Showing posts with label chronic fatigue syndrome. Show all posts
Showing posts with label chronic fatigue syndrome. Show all posts

Friday, November 11, 2022

Island


Today’s post is a writing challenge. This is how it works: participating bloggers picked 4 – 6 words or short phrases for someone else to craft into a post. All words must be used at least once and all the posts will be unique as each writer has received their own set of words. That’s the challenge, here’s a fun twist; no one who’s participating knows who got their words and in what direction the writer will take them. Until now.

Mt words are:

ordinary ~ help ~ funny ~ island ~ language

It was submitted by: https://www.bakinginatornado.com

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I don't have the language required to ask for help I guess.

Ok I think maybe trauma erased my ability to use the right words. The thought of admitting "I can't" isn't something easy to come by despite being aware I need to work on it which often leaves me on an island alone with my own resentment.

It probably also doesn't help that the majority of people I've been vulnerable enough with to ask for help have let me down completely or held it over my head. It doesn't create a lot of faith that anyone else I ask will be the one person who doesn't make me feel like shit about it.

All of that makes having a chronic illness pretty dang hard. Every time I think I have it figured out, something will happen and I have to find a new normal. Like how having had covid twice despite not leaving home and having the vaccines caused such intense insomnia I haven't slept for more than an hour or two at a time in almost 2 years. I can't even begin to explain the hurdles I now have to go through just to be able to write a couple sentences a day or maintain letters. Or just make a ridiculously funny wrestling meme. I can't even enjoy TV shows the same anymore. I can't see them. I can't read the subtitles anymore. I can't even process them most of the time. I just slip back into familiar ones that I know the plots to by heart or things that won't require a lot of brain power. The only thing I can read right now are things I've already read...and reading about new worlds and new people have always been my one method of escape. I have a whole fucking tattoo about it. I just can't anymore. At least not now...

But even with this new problem the world doesn't stop nor does my house. And my house is anything but ordinary. So by 9 a.m. I've gotten up, made the bed, medicated at least 4 animals, swept, mopped, argued with my kid about getting up to walk the dogs or about brushing his teeth or taking his meds (which I still make up for him in his pill minder) or whatever else the teenage angst is about that day, often shampooed carpet at least in spots that need it, washed dishes my kid left in the sink, cleaned up messes the cats made from at least one type of bodily function, wiped down counters and cabinets, made coffee for at least 2 people, made breakfast for everyone, cleaned up after breakfast, entered a bunch of online contests to try to win extra money because we're fucking poor, dusted, vacuumed, folded some laundry if I hung it out the day before... Sometimes there's extra. Sometimes I have help with one or two of these things. But this is just the first 2 hours of my day and it never ends. Every time I think I'm caught up something else needs to be done. I'm on my feet at home for at least 8 hours a day. Most days at least 6 hours at a time...with joint point from my cfs and plantar fasciitis making it impossible to walk. By 8 most nights, my pain level is so high I can't talk. I can't even cry. I'm too tired to fucking cry.

Every time I ask someone to do something and get told "I will" just for it to still not be done 2 hours later that island of resentment grows bigger and the next time I really need help, I won't ask. Why would I?

I keep thinking I'll learn to master my broken energy battery and only do the things that need it, but when your mom has broken into your house and tried to physically assault you over you insisting you have actually do keep things clean all because an argument started when you offered to take her on a spa trip for Christmas, could anything ever be clean enough? Probably not. Not when every time you've ever been in her house her husband still treats you like a 16 year old kid who is apparently utterly incapable and disgusting and conveniently forgetting you're 41 now and even when you were 16 with a semi dirty room you were also dealing with the aftermath of abuse and rape and were constantly threatened and bullied for being gay and weird without any support from the people who should have noticed you were drowning in a bog of torment. I don't exist as a real person to the people who were supposed to love me, and there's not any amount of time that erases the instinct to seek out worth with a clean countertop or scrubbed walls or being 3 weeks ahead on your weekly list of extra chores and thinking "I haven't done enough" and doing it all again anyway.

There's always a voice in my head. There's always trauma. There's always resentment.

And so here I am, dying for help, dying for a break... And what I get is more work.

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Links to the other “Use Your Words” posts:

Baking In A Tornado https://www.bakinginatornado.com/

On the Border https://dlt-lifeontheranch.blogspot.com/

The Diary of an Alzheimer’s Caregiver https://thediaryofanalzheimerscaregiver.com/blog

Part-time Working Hockey Mom https://thethreegerbers.blogspot.ch/

Friday, March 4, 2022

Day After Day


Welcome to a Secret Subject Swap. This month 4 brave bloggers picked a secret subject for someone else and were assigned a secret subject to interpret in their own style. Today we are all simultaneously divulging our topics and submitting our posts.

My “Secret Subject” is:

Do you have a sick ritual? Something you wear when you’re sick, a place you prefer to be and food or drink that makes you feel better?

It was submitted by: https://www.bakinginatornado.com 


Friday, September 6, 2019

Sweet Little Lies


Welcome to a Secret Subject Swap. This week 7 brave bloggers picked a secret subject for someone else and were assigned a secret subject to interpret in their own style. Today we are all simultaneously divulging our topics and submitting our posts.


My “Secret Subject” is:

What is a lie that you’ve told that you feel you were right to tell and would do it again if the same circumstance arose?

It was submitted by: https://Bakinginatornado.com

___________________________

I tell lies every single day of my life.

"I'm good n you?"

"No, no I'm fine. What do you need?"

"The pain's not so bad today."

"Ehhhh, I'm doing okay."

"Sure tell me what helped you feel better. Might as well try everything!"

"We should hang out soon."

I haven't been good in years. I'm hardly ever fine. The pain is always bad, but some days are worse than others. Not doing okay. I really don't want to hear what worked for anyone unless they, too, have cfs or similar because goddamn I have tried so much already. Nothing cures what I have. And I don't get to hang out with anyone. I barely get to leave my house. I'm stir crazy with no energy for going anywhere. I can barely manage my household.

People don't want to hear that though. The questions are pleasantries not serious inquiries into how I really feel, and if I treat them as such and am honest about how bad my day is, the fastest change of subject on the face of the planet happens if not outright silence. No one likes a whiner, right? People complain about complainers and tune out the "negativity." Fuck honesty. Give people what they really want--a lie wrapped in a pretty package that makes everything easier to digest so they don't have to feel bad about trying to flirt or asking me to do something for them because, you know, I'm not working and stuck at home so i must have all the free time in the fucking world.

Yes. Yes, I *am* bitter.

I don't want to have to lie, but I much prefer the lying to the look in people's eyes when I say how I really am or the awkwardness in messages. Why the fuck does anyone ask if they don't really want to know?

I TALK OPENLY AND LOUDLY ABOUT MY ILLNESS ALL THE TIME. And yet people still ask expecting me to do the same as everyone else--be a toxic painting of positivity. Don't be real or genuine. Give them a hollow chocolate bunny--a lie wrapped in pretty painted foil full of nothing but air that crumbles and falls apart as soon as anyone examines it further.

So I lie.

What else can you do when the truth pushes almost everyone away because it isn't rewarding or gratifying and it becomes repetitive. How fucking rewarding and repetitive do you think it is for me when I live it 24/7? Lying doesn't feel good. It's isolating, alienating. But what's even more isolating and alienating is to have people stop asking altogether because they don't care to hear the answer.

I lie, too, to protect my own ego. I put off getting a cane for so long because I didn't want to have to need one. I hate seeing myself with it. I hate having to rest after I shower. I hate admitting ever that I can't do all the things I want to do, so sometimes I do them anyway or don't ask for help when I should. It's easier on me not to see that flash of irritation that says I've asked for yet another thing, and I've become a chore myself, a burden. I die a little every time I see it.

