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.

How Halloween Charms the Grizzly Bear out of H.D.

… Step, stagger, speak, slur. Fog, fugue, forget, fret.

Step, stagger, speak, slur. Fog, fugue, forget, fret.

Step, stagger, speak, slur. Fog, fugue, forget, fret.

But suddenly:

Bell’s Palsy, ear PAIN!

Bell’s Palsy, ear PAIN, trigeminal NEURALGIA!

(Pain meds.)

Ear pain, trigeminal neuralgia, pain meds.

Ear pain.

And as a result:

Complain, expect, insist, subsist.

Lazy, crazy, hazy, home.

Bemoan, deride inside.

But tonight:

1000 zombie children come.

Swarming, wanting, fearing, thanking.

Adorable, inescapable.

Temporary cure for all the above.

 

 

When the mundane intersects with the sublime

When I was a young, active alcoholic it was my obsession, whether I was drunk or not, to interpret the ordinary as the profound. This was an easy intellectual exercise for a drunk, and doing so made me the creator of endless epiphanies that, despite my frequent dissemination of them in the bars to anyone within earshot, were significant only to me.

A lot of my material came from advice I got from my dad (I adored him) when we drank scotch together. I hung on the words he uttered as if they were his last. Perhaps parts of what he said might have been profound. He was an intelligent, thoughtful man. But the things I fixated on were quite ordinary. A lot of the things he told me became my mantras during my drinking years. I went to him because I was having  a great deal of trouble letting go of some emotional event and he said, quite seriously:

“Erase it from your mind.”

Ironically, whatever I shared with him that inspired him to say those words is collected in that ever-expanding universe that contains everything that I forget.

The alcoholic me latched on to the magical qualities in what he said. From now on, this was how I dealt with disappointments and kept traumatic events repressed. This, with a chaser, was how I ignored the possibility of HD being a part of me. But then I stumbled into sobriety.

When I got sober more than twenty years ago, I had to deal with some of the things that I had repressed. Life was very hard in early sobriety until I accepted that it was OK for my ideas to be ordinary and that they were, in fact, ordinary thoughts to begin with. I learned to avoid magical thinking.

For the past six years, I have known that I have HD.  When I am in a place of gratitude, I elevate the ordinariness of being able to function in any capacity to a higher level that, intellectually, I value more than I used to.

I can hold down a job.

I can maintain relationships.

I can swallow food.

I don’t wet the bed every night.

Enlightened by HD, I view these activities as far more than mundane.

And the sublime?

I listened to Itzhak Perlman play the “Theme from Schindler’s List” the other day and I believe that my spirit will be transfixed in this elevated place until I forget that I heard it. Could having HD can make such enormous beauty more impossible not to succumb to?

Anyway, my dad ended up having a stroke that decimated his short term memory. We were forced to have the same, simple conversation every five minutes for what I thought was too many years.  What I didn’t know was that kidney failure would finally claim my father and the toxicity of that disease makes people say strange things.

I stood at the foot of his death bed four years ago this fall. I was still struggling with my diagnosis and I was losing my dad. Some of the final words he said were directed at me.  He said:

“Be sad or be glad.”

Given our history, and given my history, how could I not make this my mantra? It is a simple choice that I remind myself I have when I sense that HD is overshadowing everything.

And I will always regard his words as quite profound.

Getting on with life

There has been a nagging feeling of things that need to be done, but exactly what those things are swirl around my mind and it is hard to capture them, so I am left with this constant undertone of confusion.

This morning, I was able to communicate some of them to my husband. In some cases, they are simple things, like “I need legal pads.” But when I have previously thought about buying legal pads that thought was also accompanied by the desire to not go back into Staples, where I have had an HD meltdown. So the legal pad need has been going unfulfilled as I write on the back of every lined piece of paper I find. There are some other things I needed that I could pull out of my head to tell husband.

One item is a small pad of paper and pens so I can write down the other things as they come back around!

