Everybody Needs A Break!

Said my mother, to my brother, when he was talking about being so busy as the worship leader for his church. I don’t begrudge my brother one bit, he does work hard, but I damn near choked on my own saliva when I heard her say that, as I washed dishes in the background.

I haven’t had a break in 7 years. I mean that quite literally. I haven’t had a day off, I haven’t had a day of rest, I have been switched on, taking care of her 24/7 for 7 straight years.

“But John,” you might ponder, “didn’t you go see a Star Trek movie here and there?” and I reply to you that I sure did, but that’s not a break in the sense of getting time off to regenerate and rejuvenate one’s mind and body. That’s the equivalent of getting 5 minutes to grab a snack or a cup of coffee before getting back to your 24 hour shift. In some technical sense it’s a break, but in reality it doesn’t even scratch the surface, and I deal in reality.

Hell, even when I went to see the Star Trek films, my phone stayed on (vibrate) in case I needed to be called back home for any reason. It’s like being a doctor on call, but perpetually, and without time off over the course of 7 years. My body, nor my mind, gets to rest. The other night, I had to wake up 7 times, during the night, to take care of something she needed.

So to hear her say “everybody needs a break! No one can work like that for weeks without getting burned out” to my brother, as I washed dishes, did the laundry, changed her bandages, ordered new medical supplies, cooked dinner, dusted the furniture, scrubbed the toilet, readjusted her position in her bed, and filled her water glass, made me want to choke.

She interrupted my dinner twice this evening. I haven’t had an uninterrupted meal in many years. I don’t listen to music very often, because I can’t wear headphones in case she needs me. When I try to read, I have to keep a bookmark handy because I *know* I will be called upon before I finish a single chapter. It has been this way for 7 years, and before anyone asks, before then I was doing the same thing, but it didn’t require all of my time.

When mom was first disabled in the mid 1990s, I was still in school. I would come home from school, and take care of what she needed. My time was 40% school, 10% personal time, 50% caregiving. In the early 2000s, she started to get better, and could walk again, to some degree, and so I was working 40% of the time, with 30% devoted to caregiving, and 30% devoted to personal time. That would be the highest it would get.

In the mid-to-late 2000s, she started to decline in health somewhat, and I had started a new job which took a lot of my time, so it became 50% work, 45% caregiving, and 5% personal time. It was after her kidney surgery that things turned as southward as they did, and my caregiving went full time. Currently, it’s 100% caregiving, no job, no personal time.

To give you yet another example, in the time it has taken me to write these 556 words (as of *this* word), I have been called upon 11 times. I don’t write my novels anymore, I don’t write songs anymore, I don’t write poems as much anymore (the brevity of poetry works in my favor at times). Do you know what this does to a person’s brain when they don’t get enough time to eat, sleep, to daydream, to rest their mind? My mind is like a sieve, nothing stays in it, it just leaks out. I’m to the point now where you can tell me your name three or four times, and I’ll still have forgotten it by the end of the introductions.

I don’t know, it’s just the statements she made bother me so much. She is right, in that one must take a break every so often, because otherwise one will get burned out, but she said it with me standing 10 feet away. It’s almost like I wasn’t there, or didn’t matter. Now, I’m not saying my mom doesn’t think I matter, but it does show how much she takes me for granted. She tells me she’s sorry, and she tells me it’s not her fault, and it’s really not her fault, I know that, I mean who blames the person for the disease (if you’re not GOP, anyway)?

The problem is that it doesn’t fix anything. If you shoot someone in the leg, saying sorry doesn’t remove the bullet and heal the physical wound. There is a long path of devastation and destruction behind me, and my future looks like what remains of the Roman coliseum, as it crumbles before me.

I know she has to know this, or maybe she doesn’t. I know the stroke caused some minor affectations, and I think that may have been one of them. Who knows? Regardless, I need more than a break. A break would be inadequate at this point, but that doesn’t mean I don’t deserve one, too.