And I lie to protect the people I care about. Who wants their kid to see them crying in pain? I fake a smile way more often than I don't. I hide grimaces and push through schoolwork and chores and cooking dinner no matter how hard it is or how bad I feel. I laugh and make jokes and listen to every news update on every game and help him with his writing and his art. It's not his fault I'm sick, and in some small way, these lies give him a whisper of a normal childhood. I already don't get to take vacations to Disney World or see every new Marvel movie in theaters. We don't get out for hikes and pinterest inspired outdoor projects. No dinners out really. What can I eat? My physical life is fucking absurd, and I just want him to have some semblance of normal memories of his mom.

I lie every day, and I'll keep lying again and again and again. Every single one is a little cushion against the hurt.

__________________

Baking In A Tornado                    https://www.BakingInATornado.com

Wandering Web Designer              https://wanderingwebdesigner.com/blog

Spatulas on Parade                     https://spatulasonparade.blogspot.com

The Bergham Chronicles               https://berghamchronicles.blogspot.com/ 

Our Prime Years                           https://ourprimeyears.com/blog/  

Part-time Working Hockey Mom       https://thethreegerbers.blogspot.ch/ 

Friday, July 12, 2019

Alone

Today’s post is a writing challenge. This is how it works: participating bloggers picked 4 – 6 words or short phrases for someone else to craft into a post. All words must be used at least once and all the posts will be unique as each writer has received their own set of words. That’s the challenge, here’s a fun twist; no one who’s participating knows who got their words and in what direction the writer will take them. Until now.

My words are: pointy, circle, board game, projector, jeans

They were submitted by: https://www.bookwormkitchen.com/

Obviously I was in my feels. 
______________________________________

Lilith sat arm’s length away from the fairy circle in her backyard waiting on the witching hour. She wasn’t sure how close was too close to it or how far was too far. She didn’t know anything really. This was all new to her; it wasn't a lifestyle or hobby or belief system. She wanted…she didn’t know what she wanted either, though, if she were honest with herself. It seemed silly now that she was out in the dew-wet grass wondering if she was going to get bitten by ants or worse and surrounded by candles, crudely drawn runes on index cards, and the grimoire.

The grimoire was what started this whole thing actually. If she had’t seen the damn thing in Another Man’s Treasure, the thrift shop downtown, she wouldn’t have gotten any ideas about summoning a demon. It had been sitting there amongst the discarded board games, ancient screen projectors, kids' books, and old VHS tapes. The “entertainment” section it had been labeled. Entertainment. What a laugh.

She’d thought maybe it was some kind of leather journal when she first glanced at it, but, for whatever it’s worth now, it called to her. There’s no denying it. And the memory of the way she couldn’t resist reaching out for it and how she lost time standing there looking at it until an employee came over to check on her gave her chills. It wasn’t *just* a book by any means even if she couldn’t read a fucking word inside it at first. She thought, in the beginning, it must have been written in some other language, but extensive google searches were never fruitful. The pages were filled with pointy lettering of some kind that looked maybe a little like English, possibly runes as well, though who knew? (She’d gotten the runes she used for her circle spell from Reddit of all places.) And there were pictures--illustrations, she hoped, that sort of told you what would happen.

The page she kept staring at in Another Man’s Treasure and had continued being drawn to at home had what looked like a telephone, a circle, and a devil face inside it. So, yeah, she knew she wasn’t dealing with some kind of ancient language that couldn’t be decoded or anything, and after having found nothing on google, went with the theory that it was someone’s shitty chickenscratch handwriting meant to look all witchy, and she was just going to have to do the best she could. She figured if she came out of this alive, she was going to make some kind of very strongly worded PSA about writing plainly and neatly instead of being an edgy goth princess if you were just going to end up donating your grimoire to goddamn charity and secondhand shops. Really.

So there she was. Jeans soaked with dew, candles burning down, and no idea what she was doing but tired, so tired, and desperate. Her alarm on her cell phone let her know it was time, midnight, with her Letterkenny “Figure It Out” ringtone. She guessed she *would* figure it out.

Once the alarm was over, she stood up with the grimoire in hand and started reciting the words as well as she could hoping for the best. She almost considered saying a little prayer first, but A) she wasn’t religious and B) it was kind of fucked up to pray to god to save you from shit you were knowingly doing wrong. Right? Anyway, she read the text: I summon thee foul beast Agnoroth from ye black depths to do my bidding during this night’s witching hour. From the bound circle unless agreed otherwise, ye shall grant my requests by 3 and return home. No harm shall come to either of us this night, and ye shall not visit again unless summoned.

It sounded good and like all her bases were covered, but her many free kindle reads of unknown urban fantasies suggested demons could be quite tricky. She supposed even the most solid sounding agreements came with loopholes, but what was there to lose? Okay, well, yeah, her life, but she hadn’t really been too attached to that in a few years now, so no harm no foul? Maybe?

She was lost in her own head--a conversation between she and herself as always--when she heard a faint rumbling that grew into a thundering growl, vibrating the mushrooms but stopping short of making any of them topple. “WHO DARES DISTURB MY QUIET NIGHT AT HOME?!”

She cringed even while she could relate as a form began to materialize within the circle. She wasn’t sure if she should answer? Like what would she even say? “My name is Lilith. Hi?” like some demon is going to know who the fuck she is? Haha. Yeah okay. What kind of absurd question would it be if it weren’t rhetorical?

Her eyes widened as she found herself staring up at a behemoth of a creature covered in silky looking black hair, muscled like a Mr. Universe contestant…actually, he looked quite like a werewolf but with his hands on his hips wearing a lavender-colored gingham print half-apron with apple appliqués on the very generous pockets. She was considerably jealous of it actually. It was definitely something she would pick out for herself and tell absolutely no one about.

It took 0.2 seconds for him to realize that sounding like something straight from her worst nightmares and wearing that apron were, in fact, mutually exclusive. He looked down at himself when he saw her staring, mouth agape, looked back up and shrugged before making it disappear with a snap of his fingers, fingers whose pads were obviously not covered in fur. Or hair. Whatever.

In a very human-sounding voice, he asked again, “who dares disturb my, uh, torturing of souls in this witching hour??”

“oh. I thought that was kind of a rhetorical question?”

“Well, don’t you think I need to know whose bidding am I supposed to do?”

“uh…I guess? My name is Lilith.”

“Familiar and family name?” he asked as he arched a silvery tuft of hair that resembled both a caterpillar and the eyebrow of an extra senior in the nursing home scene of any show or movie. Fuzzy. Way too long. Unkempt. Pretty fucking adorable.

She thought on this for a second then shook her head. “Pretty sure I read in a book that if you have my full name and exactly how it’s said, you can summon me or, I don’t know, do something not so nice, so I’m just going to stick with ‘Lilith’ for now.”

“Is everything you read in books true then?”

“To be faiiiir, I definitely would have said no yesterday when I didn’t believe demons and witchcraft were real and only read about them in books, but here I am talking to you, so I’m not taking any chances.”

“Outstanding. Pitter patter.”

She furrowed her eyebrows and kind of cocked her head to the side the way dogs always did hearing something new in youtube videos. “Did you….What the fuck is going on? What kind of demon gets a Letterkenny reference and answers back with one?!”

“The super soft kind that wears a purple gingham and apple print apron?” he offered with a laugh.

This was weirder than anything she could have dreamed of or read in a book. She supposed this gave new meaning to that old phrase “the truth is stranger than fiction.”

He really took a good look at her then. Fraggle Rock tshirt, wet jeans, Super Mario bros bedroom slippers… “you don’t look like the kind of person who I usually find standing before me when I’ve been summoned. What gives?”

“Well, you see, I found this grimoire at a secondhand shop…”

Before she could finish, he barked. That’s the best way to describe the sound that emanated from his lips. Jowls. Whatever. “What kind of fucking asshole donates their spellbook to a damned thrift store?”

