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

Me to HD: It’s not you, it’s me

I person I trust has told me that I have been manifesting depression and anxiety, not as part of my symptoms, but because of them.

It’s hard to wrap my mind around the fact that a departure from depression and anxiety will reveal that I am functioning better than I thought.

And that my brain is not melting.

I have to cut myself some slack and realize that living at, for example, 75% of my functioning capacity with a good attitude will yield a better me than freaking out over, say, 95%.

During the past week I have learned a little bit about what it takes to get me to do what it takes.

I’ve learned that I need to play a bigger role in my expectations for myself. I have made a schedule for myself consisting of the things I want to do every day that would make me happy.

I was as surprised as any one that I conjured up such a list. It’s a list of things that a happy person living a good, balanced life would do every day.

It is not my visual reminder.

It is not my promise to others.

It is not my tool for self flagellation.

It is something to work toward. I know that there are medicines that must be changed because I am still having difficulty, but I have to make the day to day success my responsibility.

Who else is going to be responsible for it?

If you didn’t listen to WeHaveAVoice’s  “All About CAG” radio show, I recommend it. It’s one of those recordings that I will be able to get a lot out of for years to come and I plan to listen to it under a variety of circumstances.

But what Dr. Lange said that spoke to me the most today was that the best thing I can do for myself, as a person with a CAG of 40,  is to lead a happy lifestyle and aspire to go to bed each night thinking that the preceding day was pretty good.

I am going to try this approach and while letting the HD do whatever it does.

Sort of like we’re taking a break.

 

 

What it feels like when things go wrong

I have been having severe psychiatric symptoms and have been asked to describe them, and am finding it to be difficult.

Yesterday I told my husband that it felt like the emotional equivalent in intensity and horror to the pain I would feel if one of my eyelids had been pulled around my head, down to my neck, leaving behind my skinned, painful head, unable to see anything.

I know that is not physically happening to me, but it’s the emotions and the pain that I suspect I would feel if that happened to me that I am trying to encircle with words.

It’s really important that I describe it in a way that make sense so the doctors will know what kind of drugs to give me. I guess whether I need to keep taking anti-psychotics or switch to mood stabilizers.

There are at least two parts of this emotional crisis:

One is this emotional pain described above. Another way to describe it would be to compare it to how I might emotionally feel if my fingernails were being pulled out slowly, one-by-one, only worse.

So this is constantly going on, and it manifests as my own screams and shrieks filling my head. I want to go through the house screaming and shrieking out loud, but I hide myself away from everyone else and it feels like my head is going to explode with the constant suppression of the screams of emotional pain.

The other part of this crisis is like a cloudy, smoky feeling of doom that washes in and swirls about while the first part is going on. It does not use words, but it communicates to me that I cannot handle much more of the first part, but warns that it may never stop. In fact, it could get worse and I could spend my life trapped in the first part with the second part swirling around. And that adds more panic and hopelessness.

Since I have been in crisis, these two parts have always been actively going on but I notice that it is quieter and easier to tolerate in the morning. It gets louder and more painful and harder to bear throughout the day until the evening when I run up to my bedroom, strap on the bipap (sleep apnea) machine and take deep, deliberate breaths until I fall asleep.

I hope that this description, along with a doctor’s visit, will result in some new meds and an end to this crisis.

 

 

Risky business

If you knew me in high school or college, no, I am not engaging in any of those antics! Instead,there is a disconnect in my brain that I’ve  been noticing, which can be best illustrated by the fact that I used my fingers instead of utensils to fry bacon in hot grease this morning.

The HOPES page on HD behavior symptoms shows in Figure W-2 the way the caudate relays information to the frontal lobes. Two women look in the mirror and think “My hair is long.” The one with the normal brain soon after thinks, “Get a haircut,” while the woman with the impaired brain thinks nothing about it.

I am the second woman.

This morning, to start things off, some of the plastic I had removed from the raw bacon had fallen into the heating pan and I reached for it and grabbed it out before the heat melted it. Then I just continued to use my fingers, because I they were already being used for that purpose, to arrange the raw bacon on the hot, grease-filled pan and to move it around. I used my fingers to rearrange and position the bacon until hot grease was splattering on my face. So I reached into the cabinet and pulled out one of those screens that you put over chicken when it fries. It was only after this point that the thought entered my mind that I needed to use a fork or some tongs to finish cooking the bacon.

Now, a few hours later, I have shiny fingertips where the fingerprints are less pronounced.

This disconnect plays itself out in different ways in my life. I will walk by a piece of trash and not think that I am supposed to pick it up. I will see my stringy hair and not think that  I need to wash it.

The odd thing is, I’ve realized that this is going on before, but because the part of my brain that realizes such things is not related to fixing the disconnected part of my brain, I continue to engage in the same risky behavior, or don’t do things that are apparent to others need to be done.

Just because I am aware that my behavior is inappropriate does not mean I can alter that behavior.

But maybe I’ll skip the bacon next time.

 

Flipping the HD switch

Yesterday started out like any other day, with the potential of being a day filled with hope, productivity and love. But for me, with HD, all it takes is for something to flip a switch, and everything is overtaken by the worst feelings of despair and foreboding.

The smallest negative thought yesterday morning flipped my switch, stole my day of promise, and rammed my will into what felt like a barbed, cramped metal container. I spent all day trying to break out, to outsmart, to out-wait the sinister captor.

No sleep came to provide respite. No arms were available with the exclusive purpose of holding me. The only voice that I could hear was my own, and the best advice I could give myself was to wait it out.

It would relent at some point if I just waited it out.

Towards the end of the seemingly endless day, I sat on the same couch where the switch had flipped twelve hours before.

This time I was medicated for the evening and was prepared to distract myself with television images until I was sedated enough to go to sleep. An end-of-a-bad day  game that had worked plenty of times before,  but failed this time.

Instead, I acted impulsively and inappropriately then lashed out at my family. I stomped upstairs and flung myself into bed. My husband was at my side shortly, and I acted out some more.

Then I felt so ashamed about everything. I had spent all day trying to fight my way out of the metal container, and was only then hanging my head out to draw in desperate breaths of the reality I had so longed for.

But in my quest for it, I had tainted it.

Today I am tired.

My brain is like a floor filled with mousetraps and I’m afraid to take a step.