Tag Archive | Acceptance

Making Changes in MI

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.

Not Panicking

Have you ever felt like you should panic? That’s me right now.

In a couple days I am going to West Virginia. I already have hotel reservations and an appointment with a guy from the local office on aging. I have never done any of this. I have never attempted to move alone before. I don’t know what I am doing.

And part of me just doesn’t care. Is this maturity or burnout? Is there a difference? Sometimes, I think courage is just being too tired to give a damn.

I am emotionally exhausted. I have been caretaking for years now.

I am now the emergency room receptionist that tells the guy with the bleeding arm to wait behind the guy with the bleeding chest, who is standing behind the lady who has stopped breathing. If everything is an emergency, then nothing is an emergency. No human can live on the adrenaline rush of panic forever. At the very least, it causes adrenal failure. It is not sustainable. Eight years ago, there was the stage four cancer. The Huntington’s continues to progress. He might have prostate, thyroid, and/or lung cancer now, but that is impossible to know without actual diagnostic tests, such as CAT scans, biopsies, and the like.

And so I continue to make huge, life-altering decisions in the dark. I am woefully uniformed. And yet I must go on.

Part of me says, “What if he gets sick while I’m gone?” The other part responds, “Well, then he gets sick.” I am no longer willing to put my life on hold just in case something might happen. I am done, on oh-so-many levels. If something happens, my parents can call me on my disposable phone and let me know and I will come home. Otherwise, I will simply continue to make plans for myself and him. If he gets frustrated enough, he can actually talk to me and communicate his feelings. That would be refreshing. I don’t even get much of that anymore. My doing absolutely everything and getting no information or feedback of any kind is the exact opposite of my concept of a marriage. There is really nothing much left.

I guess that’s why I am not scared: I have nothing left to lose. I cannot take care of a house and a sick husband. The house is sold. The next steps are obvious and clear. Not fun, but clear. Panic is for people with something left to lose.

Abandonment and Release

“Most people have a question they ask spiritual teachers over and over again, and this is mine: How can I put forth effort and also rest? [italics in original] I open Goldstein’s book to find an answer and come across this line: ‘Abandon those unwholesome states that have already arisen.’…To abandon does not mean in this context that the life in something disappears, but that you let it move on without you….If all management generates an abandoned area, [italics in original] then we know that release is just around the corner. We know that cannot manage all of our gardens, all of our bodies. We know they will abandon us, be released from us whether we like it or not.” Notes on Abandon, by Leora Fridman,p. 53, Tricycle, Fall 2016

This is where I am at: abandoning and being abandoned, looking forward to release.

Last night, I talked to a neighbor and told her I sold my house for 15k. I could tell she was not happy. I just killed her property value. But my house was on the market for over a year and she never asked what I would take for it. Her lack of enlightened self-interest just hurt her financial best interests. I am not angry with her. I actually feel bad for her. In this individualistic culture, people just don’t think long-term. I had decisions to make and I made them without a lot of support or resources. And it is just now dawning on people that my choices might impact their lives negatively. Oh well. It is so not my problem anymore.

Yesterday I bought a disposable phone I can put minutes on. I had problems getting it activated, so I took it back to Wal-Mart. Today it worked because it took more time than usual to get activated. On the way, I was nervous, but decided to abandon the fear. There it was, but if they didn’t get it to work or give me my money back, I would end up going to Verizon and just getting a new phone on my old line. The point is that I do not have a choice. I must be reachable while down in West Virginia looking for a place to live. I have to have a phone. Period. Regardless of my negative feelings or anything else. They got it working. Yea.

So I decided that I could treat myself by going to some locally-owned Lansing eatery one last time. And I realized that all my favorite local places had gone out of business years ago. I didn’t abandon Lansing; it abandoned me. So many times, we do not realize just how much things have changed until we wake up, look around, and say, “Oh my god. Where did everyone go?” Lansing isn’t even a shadow of what it used to be.

Things change. I only have so much time, energy, and money. I must prioritize. Things will be abandoned in the quest for sanity while I try to take care of Barry and myself. My philosophy has always been “If you’re not going to help, you don’t get a vote.” Is anyone listening?

Compensating Dynamics

I am obsessive, not that anyone can tell.

Part of me has become a ravenous reader of books related to death. Obviously, a big part of that was Barry’s terminal diagnosis back in 2008. I wanted to prepare myself. And it is 2016 and he is still living and I am still reading. Frankly, it was starting to give me the creeps. So lately I’ve been asking myself why I am still reading these books. It didn’t take much digging to know the answer.

I want to know how to prepare. I want to know the signs of impending death. I want a clue. It sounds so obvious.

I’ve prepared as much for Barry’s (and my own, for that matter) as I can to this point. I have the plots, the grave marker, etc. Everything but a casket.