She was absolutely vindicated in that moment and hollered. “RIGHT?!?!?! And look at this thing!”

She stepped closer to the circle and held up the book for him to get a better look. He snapped a pair of large, round Harry Potter style spectacles into existence on his face and leaned as close as he could before bumping against the invisible shield that held him in. “Now that writing looks exactly how I would imagine a person summoning me should be dressed. Like King of the Skids, amirite?” Both of them died laughing simultaneously. She lost her breath and tried to get it under control, but every time she’d slow down, he’d start again, and it just kept going until both of them were sitting on the ground, panting and streaming tears.

“Satan, I needed that,” he managed to get out between breaths. She nodded agreement and both of them sat contentedly for a moment trying to gather their wits. She couldn’t take any chances with this demon even if he seemed pretty rad, and she imagined he was trying to get control of himself to look for any advantage to hold over her. She didn’t dare pause for long, though, or the reality of their situation was really going to fuck with her head.

“ok, so, listen…” she started, but she didn’t know how to continue.

“Go on. When you’re ready. But do keep in mind, I leave automatically once the witching hour is done.”

She checked her phone. 12: 17. She needed to get moving.

“Alright. I don’t know how this works, so if this isn’t possible, don’t laugh.”

He started to speak, but she interrupted. “WAIT!!! Can I make my first request that you be entirely honest for the rest of this hour regarding any risk, problem, danger, fact, question, detail, and terms of any agreement that we discuss tonight.”

“Smart move, Lilith. Yes, you can, and consider your first request granted.”

“Can demons actually possess humans? And what is the risk involved?”

He nodded thoughtfully, “yes, we can. The risk is more or less determined by the intent of the possession. If I possess you so that you may kill an enemy in the most Hellish ways possible, for example, your body still leaves physical identifiers as usual. You can still be imprisoned for your crime. I would help the method and nothing more, you see?”

She ran a hand through her hair and paced a little. “So, essentially, you need the details before you can assess the risk, yeah?”

“Correct.”

“If I make my second request that you help construct my possession contract to limit my harm and yours and without undo toll on my soul, will it truly work?”

“On the surface, the answer is yes. But again, the ask determines the accuracy of my answer. There may not be a solution we can agree on as to what is acceptable harm to either of us. Some harm may have to occur. But in the event that is your second request, yes, I do have to honor my end of it to the best of my ability.”

“It is.”

“Thy will be done, then.” She noticed that he was taking all of this far more seriously than he had in the beginning, and she didn’t know if that was to her benefit or downfall.

“My ask is simple but not. See, I have a chronic illness. I don’t look sick from the outside. Everyone around me sees, for the most part, what they have always seen, but everything is different for me. The exhaustion, the mental issues, the pain, the mental anguish from no longer being the person I was…it’s a fucking nightmare.” She paused holding back tears, took a deep breath, and went on. “It’s bad enough to feel this way. I have no escape from it. My good days now are like my worst sick days before. But the worst thing is feeling so alone. No one gets how I feel, no one I know intimately at least. No one I can talk to face to face. It’s isolating. Alienating. Then there’s the recommendations. I KNOW what’s wrong with me, but since on the outside nothing LOOKS wrong with me, people tell me to get more sleep, to eat better, to exercise, to do yoga, essential oils, go vegan, get on depression medication…you get the picture. It makes me feel absolutely crazy and, on my bad days, like maybe it IS all in my head, you know? I just want—no, I NEED--for someone to get it. To look me in the face after feeling what I feel and how I feel and tell me it’s fucking horrible, and they wouldn’t wish this on their worst enemy.”

He looked incredulous. She didn’t know how else to describe it. How does a werewolf demon look incredulous? She didn’t know, but he was definitely looking it either way.

“I…” He started and stopped looking rather thoughtful really and started again. “People are so bad at getting that you have an illness that they have semi-convinced you that it’s not that serious, and instead of rightfully and righteously torturing them in the name of Satan, you want to be possessed by a literal demon so you can get some feedback. In a nutshell.”

The tears fell this time. There was no holding them back. “Yes.”

“That is seriously fucked up.”

Her mouth fell open in shock.

“No, no, no…wait. Not the ask. It’s fucked up that you have such people in your life. I’ve heard way more fucked up requests than that from being summoned. The last possession wanted me to help them fill some chick’s bathtub with acid because she wouldn’t sleep with him.”

Her mouth never really closed good before it was hanging open yet again. “what in the…. Did you do it?”

He smirked and raised one of those grandpa brows, “all I can say is he should have negotiated better, and no harm was wrought on the woman in question.”

“wicked!”

“I try.”

He paced around the circle for a moment in thought while she dried her face and tried to fix whatever makeup might remain. She checked her phone. 12:28. No time to waste. She was about to ask what he thought when he stopped suddenly and clasped his heads in front of him in a gesture that was both endearing and a little scary.

“I think I’ve got it. The ask is absolutely benign and only involving you, and as I am bound to do no harm to you this night, you have no risk at all. Okay, well, *that*, perhaps, is an understatement. Demon possession always comes with a little tarnish. Your soul isn’t corrupted entirely by it especially with our time being so limited, but it will definitely have a little smudge. And, it will certainly feel weird, but you have pure intentions, so the possession, by the nature of the ask, will not be painful. I’ve never done such a possession, but I hear it feels like added pressure, maybe like your whole body is bloated. Are we good and clear so far?”

“Yes, that’s fine for me.”

He continued, “as for me, I suspect if you are right about how you feel, this will not be what I might call a fun experience, but we are actually limited by time, so by the nature of the summoning itself, my harm is limited. We have approximately 30 minutes before I will be whisked back home. You want me to feel what you feel but also discuss it, correct?”

“Yes, exactly. That’s what I want.”

“So 15 minutes for possession and 15 minutes to discuss it. Are those terms we can agree on?”

“Do you have to go back into the circle when you come out or can we talk face to face for real?”

“That is up to you entirely. It is always recommended that you keep a demon bound to a circle, though.”

“But you cannot harm me?”

“Not with the summons and details we have arranged.”

“Then I ask for 15 minutes possession for you to feel what it’s like to be me and 15 minutes for us to discuss it with you out of the fairy circle.”

She felt immense pressure for a moment like she was being inflated, like Violet Beauregarde when she turned into a blueberry, but it faded into the background behind all her regular dull aches and shooting pains, the splitting migraine she had been fighting all week, the GI cramps, the nausea…she’d really picked one of her worst of the worst days to do this. On purpose. She could feel him still, an oily shadow in her brain instead of the whispy fog she fought through every day of her life. Heavier but navigable.

She sat in the grass watching the minutes pass, anxious. Her tachycardia was in full swing along with the dizziness that always accompanied it. She dissociated like she tended to do when she felt this bad only being pulled back when she felt the pressure mount again. She stood as it began to subside completely leaving her alone with the pain and everything that came with it while she watched him materialize again in front of her. They stayed face to face like that for a moment or few before he finally spoke up.

“how? How did you even manage to get me here? How are you even standing?”

Everything in his stance and his face was absolutely sincere, so when he pulled her in for a hug, she didn’t resist.

She spent the rest of her negotiated time in that embrace crying tears of relief.
____________________________________

Links to the other “Use Your Words” posts:

Baking In A Tornado https://www.bakinginatornado.com/2019/07/firetrucks-and-football-use-your-words.html

Wandering Web Designer https://wanderingwebdesigner.com/blog

Spatulas on Parade https://spatulasonparade.blogspot.com/2019/07/rideem-and-ropeem-uyw-july-2019.html

The Bergham Chronicles https://berghamchronicles.blogspot.com/

On the Border https://dlt-lifeontheranch.blogspot.com/2019/07/job-expedition.html

Bookworm in the Kitchen https://www.bookwormkitchen.com/

Part-time Working Hockey Mom https://thethreegerbers.blogspot.com/2019/07/use-your-words-burst-beer-cans-and.html

Friday, June 7, 2019

So Much to Rant About


Welcome to a Secret Subject Swap. This week 8 brave bloggers picked a secret subject for someone else and were assigned a secret subject to interpret in their own style. Today we are all simultaneously divulging our topics and submitting our posts.

