Good-bye 2016

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This post is a benchmark post for me. Hopefully, it will withstand any desires for deletion and be here next year when I can reference it and take stock, once again.

This year, not unlike last, has been challenging. During this time, I feel like I’ve been undergoing a test without end. This has been related most closely to my husband’s brain injury from a year and a half ago, and the cumulative effects caused by more than ten other such injuries during his life.

The questions haven’t been easy. What exactly am I made of? What does love mean? What are the limits? What are my limits? Is quitting an option? Running away?

There have also been the unending “to do” lists. Everything I’ve been doing has been to get us back on track, to give us the normalcy I’ve taken for granted, to secure us some peace and quiet.

Today has been a good day. I don’t know what the night will bring. I don’t know about tomorrow. Every day is taken one at a time, sometimes hour by hour. How do I manage this? Can I manage this? Do I want to manage this? These questions are quiet most of the time, but in the moment, when the yelling and raging begin again when I thought maybe it was over, I return to these questions. I return to them time and again.

What happened?

When my husband fell a year and a half ago, he broke a metaphorical dam in his brain, a dam that had been shoring up all the painful emotions and experiences of his life. That bit of energy that was holding this all in leaked away, leaving him with all his thoughts which he experiences all at once, demons that terrorize him constantly, and me as well.

What happened?

The doctors, nearly all of them, look at me like they are telling me something I don’t know. He’s got brain damage, they say.

Like this is news to the little lady. Oh, I’m shocked, I want to say as I lean back and pretend a faint.

Because really, these days, nothing can shock me. It isn’t that I’ve seen it all. I have not, thank goodness. But I am numb to the exploits of doctors. I am numb to the shock that they are in a “business,” the very personal business of milking the pain and misery of others. They seek to get on the “permanent payroll,” and my husband’s condition makes them drool sloppily.

But, I will stop here for a moment and say this hasn’t been true of everyone. By some accident of luck, or mercy, I found a naturopath, who is better than any of these “specialists.” An honest man, a man who tells it like it is, a doctor who doesn’t try to control us by emphasizing our ignorance and who instead patiently teaches. If you find yourself in a similar situation, find a naturopath. Save yourself as much as possible from this faceless machine of medical manipulation.

But enough of that. My husband seems better. I found myself saying shocking things to him like: “Get over yourself. You have brain damage. Now, we need to move on.”

This is what I said about a week ago. And things calmed down.

“Your memory isn’t that bad!” I yell back, in a weaker moment.

And, somehow, getting a little tough helped. Who knows, but my feeling is that we wouldn’t see any improvement, if he really had a progressive disease, which is what one of the neurologist said before suggesting a brain surgeon. We wouldn’t see improvement if he had CTE. This is my gut feeling. I have no idea. Who knows?

And why is this distinction important? What does it matter if he has CTE?

Well, CTE is characterized by anger, aggression, violence, murder, and suicide.

That’s why it is important. Getting back to those questions? How much is too much?

It hit me harder than I could have expected to learn that Carrie Fisher died. Star Wars was my favorite movie when I was a kid. It opened up my imagination like nothing else. Princess Leah was iconic and as we lost her, I at least learned more about her life and her challenges. And then her mother died a day later, and I learned more about her life and challenges. Debbie Reynolds had been friends with Elizabeth Taylor, and they traveled to Europe together, palling around with their husbands at the time, and then Eddie Fisher left Debbie for Elizabeth, turning fond memories of traveling in Europe into questions and despair.

These are beautiful people, and rich, and seem to have it all, and yet the beautiful and sweet Debbie Reynolds was not impervious to heartbreak. Elizabeth Taylor’s first husband beat her so badly she lost their baby, leading to her first divorce.

My husband is better than that. Truer, sweeter—a better human being. I’m reminded of this as I want to flee. I’m reminded that roses have thorns, and as much as I want my life to be glamorous and simple and sweet, full of adventure and triumph, full of love and fidelity, that life isn’t like that. Love is complicated. The brain is complicated. Personality is complicated and shifting. What stays the same in a person, against all assaults, what is at a person’s core? What makes them unique?

