Category Archives: HD

Mean living

I get angry then I get mean. It tastes bitter and I try to keep it in but I can’t. Then it’s too late and I’ve ruined something.

A reputation, a conversation, a relationship, an evening. A family.

The thing that made me angry and then mean is gone, but I am left alone with my meanness.

Nobody wants to be around someone who is mean, not even me. But I can’t get away from myself.

I am lonely and I want to be around other people but I am afraid of what I will do to them. If this time will be the time that I go too far. That I break a heart or burn a bridge too completely.

Being mean is the part I have feared the most. They told me that lots of people with HD aren’t mean. They told me that just because my mother was mean doesn’t doom me to meanness. They told me that my true, kind nature would be exaggerated.

They were wrong. And now I’m mad at them too because I bought into their wishful thinking.

Every time it happens, it is harder to bounce back. Every time it happens, I feel less of myself left.

I think back to when I was twenty-something and I laughed and jumped from rooftop to rooftop with my friends in our platform shoes.

That girl can’t ever come back, and I miss her.

 

 

A sample foray into the world

I went to the grocery store today. Even though I don’t like going anywhere, I went just the same. Parked in a handicap spot, mostly so I would remember where I parked, and went in. Then waited at customer service for ten minutes to find out why there were no NCAA championship T shirts at the grocery store mere hours after the victory. I kept asking people about the shirts and they would answer me. Then I’d run into another employee who maybe thought I was confused and I, not really wanting to explain that I was generally always clueless at the store, would ask about the T shirts again.

The answer every time was, “No, we’re not getting in any.”

Finally, a man too old to know about the internet approached me and suggested that I purchase them online, something I had never considered.

As a result, I was forced to focus on trying to get the hell out of there with something usable.

This grocery store, which I actually like, has a meal suggestion center. The center displays all the pre-fab fixings for a dinner and the sides right there in one cooler. All I have to do is take them home, let someone else cook them, or watch them rot in the refrigerator. Today, I bought Spanish style breaded pork chops and plantains. Everyone at home, including me, thought it sounded icky.

But it was a decision that was already made by someone else so I took advantage of it. Because making decisions is excruciatingly painful, and is sometimes enough to send me into a fine frenzy.

I wandered around the store next, looking for Mark’s favorite afternoon snack which is also the staple for when I don’t feed him. I knew what aisle they were on and what color box they were, but even though I’d bought a million boxes of them, it didn’t register that they were Hot Pockets until I saw them. But seeing them, I knew for sure and shamefully picked up a box and put it in the bottom of the cart.

I was really hoping the pork chop idea would fly tonight.

It didn’t.

Everyone had leftover anything.

 

Stamina, or lack thereof

Mornings are when I function the best. I work better. I am more likely to leave the house. I am usually in a good mood.

Things have a tendency to change after lunch. At first I thought it was because of the heavy meals I was eating, but then I stopped eating heavy meals and was still pooped after lunch.

Then comes the question: To nap or not to nap? Usually I nap, but sometimes I don’t. Either way, by four o’clock I am spent for the day. Ready to take some prescription to head off the inevitable irritability. My brain is tired and my body doesn’t want to move.

And then everyone comes home.

That’s no way to spend a life, I think. I am spent before I get to be with the people I want most to be with.

And what have I left them with? No dinner. No clean house. No accomplishments to show them.

Only a tired, cranky shell who wants as little stimulation as she can get.

That’s no way to be a mom or a wife.

If only they could go to work and school while I’m sleeping at night, like real world elves.

They could come home and find me at my best, and, because they are elves, they would never be tired or need to sleep.

And we could frolic the way we used to.

It will be just like that split second years ago.

The joyous, resonant moment that I still base my “normal” on.

 

 

The slow fade

It doesn’t feel slow to me.

It feels like I’m being pulled in by the undertow over and over.

Miles out.

Into a dry ocean.

My thoughts are duller and they no longer fall over each other. There is starting to be space between them.

The level of oblivion I have towards daily life is something I have to try to sneak outside myself to measure. I have stopped cooking. I seldom use the car. I have stopped engaging with others unless I am directed to or am scheduled to. I know that there’s a lot of home improvement that I want to happen, but either it can’t happen soon enough or I don’t have faith it will happen at all.

The emotions I feel the most are impatience with myself for not being able to do anything right and regret when I hurt people.

The collection of memories and facts I’ve forgotten has outgrown its habitat. It needs an island of its own.