My subject is: Tell us about your life at home. What is your family like? What do you do for fun?

It was submitted by: https://wanderingwebdesigner.com/blog

_________________________________________

I talk about personal stuff a bit on this blog, but usually that personal stuff involves the past or something I feel or am going through at the time. I don’t really talk about other people much. I try to leave my son off the blog as much as I can, and I have often avoided talking about my own family, the family I still see, to avoid drama if the blog gets read, but I need to vent. Things have been so much lately, and the time has finally come for me to release some anger and resentment, I think. I feel like this might get long, so I’m going to give you the tl;dr version. That’s “too long; didn’t read” for anyone that’s not fluent on internet shorthand.

--I have a chronic illness that makes me housebound most of the time or pay dearly for getting out.

--I also have way too many pets. Several have special needs including a diabetic dog that needs insulin every 8 hours and really limits what I can do away from home even on good days.

--I have an extremely dysfunctional family.

--My kid has hit puberty, and that has been one of the most difficult things I have ever faced in a lifetime full of difficult things. Haha. But no really…

And here we go with the rest of the story.

Around this time of the year 3 years ago, I had what I thought was a viral sinus infection, and I never really got better. For months, I ran a fever, had swollen glands, caught every bug I came in contact with, could barely move around… I felt like I was drunk with a virulent strain of flu all the time, and it’s only gotten worse since then.

I have what’s called Chronic Fatigue Syndrome here in the United States, but in other places, it’s often referred to as myalgic encephalomyelitis (ME). The symptoms are wide-ranging involving several different body systems. I have pretty severe gastroparesis and the symptoms that come with it which means I can no longer digest most proteins or vegetables/fruits. I can tolerate a few veggies from specific families and a few fruits, but they have to be cooked to the point they mostly lose their flavor. I’ve lived off rice, pasta, and potatoes for quite a while now. It’s a common issue for people with cfs/me. I have the joint and muscle aches that go with it to the point that even getting around my house is difficult sometimes. My energy is like a broken battery. At best I can expect to wake up at 50%, and that’s only if I have gotten a good bit of rest, but that rarely happens since insomnia is also an issue. Every single task I do during the day takes away from that battery, and if I overdo it, I pay for it for days or even weeks. My immune system doesn’t function the way it should and reacts to any stressor disproportionately resulting in constant swollen glands and fevers. I have trouble regulating my body temperature altogether though. My allergies are worse than ever and allergy attacks also trigger bad days. But the worst of it is probably brain fog. That’s an umbrella term for cognitive issues and for me it looks like not being able to recall words and actually say them. I know what I want to say, but I can’t actually say it. I lose track of what I’m doing much easier. Things take a lot more focus. My memory is shot, and I have real issues concentrating. I’m sensitive to sounds, smells, and lights. My migraines worsened.

And like now I can’t even talk about the full extent of it because I feel like people are reading this and rolling their eyes at how much I’m complaining, but this is my fucking truth, and it sucks. It sucks living like this… It’s not even living.

I exist.

I exist to push through as much as I can and take care of as much as I can while being invisibly disabled and being surrounded by people who refuse to understand or even acknowledge I’m not well. I’m expected to show up regardless of how I feel or what else I may have going on and then treated terribly when I have to be late. It’s one thing to be this sick. It’s another when even your own damn family doesn’t give a shit. The people in my home get it because they see it on a daily basis, but even then, even when I’m visually and obviously struggling to even walk, I still have to ask for help. So this illness is a big factor in how things go at my house. There’s no cure for it. This is my life now. Period. It’s difficult. I’m proud of myself for not giving up or giving in and for still managing to take care of myself and my home, but that doesn’t mean, at all, that it doesn’t weigh on me every single day of my life and nearly every single moment I’m awake.

Between rescuing, fosters, foster fails, and an accidental litter I have animals in the double digits that live with me. It was a lot of work when I wasn’t sick, but now? Oh boy. I have two cats with vision issues and anxiety. I have several with allergic skin conditions. My dane has an allergy issue as well. My chiweenie is old as Moses and needs glucosamine daily, and my staffie mix has severe diabetes. When she first showed signs, her blood sugar levels were over 500 when tested. And for months even with insulin, changes in food, more changes in food, and even more changes in food, it stayed in the 300-400 range. I was ready to pull my hair out when I researched more on my own and figured out that most dogs metabolize insulin faster than humans, so now I’m beholden to dosing her every 8 hours. It’s 9 a.m., 5 p.m., and 1 a.m. give or take 30 minutes. She isn’t great with anyone else doing her shots. She’s not really a people person at all. So…yeah, even without the cfs being a hindrance to going out and doing fun things, it’s hard to plan around that schedule. And no matter how many times I tell family and others that I can’t just let her go without or move it up too much too soon, they still make plans at times I can’t be there then get angry that I’m “late” even when I explain, again, that it will be an issue for me. You know, I get that people can’t always cater to my schedule even though I’ve always made changes to work with theirs. But to also get angry over it? That’s too much. I’m not going to risk my dog dying (and yes one missed dose causes a huge spike) for any reason much less a dinner or a party that, by now, people should know I can’t make it to at the time it starts. I love my animals. It’s not their fault I’m sick. I don’t want to find homes for them, and I’m certainly not going to neglect them. Sometimes it can be extremely frustrating, but more than that, they give me the kind of unconditional love and laughs I don’t get anywhere else. And when I can’t find any other reasons to keep going, I know I’m the only one that knows their medication schedule and they need me. Maybe that’s a bit dark, but it’s true. Holding on to the little things helps so much sometimes.

I guess you can see why the family is dysfunctional already, but I’d be lying if there wasn’t more to say. I want a peaceful life where I can be sick and have a bad day at my own home without someone taking it as abandonment. I want to be able to go to my mom’s house and NOT have my sister in law purposefully ignore me and not speak for months on end then get angry and throw a tantrum when I stop trying to make any effort. How many times do you have to show up at someone’s house with crafts in hand only for them to run off to their bedroom and slam the door before the problems aren’t blamed on you anymore instead of them? I’d really like to know. For the rest of my life, my family, the very little I have left, will always think of me as the depressed 16 year old dealing with sexual assault related trauma, abuse trauma, depression, and PTSD that made their life inconvenient. I’m 30 fucking 7 but I’m still treated like the misunderstood kid that didn’t clean her room and hated everything including and especially herself. No matter what happens, any tension with my sister in law will always be my fault because I was “tough to handle” as a teen. A bitch. She will never have any responsibility in it because that’s “just how Jenniy is.” It’s absurd. People grow up and change. I’m not even close to the same person I was that long ago, but I can’t escape it. And the kicker of it is….I SHOULD HAVE BEEN TAKEN TO FUCKING THERAPY not shit on for having a dirty room or not loading the dishwasher correctly. I shouldn’t be called “lazy” because I was a depressed teen and that somehow suggests that I can’t actually possibly be really for real sick with a chronic illness. I’m still “lazy.”

