There is a Beatles’ song, “You won’t see me”, that makes me want to cry. Here is my favorite tidbit: “I have had enough, so act your age/ We have lost the time that was so hard to find.” Who hasn’t had that experience, of trying to get together and simultaneously dealing with relationship drama?
I am aging and I feel the sting of impermanence every minute.
That is why I hate denial. I have been reading about grief and denial is always listed as the first stage. However, for some, it is a way of life. Barry doesn’t want to know what is going on with his health and so I no longer attempt to communicate with him about anything much. If he wants to be in denial, what’s the harm? The harm is the loss of time to do something meaningful.
Time is your life. No distinction can be made between how you spend your time and how you spend your life.
Denial is only a stage because reality always triumphs. Always.
Time is the currency of finding integrity. I quote A Hidden Wholeness by Parker Palmer (p. 164):
“Courage comes as we understand that no punishment anyone might inflict on us could possibly be worse than the punishment we inflict on ourselves by living a divided life. The divided life ends in the sadness of never having been one’s true self.”
Time is short. Denial is not your friend. Wake up while you can.
I have a new computer. The other one died suddenly.
The purpose of buying a new computer is to be able to job hunt when Barry passes. And to use email.
Barry doesn’t want to know what’s going on, so I won’t tell him. I will leave him in the dark, all the while making plans.
I am letting things happen. For example, I know that he has a dentist appointment at the end of April. I am not going to say anything to either of them. If the dentist is competent, he will notice the lump on Barry’s neck that was not there six months ago. And the bad breath. (Who knew bad breath could be a sign of oral cancer? Internet research.) And possibly the stuffy nose.
If I say something, it is all about me—and I am done with that. We’ll see what Dr. Dewitt has to say. I won’t pretend to act surprised.
Even if he doesn’t, Barry still has a new, suspicious lump that will not be treated.
Meanwhile, I continue to get things in order and keep the boat afloat.
I had a big argument with Barry a couple nights ago. I was trying to get him to acknowledge that the cancer was back and that there was a tumor growing on his neck. I told him how frustrated I was that I had to deal with the outside real world by myself while he sat in his chair and pretended everything was fine.
Then Barry says, “Why are you continuing this useless argument?”
I agreed and said, “You’re right. There is no point trying to communicate with you. You win. Good night.” I went to bed, alone.
An argument is only useless if the person is not listening. By telling me that we were having a useless argument, he was admitting that he was not listening nor did he intend to at any point. No listening equals no communication. No communication equals no relationship. It really is that simple.
I want the world to understand this: an argument is an attempt to communicate. Maybe not the best or most mature, but an attempt nonetheless. If you are sitting at the kitchen table arguing with someone, in a twisted way, that is actually a good sign. That person sees themselves as having a relationship with you and is making the effort to communicate with you. When they quietly push their chair away from the table, get up, walk out the door, and lock it behind them, you are in deep trouble. Because they are done with you. The relationship is over. It is probably beyond repair.
Think of a business situation. The person the boss needs to worry about is not the one in his/her office screaming in his/her face. No. The person the boss needs to worry about is the person they blew off last week, refusing to talk to. When the good employee suddenly gets reaaaaalllllll quiet, they have probably given up on you and your organization. Their resume is now likely on every job-hunting website they can find. They are done with you.
Silence is not agreement! That is a top-of-the-food-chain mistake to make. Only people with unearned privilege seriously believe that silence is assent. The rest of us know better.
I have almost nothing left to say to Barry. I’m sure he just thinks I have an attitude problem. I am forced to live in the real world and handle all the responsibilities. My confrontation was a last-ditch effort to get him on the same page as myself. You see, I do not have the option of living in his delusional world. I have to function. When I lose my mind and end up putting him in a nursing home, maybe, just maybe he will get it. Or maybe not. Either way, real communication with him is clearly a useless effort. He said so.
I took Barry to the physician’s assistant yesterday. I feel some better.
She saw the new lump (where the old tumor had been). If Barry wants, we can have him get a CAT scan, but he would have to be heavily sedated due to the Huntington’s. Not gonna happen.
I feel a little better because she affirmed that I am neither crazy nor blowing things out of proportion. This is not Cindy being paranoid. The lump is very real.
But I am going somewhat crazy because Barry is simply acting like things are normal. By what perverse definition of “normal”? I heard him tell one of his sponsors Monday that he had a routine scheduled for Tuesday. Routine?! Are you freaking kidding me? Your wife thinks the tumor is back and is dragging your butt to the doctor’s office to have it looked at and this is your concept of “routine”? He seems to have close to no emotional reaction. I feel like I am dealing with reality alone. I doubt I will feel terribly guilty when the time comes for me to put him in a nursing home because he seems just a little too okay with dumping the burden of dealing with reality on my shoulders. I am dumbfounded.
My issues come from dealing with my family and their denial of my brothers using drugs. I simply have no respect for denial as a coping mechanism because all it does is to shift the responsibility onto everyone else around the person in denial. Reality is stern and cruel and takes no prisoners.
