Category Archives: forgetting

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.



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.

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 sting

It starts out innocently enough.

I am usually congratulating myself for following a routine.

Feeling success in my own complacence.

Building a wall that separates who I think I am from the damage that I cause.

Then I do the exact thing that causes disaster, as if I had been planning it for months.

I do something I had promised mere hours ago to never do again.

I am listening.

I am really trying to listen.

I really thought I heard it.

But in truth, it takes an ice pick to chip away my wall, so I can hear and register what is being said to me.


Then I am exposed and the truth stings like the hard flick of a wet towel on a baby’s cheek:

The person I love the most is choosing to have his life destroyed by me. That is not only his conscious choice for the future, but that is what I am doing to him now.

I can’t stand to be inside myself and I tell him to leave me, to let the world scoop me up and put me elsewhere. For him to start over and be happy.

But (thank God) he won’t. He stays and I feel guilty that I am happy that he chooses to continue to suffer. I wish that HD could impact only me and realize that most of the time I am under the misapprehension that it does. Only occasionally does my wall of denial crack sufficiently to let in the truth. The disease will suck me back to oblivion before too long. The lack of awareness that is part of HD will return and I won’t realize what I am doing to the love of my life. To the most important relationship I’ve ever had. And it won’t sting anymore because I won’t remember.

But I’ll keep hurting him, just the same.

“Now I’m just somebody that I used to know” Part 2

The me that I used to know could organize events.

But now I am afraid to check my email.

This me, this thing that is left, never bathes, rarely thinks before acting and has bouts of mental anguish every day at about five p.m.

I am left to wear the clothes of the person I used to be, and people still recognize me as such.

They expect more of me than I can give.

I explain my limitations, but because I look the same, they can’t accept that my brain is turning into mush.

Most people’s brains don’t change radically, if they’re lucky, so I can see how it might be hard to accept that I am a lower functioning being in some areas.

Several months ago, before I realized I couldn’t do it anymore, I agreed to help my church, an organization that I love, with marketing and promotion.

A split second after I made the commitment, I realized I simply no longer had the capacity to do what it took.

So I wrote a long, frank letter to the group’s leader, explaining that, at the very most, I could take notes at meetings to give to my husband so he could do his part.

Yesterday I received a letter from the group’s leader, saying that if I still “WANTED” to help with promotions, these are the things I could do.

I wanted to bash what is left of my brains on the wall.

To think I am not doing this because I don’t WANT to when there is nothing more I would love to do than to be able to function again.

To not accept what  cannot be seen. On a churchy level, I thought people would be able to accept the reality of my brain damage using this spiritual metaphor, but it is not turning out that way.

There is nothing more that I would WANT to do than to help my church. I love it and everyone there and even though I know it is not my fault that I have this disease, I kick myself every day for not being able to contribute more.

I will do what I can, but I hope they understand it will be in the form of handing out brochures.

Until I can’t do that any more.

“Now I’m just somebody that I used to know” Part 1

Now and then I think of when I was together
Like when I said I felt so happy I could die
Told myself that you could not hurt me
I felt denial in your company
But that was wrong and it’s an ache I still remember

You can get addicted to a certain kind of sadness
Like resignation to the end, always the end
So when I found my world could not make sense
When I couldn’t understand my friends
I’ll admit that I was glad I was sober.

But you didn’t have to cut me down
Make out like it never happened and that I am normal
And now I need my family’s love
But I treat them like they’re strangers and that feels so rough
No you didn’t have to stoop so low
Rearrange my brain and then hide its mapping.
I guess that I don’t need that though
Now I’m just somebody that I used to know

Now and then I think of all the times you screwed me over
But had me believing it was always something that I’d done
But I don’t wanna live that way
Reading into every word I say
You know I’ll never let it go
And I’ll always be hung up on somebody that I used to know

But you didn’t have to cut me down
Make out like it never happened and that I am normal
And now I need my family’s love
But I treat them like they’re strangers and that feels so rough
No you didn’t have to stoop so low
Rearrange my brain and then hide its mapping.
I guess that I don’t need that though
Now I’m just somebody that I used to know




Original Lyrics: Gotye – Somebody That I Used To Know Lyrics | MetroLyrics

Published by
Lyrics © Kobalt Music Publishing Ltd.

Read more: Gotye – Somebody That I Used To Know Lyrics | MetroLyrics

Dear Ben,

Thank you so much for the email and for donating a print.

I’m sorry that I kept you out of the loop this year with the paddle.

The reason is because I am keeping myself out of the loop involuntarily. I often forget that it is going to occur and when it is going to occur and what needs to take place and who needs to do what and I’ve tried to find other people who understand my limitations and can make those decisions.

But you should definitely be on the email list. That is something I can do. I’m really grateful for you as a friend and for having started the paddle and I’m glad that you are healthy and well occupied.

I am generally frazzled but I try to enjoy each day as it comes and try not to worry too much about what I forget.

This is one of those cases where I really wish I didn’t have HD because I would’ve communicated with you much more about this event than I have.

Please forgive me and I hope you understand why I simply don’t remember to do things at all.

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.