I sound like I’m drunk and people on the phone who don’t know me are put off by it.

And my brain is too thick with obstacles, too sick with HD, to be written about with any great insight by its owner.

What other people see is a slow fade.

But I can’t describe how fast I am becoming an empty vessel.

A remnant of myself, clinging to stay, bobs up every now and then.

Like a cork in a turbulent, empty ocean.

 

Reconciling a life and a disease

The days are tumbling on top of each other following the death of my mother who had HD. I never was able to visit her as much as she wanted me to. Even when I visited her every day she would barely let me out the door. Even when she was yelling at me, she didn’t want me to go. She wanted the connection. I moved away, my own HD progressed and I became less capable of making the 90 minute drive.

Then she started calling me, literally hundreds of times a day. She would sit for hours and hit the redial button and when I would answer, she would ask me when I was coming to visit. When my support system got wind of this, they insisted that I block her calls so I could try to get something done during the day and not have my heart broken every time I heard the despair in her voice and felt the specter of what could befall me. I told her I was having trouble with my phone. She sent me a few letters begging me to help her, but I confirmed that she was safe and being well taken care of. The letters stopped and I visited as often as I could.

At a certain point, long before her final days, she had decided that she wanted to consume me. I don’t know if it was the same dynamic as the time I was drowning and as people kept trying to save me, I climbed up their bodies, plunging them further down into the water. But for years I have felt her sickness manifested in a need for something from me that I could neither identify or satisfy.

Until she died, I carried an enormous weight of guilt because I thought that I wasn’t there enough for her. That I couldn’t see her or help her. That I had failed the one who had failed me the most, and by doing so, I had blown both of our chances for redemption.

Now even though she is gone, I still have a sense of her being. The memory of her unforgettable presence lingers and, more and more, I remember snapshots in my life from the times long ago when she showed me love.

But the oppressive guilt has lifted. I am realizing that I did the best I could based on my own condition, and that is more satisfying knowing that she is released from her diseased body and mind and no longer desperate.

Now it is my turn to live out my days and, while I have plans, I have adjustments to make to improve my health. I am formulating safeguards to protect my kids from what I went through. I am already having conversations with them about blocking me if I perseverate on the phone calls. And I am conveying my unconditional love to them the best that I can.

But I mete it out in small doses, because they are teenagers and I do not want to freak them out.

HD, grief, and The Gilmore Girls

(No spoilers) I started watching The Gilmore Girls on Netflix about a week before my mother died. I didn’t know it then, but I was setting myself up for some good grief therapy. At the center of the show is a relationship between a mother and daughter. It’s a superb relationship. The kind I dreamed of having. Since my mother died, I have watched about half of the original series.

In the first days after her memorial, it was all I could do.

Now I am starting to work my part-time job again and participate in life, and my consumption of the show is something I look forward to fitting in each day.

It seems like watching the perfect mother-daughter relationship would sting, because that is not what I had. Instead, it shows me how abnormal my situation was and I realize how much of it was because of my mother’s illness. And the happiness that I generate for the characters lingers and I feel happier all around.

The big lesson that is forming concerns what I want to do going forward. I want the people I love to know that I love them, so I am making it a point to tell them more often. It’s not eloquent like Lorelei Gilmore, because I don’t have my own writers. But it is not perfunctory either, because I mean it.

I also want to participate in the world around me. That means fighting inertia when it good for me and going out with my family. It means showing Randy and Mark New York City. It means travelling as much as I can and visiting people I love. It means enjoying every moment with Randy and making plans together.

Every now and then, it will hit me that my mother is dead. I will forget and remember again. I will remember the younger, healthier version of her. “My mama is dead,” I will say to Randy and sometimes some tears will come out.

Then I will remember how her brother who had HD writhed for years in a nursing home bed, unless he was strapped down or given paralytic drugs.

Because my mother was the stubbornest person I’ve ever known, I had every idea that she would share the same fate as her brother. But I am glad she did not spend her last years that way. She was only in a nursing home for a few months and was alert most of the time. But one day, she refused to engage in physical therapy and within weeks she succumbed to what we thought was a minor respiratory infection. I like to think she made some decision to let go…

Because of the way my mother died, suddenly the process of dying doesn’t seem so daunting and scary.

And because of The Gilmore Girls, the process of living suddenly holds the promise for fun, adventure and love.

So I am putting away the fears of dying and getting on with the living.