I hope I never do to someone else what Barry is doing to me right now.
I am procrastinating. I don’t want to send in my Sallie Mae information this year, even though it is pretty much exactly like my info last year. Since my adjusted gross income is less than half what I owe, I will not have to make payments this year, either. So what’s the issue? All I can think of is that I messed it up last year by filling out a section regarding Barry. Since we filed taxes jointly, I naturally assumed it was necessary. No. I filled it out in error because he does not have student loans. No loans means don’t fill it out. I had to send them a copy of my POA I have over him and then they were disputing my durable POA because the notary’s commission had expired in 2013. I had to almost threaten them with legal action because they didn’t understand the concept of a “durable” POA. It never expires. Kind of the point. Now I need to make absolutely certain that I don’t make the same mistake again this year.
Part of my issue is that I am also trying to kill time without driving myself nuts. Next week, I take Barry to the physician’s assistant to have that lump looked at. Do I know that it’s a tumor? No. What I do know: It’s a lump, it doesn’t hurt, and it’s exactly where the last tumor was. If it hurt, that would actually be a good sign because swelling plus pain equals infection, which is generally easily cured with antibiotics. If it’s not an infection, then WTF?
I’m just tired of not knowing anything. Part of me doesn’t care anymore what it may or may not be.
What do I want? I want, more than anything else in the world, to be able to stop pretending that everything is fine. (Not that I’ve been doing a great job of it.) I want validation that my concerns regarding the lump are not hypochondria. For a normal person, a lump does not necessarily indicate cancer. It’s kind of like having a headache and saying, “It must be a brain tumor.” If you don’t have a history of cancer, that conclusion is likely a delusional leap. There are a million other far more likely scenarios. However, if you did have a brain tumor five years ago and now the headaches are back, the conclusion might be perfectly reasonable. Cancer is truly a game-changer.
I want to live an authentic life. I want to not have to pretend things are normal as they collapse at my feet. I want to be able to grieve at home. Yesterday, because it was Friday, I went to mall before buying groceries. I spent probably a half hour crying. If I did that at home, Barry would think I was over-dramatizing things. Uh, no. These are my real feelings. But if I express them at home, I have to deal with my feelings plus his reactions to my feelings. That just ain’t worth it most of the time.
So I spend my time avoiding my feelings and trying to get things accomplished. And driving myself nuts.
A lot of stuff is happening.
I’ve been wondering about the lump on Barry’s neck. I talked about it with my shrink and he suggested that I take Barry in to the physician’s assistant (PA) just to have it visually looked at. No biopsy, X-rays, or anything like that. This would be for me to have a clue. Perhaps it’s just an infected salivary gland or something similar. I thought, “I could do that.” I decided to make an appointment for that purpose. Barry is not happy. In his mind, since we have agreed that we don’t plan on biopsying anything or pursuing treatment, we obviously don’t need to know what anything is. I never agreed to that. He doesn’t like that my imagination runs away with me, but that is what inevitably happens when I have no information and everything is left to my imagination. I put my need for accurate information ahead of his need to pretend that everything is normal. I feel so much better at even the prospect of real information. Whether the news is good or bad, I want to know.
I came home yesterday to a call from the office on aging regarding Barry being on a waiting list for in-home care. I’ll find out what that is about. If I could get reasonably priced respite care, I could do more volunteering. I want to have some semblance of a life. I really don’t feel like I do at this point.
I feel like an actor in a play that is unwilling to put on the mask and play the assigned role. The mask is called the “persona” and I have kicked mine to the curb. I am standing off-stage saying, “You want me to do what exactly? Are you kidding?” I’m not throwing a fit; I’m just putting on my coat and getting my car keys. I’m preparing to go to a Biggby’s and get a big mocha. Caffeine is my addiction of choice, and chocolate and coffee are the magic combo.
I believe there is an urge toward wholeness. I blogged about feeling cramped. A day or two later, I dreamt about being in a very large field. I woke up to use the bathroom mumbling, “So much space. So much space.” A normal person would’ve thought I was nuts. I believe my subconscious was doing what it could to right my psychological ship. Some part of me wants to feel sane. My needs make themselves known in such an interesting variety of ways.
It feels good to prioritize my needs for a change. Not natural but good.
I feel like a mean person. Part of it is that I feel like people don’t understand. Maybe they don’t, but I am feeling really claustrophobic in my life.
The other day, I asked Barry if he planned to look at the lump on his neck and he said no. I basically went off on him. I explained that I do not have the option of not noticing things. And that if he chooses to not even so much as look at it, I will see him simply as a child that I have to take care of and not as an adult. If he gets to live in la-la land while I handle everything by myself, I will consider myself to be the only grown-up in this relationship.
Part of the anxiety is knowing that if he lives indefinitely, I will have to put him into a nursing home and I am not looking forward to that. I do not want to deal with the insurance company that has already denied one very valid claim. (The insurance industry is evil. Definition of evil: putting profits before people’s needs.)
