Tag Archives: walking

What happens when you spy on grandma

We learned that my grandmother had HD later in her life. Before then, when I was young, I spent the night at her house a lot and, from a child’s point of view, the disease manifested in two ways: she ate funny and it took her an eternity to walk.

I noticed the walking especially at night. She would always make a trip to the bathroom at night while I was still awake. It was a familiar, irregular patting that I heard of her feet touching the floor. When I first heard her foot hit the floor, I pretended I was asleep but was really watching to see how long it took her to get to the bathroom. There were periods where she was still. Then she would make a few hurried steps then wait a long time for the next step to come. The steps went sideways, backwards, forwards and diagonal. When she was about to pass by my bed, I held my breath for as long as I could so she wouldn’t know I was awake.

Sometimes I thought my cheeks would pop open, but she never caught me watching her. I’ll bet I watched her walk to that bathroom at least 100 times when I was little. It was fascinating to me that she could move that way. I didn’t associate it with anything bad, or sick or wrong. That was just how my grandma got from one place to another.

Fast forward 45 years and my grandmother has been dead for 21 of them.

But I don’t forget how she wore her hair in plaits pinned in a bun with hairpins.

I don’t forget that she made biscuits using lard and she wrung the necks of chickens.

And I especially remember how she moved. More and more, my own body reminds me of hers as it struggles to somehow approximate and perfect the gait she created. Especially at night and especially going to the bathroom. I look down at the dark floor and let the steps fall where they may, my hands outstretched. Each night for a moment, in my sleepiness,

I imagine that I am her,

with the stops and starts and eternal, bizarre march.

But I wear my hair long and loose. I make scones with real butter and I cannot touch a dead, raw chicken, much less kill one.

By the time I make it to the bathroom, my surroundings remind me that it is me in the bathroom. Me with HD. And soon I begin the slow marathon back to bed.

I am glad no one is watching.


Walking with HD

My walking is deteriorating rapidly. I thought since I am losing weight, it would make moving easier. And it has to some extent. But as there becomes less and less of me to heft around, more and more, I’m feeling like the scarecrow in The Wizard of Oz. My legs go one way while my arms go another way. Meanwhile, I watch to see which wall or doorway I need to grab hold of to keep me upright or on course.

The only people in the world who have acknowledged my deterioration in this area are my sons. My youngest son lives with me and seeing me stumble around is just another day in his life. “You OK?” is a phrase he utters a hundred times a day. My husband is vigilant, responsive and never complains. I am grateful and I feel loved.

My two older boys live away from home. Recently, we were together in the NC mountains (at my friend, Nina’s house) after being apart for a couple of months and I think my sons were a little shocked by my decline.

My older boys, I noticed, were never too far away. When there was a stair to climb, a hike to attempt, and darkness to negotiate with, one or both sons were there, asking me if I needed help, extending a hand, or simply grabbing hold. I was grateful and I felt loved.

But the thing is, nobody came out and said, “Gee, you’re getting worse.”

People don’t like to say things like that that.

Still, sometimes I think I need to hear such remarks so I can better avoid avoidance and deny denial.

I wish someone would walk up to me and say, “I can tell it is getting harder for you to walk. I know it must really suck.”

No “I’m sorry” is necessary.

Just affirmation of my reality.