Tag Archives: memory

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.



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.

Lost: Life’s little instruction book

Having HD, to me, is a perpetual search through different pieces of life’s little instruction book, aka my brain.

Some days chapters reappear, like the chapter about how to take my meds on time.

Some chapters I avoid reading because they scare me, like how to start dinner.

With other chapters, I see the words fading away and as a result, I can’t understand things I used to be able to understand because I don’t remember how to understand them.

Helping a group make decisions is becoming impossible because whatever chapters that I have to access seem to have been ripped out.

Being on committees is an embarrassment because I don’t have the preparation chapter anymore. Or the chapter about following through on what I said I’d do.

Or remembering what I said I’d do.

Or remembering anything at all.

I realize, too,  that I have been using this book as a flotation device.

But more and more, I find myself desperately treading water.

Searching for the chapter on how to stay afloat.


The long farewell

It’s always been the cognitive losses that scare me.

I wonder, if I lose my ability to speak or communicate, if I will also lose my ability to relish the good in life.

I have been taking mental snapshots every day of things that I enjoy and people that bring me happiness and I try to overlap my perseverating mind with this imagery in the hope that I can sear these experiences into my long term memory.

There is so much in my life to be happy about right now. I am head over heels in love with my husband. All of my children are healthy and well. I live in the house that I love.

My life has been enriched with more and better friendships than I ever thought possible.

And I am going places with people I care about. That is one of the greatest blessings of all.

This blog is especially precious to me. It has connected me with people all over the world. WordPress statistics show me the countries everyone is from and, while I love readers from everywhere, I always cheer if I see familiar, far away readers, like the people in South Africa, Russia, and the one person from the Isle of Man. When I check and see that the person from the Isle of Man has read my post, I get a rush of adrenaline and exclaim, “Yes!!”  I wish I could teleport to the Isle of Man just to meet this person and hear his or her story.

On a smaller scale, I am wringing out every last bit of flavor from each bite of ice cream. Cataloging each good vibe I get, and pulling together the experiences of a happy life.

I am enjoying the good and am trying to bank it, because I have nothing to lose.

Except the memory.