And so, some books came my way, that I can say I would never have picked up if I had not been invited to a wedding in India.

Before my last series of moves, I had been living in a town of 625 people. Bombay (Mumbai) has over 20 million. There’s no way this won’t fascinate me.

Good luck to everyone in the coming year. Best wishes for a safe and prosperous (and joyful) new year!

WW

 

And more stress

It turns out that my husband’s illness is killing me. My cholesterol is through the roof and my doctor says that it’s not my diet that’s causing it, but stress. Stress. And as I look back on my life, I realize that I’ve been stressed for a decade now. My mother’s illness and death, handling her estate, my grad degree, the job that followed that, and now my husband’s dementia. It seemed that everyone on earth was telling me to go get a therapist and her advice? Leave my husband. My dear friend who came to visit us said the same. Leave him. Forget those silly vows, get out now. And I have to admit, I thought about it. And thought about it. And cried about it. And prayed about it. And I asked for a sign. And the universe sent me a sign. What was it?

A peacock.

Are you f-ing kidding me? A peacock? That’s it. The universe hates me. There is no other explanation. I’m being mocked. By. The. Universe.

But somehow, seeing the peacock made it easier. I could chase a silly dream or I could face reality.

While chasing the dream is oh so very tempting and oh so very enchanting and reality is anything but, I will hate myself if I don’t do the right thing. And the right thing is to at the very least stay around and be his advocate. You just can’t go through our medical system without an advocate. And staying gives me the right and cause to call his family names, like coward. Which felt damn good, I have to say. I can’t ride the high horse if I don’t do the right thing. That is one of the perks.

But back to stress. Apparently my cholesterol is so high that it shoots off the allotted space on the graph. Everything else looks pretty darn good.

For some reason I’m going to buy a house and slip the yoke back around my neck. For this I’ll have garden space and room for a potter’s wheel and kiln. And perhaps another dog. I’ll be 30 minutes from a forest and about 30 minutes from work.

Questions not to ask your cute-as-pie lender: If I run away and default on my loan, what will happen to me? I’ll never be able to return? Anything else. How far is the long arm of the law?

Just kidding.

Anyway, a little internet research reveals some stress-fighting foods:

Asparagus
Avocados
Berries (blue and such)
Cashews
Chamomile Tea
Chocolate
Garlic
Grass-fed beef
Green tea
Oranges
Oysters
Walnuts
https://wilddivine.com/
http://www.menshealth.com/health/conquer-stress

I recently learned that abuse is about control. And as I am nagged about going to a store I don’t want to buy things at after I get off work in the evening, I think again about that yoke. Do I really want to slip my neck into it again. Willingly? Maybe riding that high horse isn’t worth it. Maybe I could step down off that horse and slither away to freedom.

Peacocks.

With all due respect, what kind of stupid sign is that?

 

The Universe said what?

It turns out that my husband’s illness is killing me. My cholesterol is through the roof and my doctor says that it’s not my diet that’s causing it, but stress. Stress. And as I look back on my life, I realize that I’ve been stressed for a decade now.

My mother’s illness and death, handling her estate, my grad degree, the job that followed that, and now my husband’s dementia. It seems that everyone on earth has been telling me to go get a therapist—and her advice? Leave my husband.

My dear friend who came to visit us said the same. Leave him. Forget those silly vows, get out now. And I have to admit, I thought about it. And thought about it. And cried about it. And prayed about it. And I asked for a sign. And the universe sent me a sign. What was it?

A peacock.

Are you f-ing kidding me? A peacock? That’s it?

The universe hates me. There is no other explanation. I’m being mocked. By. The. Universe.

But back to stress. Apparently my cholesterol is so high that it shoots off the allotted space on the graph. Everything else looks good.