Sorry Sorry Sorry

I can be a bit… overwhelming for some people. I’m an introvert, until it comes to someone I love or admire. There are friends of mine whom I simply adore (I’m tearing up thinking about them right now), and if I ever get the chance to meet them, I will want to kiss them, squeeze them, and be around them constantly. That might make me sound a bit overzealous and quite a bit clingy, but there are two things you may not know about me:

  1. I have serious body image issues, low-self esteem, and depression. I consider myself somewhere just below pond scum, and a notch above people who crunch loudly, and with an open mouth, in theaters.
  2.  I am an extraordinarily lonely man. Due to the circumstances of my situation, I do not get to interact regularly with more than a handful of people. Three of them are physical therapists for my mother, and the other two are my parents themselves.

(Also, right now, anyone who has followed me for more than 3 posts is raising their eyebrow at the notion that they may not know this)

This also applies when I’m on the internet. Sometimes I think I annoy the hell out of my friends, because I want to join in the conversation. It’s not that I don’t bring anything to the table, it’s that I always bring something to the table, and it has to get annoying when a friend is talking about something, and I chime in with a comment that is empathetic. I’m not trying to take their spotlight, I promise, but I know it has to feel that way sometimes. I just can’t help replying that I either know how they feel, or I empathize with how they feel, or I want to talk to them about how to make them feel better, it’s automatic, and I can’t control it very well.

I just want to help, and I think I can often be a hindrance instead. So I post these comments, I don’t see a reply hours later, and I think to myself, “great, stupid, you’ve gone and made them upset with your need to just blurt things out,” and it makes me want to punish myself. I hate that feeling, because I don’t want to lose these people. I love them, and I don’t want the people I love to stop liking me. That has to sound really weird to some people. I mean, a friend isn’t just going to drop you because you annoy them sometimes, right?

Maybe, but you have to understand that I consider myself to be just awful. I think of myself as the person everyone generally tolerates, but gets annoyed with all of the time. It’s like being the plucky comic relief, but without the comedy. I don’t want to be a nuisance, I don’t. I hate my insecurities, I hate how I see myself, but this is who I am, and no matter how hard I work to change, my mind is stronger and more stubborn than it appears.

Just today, I saw a friend post about being a happy person, but also being depressed, and how the feelings fight one another. I wanted to chime in that I knew how they felt, because I do. Every day I get a glimmer of happiness, only for it to be stolen away and shoved deep in the ground to suffocate by my depression. Yet before I could start typing, I thought to myself “do they really need to hear you talk yet again about how you feel?” and I couldn’t bring myself to type it out. Honestly? He wouldn’t have minded, at least I don’t think he would have, but I just don’t want to be a burden. I don’t want to be the guy who is always sad, who is always depressed, who always has some tale of woe, because I’m afraid my friends will think it’s all I care about and it isn’t.

My gods, I love them so much. I don’t think they really know (and here I tear up again). They are the lifelines to a drowning man. My dear friends, you’ve no idea how many times I’ve planned my own exit from this world, only to look up and see that precious card you sent me, or that little trinket you gave me, or any other mementos that remind me of the sweetness and love that sits right outside my field of vision, and beyond my immediate senses, but I know you’re there, and my heart rallies itself to stave off death for another day.

I love you so much, and I’m so sorry if I am a burden to you. I am sorry if I annoy you sometimes. I don’t want to be that kind of person. I want you to come to me if you ever have problems. Your problems are never too small, or unimportant. You are my friends, and your happiness is my happiness. Let me say it again: I love you, and your problems are my problems, don’t ever hesitate to come to me if you need me. There are people who need me and use me beyond the point of exhaustion, but you my friends, are not among them.

I love you. ♥

I’m Sorry, Boy George

I am sorry. I do not want to hurt you.

That seems an odd opening statement to make, you think? Stick with me and I’ll explain, it’s all very simple.

See, way back in my younger days before I really started listening to the LGBTQIA+ community (and my own heart), I would make light of real and serious issues within the community, or anything perceived as being a part of that community.

