Setting My Sights Low

We move Thursday.

Right now, my only goal is to be functional throughout this process. I got a good night’s sleep last night, thanks to taking an anti-histamine. I don’t like relying on drugs to function, but it beats the heck out of staying up all night listening to my heart beat. I don’t care if I have to take drugs every night for the next week if it keeps me up and running.

I feel like I understand more now how my friend felt a couple years ago when she moved. Her house was getting foreclosed on. She was declaring bankruptcy. She had to put a couple of her dogs to sleep because they were not handling the move well or adjusting to apartment living (and were too old and sickly to train and discipline). She was looking for a job in another state and moving all her crap. She has heart issues.

My move is comparatively leisurely. I am able to move more at my own pace. I don’t have heart problems. I don’t have to work right now.

My main issues are the internal emotions. The external drama is actually quite minimal. It’s all me. I am angry that my life has become so small and unambitious. I have all this education and am doing nothing with it because I am keeping a sick husband going. I am angry at myself for all those years of not getting clearer as to what I want. Part of me is furious that I have to move at all, let alone do all the organizing.

What I am trying to focus on is that this is temporary. Barry is going downhill and accelerating his descent. My parents validated that this past weekend. It’s not just my imagination. Every time he coughs or hacks, the urgency factor to move goes up exponentially. I need to be ready for when he dies. That is a big part of why I cannot deal with a house and him. For him, this move is inconvenient; for me, it is a giant pain in the butt, but also non-negotiable.

And so I pack. And try to exercise. And meditate. And take anti-stress homeopathic herbs. And anything else I can think of to make me functional. Whatever it takes to be okay. Nothing else matters.

Panic Attacks?

I was talking to a friend a few days ago, telling her about lying in bed and listening to my heart pound and she characterized it later in the conversation as a “panic attack.” I had never thought of it that way, primarily because I do not hyperventilate.

I feel that old, familiar foot-standing-in-the-middle-of-my-chest feeling and wonder if this is what a heart attack might feel like. Sometimes, I pray to die simply because walking around feeling that way is truly oppressive.

It can be triggered. Today, for example, is haul-away day, the day to get rid of as much as possible before moving. Part of me feels that everything going on is wrong. This is my life and I hate having to do all of this myself more than words can say. Barry does not participate. I don’t know how things are going to go. The anger is palpable. Literally.

Logically, moving is not just right—it is non-negotiable. I could not take care of the house and Barry, so I sold the house. Now it is time to start vacating it. This is all very reasonable. Moving is essential. Snow is not far away. I have driven to Grand Rapids in late October in whiteout conditions when I was going to school. This needs to happen soon.

But my emotions are not cooperating. Meditating becomes nothing more than mindfulness of my chest aching. Whether my mind thinks something or is empty, the physical sensations are right there. Do other people feel this way? Is this normal?

 

Out of Assumptions

I realized a couple days ago what has really died in my life: my assumptions.

Last year was a living hell. Trauma after trauma. But I can handle chaos to some degree. What truly devastated me was the iffy mammogram. I had been hanging onto the assumption that I would outlive Barry for dear life. Having that assumption yanked out from under me eliminated all pretense of stability. What if I am making all this effort to keep my life up and running when I might be gone in a year myself?

I have been having mild panic attacks lately as I try to prepare for the move, which should be happening in the next week or two. The panic comes from not trusting myself or life to provide even the basics, even though we have enough in the credit union for a year’s worth of rent.

It is very hard to live without any assumptions. I stopped pretending to have faith a few years ago. It got to the point where having faith felt a little like having an invisible friend, which I had when I was about six years old. Believing something to be true does not make it so. It only makes you delusional. Faith might be comforting, as long as it works sufficiently when it is most needed. But imagine not knowing if your vehicle will start or your computer will work or whatever. I have been living in that place. I take little for granted. But this is an exhausting way to live.

I have been reading this book about “Homeless Kodo”, a Zen priest without his own temple. His attitude is that we are all homeless whether we realize it or not. I understand now. I feel like one of my mistakes has been getting comfortable where I am. “Comfort” to me has become a code word for “automatic pilot.” When people say they just want to be comfortable, I believe what they are actually saying is that they don’t want to have to think about absolutely every single choice.

The problem is that, once you find something that works for you, either you or the thing you do changes and no longer provides the same satisfaction. I never change anything until it completely stops working for me. I am very routine-driven. The routine has to stop working before it occurs to me to change it. Part of me just wants to be comfortable right now. That’s the hazard.

Can’t Quite Commit

I’ve been having a rough time lately, but reading some great authors. Emotionally, it’s been rough trying to organize the move myself and get rid of stuff. On the other hand, reading has been a sort of support.

I have all my degrees in a box now. A box. Not even a big box. It kills me that I owe almost 50k on these degrees that I may never use. They are unquestionably the most expensive pieces of paper I own.