And then I have my kid’s father who lets his wife call our son “princess” because he doesn’t meet her definition of manliness, who won’t take up for him because he’d rather his child have to deal with her than argue about it. I refuse to discuss my son’s personal stuff here even with a made up name, but generally speaking, his father decided it was best to hide some things from me that could have led to serious consequences just to have one over on me, I guess. I’ve literally begged this man to spend more time with his kid, so if he really wanted to have a better relationship with him, he’s had ample opportunity to do so in a way that doesn’t include A—keeping secrets and B—treating our kid like his buddy instead of his son, but he’s never done so, and my kid shouldn’t be put at risk because for once he knew something that was going on and I didn’t. By chance. Who does that? Who puts their own kid at risk just to have a fucking secret then gets to call me angry and a shitty mom when I call him out on it? Am I perfect? By no means. But I would never dare put my own ego over my kid’s well being. And I damn sure wouldn’t do it with a partner I didn’t even want to be with and talks terribly about all the time. I’ve had to be contacted twice for a “reference” from child services for these people because her daughter from a previous relationship lies about them when she is angry, but when my son tried to explain something she had done to him recently on the very same day I was contacted by child services, HE is the one who was aggressively called a liar and even when proven, his stepmother refuses to apologize, and his dad won’t say a word about it. When I pointed out that he gets treated differently, I was told, if anything, he has fewer rules. Yeah, I fucking gd know. That’s part of the problem. Going down there with a dad who treats him like a friend instead of being his actual dad, who has no chores and no rules set for him means I get that much more attitude when he comes home and I do have more of a routine. I’m his teacher, his parents, his counselor, and his confidant. But I’m not his buddy. We have a good relationship even through the teenage attitude. I love him. We talk about things and work on art together, but we aren’t besties. He has his own friends. What he needs from me is love, support, and guidance. He needs the exact same from his dad. Not friendship. So not getting treated differently means he has no rules but gets bullied by his stepmother and his stepsister gets away with everything. Cool. Cool, cool, cool.

I think that because of my own issues with my mom that I thought so much of our strained relationship was due to her own mental health and mine as well, and I guess I expected none of the attitude and tension that comes with raising a teenager. AND BOY WAS I WRONG ABOUT THAT. That was kind of my bad though. I underestimated the full veracity of puberty hormones and the changes that come with that. We get along fine most of the time. We had some issues for awhile, but a lot of that was deeper rooted, and we’ve talked it out and been more open with each other. It’s not perfect. I don’t think there is a way to refer to life as a parent as perfect when you’re raising a teen especially when the other parent isn’t doing their part and never really has, but considering we’re around each other all day every day because I homeschool, we do alright. It’s hard not to take the attitude and the angst personally sometimes though, and I have unabashedly cried in the shower many a day.

My home life, then, has been less than ideal especially considering I don’t have a lot of outlets because of my illness and needing to be around the house every 8 hours. I can’t go on vacation to escape it for a little while. I can’t even be gone for more than a few hours at a time without paying for it for days afterward. I can’t even go out to eat at a restaurant because of my food issues. A lot of my living is done through social media and books (when I can focus on reading). What fun I do have is time spent online with people I’ve never met who are more considerate of what’s going on in my life than most people who’ve known me my whole life. Funny how that works.

To end on a better note, though, I have started some art stuff and my own etsy shop selling enamel pins. I used to think I could screw up a stick figure, but it turns out, I’m not all that bad for a beginner. I’ve collected enamel pins for a long time now and really enjoy them. I wear one every time I leave the house and make it part of whatever outfit I have on that day. It gives me an extra way to express myself through style and show off some of my geekier tastes, but I had some trouble finding things I really wanted, so I decided to try and make my own. I have a manufacturer that actually molds and produces the pins themselves, but they’re completely my design, and having people buy something with my artwork on it has been a lifegiving sort of feeling. It’s amazing. I don’t really think I can put it into words. I love when people connect to a piece I write, but I’ve always been scared to put myself out there more than a blog or occasionally a free e-zine. This is something different entirely. I’ve laid my own creations out there for people to buy and review, to reject or love, and they’ve kind of been a big hit so far. I’m over the moon about it, and honestly, I need this. I need something in my life I can sink into and be proud of right now or all the bullshit from everything else gets too heavy.

Here’s my shop if anyone is interested in looking:



Thanks for letting me vent. I was dreading this when I first got the prompt but I think I needed to vent more than I realized.

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Friday, January 12, 2018

Life Soundtrack (updated)

Today’s post is a writing challenge. This is how it works: participating bloggers picked 4 – 6 words or short phrases for someone else to craft into a post. All words must be used at least once and all the posts will be unique as each writer has received their own set of words. That’s the challenge, here’s a fun twist; no one who’s participating knows who got their words and in what direction the writer will take them. Until now.

My words are: mapping out, change is hard, decision, accomplish, dead end, indisputable truth

They were submitted by: https://thethreegerbers.blogspot.ch/

Buckle up, kids. It's a long ride. 

____________________________________

It’s difficult to get to know someone, who they are now, without knowing where they have been, who they have been. Nearly impossible, really. The version of ourselves we are at the present is illuminated by and carries the baggage of the past. We’re a sum of experiences, memories, genes, views. Everything we are is shaped, at least in part, by everything we have been. Mapping out all that personal tragedy (in my case) isn’t all that good a time. But a soundtrack… A soundtrack is something else. It’s like a mixtape for your life—using someone else’s words and art to relate the journey you’ve been on, where it’s brought you, and where you see the road headed.

So here we are, seeing the landmarks on road I've traveled from beginning to end and beyond. 

Cyndi Lauper—Girls Just Wanna Have Fun


”Some boys take a beautiful girl
And hide her away from the rest of the world
I want to be the one to walk in the sun
Oh girls they wanna have fun
Oh girls just wanna have”

I don’t have very many memories of my childhood. Those that do exist are foggy snapshots in time, moments that fail to complete the full picture. They provide just enough to know what things were like but spare me the details I really don’t think I want anyway. But one of the true ones, an absolutely crystal clear memory rare as they are, is of a very young me, maybe 3, dancing to the video for this song, amused and laughing…free. Maybe the memory has stuck with me through all these years because it was the first time I connected to music in a real way. Or maybe it was one of the few times I felt safe and happy and unconcerned with the volatility that haunted most of my childhood. Either way, that relationship with music still exists, lighting my way through even the darkest times and making sure I remember where I came from.

Eric Clapton—Cocaine


When I was 3, my parents were arrested for distribution of cocaine. To be clear, it was my dad’s cocaine, but my mom lived there so when the police took him off for the loads of it they found in our house, they took her too. And then there was tiny me, a pawn in all of this, dressed and in court every day to play on the sympathies of the jury. Between me and the money my grandparents shelled out for an attorney (and possibly to grease palms a little), I didn’t lose either of my parents for any real length of time. Was that for the best? Eh. Jury’s still out on that one.

The cocaine though was an ever-present character in my childhood. My dad loved the stuff. It didn’t love him, but he couldn’t get enough. His nickname was Stormy because of his reputation for being a mean motherfucker with a volatile temper. Maybe he would have been that without the cocaine…maybe not. Either way, he lived by this song, man.

“If you want to hang out, you gotta take her out, cocaine. “

It was never my thing. Despite the nights I saw him ride on with a little powder, fist-pumping like a champ to this song, I saw how much destruction it can cause, and I took a different path. I suppose sometimes our parents are the best ways we learn how/who NOT to be.

Nirvana—Smells Like Teen Spirit



Given I spent my teens in the 90s it seems a bit cliché to include this song on the list, but I can live with that. Around the time I was 12ish my parents finally split. My mom put up with his drugs and drinking and abuse for far too long and spent quite some time squirreling away money from her weekly paychecks trying to save up enough to move out and leave him once and for all. It took a long time for me to not fault her for staying so long, but good fucking god, leaving was terrifying. He would show up at our little rented place out of his mind with rage and drink and drugs and threaten to rain hell down upon us if she didn’t return, but she stayed strong through it. I don’t know how any of us did really. But even then I knew I would never let myself be in her shoes.