I used to make the effeminate jokes, do the lisp, wave the limp wrist, and I did it because I was an ignorant asshole who thought he was so in the right, and justified by his faith to behave in such a way towards those who were different, that it never occurred to me that my attitude was the same type of attitude that lead to innocent people being harmed. It wasn’t a laughter of cruelty, it was a laugh of stupidity, of ignorance.

I did so because I was a devout fundamentalist Christian who had been taught that gay people chose their “lifestyle,” and that they willingly snubbed God in favor of perversion. Now, at the time, I didn’t know that Boy George was gay, not officially, but I did know he was effeminate, and he chose to wear makeup, so in my fundamentalist mindset, he was clearly gay enough to warrant being put in the same category.

So here you are, wondering why I posted the first sentence in this entry. Well, that, or you already figured it out. Regardless, it’s because of the song “Do You Really Want To Hurt Me?”, a song he sang with Culture Club back in the 1980s.

I say this, because when he would sing the noted lyric, either myself, or my friends with me, would laugh and say “yes!” because you know, he’s weird and wears makeup, he’s gay, hahaha, you know? Isn’t it funny? Isn’t it a laugh?

The answer then was yes, but the answer now is obviously no.

I have learned a great deal in the intervening 20 years. I have learned the struggle the LGBTQIA+ community has been a part of, primarily because I have joined in it. I have learned of the injustices transgender people have faced long before I was born, and I’ve seen those same laughing faces as I work to defend the lives of my friends. Some are cruel, of course, but most are just ignorant.

To them it’s a silly little thing, a group of people so confused they don’t know what gender they are. Or maybe they’re faking it. Perhaps they’re just perverts trying to look at children in the bathrooms, because that’s what it always comes down to with that mindset.

So I’m sorry, Boy George, for ever joking about such things. I’m sorry to all of my fellow members of the LGBTQIA+ community for being stupid and insensitive enough to mock the real life issues you were facing. That I was a teenager is no excuse. That I was a fundamentalist Christian is no excuse. That it was the 1990s was no excuse. Neither age, religious affiliation, or year is any excuse when mocking and belittling the lives of others.

I’m sorry, Boy George, for saying “yes” when you sang “do you really want to hurt me?”, and for making light of your work and your life, because in all honesty the answer is no, I do not want to hurt you. I don’t want you to ever be hurt by anyone for being who you are, and for wanting to express yourself in a way that is different from the mainstream. It heartens me that the mainstream is changing, and that what was once viewed as outside the norm has now become an everyday fact of life, at least here and in most civilized nations.

Now we have to fight to prevent people of the LGBTQIA+ community from being harmed in places like Russia, where gay men are now being imprisoned. That needs to stop. Those of you who are laughing need to stop, and you need to look at what is happening to innocent people. Now is the time to work together, to realize that every human being is deserving of basic respect and compassion, regardless of their gender, sex, orientation, color, or status. We can be better, and we can do better. Let’s do better.

A Beautiful Sunday And Nowhere To Go

Days like today drive me crazy. It was beautiful outside. The sun was shining, the air was warm, and people were out and about. Of course, I saw this from inside the house, and then later when I drove to a restaurant to pick up dinner. The drive was marginally better, because I could open up the sunroof on my car, and turn up Jefferson Starship while I drove down the street. For a few seconds, at least, I felt like I was my own person, but alas it doesn’t last. Once I picked up dinner, I was homeward bound, and since the restaurant was only a few blocks away, there wasn’t much time to savor.

Spring is here, and even with the cold days that mix in with the warmer days, my body is aware that Spring is here. There is this unsettling itchiness that I cannot but despise, and this unceasing frustration that I have to clamp down tight. Year after year I deal with these feelings, and year after year, my heart hardens just a little bit more. Eventually, these feelings will stop, and then I will do nothing but mourn what could have been, sliding into whatever lonely and ignominious death that waits me.

Right now, though, days like this drive me up the wall, and there’s nothing I can do about it. Feeling too much, or feeling nothing at all, which one am I supposed to choose? If I choose either one, I lose, if I choose both I lose, if I choose none, I lose, because a choice will establish itself one way or the other.