Questions not to ask your cute-as-pie lender: If I run away and default on my loan, what will happen to me? I’ll never be able to return? Anything else? How far is the long arm of the law?

 

Peacocks.

With all due respect, what kind of stupid sign is that?

 

Today I came home early…

Today I came home early
He’s here, but he doesn’t come downstairs

That’s usual these days

He doesn’t call to me either
Also usual

The dog’s leash is hanging on the door knob, so I know he’s in the house

Then I see the dog
She’s asleep on the floor

I don’t know what to expect as I walk lightly
Up the stairs

Meditation music whispers through his door
which is shut
like usual

I open the door slowly
And he is there
On the floor
Flat on his back
Shirtless, eyes closed, rib cage defined, stomach sunk in

He doesn’t know I’m there
And I watch him for a moment
He is serene

Peaceful

What’s going through his mind?
Should I let him know I’m here?
Clear my throat?
Back up and come in again?

No

I close the door, nearly all the way

He’s still breathing.
That’s enough.

Mixed-Up Magical Thinking

I slept on the floor last night. My husband had been crying late into the early morning and then finally had drifted off into a drugged sleep. Every few minutes he would shake violently but not wake. It put me on edge so I decided to head downstairs.

I pulled out a mat that we had used for camping last summer and lay down on it. I had brought my pillow with me and I knew I had a blanket somewhere.

I decided to listen to an audio book by Mary Karr about writing memoirs. It was my idea that maybe if I delved into memoir writing, it would be like therapy for me and I would finally unravel the psychological demons that have been lurking around all these years.

I woke early as is typical of me. I usually get up around 5 and my internal clock naturally wakes me at this time whether or not it’s the weekend. I’ve been tortured by what my therapist said to me at our last meeting. The idea that I enabled my husband all these years. I gave him a place to live and a camera and didn’t make it difficult at all for him to carry on has he had, without a job. Without ambitions. Without financial contributions.

Why?

Why hadn’t I handed him divorce papers? Why hadn’t I given him that ultimate ultimatum?

All week I struggled with that. Some answers. One: I didn’t believe he could make it on his own and I didn’t want to see him living under a bridge. But much more important, I realized that I don’t play that way. If I had given him divorce papers, there is nothing he could have said at that point to change my mind. He could have changed completely and did everything I ever wanted him to do plus some, and it wouldn’t have made a bit of difference. I’m not that way. I don’t bargain over stakes that large. So I didn’t divorce him because I didn’t want to. I think my therapist was trying to get me to say I loved him. But that word doesn’t come so easily anymore. I’ve become too resentful, too angry.

It’s true though, of course. I do love him. But this love seems to be assaulted by a need for change, and I don’t want to change. I don’t want to change how I love or to engage in a different kind of love. A paternal or rather a maternal love. And that is, it seems, exactly what he needs.

One of the engineers I work with, very inappropriately I think, began talking to me about what men need. This was a man I had been working with for an hour and had never met before. He was supposed to be one of the giants at our company and I needed to interview him and write an article. He said that all men are little boys.

Excuse me. I hadn’t asked. I hadn’t brought up anything private or relationship oriented.

The advice came anyway.

Men are little boys. They need to be mothered.

I returned to my office and shook my head at my “big” boss. He didn’t understand. I didn’t explain.

I’m from a matriarchy. Strong Texas women. Abused, put down at times, but strong. Always strong. The idea of mothering a man disgusts me. My Texas brainwashing says that men must be strong. And as silly as I can recognize that this is and understanding that everyone needs a soft place to be and safety, it’s still ingrained in me that I’m no servant and shouldn’t be.

Mary Karr described passages from The Woman Warrior by Maxine Hong Kingston. This is a book I’ve never read but have on my shelf. I’ve been carting it around with me since grad school. I bought it from the school bookstore not as assigned reading, but on a whim. Karr’s description of this book was so intriguing that I went looking for it around 6 this morning and found it on my shelf. Now it’s laying on my table, within reach.