But what is with me trying to understand everything? I am simply trying to fill in the blanks because I am dealing with an unknown degree of Huntington’s dementia. Barry doesn’t understand much of anything and his communication skills wane by the day.

I think a big problem is my being left in the dark regarding just about everything involving his medical condition. Barry doesn’t want to treat anything, so all the health-care providers have gone into full-blown palliative-care mode. They are all like, “Let me know if and when he is in pain and we will address that then.” I see the attitude shifts sometimes when receptionists go from, “Please complete these forms,” to, “Don’t worry about all those forms.” And then there’s the neurologist at MSU that eagerly showed the intern/resident Barry’s enlarged lymph nodes and then casually told me to schedule an appointment for Barry a year from then. A year? Seriously? That told me that the doctor’s attitude was somewhere between “There is nothing more I can do for him,” and “I’m letting him go home and die in peace.” Given the medications he is on, I expect some 3- or 6-month monitoring.

This is part of why we are moving. We are moving for two reasons: 1) I am incapable of caring for Barry and the house and 2) we clearly need some more Huntington’s resources than we have here. Perhaps WVU will be able/willing to provide me with more information as to what is going on with him physically. Part of me does not even care what is going on; I just want a clue and maybe a timetable. I want to know what I am dealing with.

It reminds me of when I was working in my mid-twenties and realized quite suddenly that my family dynamics were such that, out of my three brothers and myself, never more than one sibling at a time had some huge drama. We managed to somehow take turns. How does that work? It struck me so hard at work that day. What the hell kind of subconscious dynamics were going on that the four of us so consistently managed to alternate drama?

Barry cannot learn and his communications are getting less clear by the day. So, in typical fashion, I overcompensate. The problem is that if I don’t do it, it simply does not get done. Period. How do I back off from that? How do I not overcompensate?

Advancing Without Excitement

The potential buyer of the house is bringing his investor by on Sunday to show him the house.  The guy probably thinks that what I am offering is too good to be true. That’s fine. If the investor agrees, I get to probably cheese off my realtor and sell my house for a $48k loss. Woohoo?

The last time I moved, obviously, was when we moved into the house. We were 12 or 13 years younger then. We moved into the house. It was the obvious next step in our lives. We had saved for years for a down payment and looked around at the various houses on the market. (OMG. I am so unbelievably glad we didn’t buy any of the ridiculously overpriced houses we saw back then! I would seriously be stuck in Michigan till I died. Not a joke.) There was the pride of ownership and the hopes and dreams of youth.

Fast forward to today. Barry is not participating in any meaningful way because of his health. In other words, I am moving us to a different state. We are not upgrading; we are downsizing. I feel like I am undoing everything from the first move. The dreams, hopes, optimism, and pride—all gone. This is me waving the white flag of surrender that I am incapable of taking care of Barry and a house.

And yet I am luckier than some people I know. My neighbor next door got foreclosed upon. One of my best friends declared bankruptcy, got foreclosed upon, and had to put her dogs to sleep because they did not handle the move to a Maryland apartment well. At least I have a house to sacrifice.

This is the first time I am advancing to the next stage of my life without any idealism, excitement, or pride. This is all extremely humbling (humiliating), nothing to brag about. And this is if I am lucky enough to sell it!

Coming Together or Falling Apart?

I am dealing with lots of stuff right now. The “tire pressure low” light that I need to get turned off, fixed, or whatever, an upcoming doctor appointment, needing to get rid of a desk, and maybe selling the house.

I’ll start with the giganto one: selling the house. I have a guy that wants to buy the house. I told him he could have it for $15k. My realtor is not going to be happy, but I have been lowering the price for a while, so she has no right to be shocked. I told her to lower it to $25k in September if it didn’t sell. I was going to have it lowered to $20k in October if no sale. And $15k by spring. How many more winters do I want to spend here? We still owe $20k, but we have enough savings to pay off the mortgage if the guy has the money. At first, he wanted to do a land contract and it sounded enticing. I told my realtor about it and she said, “I will not help you with a land contract. They’re risky and you’re still stuck with the mortgage.” I told the guy that I am trying to reduce the number of balls in the air (caring for Barry and the house are just too much at once) and that the last thing on earth I am willing to do is to pay rent somewhere and still be stuck with a mortgage in Michigan. Not going to happen. The house has been a grave for my hopes and dreams. It can have my body, too, if the alternative is taking on more responsibility. When I leave Michigan, I am not taking a mortgage with me. Period.

Of course, nothing has actually occurred. There is no point getting excited or worried about something that is not actually happening, right now, here, this moment.

But I couldn’t sleep last night for beans. I did my meditation and my heart hurt so badly I thought my chest would implode from the pressure, but I didn’t care. Let it. My brain cannot wrap around everything that needs to be done, so that is exactly what it tries to do, while I am trying to fall asleep!