It wasn’t long after their split that my mom took me shopping. I had some money burning a hole in my pocket like it always seems to do for kids who have no concept of money, and I wanted music to soothe the ache of life. This was the first album I ever bought with my own money—that I picked out for myself. I didn’t even really know who the fuck Nirvana was at the time, but when my mom saw the album cover while shopping with me, she did that thing Moms do, that gasp of disapproval followed by a whole bunch of naggy words about not understanding the world today or some such shit. Things old people do. Of course that meant I had to have it whether I knew who the fuck they were or not. I needed that rebellion. I needed to assert who I was outside of who she was, who my father was, who all the adults were that I knew. I needed to be something else, something different, something…more.  That was the indisputable truth of the matter.

It just so happened that putting this tape in, yes I said tape, awakened all that in me and more. I don’t know if I can claim it was life-changing, but it sure did its part to make me feel at home in my own skin, and I still treasure the decision I made that day to get it. Music has done its part during so many times in my life to help me figure out what it means to be me, and this was certainly one of those times. The gritty, grungy sounds worked like sandpaper to soothe my soul and help me escape the road I was too young to have much control over. The only thing I could get a handle on was how much I really needed to be my own person. 

“She's overboard, self assured. Oh no I know, a dirty word.”

Stone Temple Pilots—Sex Type Thing



My mom moved on really fast after my parents split. She had been with my dad since she was super young, had never been on her own, and didn’t really care to be on her own ever. It just wasn’t for her. I could say a lot of things about that and the man she chose to marry as soon as the divorce was final, but some things are better left off the Internet. What I will say is they’re still married over 20 years later or whatever, and I guess that’s something.

Her choice wasn’t easy on 13 year old me, though. Change is hard, you know. I started drinking at that age to cope with all these things, stealing alcohol from my soon to be stepfather’s stash and refilling the marked bottles with water. It was a daily thing. I liked that fuzzy feeling and how it smoothed out all the rough edges in my mind that wouldn’t quite fit together like a puzzle should. I liked how it quelled my anxiety for a little while and made me sleepy and forgetful and unfazed by the dead deer hanging on the walls and the times I could hear them having sex in the next room. It's funny I'd get in trouble for drinking the few times i was caught, but no one ever seemed concerned about *why* I was drinking or even wanted to at that age--it was more a problem about me "stealing" someone else's alcohol. I was my father's child, and I guess being a drunk was just expected of me.

Anyway, I suppose my point is that I wasn’t exactly making good decisions, and my dad’s house was the place to be for bad decision making. That’s really the only reason I have for moving back in with him when I was on the cusp of 14. I wanted my home, my bedroom, my things… I wanted something to be the way it had always been, the comfort of that. And of course there I would have unlimited access to all the booze. He’d been giving it to me in front of company as a gag since I was a baby. Why would he ever have a problem doing so when I was older?

That’s where I was alone the weekend I was “date” raped at 13. He had gone to Miami to pick up some drugs to sell and left me in charge of myself with a fully stocked fridge and my grandparents just a few minutes down the road in case of an emergency. So when this boy I knew, an older boy, stopped by on his four wheeler insisting to come in, me on the cusp of 14 and getting into boys already, I kept the bad decision train rolling steadily on its tracks and let him in. We watched a movie together though the title seems to evade me, and when he moved closer to me on the couch I thought I might die. When he kissed me, I internally girl screamed so loud I just knew he would hear it. He didn’t stop there though.

“I know you want what’s on my mind. I know you like what’s on my mind.”

No matter how many times I said no more, I can’t, don’t, I’m scared, please no, please don’t, please seriously I can’t do this or the fact that I tried to get away from him stopped him from having what he wanted. No matter what I said, he was sure I wanted what was on his mind, and he would accomplish that goal whether he had to tackle me and take it or not.

The person I was died that night. I’m a wholly different person than I ever would have been without that hanging over me more than 20 years later, but I’ve accepted this phoenix I am, reborn from the ashes of that night with anxiety and a guilt complex that has stuck with me no matter how many times I had to start over, no matter how much I think I have overcome it.

Bush-Glycerine



Everyone handles sexual assault differently. I didn’t really know what to do. I just knew it wasn’t right. I confided in a friend who ended up telling her mom, and she, despite me begging her not to, told my dad. He blamed me and raged which I tried to tell her would happen—the raging anyway…I honestly didn’t expect the blame. It was my fault for being such a whore, he said, and refused to hear anything else about it.

I was already on track with bad decisions. By this point, I was smoking weed, still drinking, hanging out with older kids (the kids of his many girlfriends actually), and I took that to heart, I suppose. Sex no longer meant anything to me. It was just a thing to do…a fun thing to do. 

The first time I had sex after the rape at 14, it was with a guy almost 5 years my senior who I snuck out of the house to see. I knew it wasn't supposed to mean anything much, and I didn’t care. I just wanted to feel something, anything other than the pain. I wanted that control. We listened to this album during it—one of my favorites—and I managed to sing along at some points. I don’t know what it was about that night, but something that should have been cheap and mean nothing for either of us actually connected us in ways we couldn’t have predicted. Sort of like the characters in Zach and Miri Make a Porno. We kept in contact for a lot of years through his stints in prison and even after he finally returned home. He even asked me to marry him at one point. I fucked a guy in a Cavalier or something equally as shitty when I was far too young listening to Bush of all things and still get butterflies if I see him around or hear from him.

“Must be your skin that I'm sinking in
Must be for real 'cause now I can feel.”

As much as I have told myself sex is just that over the years, that song still makes me think of that boy and that night, and I get a rush. That’s certainly not “just sex” or just getting off, and if I’m completely honest there are some people, some connections, some intimacy worth letting your guard down for no matter how much pain it causes you in the end.

Neil Young—Rockin’ in the Free World



My dad had these two girlfriends once…. How someone like my dad had two women who didn’t mind each other  screwing around with him and traded time with him is beyond me. The drugs maybe? Either way, their kids were a bit older than me and had friends who were in a band. Do you know how awed I was at 13/14 to have friends who were INABAND?!  They did a few original songs and a couple covers. One was Weezer’s Say It Ain’t So and the other a version of this song that actually wasn’t bad.

Picture it, a field somewhere in South Georgia, 1994. “Got fuel to burn, got roads to drive.”

My life was kind of like the Moontower party on Dazed and Confused at the time. I was staying out too late with kids far too old to really be my friends, having sex and doing drugs, fucking up… I suppose that’s why I still love that movie—nostalgia. I was also super awkward, unsure of myself… I tried too hard to fit in instead of being me. I was Mitch and Sabrina all rolled into one with an extra dash of social ineptitude. I couldn’t see it then, but I learned a lot about myself during that time or rather what kind of person I really didn’t want to be. It was important to figure my own shit out, to be my own person rather than just going along with whoever I was around because those motherfuckers did NOT have their shit together no matter how much I looked up to them for awhile, and the longer I was around the more able I was to see it.

Beck—Loser



“Kill the headlights and put it in neutral.”

When I was 15, 9th grade, my dad came back from a stint in prison, a short one even, for trafficking, and he was worse than ever. I had managed to pretty much stay out of his hair enough and did enough of his housework and laundry to keep him from beating my ass too often, but that changed. He was doing more drugs, driving himself drunk more often instead of making me drive (I drove for him even at 13), and one night he pinned me to my bed and headbutt me hard enough to bust my lip luckily missing my nose in a rage I couldn’t even begin to fathom. He kicked one of my new stepbrothers across the yard for being fat breaking a few of his ribs. He broke my stepmom’s clavicle erasing all that shit she ever said about my mom just not loving him the right way. It was either move out or risk something more serious happening to me.