The feeling is that I can’t move in any direction.
A bit of possible good news: two different friends told me Monday that they intuitively believe my house will sell by June. That would be awesome.
Also good: the snow is mostly gone. Shoveling last week wore me out. It is physically and emotionally oppressive to shovel snow in a state I hate (Michigan). It is very symbolic of the burdens of my life.
I am so sorry. I have never been very good at socializing and all I want to do now is crawl under the covers until Barry is six feet under.
I am sorry, Ninasusan, if I am overly curt. I’m even worse in person.
I hope I’m not like this forever. I meditate and am trying to act like a normal human in vey abnormal circumstances. By the time I get good at it, my time might be up.
“None of us can know much about second-half-of-life spirituality as long as we are still trying to create the family, the parenting the security, the order, the pride that we were not given in the first half.” Falling Upward by Richard Rohr, p. 42
I have many unmet needs from the first half of life: pride, parenting, role modeling, career success, order, you name it.
And then Barry got cancer and everything changed. Suddenly life was all about wills, advance directives, final arrangements, and that kind of thing. I figured I would need an education for after Barry died…and then got a questionable mammogram myself. My assumption that I would outlive Barry was gone. Eventually, I got a normal mammogram, but it didn’t have the power to reinstate the old assumption.
I feel humiliated by life. Few of my goals or hopes have come to pass and now it feels too late. Right now, nothing is even about me.
Even after Barry dies (if he goes before me), how do I care about a career? How do I pretend it matters to me anymore? The unmet needs go nowhere, following me around with no promise of eventual fulfillment. I can try acting like these needs don’t matter, but I suspect my lack of aggression getting these needs met is precisely why they never got met in the first place. I didn’t place enough emphasis on what I wanted or cared about when I was younger and now it may be too late. I do not have the satisfaction of a life well-lived.
I told Barry yesterday about the lump on his neck. I’ve been watching it for a few months and it is not shrinking. I thought, “Maybe it’s not cancer. Maybe it’s just enlarged lymph nodes.” A few days ago, I remembered what the surgeon said after the tumorectomy: he removed the tumor, sliced a large nerve on that side of the neck, and removed a bunch of lymph nodes. I am uncertain Barry has lymph nodes on the right side of his neck anymore. Even if he has one or two nodes, having permanently swollen nodes is not a good sign. But it’s not like we would treat anyhow. I told Barry because I got tired of wondering if he noticed and of carrying the burden of this alone.
I may be becoming the angry, bitter type of person Rohr warns about. Being conscious of my unmet needs (from the sheer grief I feel regarding my life) doesn’t magically fix things. The downside of awareness is that it is not necessarily empowering to address the issues. The upside of awareness is that I no longer waste time and energy on people, relationships, and organizations that make promises they have zero ability to keep. To not waste time is always a good thing.
“A circle of trust may lack size, scope, and continuity as compared to a traditional community. But it makes up for what it lacks by being intentional about its life—about why we are together, about where we want to go, and about how we must relate to each other if we are to reach our destination….[I]n a circle of trust, I often hear participants say, ‘What goes on here is what I had hoped my religious community would be like.’” A Hidden Wholeness by Parker J. Palmer, pages 74-75
This past week, I mentioned to someone that, in my early twenties, I probably would have done drugs had I ever found any that actually made me feel better. Someone present said, “I was into spirituality back then.” She always has to one-up me, not very flattering. But she had a point and what she did (pursue spirituality), I basically attempted to do through religion.
I saw my brothers do drugs and alcohol and didn’t want to deal with the legal and physical consequences they were seeing. I craved security and predictability. I “found Jesus.” I now see that my religious experiences were invariably about my emotional needs. It was entirely narcissistic, but subconsciously so. I had needs my family did not meet (who doesn’t?) and church fulfilled those needs for years.
Today I am pushing 50 and value authenticity and honesty more than legality and even physical health. My brothers were idiots. No question. But they were honest idiots. Their legal issues and physical problems were come by honestly. Today, I would rather be a horrible, evil, and honest person than be the nice person I tried to be so long ago. To be thrown in jail for expressing my authenticity would be far more real than the life I have been living.
What hurts me today is the time I wasted trying to be “good” and survive emotionally. My life is more than half over (I really don’t want to live to be 96) and my true self, if it exists, has never seen the light of day.
What consciousness and intentionality do is to compress and make infinitely more efficient the learning process. All the niceties are history. All that’s left is what has to happen to meet people’s needs. When the hierarchical stupidity and bureaucratic nonsense is removed from the equation, humans can genuinely get their needs met! What a concept!
I’ve seen this concept at work in other areas of my life, too. Just ten minutes of deliberate, conscious, intentional action trumps a decade of thinking about maybe doing something at a later date.
The challenge is to make those unmet needs conscious, which I will address in probably my next post.