It promises stories of a rebellious woman. I can’t wait.

This morning, it strikes me with particular force that everything needs to fall away and I need to work on the memoir form. I need to write about my childhood and the brain injury and Russia and my father and how I was nearly raped in college but convinced my attacker to play Scrabble instead.

I’m not good enough for you, I had said. He agreed. Let’s play Scrabble to decide it. Drunk and stupid, a U.S. Marine that my roommate had brought home along with her boyfriend had barged into my bedroom and woken me up. Before I knew what was happening, he was on top of me tearing at my clothes.

He was convinced that he was going to do the deed. I had never seen him before. We were in near darkness except for a street light beaming through my bedroom window. All I could tell was that he was drunk, stupid, and built like tank. I was not going to be any match for his physical strength. I didn’t bother to struggle. Talking was the only thing I could do, so I set to it. I talked and talked, and now I realize that I was practicing some of the tenets of nonviolent communication. I was sensing his feelings and ultimately I gave him an out. Maybe he didn’t really want to be a rapist. Maybe he needed a way to save face. Since then I’ve talked myself out of a few “situations,” but never one as charged as that.

My roommate felt no remorse about his behavior or that she had brought him home. I never forgave her. I hate her to this day.

This was one of the scenes that played through my mind last night as I listened to Karr’s book. There are so many others that I need to release. Maybe it would help. Maybe.

I need to mourn the death of my former relationship with my husband. So says my therapist.

Why didn’t I present him with the divorce papers after say 5 years of not working? Because he was my only friend. The only person I trusted. The person I could confide in and depend on emotionally. I needed him. Now that part of him is gone, drugged most of the time to where I don’t know if it still exists. It must it seems. But I’m not sure.

I just know he doesn’t make sense anymore. The open person I once knew who didn’t hide from me hides now, and try as I might I can’t coax him out. On one hand I want to help him and sympathize with him, on the other I wonder what our lives will truly be like going forward. I can continue to try to manage the situation, to ignore the enormous gaps that are widening. Or, I can get my head together and figure out what it is I’m going to do. I suppose the first step is to figure out what I want. The next is to see if he can get there at all. The final one is to make some decisions.

My therapist says I have choices. But what choices are there when all of them are bad? Where is the choice in that?

What would you do if you could do anything? She asks.

I would travel the world on a trust fund.

Wouldn’t we all, she says, but what really?

No, really. That’s what I would do.

And your job?

It struck me for the first time that I actually like my job these days. I’m incredibly emotionally invested. I don’t want to leave.

But you would write novels or something if you could do anything.

And I thought back to the last Nanowrimo and remembered how difficult it was—and what crap I came up with. All of a sudden that idea, the idea of being a novelist, seemed incredibly unpleasant.

No, trust fund travel. I’ll stick with that.

But then I circled back to Mary Karr. She had tried her hand at fiction but found that she naturally gravitated to memoir. And when I think of tossing off creative writing for good, names get dropped like Gabriel Garcia Marquez and Paulo Coehlo and new people for me show up like Maxine Hong Kingston. Then I remember authors like Amy Tan. And of course guys like Hunter S. Thompson and Sergei Dovlatov.

And like a codependent lover, I’m back.

Surely, I never thought of leaving.

A friend in need…

When I was a kid, my grandmother filled my head with all these sayings:

  • A friend in need, is a friend in deed.
  • A rolling stone gathers no moss.
  • The early bird gets the worm.
  • Blood is thicker than water.
  • Birds of a feather flock together.
  • Early to bed and early to rise makes a man healthy, wealthy and wise.
  • No man is an island.

I used to ponder them. I would imagine a stone with moss on it, rolling.

This week’s winner was: Blood is thicker than water. I keep thinking it over and over again.

I was eager to settle the power of attorney problem. I could see “future me” laid up in a hospital bed and my husband freaking out, not being able to cope. Who would manage things? Who would pay our bills—with our money?