Losing my mom to HD

Sunday night, my mother died and her earthly existence ended. But I had lost her to HD years and years ago. She and everyone close to her were victims of her primary symptom: the ever-renewing anger loop. Only during the past couple of years did she take any medicine for HD. She refused until, somehow, doctors convinced her that she would feel better if she took medicine to slow her chorea and when she started taking that medicine, a lot of the anger went away.

Her anger, that is. I have spent years in therapy dealing with the hell that she put me through before I knew she had HD and started realizing that the problem wasn’t me. I have spent those same years trying to forgive her for hurting my family and other people I love because her behavior was caused by a disease.

Our disease.

Now, just my disease.

I have Facebook friends who have lost their moms to HD and they love and miss those moms. I wish that my mom was like theirs. I feel that way about my dad, who died of kidney disease, and was never abusive. I grieved when he died and I have an empty spot that he used to fill that I carry around now.

But with my mom, all I feel is relief. Disbelief that her dynasty of terror has ended. Part of me never expected it to happen. There is no longer a microcosm swirling around her demands or reacting to her use of the most hateful words she could spit out.

For her memorial service, we are putting together a presentation of the good in her, before the disease changed her. We have to go far back. I hope that being reminded that she was a healthy, kind person once, a person who did nice things, will help me in the forgiveness department.

Even more, I want to be happy for her. Happy that she is free from the disease. Happy that she is no longer out of control. Happy that she is at peace.

But someone asked me how I was feeling yesterday and before I could think of what I was supposed to say, I replied, “Fuller.”

And for now it’s true.

HD and the art of complaining

For several years after I tested positive for HD, I complained to anyone who would listen. “I am not going to be able to think. I am not going to be able to control my movements or speech.”

Essentially, the feedback I got was that it wasn’t happening all that much then, so I might as well not think about it and focus on enjoying every day.

And I have tried that, although it has mostly felt like I was playing a board game on the railroad tracks.

I have captured happy moments like fireflies in a jar and stared at them until they died.

Now the stuff I was worried about happening is starting to happen, and I have used up my complaining allotment. Now what I get, when I share what is going on with me, is that it is not HD and that it happens to everybody. Every time someone says that I want to vomit.

My situation is different now. I can feel the tracks rumbling beneath me and am being told to sit tight.

The thing that perplexes me the most is that, with HD, any sort of denial is perceived as coping. Pretending it is not happening means that you are dealing with it bravely.

I don’t know of many people with cancer who have thrived by denying it, who have been comforted by loved ones and professionals telling them it is not real or that it happens to a lot of other people and, therefore, is not anything to worry about.

My HD progression has increased my defiance with regards to anything I cannot comprehend. I am sick of feeling alone and invalidated.

And in the midst of this cognitive dissonance, I was asked to write something uplifting about having HD. That really pissed me off, to be honest, because I am in the middle of perceiving that my complaints are not being heard. But it was for a good cause and I really like the people who asked me. So this is what I made up:

“Routines are important and, living with HD, I hold my routines as treasures. Eating a healthy diet, walking with my husband, and even sitting covered with my favorite blanket are all simple things but, put together, they form a foundation for a life of substance. I am grateful to have some good routines in place and, when the time is right, I can plan and savor new, positive experiences. And if faced with stress, I have my routines to fall back on, to uplift me. Having healthy routines is like having a huge feather bed that I can enjoy landing on and that is always there to catch me!”

But what I really meant was this:

“I am incapable of achieving anything anymore. All I can maintain are simplistic routines, and even that is hard. I can’t remember processes, figure out procedures or follow written instructions. There are several things that I did last year about this time, like put up the Christmas tree and self-publish the book, that I can’t seem to do now. I stumble when I walk and sometimes my legs just don’t move when I tell them to. The train is coming down the track and all the fireflies are desiccated in the bottom of the jar. Someone please understand that this shit is happening and I do not know how to cope with it. All I can do is sit, covered in my blanket (which is an amazingly awesome blanket by the way) and wait.”

So many of my friends are liking on Facebook the first passage I wrote, which was a lie. They are thanking me for imparting wisdom that I lack.

The truth is that Pollyanna has left the building and I don’t know if she can come back.

But none of this is anybody’s fault.

And how I become acquainted with my fate going forward is my own responsibility.

I just can’t guarantee that I am responsible enough or intelligent enough to deal with it by ignoring how much it hurts.

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.