Don’t get me wrong, I’m an introvert, I’ve been an introvert all of my life, but loneliness will make an introvert extroverted, at least for a while, and those two merge into one unholy conflict. No wonder my doctor’s concerned about my sleep habits, and why I’m beginning to look like I’m strung out on something.

That being said, I live with people who make me want to get drunk every day, and yet somehow I manage to stay sober. That’s right kids, I’m doing all of this without any kind of assistance to take the edge off. It is pure hell.

It’s a shame, though, about beautiful days like this one has been, because for a moment, it almost seems like the world isn’t a giant shit show, crushing your heart and soul underfoot with tons and tons of excrement.

Ugh, that’s not a pretty image. I’ll close with something a bit more visually appealing, and more soothing:

“A Light exists in Spring
Not present on the Year
At any other period —
When March is scarcely here

A Color stands abroad
On Solitary Fields
That Science cannot overtake
But Human Nature feels.

It waits upon the Lawn,
It shows the furthest Tree
Upon the furthest Slope you know
It almost speaks to you.

Then as Horizons step
Or Noons report away
Without the Formula of sound
It passes and we stay —

A quality of loss
Affecting our Content
As Trade had suddenly encroached
Upon a Sacrament.”

“A Light Exists in Spring” by Emily Dickinson

Until next time,

John

Technically, It’s True

Did you know that if you die, you no longer have to worry about anything anymore? On top of that, no one can come after you for anything, either. No bills, no family trouble, no debt collectors, no body aches or pains, you’re free from all of it.

Of course, conversely, you’re also dead. Currently, I’m trying to figure out a way to have the best of both worlds, and so far all I can come up with is ascending to a form of pure energy, like the Organians, who told both Kirk, Kor, the Federation, and the Klingons to fuck off with that shit or else. That would be a nice power to have: the ability to tell people to fuck off, and then to enforce it where they can’t do anything about it but obey.

I would abuse that power so quickly.

Still, back to the dead solves problems except the being dead part, it’s almost absurdly simple. We human beings get so wrapped up and involved in what we perceive as important, that we bind ourselves to those problems. It’s why when someone tells me the best way to relieve stress is to get away from the problem, I laugh, and not a pleasant laugh, but a crass, hopeless, faithless, cynical cough cackle.

It’s the kind of laugh that comes right from your diaphragm, and your stomach even hurts afterwards because of the force you put behind it. I mean, you pushed so much sarcasm into that laugh, that you physically injured yourself just to get the point across.

It never works, though. They never understand. We can’t just step away from the source of our stress, because part of the stress is due to the fact that we can’t step away from it.

I swear to fuck, if I see one more kale eating, yoga bending, chakra balancing, pasty tan faced (you know what I’m talking about), upper middle class suburban soccer mom who wears a shirt that says “Everything Happens for a Reason,” and tells me that if I’d just let go of my stress I’d feel great, I’m going to cocaughle* in their faces until the onions I had for lunch make their presence known to the nostrils of mine enemies.

I mean, technically it’s true that getting away from your source of stress will reduce stress, but that kind of advice is like saying “if you’d just get more money, you wouldn’t need to worry about not having enough money.” Well, no fucking shit. Next you’ll tell me that fire’s hot, water’s wet, and Natalie Portman is just the cutest goddamned little goddess on the face of this planet. Of course it’s true, all of it! That’s the kind of “advice” that doesn’t help.

None of my friends tell me these things, I think because they know by now that pithy sayings don’t do well with me, and also, because most of them are the same way. They would most definitely cocaughle in the face of some jackass mimicking a bumper sticker they saw in a Hot Topic. If there is anything valuable I have gained over the years of doing all of this, it’s how quickly I’ve learned my own mind, and that I no longer accept bullshit as an axiom, or as a replacement for real life experience.

There’s a special place in hell for people who tell me “good things come to those who wait.” Oh, what a delightfully face melting place in hell awaits them, because holy shit, if you want to get on my bad side really fast, you wait until I lament about being lonely, and then drop that zinger.