My niece doesn’t want the desk. I have a beautiful desk from Oak Express that I am not moving with us. I will probably give it to Good Will. It was perfect when I was going to school, but I haven’t been going in four years and never desire to go back. The next step higher would be a DBA (Doctorate in Business Administration) and the only job description I have ever seen requiring one is being a teacher of MBA classes. Perhaps I will get rid of a dresser, too. I need to buy a few laundry baskets because right now Barry puts most of his clothes on top of the long dresser that I cannot imagine taking with us.

Up until last week, I had totally forgotten about my doctor appointment next week. I needed to fast for certain blood tests. So I did the blood draw today and voted (today is the first Tuesday in August). I hope my vitamin D level has improved.

Thursday, I need to go to Domino’s and order the pizza for Saturday for Barry for when I am at the Chevy dealership getting that annoying light turned off.

When I told a friend about the car appointment, the doctor appointment, and the possible buyer for the house, she said, “It sounds like things are coming together.” Coming together or falling apart? I have unbelievably mixed feelings about selling a house I purchased for $63k for $15k just to get out of Michigan. I am humiliated, fearful, angry, and a little excited.The bottom line is that I am not capable of taking care of the house and Barry and that, the longer I own the house, the worse shape it will be in and the more un-sell-able it will be. When I told my favorite barista at Biggby about selling the house for a pittance, she said, “Is this a good thing or a bad thing?” I answered, “Yes.”

The ultimate question never changes: what’s it worth to you to get out of Michigan and out from under the mortgage? I’ve seen so many people get foreclosed upon that perhaps I should feel lucky. Definitely not there yet.

How to Be Positive

The Presence Process is bringing stuff up. My skin seems angry at me. My emotions seem okay, but my skin is breaking out in odd places. Also, there is the bad warning light regarding my tire pressure. I feel like my car is literally “going off” at me.

I am always reading a variety of books, as usual. I had two books in one day give me the same advice: to focus on positive memories. I immediately felt resistance to that idea. It sounds so innocuous, until I thought about it. My resistance comes from two concerns.

My first concern is that I know people that have many positive memories—and that is what they talk about all the time. I am thinking specifically of one woman I grew up with. Every time I would see her, she would be like, “Remember when….” She was always referring to our early twenties, when I was very confused and felt like I had zero support. My response was always, “Yes I do remember. And it sucked for me. Moving on.” Back then was the last time she was happy and there I was, raining on her parade. When every conversation starts the same way, it gets old fast. I wanted to make good memories now, not live in the past. I also think of those hoarding shows where the people have had repeated, horrific traumas and all they do is think about “the good times.” They have no place to sleep, their residences are filled with vermin, and they have often lost their children to the squalor, and yet they are upbeat. These people, including the one I know, are all as delusional as can be.

The second issue, that I only realized in the past week, is that the only times in my life that I have been truly excited have been when I was looking forward to some future event where my needs would be met—and they very seldom, if ever, were. I was happy, not because anything good was actually occurring, but because of something I hoped would happen and then did not happen in reality. Invariably and inevitably, I would wind up feeling deceived, duped, stupid. Good times.

I don’t have a lot of positive and reality-based memories that I can draw upon.

Things are definitely becoming a lot clearer. Better? I hesitate to get excited about possible positive future experiences because I need to be functional, not delusional.

Trying to Get Beneath Things

During a meditation, I realized what I have always been trying to do: get to the causal level of everything. It explains everything: my obsession with simplicity, my interest in Taoism, endless therapy, my fascination with organizational dynamics (talk about a weird interest!), you name it.

The obvious problem is that most causes are also effects. Then endless cycle of karma is the epitome of what I am talking about. My understanding of the universe is that everything is interconnected and sometimes in ways we cannot see and may never fully understand. Anything that helps us connect more dots is often a good thing.

My epiphany had the ring of truth because my gut reaction was, “Ohhhhh. That’s it. Crap. How do I integrate this into my knowledge base?” Every time I have been excited at an idea, it has been because the execution of the idea held the promise of getting various needs (usually subconscious) met, whether romantically, religiously, socially, or vocationally. Of course the needs were never met because I was completely unaware of them until their never getting met became a foregone conclusion.

It reminds me of a book about the AIDS epidemic, The Band Played On, by Randy Shilts. Scientists were struggling to figure out what was causing all these bizarre maladies (horrific infections, cancers, etc.). An epidemiologist asked a patient what he remembered about the summer when he and all his friends (now suffering from similar problems) were all together. The patient mentioned “all the pretty boats in the harbor.” The epidemiologist instantly knew what the guy was talking about: the bi-centennial, 1976. The epidemiologist suddenly felt an instant foreboding. This was 1980. Whatever the hell was causing all these symptoms had a long latency period and people had been spreading it for years. Seemingly unrelated dots were simultaneously connected with haunting implications. Sometimes you almost wish denial was an option.