I addressed this question to two family members and to two friends. It’s an interesting problem. The family members are people I don’t really know. I know certain things about them, but I haven’t really ever talked to them. We haven’t had a meeting of the minds. We’ve never spent much time together.

The friends, on the other hand, I have spent hours upon hours with. Days. Years have gone by and there have been numerous conversations.

Further breaking this down, one family member was mine and the other was my husband’s.

My friends ran.

Well, not literally. They were concerned that somehow they could be held financially responsible for me.

I tried to explain that this was more of a risk for me than for them, a huge leap of faith for me in fact. But they felt exposed and not up to the task. If I were lying incapacitated in a hospital, they’d be happy to sign the get-well card, but they would not be there, not in any real sense of the word.

My aunt, who I have seen once in my life as an adult, stepped up. She accepted, with “I’d be glad to help you.” My niece also said yes and that she loves us.

I am humbled that I can call upon people I barely know to do such an important and intimate task. I am truly grateful.

I am also saddened that the people I spend the most time with…well, how do I say it? I guess what I’m trying to say is that I realize that I spend a lot of time on people who like me, but up to a point. There are limits. They both felt bad about saying no. I had asked too much. I had ventured too close. And yet, if either of them needed me, I would be there without hesitation. What else is there to say. I feel empty.

There are even people from years ago who could call me out of the blue and I would be there, regardless of time passed, regardless of hurt feelings. I wouldn’t even want to talk about it. What’s wrong? How can I help?

I told my friends that I understood their hesitation. It was a lot to ask, if such a thing came to pass. It would be a huge responsibility. It would mean really stepping up. Brene Brown comes to mind and her talks on vulnerability.

I tried to shrug it off, but asking made me feel the most vulnerable I’ve felt in years. Just the fact that I needed to ask, the circumstances behind my asking, and that when it came down to it admitting that these two people were the people outside my family that I considered to be my best friends in the world.

It’s a lot to ask someone—to ask them to truly be your friend, when you really need one.

Don’t ask unless you can stand to know.

So it would seem, I don’t have any real friends.

But I suppose I do have family after all.

 

Getting to know parts of myself

Word Wabbit has entered therapy. I found someone who specializes in caregiver therapy and dementia. She doesn’t accept insurance, so my wallet is taking a beating.

Insights from our first meeting. I need to find a caregiving agency close by. They typically take insurance and will take care of my husband and household chores at home while I work or get away for a few hours. As things worsen, this will be a must have.

Goal Number One says my new therapist: Deal with my grief.

I stoically agree. Tears run down my cheeks at the worst times, but for the therapist, nothing.

She prods a little. Restates my problems. Nothing.

Shows kindness and understanding. Nothing.

Calls my situation “heart-breaking.” I feel like a robot.

I’m not as easy as all that.

Crying in therapy is sort of like vomiting after a wild night out. You know you’ll have to do it, but you put it off as long as possible. The reality of it is daunting.

I was nearly ready to throw in the towel. This isn’t going to work for me, but she said something that I’ve been thinking lately.

Lately, I’ve been thinking that I have this part of myself that doesn’t want to cooperate with all this. Doesn’t want to accept it at all. No way. I like this part of myself—a lot.

Then there is the good part of myself. The part that wants to do the best job possible for my husband. This part wants to go shopping and make all his meals and monitor his diet and make sure he eats his blueberries. This part researches the brain and watches all the videos and translates the MRI. This part is no fun at all. But this is the part I respect. This is the part I show the world. That other part is the secret part. The part that whispers to me about island vacations.

My therapist says I have to make peace with these different parts.

I got home tonight and my husband seemed fine. It was a relief. Then he critiqued how I put the groceries away and my heart started to fall. The weight of the world began to bear down on me again.

“What do you want from this?” my therapist asked.

I want to be the best I can be for my husband. I want to accept this situation and deal with it. I don’t want to let it crush me. I still want to be me.