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?
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.
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.
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.
“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.
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.
Out in WV, I found a cute little apartment. It was real small, but handicap accessible. I started looking at a hundred I would have to make if I moved to WV, and every single one of them would have to be made in the next 2-3 weeks. OMG.
And then there was Morgantown itself. Absolutely beautiful. Extremely vibrant and busy. I would love the people. They are very friendly. Problem? The hills. There is no flat surface anywhere. Even the parking lot of the apartment I looked at had multiple layers and ramps between the layers. I saw one lady go down a layer without taking the ramp area and getting out of her car to see if she had done any damage.
My car was/is acting funny. Now I know the problem: the cluster. The issue was that the temperature gauge was going toward the red zone and I had visions of being stranded on I-79 or anywhere around there with an overheated engine and no family or friends. I could see me taking Barry to an appointment and being stuck and unable to even tell a tow truck how to find me.
I got home and my toilet decided not to work. I have a corner toilet and am now living with my parents until the situation gets fixed. Drama and trauma.
Don’t get me wrong. We still have to move. We don’t own the house anymore. But I will find an apartment in Lansing. The hundred changes still need to be made, just not all of them in the next three weeks. We still need to get rid of things, etc. But first things first. Getting the toilet fixed. One thing at a time.