I want to deal with situations before they become problems, if that is possible. I want to deal with problems while they are still small, as the Tao Te Ching advises. Solutions always involve getting into the silence and refusing to unnecessarily complicate one’s life.

Easier said than done. Last year showed me that we are often given more than we can handle, belying Veggie Tales theology. Being forced to deal with things that are more than we can handle is called “trauma.” Sometimes you cannot deal with the underlying issue because you are too busy coping and just putting one foot in front of the other, and feeling good about being able to accomplish that much. Been there, done that.

So I ask myself what a life lived in the causal plane would look like. This is why I want to be in the back office somewhere, noticing everything and letting those in charge know the trends I see. I am not looking to be “the face of” anything. I am looking to make a difference on a deeper level than many people even know exists. Can I do this? Maybe someday, when my life is actually about me. But not for the foreseeable future. Right now, I am too busy functioning for two and dealing with the alert light in my car saying that the tire pressure is low, despite having two new tires and all the pressures being perfect. One thing at a time…..

What’s Realistic?

The other day, I was meditating, when the phone rang and it just hit me so hard—the limit of my ability to do even the smallest of things for myself. Of course, next time I want to meditate I will turn off the ringer of my phone, hoping to remember to turn it back on afterwards.

It’s not that I can’t do anything for myself. I go exercise and pet a cat at a friend’s place and do one morning of volunteering and practice Spanish online. It’s just that if I am looking for true, lasting change, it’s not going to happen as long as I am playing caretaker. As long as my life is not about me, it’s all just play-acting, trying to keep my sanity and not let my brain turn to oatmeal while taking care of Barry.

Doing “the presence process” takes the blinders off.  Eliminating distraction is eye-opening.

I’ve been getting things done that need to get done, things that are important but not necessarily urgent. I got some recall work done on my car, which will stop an oil leak, according to the dealership guy. Also, I got an eye exam, in preparation for getting my driver’s license renewed. I need to have this stuff done before the next phase of my life begins suddenly and unexpectedly. There is no drama currently, so now is my chance. These are the things that would instantly fall to the bottom of my priority list in an emergency.

I am so much more careful now regarding what I put my energy towards. I have to take Barry here and there. I have to make meals and take care the house, that kind of thing. A lot of the rest is negotiable and flexible. I am so much more deliberate and intentional than I ever knew was possible. I have had to downward adjust my expectations as to what I can accomplish for myself, by myself. And let the rest go (including little things like hopes and dreams), day by day.

I Chose It

Oh, ugh. I’ve been doing my connected breathing. Not as much as I should, but it is difficult because the standard is to do it with my eyes closed for 15 minutes at a time. Sometimes, that is not going to happen because I always have to be available to solve every problem Barry encounters, run all the errands, etc.

By not allowing myself a lot of distractions from dealing with my feelings, I see why people are so obsessed with distractions and entertainment. When one stops pretending that most of the stuff they do matters on some level, it becomes obvious just how insipid most activities are. Right now, I have a limited ability to make an impact on my daily life—because my life does not actually revolve around me. It sounds so obvious.

Last night, I went to the blessing and saw some of my New-Age-y friends. One of my favorite people told me she now has a new motivation for getting off the couch: Pokemon Go. She was telling us about how many people were in some park in Okemos when there wasn’t a holiday or anything else that would ordinarily justify the crowd and they were all looking for weird little things at particular spots and had to physically go to them to get balls or something from the game. It was great fun for her. I thought, “Eh? Why not? If it’s fun and doesn’t hurt anyone, go for it.” If you can find something entertaining to do and it increases your exercise level and sociability, there are worse things.

It just doesn’t work for me right now. Oh nooooooo. I am trying to let issues arise naturally. I just happened to pick possibly the most miserable time of year to do it in. The heat and humidity are becoming unbearable. The elderly, infirm, and the children are definitely at risk for the next few weeks, if not longer. However, I hesitate to bitch about the weather, given the fact that September is only six weeks away and when the heat truly breaks, it will be fall, instantly. Then the next season is snow-shoveling season. How do I feel right now? Hot and sweaty. Icky. Could I have decided to start the Presence Process during a less sweltering time of year? Maybe. But, like I’ve said before, this is my chance to allow the dust from last year (and perhaps many years) to settle and to figure out who and what I am. Now is the time and it is not as if I necessarily will have another opportunity to do this before the next wave of insanity ensues.

I feel like I am opening my eyes, waking up, looking around, and saying, “This is it? Where’s some chocolate and the remote?”