The authors I have been reading are Stephen and Ondrea Levine and Melody Beattie. I really relate to these people. I feel like they “get it.” However, they all state that for a person to move forward in life, they must fully commit to the life that they have. Can’t do it. Nope. I would be disingenuous as hell to pretend to fully commit to a life that I am praying will end. I can’t commit to a life that is so little about me and my needs, to a life where my needs are such a low priority. Part of me will always be consciously or subconsciously looking for the nearest exit.

I suck as a Buddhist. I am no bodhisattva. A bodhisattva is a being that keeps coming back until everyone is saved. I don’t even want to be here now. Okay, I accept that I am selfish. Part of that selfishness comes from being horrified that I am pushing fifty, not working, not going to school, and only endlessly taking care of a chronically sick husband. And we are planning to move to an apartment that is more handicap accessible. What I want and need are really not relevant at this point. The hope is that maybe I can work if I am not taking care of a house. But that might require me fighting with the insurance company that has already deemed my needs as invalid and illegitimate. They collect premiums while providing no benefits. The insurance industry needs to made non-profit. Now.

So I am expressing my selfishness in do-able ways. Today, I took a bunch of books to MSU to be recycled. I got a haircut. I went to Planet Fitness. I bought some kefir. That stuff is amazing. It helps me to relax and sleep, no matter my emotional condition. All of my errands involved driving around. The weather has been spectacular. Global warming probably stinks in Texas in July, but it is totally awesome in Michigan in October. The leaves are brightly colored. It is warm, with a fabulous breeze. This has been the Indian summer of a lifetime.

I do not consider what I am living to be a “lifestyle.” I consider it to be a “death style.” I am basically waiting for Barry to die so I can start to really live my life. Taking care of him is just not quite meaningful enough. I so wish it were. I just never thought my life would come to this. I feel that life is essentially humiliating and only meaningful to the degree that you manufacture meaning. The human brain in a meaning-making machine. Only we could see a dead president in a potato or the Virgin Mary in a piece of toast. I can’t quite jerry-rig meaning when I know that that is what I am doing.

The Levines suggest trying to commit to “just this much.” Sometimes I can do that. And that is what I will have to settle for at the moment.

 

Trying to Learn

People want to help me. I am very happy about that. I am not being abandoned.

My problem? I’m not sure what they can do.

I have to move and I have to coordinate everything. I don’t even know what to ask people to do.

This is the issue: I need to learn everything I can from my experience now for future reference. In the past, I have transitioned from one situation to another with minimal awareness. Barry led the way. Now I don’t know the way and Barry can no longer communicate meaningfully.

Ten years from now, I want to remember everything I am thinking and feeling now. The good stuff, the bad stuff, all of it. I know I will make mistakes and I want to be able to look back and trace where I went wrong.

I feel like a student that cheated in a class and aced it. Then I am enrolled in a tougher class in the same subject and the assumption is that I know the material. In reality, I am behind and playing catch-up.

People want to help and I’m not sure how they can.

Grief and the Tao

Chapter 48

“In pursuit of knowledge,
every day something is added.
In the practice of the Tao,
every day something is dropped.” Stephen Mitchell Translation

Funny how nobody discusses whether or not the “dropping” is voluntary (versus life simply immobilizing your wrist in such a way your fingers release whatever they held).

Simplicity can be voluntary or forced. I am experiencing a little of both right now.

I am getting rid of a lot of stuff because Barry and I will be moving into an apartment shortly. Some of those 100 changes I need to make start now.

I am realizing that the changes will be all on me. Huntington’s is sort of like Alzheimer’s in that the person doing the caretaking bears the brunt of the changes because the person with the disease has such limited awareness of what is going on. Barry really just doesn’t get it anymore.

When changes are involuntary, it is called “loss.” Your status quo is gone.

I have realized that my absolute top priority is my sanity and peace. Nothing else works if those are gone. Stuff can be replaced, if and when I ever desire or have a place for it.

 

Wanted: A Cocoon

I’ve been trying to think hard about what I want. This is because I have no idea how much longer Barry will go on (two days or two years, it is impossible for me to know). What I do know is that I am  preparing for the next phase of my life. This isn’t just about right now.

I have to find a place to live. After realizing that WV would be too mountainous and isolated from all my resources, I was faced with a “specialty” toilet that cost $500 to replace and half a week to order and install. Drama, drama, drama. Ugh.

What I really need is a cocoon: someplace quiet, with as few distractions as possible, so I can do some internal transformation and start making the hundred changes that will need to be made for the next phase of my life. I am talking about that mystical combination of stillness and change. It’s hard to do the emotional work while lost in the mountains almost getting run over by coal trucks.

What the trip east did for me was to give me some highly precious solitude. I could organize my time and deal with emotional stuff at my pace, not trying to maintain someone else’s schedule. Being alone felt wonderful. I am hoping to achieve more solitude by not having to take care of a house. I can hope.