I fell out of bed a few nights ago. I was sleeping like a rock and landed like a rock, too. It scared me, but I wasn’t hurt. I have been sleeping with a fortress of pillows around me or on the couch ever since. My husband is going to buy a baby gate to go on the side of the bed. I hope that will keep me from taking flight again. A friend of mine sleeps with his bed on the floor so when he falls off, he won’t have as far to fall. I think that is a pretty good solution, but like having the bed up, just because I am used to it and heaven forbid I try to change anything I am used to because I will stress over that.

I have discovered that being around people who I don’t know well is exhausting and I am very averse to it. Because I have an invisible disease, I wonder if and how many times I have met people. I wonder if I have told them about me, or if they already know. Yesterday, I dropped off some stuff at a neighborhood picnic and the difference in my level of comfort was so dramatic between the people that I knew well and those I knew by sight. It was a stark contrast. I was stressed out being around strangers in a setting where my reactions to their questions might make them uncomfortable.

In general, I am moving forward and am trying to do so positively. I have lost over 40 pounds (I am overweight) and each day I pretty much wake up cheerful. It just gets harder as the day goes on.

Sometimes, if something that is not routine occurs or something suddenly annoys me, I will take an extra mood stabilizer to prevent HD’s irritability from taking control. I had written “my irritability” but decided that I am not going to claim it. It is the disease that has installed the pressure cooker into my emotional center.

There is a woman who I wrote about in a blog about a year ago who introduced herself to me again and again until I finally started remembering her name. Her name is Vana, and she has become a beloved friend. She is headed off in the next few days to spend a year in St. Lucia to pursue some dreams and my happiness for her outweighs any sorrow so far because I am proud of her gumption and courage. I know it will hit me later.

Vana, I wish you the greatest adventure of your life, and thank you for becoming part of my family.

Thank God for the internet, right?

The importance of friends

It cannot be understated.

Yet I have realized that, after two nearly two years, I’ve never written about it.

After my husband, I have best friends-in-the-whole-wide-world.

BFINTWWW  love me as much as I love them.

I can not talk to them for weeks, but always know that they are there for me.

And, individually or collectively, they seem to always be coming up with things for us to do, places to go, bucket list items to cross off, and other ways of filling life with beauty so large that it blots out the bad stuff.

They are the ones who call me after I’ve been in hibernation.

The ones who have such a great capacity to love that they of course have many other friends. But they make me feel special and loved. And not because I have HD. They either knew me before I became aware of the HD and have made the choice to stick around or they have gotten to know the parts of me that peek around the HD and accept the me that I am.

Sometimes I think about the people who have discarded me but I do not miss them the way I used to before I realized that I was only doing the best with what I’ve been dealt.

People have just stopped talking to me and never acknowledged my words again. My usefulness or value to some people has expired. I have been cut loose because I “made the same mistakes over and over without growing from them.” I have been let go because I was not positive enough. I have received bitter diatribes because I no longer properly embody the role that was originally cast for me.  When I look back at my life and my friendships,  I readily admit that I was a pretty shitty excuse for a friend sometimes.

But all I can do is try to do better going forward.

And in the spirit of moving forward, today and every day, I thank the special people who have chosen to love me. The people who make my life whole and worth living.

I am simply blessed.

 

Closer to fine

After a few dicey days

or maybe they were weeks

or maybe it was the whole summer

I see a bit of light.

If I follow it, I think it could help me escape from where I’ve been trapped, an emotional cage that has felt like the hot, dark trunk of a stranger’s car.

I’m taking the extra, discretionary pill. I’m doing the exercise. I am following suggestions.

And even though I forgot to wash out the conditioner, I took a shower.

As recently as last night, it could have gone either way. But I am feeling some clarity that I’ve missed for a long time and I’m holding on to it. I am thankful today to be alive and to be able to have another pass at enjoying life.

So many people I know have lost one or more family members to HD recently and there are also some families that are winding up for that final unraveling.

To the Valvano family and the other families who are preparing either to memorialize their loved ones, or to bear down and stay with them through the end, I have thought about you and prayed for you often. I’ve remembered you, even while in the trunk. My thoughts have often been about you and the love that you feel for your loved ones and about the love the HD community itself emanates.

And somehow, wanting to stretch my arms across the miles to hold you has helped bring me closer to fine. 

https://youtu.be/HUgwM1Ky228