am making peace, but I’m not at peace. I wonder if I ever will be.

Or maybe I should begin with a moment of realizing my life had changed, like this:

I looked at the high school freshmen, and they looked back at me. Twenty-four students sat in chairs crowded into the square their teacher had marked with masking tape. For this moment, the students were quiet and still. I was not their teacher. I was a literacy coach working to help their teacher meet their learning needs. I wasn’t assigned to him because he was weak. He had a strong reputation and had requested we work together in this class he was teaching for freshmen whose middle school teachers and counselor had identified as at risk of dropping out. Each week, we planned together. Then I observed the class and we debriefed the session. The previous week, we had talked about this class’s need for a crisp lesson, and he had asked me to model this crispness. I was excited for this opportunity to lead a class full of students, something I’d seldom done since neurosurgery to remove my first tumor had left me with disabilities. 

I fumbled the papers in my hands, trying to hold my cane as well as holding the papers where I could read them. I needed to get started, but there was so much to figure out. How could I keep my balance and seem confident? How could I read and simultaneously pay attention to them? This used to come so naturally. Now, I couldn’t even get started. I knew their attention, I was fragile and likely to break, so I started talking even though I wasn’t ready. 

For the first ten seconds, the students looked quietly up at me, the closest boys so near they could probably see my hands trembling. When I struggled to hand out papers, these boys twisted to look behind them at the second row of boys who were kicking their chairs.  As I finally began to read from the example, the whole class giggled at one another and gave up even a pretense of paying attention. 

In our work together, Todd and I had been talking about how to teach his freshman class. It’s a lively group, smart but not scholarly, and Todd struggled to get and maintain their attention during lessons. I was also struggling, and I suspected I was not helping. This had been so easy in my imagination. Even Tricia, with whom I’d connected throughout the year, started giggling with the friend next to her, then yelled at a pair of boys in the back, “Shut up!” She was laughing. My stomach tightened like I was going to vomit. 

The students were restless, talking to one another over me. I tried to continue, but it was impossible. I just couldn’t do it. I could not do what I used to do. I looked at Todd.

Todd scolded the class for treating a guest teacher so rudely and regained the responsibility of working with the group as a whole. For the rest of the class period, I worked with smaller groups. After the class, Todd and I discussed what we had learned about the students, what we wondered, and what his next steps with these students might be. 

After the debrief, I confessed how hard it was to experience what I could no longer do. In this moment of quiet reflection and confession, I wept. A tear slipped from my left eye, running warmly down my face. My right eye had not teared since surgery. I couldn’t even cry like I used to. 

It was time to acknowledge that the high school teaching part of my life was over. I was no longer the person these students and their teachers needed.

I ‘d need to feel gratitude for the time I’d had, and to seek my new adventure, but I wasn’t yet ready for gratitude. I hurt with loss.

Or maybe I should begin with the emotional complexity of the gifts and losses I’ve experienced, like this:

I sat on a log in the shade while my partner Ann throw a miniature tennis ball for our dog Dosey. Ann threw. Dosey ran. I sat. 

It was a blue sky day in usually rainy Seattle, and the April air was cool without the hint of snow it had all winter. Ann picked up the orange and blue ball to toss it underhanded across the dog park’s square. Dosey raced off before Ann had even gotten the ball. Dosey’s hair streamed back from the force of her speed, and her tail, usually a fluffy plume, flew straight behind her like a flag on a windy day.  The ball hit a tuft of spring green grass and bounced high in front of her. As she leapt and twisted her twelve-pound body to snatch the ball, her brown ears flopped back, and her body’s white hair gleamed. I could swear she was smiling as she trotted back to Ann, dropped the ball a few feet in front of her, and dashed off again. 

I loved watching our puppy playing so joyfully, and I felt frustrated that because of my disabilities I couldn’t drive her to this park or throw the ball myself. I could only sit on this log in the shade, my cane close at hand, and watch.

I knew there were gifts from my tumors, and Dosey was one of them. We couldn’t have had a dog before my brain tumors. In those days, we both spent our week-days at work. I was away from home most of the day, rising at four a.m. to be at the gym by five to swim and lift weights and hurry through my sun salutation before my workday began. 

This was a happy day, and mine was a happy story. Through my losses, I had learned to live differently and found a kind of peace in my slower, unemployed life. My wife was lovely, and my dog smiled. Without this disease, my life with my wife would be different than this one. We wouldn’t have a puppy. How lucky I was. 

I could think cheerful thoughts, but I didn’t feel happy. The muscles around my throat tightened, aching from the strain. I felt a gob in my throat that I couldn’t swallow, and I couldn’t pull enough air through the nostril that took in air today. I ached, but I smiled. I held my body stiff, still. I would not cry. 

…

I can imagine so many ways to begin. After all, I have a lot of stories in me. It’s been twelve years since surgery, and a lot has surprised me. Tired of drafting beginnings, I went to shorthand for the next four:

1.    Being helped across a street I did not want to cross. I stood on the corner and thought about: 

a.    Complications from surgery—conversation with nurse Joey or learning to walk

b.    After surgery: The graduate class I couldn’t participate in.

c.    Who I thought I should be—golden retriever

d.    Sleeping at Susan and Rod’s

My “helpers” gave each other high fives. I crossed back.

2.    In the trauma center, after the car accident. Sitting with Ellen—"Ann’s been through too much.”

a.    Surgery. “Complications.”

b.    “Goldie”—Alex’s nickname for me because I always wanted things not too cold and not too hot; not too hard and not too soft; not too loud and not too quiet…

c.    Working with Todd and realizing I couldn’t do this work anymore.

“I changed my mind. I would like some morphine now, please.”

3.    Watching the boys kick the trash can and stopping them

a.    The graduate class when I couldn’t participate

b.    Being helped across the street

c.    The prayer in the park

Intervening

4.    Sitting in the office that used to be mine—What I see and what I remember

Jargon like “summative and formative assessments”, “metacognition”, “NCLB”, “UDL” (Universal Design for Learning)

a.    Surgery

b.    Principals’ certification

c.    The boys kicking the trash can

Leaving the office/meeting with my colleague

Main idea—My life had changed. I needed to accept that there had been losses without being sunk by them. 

And later: That’s what life is. Pissed and grateful at the same time.

Now I think of Walt Whitman in "Song of Myself": 

                              Do I contradict myself?

         Very well then I contradict myself,

         (I am large, I contain multitudes.

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Perhaps my story is not so tidy as I had thought. I guess I need to write a more complex story, but I’m not sure how. What do you think? How should I begin?