Wheelchair Dancer is one of my favorite bloggers ever of all time. She’s already posted on the (re)thinking walking series before, so imagine how honored and thrilled I was to get her email saying she had another essay? WCD says she isn’t sure this is *quite* a rethinking walking post. I say…how could it not be?

I thank you deeply, WCD for sharing pieces of yourself with us–and to your grandma, hugs and love and songs as she moves where she needs to go.

“You can’t go out,” she kept saying. “I have to keep you safe. The street in’t safe.” And how I wanted to walk. I wanted to escape that apartment that we were in hour after hour, day after day. I couldn’t eat because I hadn’t moved. I couldn’t breathe because we couldn’t risk opening the windows. But I wanted more than to walk away from my work; I wanted to pull on my jogging shoes and run. It wasn’t safe. I didn’t know it then — I thought she was exaggerating — but overall crime rates in my grandmother’s neighborhood were shockingly high, even for the early 90′s. So, we couldn’t just walk.

I paced the apartment. I started a routine. I would jog in front of the window. “Don’t open that. Get away from there. They can’t know you are here.” Then, I would walk back and forth, reimagining the sweat of frustration and cabin fever as the aerobic burning of calories. I was studying and writing papers while staying with Grandma. Grandma, I recall, knew how to walk; she got on her tiny rowing machine — a device that someone had left in payment for the clothes she had sewn. “One foot in front of the other,” she called, laughing at the delicious irony. We exercised together, but I felt cooped.

I was studying hard for qualifying exams. I had gone through sheaves of notes and was still poring over my appalling scrawl when one night she tapped me on the shoulder. It was humid and hot, a typical East Coast summer night; we had no A/C, the neighbors added their music to the stultifying heat. She waggled what we in our family call the “Jamaican finger” (don’t ask) at me: “We goin on de street,” she declared.

I sighed, frustrated. She’d been at my back all day: “Are you done yet?” I’d tried several times to explain the complexities and competition of academic life to someone who left school at fourteen to be a seamstress. Her family couldn’t afford the education for her to be a surgeon; she figured sewing clothes was the next best thing to sewing bodies. I didn’t want to stop; I was getting somewhere. Finally, however, I saw the hurt, hope, and mischief in her eyes: we were going out.

My grandmother is a lady of style. She has CLOTHES. She made them all herself in glamorous Jacqueline Kennedy style. She needed only to see it once, and she could make it and several variations on it. I found her in the closet looking for a visor and sneakers. She bundled on several layers of mismatched clothes. Rags that she would rather have used as dusters. “We goin’ on de street,” her voice said, as she tossed me some things neither of us would be seen dead in.

I barely recognized her. Gone was the strut that came with her heels and in its place an urban shuffle. Head down, sneakers up, she snuck down stairs and on to the sidewalk. Nonplussed, I copied her. “My gran,” she nodded to anyone who made so bold as to speak to her. And we walked. Across the road. Into the wetness.

The first time, we hit a MacDonalds for fries. We were bad. Then, it was ice cream — double bad. Her eyes glowed. Then, I tried chocolate tofutti (god knows why), but somehow that didn’t sit well. “Need to take a cleanse,” she said, holding her stomach. Over the course of the summer and, indeed, the summer after that, we ate every flavour of ice cream that the shop-rite could offer. She didn’t like strawberry, but vanilla and chocolate were fine. Caramel was only OK, but mint chocolate chip was special. Her neighborhood didn’t have much. I learned that Burger King had terrible fries, that KFC was worse; MacDonalds and Wendys passed muster. We walked from apartment to store and back. That was our routine.

My grandmother’s condition is deteriorating rapidly. She’s at that point. It could now be quick (interesting that quick is the Old English word for “life”), or it could be weeks. Months, it probably certainly is not. She’s significantly disabled and on top of that has several intense medical conditions that prevent me from caring for her; she lives in a home in the community where she spent the last 25 or so years of her life. She used to have friends and connections who would visit her. I live across the country; I didn’t want her to be alone in California, away from the voices of folks from her part of the world. I wanted her to be among the people whose lives she affected, who brought her work — people with whom she worshipped and broke bread.

Her doctor said today that her life has no point. I was too stunned to respond; I politely thanked her for her help and hung up the phone. The doctor meant in the medical model, of course. A life has to have a function or a reason to have a point. Grandma has had no “function” or reason to live for years, apparently. And in addition to external stimuli and connections, she also meant that Grandma has no internal motivation to live (not sure how she could tell that).

It’s true that Grandma’s body has changed and that she doesn’t live as she used to or even see the people she used to. Her friends have died or gone to their own residential care centers. Her facility is not easily accessible by public transit (sigh); most of her friends depended on the bus. Simultaneously, Grandma herself has become less able to travel. I would have liked to move her closer to me, but I didn’t recognize the window of opportunity passing. I should have moved her while she was in the period where she was still able to interact with her friends. Medically (as opposed to disability), she is no longer able to handle either a commercial flight. Nor does she have the health or life skills to adapt to life in a new place. She is too disabled by her most aggressive impairments and too sick from other illness. Moving her across the country poses (so I have been told) a significant risk to her life. So, Grandma has stayed on the East Coast. A friend of the family visited/s often and was/is a local contact.

As we walked in the heat of summer, I learned about her wishes — perhaps her fears were her fears or perhaps they were her illness speaking. Either way, the woman who once had wished to be a surgeon wanted no medical interventions: no knives, no tubes, no drugs. Her faith — a hyper literal form of Christianity — was an important strand in her decision-making. God would call her when He was ready. The body is a shell: burn it. Don’t sit and watch me die. I want no fuss. No party. No mourning. She would be ready to move on.

Who knows what should be counted as a reason to live? Who knows what counts as medical care and intervention? Principles are one thing; circumstances are another. Would she, in extremis, change her mind? Would a feeding tube become desirable? Could we resuscitate her?

Do Not Resuscitate — check.
Do Not Hospitalize — check.
No Extraordinary Measures — check.

“Believe and you will receive. Doubt and you go without.” — OK, Grandma — check.