By then my mom had been remarried for awhile, my stepdad had nearly killed my dad in a drunken fistfight, and they moved into a rich, white neighborhood in town. I didn’t have good options, but I went where it was at least not violent, and oh man did my friends make fun of me for it. Good naturedly of course. A couple of my stoner friends really made this my theme song, and I loved, like really loved, this girl who used to sing it to me. She was funny and beautiful and jerked me around. She was the first girl I ever really had feelings for, and it opened up a whole new world for me.  I suspected before then that maybe I was different, but with her I knew it for sure. Back then I didn't really know much about how to label myself. Bi was as close as it came, but reclaiming "queer" as a label has been fitting and important, and it works better than anything else. 

RHCP—Under the Bridge


“I don’t ever want to feel like I did that day.”

So there was this boy… THE boy of my teens probably. We met in 8th grade when I transferred schools after my parents’ divorce, and despite me being a fucking weirdo (I’m still a weirdo. I just dress better now.) he overlooked it and saw me for who I was. I went to all his soccer games, traded notes with him in every class we shared, watched movies with him on the phone when we were both grounded from actually hanging out… he was the first person I ever had phone sex with and someone I naively thought I was in love with for a long time.

When he was 20, someone broke into his apartment while he was gone. He came home while they were still inside, and the guy murdered him. He never really made it past his doorway. The call I got that he was gone nearly killed me. I fell to my knees in my apartment floor begging it not to be true, and for a long time, I spent a lot of nights visiting the cemetery where he was buried pouring my heart out about what was wrong with the world and how much I missed him.

His death, the way he died, him being so young when he died, and the fact that I never really got a chance to say goodbye had a deeper impact on me that I still don’t really understand--from my career goals to the types of guys I end up being drawn to.

I had known for a long time that I wanted to go into the criminal justice system, but that event pushed me even harder and warped my thinking for a long time. I was angry and emotional. I supported the death penalty, long-term prison sentences, and mandatory sentencing laws which are pretty much the opposite of who I am today. The research I did in school eventually caused enough cognitive dissonance to get me to look at my stance objectively instead of tied to his memory, and I was able to see things more clearly. For so long, letting go of my anger seemed like a betrayal to his memory, but that was never who he was. This event changed my life in so many ways, and even now, even with all the changes and even though it’s been 15 years, I miss him so much. Sometimes I still dream about him and wake up heartbroken all over again.

He loved this song. We listened to it so many times together, and all it takes is a couple seconds in for all those memories to flood my mind, make me smirk, and feel the sting of tears in my eyes. He may be gone from this world physically, but a part of him lives in me always and forever. 

The Deftones—Passenger


The change I made in my beliefs about “justice” didn’t happen overnight. It was a process I honestly fought tooth and nail for a couple, few years. Towards the end of that, I came across a pen pal site for inmates that focused mostly on death row inmates who had murdered people in cases not much different than the one that had cost me Mat.

My anger about that was scary. How dare these people reach out and expect to find friendship they didn’t deserve… But I kept going back to it. My morbid curiosity was undeniable, and eventually I decided to write someone. I think part of me wanted to meet a monster, so I could still hold onto that righteous anger and stand on my judgmental soapbox, but that’s just not the way it worked. Don’t get me wrong—it was a completely emotional decision. The person I chose to write looked and acted a lot like my fallen friend and was accused of a crime not that far off from what took him. I honestly could come up with a million different reasons why that was my choice, but either way, looking back at all the irrational and emotion-based steps that led me to it, I still feel like it was the right choice. 11 years now I have been writing people, and even though I lost that guy, Robert, in October 2017, to execution, even though he and I had our ups and downs as friends and didn’t see eye to eye on a lot of things, writing him and others has made me a stronger, better, more well-rounded person, and I wouldn’t give it up for anything. Even battling chronic fatigue syndrome since 2016, I still find time and spend some of my spoons on writing and helping and taking care of my pen pals (who are more than just pen pals).

It’s not an easy thing, though. You go into it not knowing where you’re headed, how long you have, or how it will go. It’s always a gamble, and you’re never the driver. You’re just along for the ride.

”Mirrors sideways
Who cares what's behind?
Just like always
Still your passenger”

To be able to do this the right way no matter whether the person may have a life sentence, a shorter one, or a death sentence you have to be prepared to relinquish control and let the journey take you where it will. 11 years I invested just to lose someone, and I wouldn’t change it. He wasn’t even the first I’d lost, and he won’t be the last. Others I have written have beaten their death sentences and proven their innocence or had their life without parole sentences reduced… You just never know. And that’s kind of the beauty of it. The friendship comes without pretense simply because you have no fucking idea how anything will ever turn out, and once you embrace that, once you make the commitment to let yourself really be open and vulnerable and genuine since you really have no idea how long it will last and you don't get the comfort of hiding behind conventions, you can forge the kind of human connection that changes lives—theirs but also your own.

”Roll the windows down this
Cool night air is curious
Let the whole world look in
Who cares who sees anything?
I'm your passenger”

Don Henley—Heart of the Matter


Oh man Don Henley fucking sucks, okay? I know it. You know it. There was nothing good that came of that album, but I have a lot of memories tied to that song. My dad played it every time he was drunk (every day) and always about my mom, and I never understood it. He surely hadn’t forgiven her. Maybe it had a lot to do with them listening to it together when towards the end of their marriage. Maybe he figured out it meant something different to her even then… who knows. Maybe it was crack or meth or cocaine fueled psychosis. Or maybe this first stanza hit him especially hard right in the feels no one ever thought he could possibly have:

“I got the call today, I didn't want to hear
But I knew that it would come
An old, true friend of ours was talkin' on the phone
She said you found someone
And I thought of all the bad luck
And the struggles we went through
And how I lost me and you lost you”

I can’t ask him why that song was such a big one for him because he died in 2006. I got the call I didn’t want to hear in March of that year. He’d been diagnosed with cancer at 52. It had progressed to, well, pretty much everywhere, and with treatment, if he was lucky, he had about 6 months to live. I wasn’t exactly sure how to feel at the time. Mostly I was just numb. We never had a great relationship, but part of me did and always will love him, so in my own way, I also took it pretty hard.

He opted for treatment and lasted almost exactly 6 months being buried on *my birthday* (thanks to my darling of a stepmother to that idea) in September that year. I visited him more in that 6 months than I had in the 10 years since I’d moved out of his house. I called to check on him, let him spend time with my son, and hoped somewhere along the way that I would get some kind of apology for the hell he caused me. Hope in one hand and shit in the other, you know?

Not long before he died, the radiation he went through to shrink the cancerous spots on his brain made it so he couldn’t really talk much anymore. The words just wouldn’t come. I called late one night and talked to him on speakerphone with my stepmom there. He wouldn’t say much of anything, but towards the end he took the phone from her and kissed it. He loved me. I never really felt it in life, but on his deathbed he managed to communicate it in little ways.

After he was gone, I felt like the best thing I could do for either of us was to forgive and move on, to let go of the resentment and anger and just let his memory rest if not for him, for myself. But the harder I willed it to happen, the further from it I got, and even with a tattoo on my arm to signify his passing and my badge of courage for making it through the shitfest he made of my life, I still couldn’t get to a point where I felt okay.

My stepmom called my brother and I out to the house to pick up a few of his things she felt we might want (and let’s be clear it wasn’t much. She kept as much as humanly possible for herself and had burned all our things long before). In it was a stack of records (including that Cyndi Lauper I loved to dance to so much) and a whole box of 45s. Most of the singles were warped from being in the attic in the South Georgia weather and unplayable, but I couldn’t part with them, so I used them to form this huge music note on one of my bedroom walls with it stuck between framed copies of some of *my* favorite albums and posters from shows I’d been to and the Cyndi Lauper, of course.