I don’t like empty platitudes, or contrived wisdom. Neither does me any good, does no one any good. I want the straightforward truth, and nothing less. I always offer the same to my friends. It’s wrapped in politeness, compassion, and kindness, because I love my friends, but it is always the direct truth. Anything less is just dicking people around, and I don’t have time for that, unless they’re talking about the real thing, and in that case I can most definitely make time. There’s always time for a good dicking.

—–

*Cocaughle (ko*kaff*ul): Cough and cackle. I decided I didn’t want to have to keep typing two words. Of course, if I would have just typed the two words, I wouldn’t have needed to type an entire explanation at the bottom of this entry so you would understand I created a portmanteau in order to save time. Goddammit, I’m bad at this sometimes.

A Bit Concerned

I’ve been just a bit concerned lately. Just this evening, I experienced my 65th anxiety attack since the beginning of the year. They’ve ranged from disconcerting to brain numbingly chaotic, though mostly the former.

I shake all of the time now. There isn’t one day where I’m not trembling in some way. This past week, my arms and legs have been getting numb, for a few minutes at a time, and I don’t know why. I have been getting pains in the side of my head, sometimes growing into full blown headaches. I’ve taken ten Tylenol, over the past week, to deal with them. I don’t take ten Tylenol in a year.

I had to wait until my Medicaid kicked back in, and it finally did a few weeks ago, so I’m making an appointment to see my doctor. He’ll do some blood work, check a few things, and if he finds anything suspicious, will guide me where I need to go.

I won’t lie, I am concerned also because 36/37 was when mom was diagnosed with Sarcoidosis of the central nervous system. Now, that doesn’t mean I have it, or that I have anything at all neurologically wrong with me, but I would be lying if I said the thought hasn’t crossed my mind, and in vivid, terrifying detail.

It could just be stress. I haven’t been getting more than 4 or 5 hours of sleep at a time these past few weeks, and even then those sleep hours have been interrupted by mom needing something which, while I don’t fault her for that, has contributed to my shortness of temper, my inability to process or retain information a fraction of what I normally can. My body has become like a lead weight, and even with that lead weight, the anxiety attacks, the numbness, the continued issue with my left arm (it won’t hold more than about 30 lbs of weight before giving out), and the increasing “noise” in my own mind, I keep plugging away at 24/7 care.

Some people can get away for a while, and let the stress be released through music, or going to see a movie, maybe having a nice meal with a friend. I have none of those options. I am constantly in service. I can be called upon when eating, sleeping, going to the bathroom, I can’t really read because I have to keep an eye out if she needs anything. I can’t listen to music because I have to keep my ears open should she call for me. Watching a TV program, or a movie? Nope, that can be and is often interrupted. I don’t watch live shows, because I miss most of any live show I watch. During a two hour movie, I will be called upon anywhere from 3 to 20 times, or more. I haven’t meditated in ages. It’s like being an on call physician, but with no time off ever.

In past checkups, my doctor was concerned about my blood sugar, blood pressure, and such, but when I took dad in for his checkup (he needs me to help him explain things), my doctor spent just as much time concerned about my well-being. When mom went in a few weeks later (this past March), he checked her out, and then kept asking me questions about my sleeping habits, and the lack thereof.

Both times he expressed great concern, and while I am sure it is the concern a doctor gives his patient of 33 years (I started seeing him when I was 4), I can’t help but feel a slight twinge of anxiety deep in the marrow. I sincerely hope, if it’s going to be anything, that it’s “just” exhaustion, though even if it is, there’s no way in hell I can do anything about that. I’ve had people tell me I need a break, and I know that. I haven’t had a single day off in 7 years. It’s that with how this feels, with how deep it goes, there’s no way one or two days will be enough to help me get my wits back together, or deal with whatever is going on with my body.

So I am concerned. I’m sure you all know me well enough by now that while I try to work through problems rationally, there’s always this undercurrent of fear that immediately latches on to the worst possible scenario. I don’t want this to be anything, and maybe it won’t be, but until I can get in to see him, get tested, and get the results, those thoughts will still be hanging around, plaguing me with more anxiety that I don’t need.