Category Archives: chorea

The Autumn Fall

I’m OK, but had a doozy of a fall today.

Not only was it a humdinger, but it was my public debut.

Ironically, it happened while I was shopping for and homing in on some sensible shoes.

I only wear level, flat, gripping, narrow shoes that don’t suggest in their design that they are going to take over the walking process or rub against each other. For the past two years, I have worn nothing but Skecher Go Walks, because they fit the bill.

But today I was on my way to visit my mother who has HD and is temporarily in a nursing facility. Nervous about the visit, I decided to first check out the shoes at the local department store.

And right off the bat I had a possible SCORE with the form factor, plus the shoes were black, soft leather, meaning that I could aspire to be dressy.

I looked around for my husband and son, but they were nowhere in sight.

I had to immediately try on the shoes, I felt, because I was already fixated on them.

So holding my purse in one hand and my cellphone in the other hand, I slid out of my Skechers and into the leather shoes, and in doing so I begin to lose my balance. I swayed back and forth, grabbing with my elbows the shoe rack for size 7 shoes for support in front of me and the shoe rack for size 8 shoes to keep me upright.

Meanwhile, and time would bear out how unwise this decision was, I stuffed my feet into the leather candidates and started to take a full stride, hands still full.

Unbeknownst to me, the pair of shoes was held together by a thick rubber band. This decreased my expected range of motion by 90% and I started going down.

It was a slow fall, as I tried to brace myself against the shelving, while holding onto my possessions while not hitting my head. After hitting the floor, I assumed a crawling pose on the store floor, but I still didn’t realize that the shoes were connected and continued to try to walk with them, which only made me bang my arms and legs and back on shelves and floor and probably myself.

I thought the mishap would never stop unfolding and when my body stopped moving enough, I lay there on the floor for a minute, taking inventory of my body parts and of my possessions. I was afraid that I would be quickly expelled from the store as a suspected drunk, but I was both pleased and alarmed that the many shoppers who were in view of the event just went right on shopping.

After a while, Randy and Mark reappeared and I told them what happened. They held my belongings and watched as I safely tried on the shoes. By this time the elastic had broken off and I didn’t pitch forward.

The shoes hugged me and felt like butter. I bought them and the checkout person remarked that the theft device bubble had been removed from the shoes as well, but they had not been stained. I felt a little stained.

I went to the nursing facility and watched my mother sleep. She looks like a doll when she sleeps. I tried halfheartedly to awaken her, but my body was starting to feel sore and I didn’t want to wake her up just to say goodbye.

I limped and staggered outside to the car and it was windy.

It didn’t feel like fall anymore.

It felt like winter.



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.


Whatever has had a hold of me for the past few weeks is loosening its grip long enough for me to begin to let myself peek out again.

Today I took a long, much needed shower. I put on clean clothes and put the clothes I had been wearing for a week in the laundry.

I went to the drugstore and bought makeup for the first time in twenty years. I bought eye liner and mascara, promising myself that I will wear it when I don’t think I might be crying. I have not put any on yet.

I also bought a round brush and a fat curling iron and I smoothed and curled my frizzy gray and black hair, so now I look more like other people.

Then, emboldened, I drove over to a couple of bars to pick up their music schedules for an article I’m writing. As I left each bar (sober as hell) and made my way to my car, I smiled as I staggered and brushed against the other cars.

To top things off, tonight my family is going to another family’s house for dinner. I am a little nervous about it because I fear the topic will turn to how I’ve been doing.

But my son pointed out that our host has only 9 toes, so maybe we can focus on that instead of my HD.


The discontent that snowballed started early in the day, when I took my little dog to the vet. I kept nearly falling over, stumbling and side-stepping. I took a deep breath and when I exhaled I didn’t tell the vet and the technician that I had HD. Instead, I just let them think what they chose to think.

It got worse when I got an email from someone I’d offered to provide administrative help to on a regular basis, wanting to meet and talk about the arrangement. I have been failing them. I know they want to meet because of the fact that I am failing them.

I know it is not my fault. I am not competent enough to do what I thought I could do. But I felt the same shame and guilt about it that I felt pre-diagnosis when I screwed things up. I revisited that place of disgusted amazement with my own inability to function and its negative impact on others and I stayed there.

By this time, it was dinner time, and by the end of it, I was wound up tightly. I was overwhelmed and my feelings were starting to leak out.

That’s when we got the phone call.

Someone, a woman, had gone to the highest point of the Neuse River bridge and jumped off. That news was more than I could bear, because not long ago, I had thoughts of jumping off of that same bridge.

I collapsed into a sobbing blob and forced myself to go into the bedroom and take my nightly dose of tranquilizers.

My husband came up to check on me and asked what I had been thinking about when I got so upset and I told him that I thought it was supposed to be me jumping off the bridge instead of that woman. He held me until the medication started taking effect and I’d calmed down, then he left me to rest.

Not long afterwards, my littlest boy, who is 10 years old and the size of a baby impala, jumped in my bed and gave me the world’s biggest hug and told me that he loved me.

I started blubbering again. “I am so sorry that you have to see me this way.”

“That’s alright,” he said, “I just think about Unicorns.”