Somewhere along the way coming home to that note on the wall and listening to his old records, I found the peace I needed. He’d given me that connection to music. He showed me how good it feels to share a song with someone you know they’ll really love or one that changes everything for them. He gave me my assertive, take no bullshit attitude, my will to be weird, my potty mouth and dirty sense of humor. So many of the things I love about myself were his influence. He didn’t really know how to be a good father, but in the end, he’d taught me more than I ever realized about who I wanted to be not just the things I knew I’d never become.

“There are people in your life
Who've come and gone
They let you down
You know they hurt your pride
You better put it all behind you baby
'Cause life goes on
You keep carryin' that anger
It'll eat you up inside baby”

I guess Don Henley got one thing right—it is about forgiveness.

Baroness-Coeur


I was married in 2004 at 22 ½ years old to someone I had been dating for a year. I got pregnant the next year, and my kid was born in October of 2005. Somewhere in that time and in the years of losing my dad, dealing with my lingering emotions about Mat’s murder, picking up writing, and trying to work full time, go to college full time, be a first time, new mom and still take care of most of the housework and cooking and bill paying and yardwork….I lost myself. I lost connections to music that was my own and just sort of gravitated to whatever my husband was into or whatever my friends suggested or what played on the only decent radio station around. I saw a lot of bands in that time. I loved a lot of songs, but it wasn’t the same kind of feeling as the first time I played Nirvana. None of it released my demons and made me feel like the Earth was on fire or made me feel like a part of me was flying free untethered by the bullshit of everyday life. I was Mom/Wife/employee/friend/student. I played roles. But I had failed to keep ahold of my true self, and it showed. I. Was. Fucking. Miserable.

To maybe no one’s surprise we divorced in 2008. It was too much for me to take care of a grown ass man and a child along with everything else I was doing. I was resentful and angry and unable to move past the fact that in all those years even with a child he hadn’t grown. If anything, he regressed. The fighting was too much; I put up so many walls he couldn’t feel a thing from me but icy rejection, and it ended. It wasn’t one big thing; it was a thousand tiny cuts that bled the life from me little by little day after day, and I think we both finally had enough. We’re still friends. We raise our kid together fairly well for people who were once married and couldn’t hack it, but my god it was fucking heaven being free.

Not long after I joined this social media site away from people I knew in real life (at the ex’s recommendation actually). I met a lot of folks through it (some I still keep in touch with) and that’s where I really started rebuilding. I wrote things I actually let people read. I talked openly about the horrors of marriage and dating as a single parent. I was a bit of an exhibitionist. And I fell hard for a guy from the Boston area who antagonized me purposely at every turn…like Mat and I used to do to one another. We’re still close. He’s just one of those people who left his mark on me that I can’t let go of nor do I want to. A part of me will always, always belong to him and vice versa.

But when he told me that I didn’t know real music early on in our friendship, I took great offense to it. I mean, I was kind of livid. I didn’t want to admit it that he was right about anything ever for one thing, and for another, music had always meant so much to me that it felt like a punch in the gut to hear those words. He sent me the link to this song though, and I sat back in my computer chair with a glass of wine in hand to listen, fully expecting to hate it on principle alone.

But my god it spoke to me on a level not much else had ever done. I was lost. I listened to everything the band had available and I wanted more. I wanted that feeling over and over and over again, that fluttering rush of something that resonates so well it shakes something loose in your brain and wakes you the fuck up.

“Earth burns
Earth turns
Coeur dans la mer (heart in the sea)
Corps dans le vert (body in the green)”

And so my relationship with music was reborn along with a part of myself I hadn’t even realized I let die all thanks to a boy I still call “cricket” just because.

Classico—Tenacious D


There was never really one aha! moment when it comes to being a geek mom with a geek kid that links our relationship to just one song or one band. I wasn’t ever sure I even wanted to be a mom, then all of a sudden I was pregnant. Having him almost killed me, and it took awhile for me to get into the swing of things. I read all the books. I know how other moms are and how they completely adopt “mom” as their main (only) role, but I had to do it my own way. I don’t know if most people would really understand it—I homeschool him, let him swear at home, and discuss things with him that a lot of parents seem to avoid i.e. what being gay/asexual/trans means, racism, systemic oppression, feminism, how U.S. involvement in foreign affairs has funded and created a lot of terrorist groups, why I am atheist, what my past was like… I don’t keep a lot from him, but I also make sure all of this is used for good and try as much as I can to foster empathy and the heart of an activist within him. In that same vein, I don’t really moniter what he listens to (though I don’t have much to worry about there since it’s mostly game soundtracks) nor what he watches (as long as it isn’t extremely graphic in terms of violence and/or sex). That’s how he came to be such a Tenacious D fan. We watched the movie together one night, and he was hooked. Most days you can hear him rocking it while he does schoolwork, and he knows all the words to most of the songs from the movie as well as others.

But most of all it just fits with who we are, him being a little mini-me—music-loving, weirdo geeks with inane and often dark senses of humor. Goofballs. Masters of the Swear. Often inappropriate at home. And massive nerds.

“'cause when you rule, you fucking school all of the fools, out of their jewels,
'cause if you think it's time,
if you think it's time,
if you think it's time to fucking rock.”

It’s always time to fucking rock.

Childish Gambino—Redbone and Shakey Graves—If Not For You

”But stay woke, but stay woke”

I’ve come into my own in my 30s in a way that was so unexpected. I was so used to seeing the trope of women crying and screaming and being dragged into the big 3-0 that I really had no idea that it would be this amazing to be a 30-something. I have felt more at home in my own skin at this time in my life than any others, and I have given fewer fucks than ever about the opinions of others when it comes to what I do personally while still managing to give all the fucks about what a state the world is in.

I can’t pinpoint a time when it all became clear to me, but I feel like I woke up one day after having just said “I’m not like other girls” the night before to being an intersectional feminist with fervent interests along the sociopolitical spectrum and highly focused on identity politics. It’s been a slow transition. I know that intellectually. But it doesn’t feel that way.

And along the journey, that growth led me to other arenas mostly focused on self-love. I struggle with it. I struggle with discussing my past, my demons, my mental health, my chronic illness, where I am from, my biases, and my self-image, but I fight the battles every day (and mostly I win).

Music has been a big part of the struggle.

I listened to a lot of hip hop in my teens. I also listened to a lot of metal. I don’t know how to tell you those two things work together, but I suppose a large part of it was rebellion. I dropped the hip hop along the way at some point, and I could never bring myself back to it. For a lot of reasons that are probably “obvious” to a lot of people, the genre itself seemed at odds with my politics.

“I used to know but, now that shit don’t feel right. It made me put away my pride.”

 Someone I wrote for awhile had me digging a little deeper on the genre sharing songs he loved. The lyrics were often politically driven and just as much about love and relationships and every day trials as any other genre I loved at the time—maybe even more so. It wasn’t the kind of misogynistic and violent tone so many people often associate with both the genre and culture surrounding it. I found myself sorting through all kinds of artists who saw things like I do, who had actually felt those experiences that I know need to change, that wanted something better for all people… Music didn’t have to be just an escape, but a way to feel less alone in your own thoughts and to give you the energy to keep fighting. That was the origins of hip hop anyway—activism and revolution. I know better now. I put away my pride and learned a thing or two even about a subject I thought I already knew everything about (music).

Childish Gambino was one of the first artists of the genre that I really fell in love with, but this album in particular is everything. It has so many roots in the kind of 70s black culture and music that felt like a strike back at the volatility of the times and something sorely needed today given the way things are now. If anything could represent that part of me that wakes up every day wanting to fight the good fight, it’s this album with this being the first song I heard off it. It gets stuck in my head for days, and sometimes I find myself craving the experience this album is. It's not just a record. You live it from start to finish when you put it on.

In a similar vein, I never really wanted to listen to anything too country or folk sounding because I needed to set myself so far apart from everything I know in South Georgia. Being comfortable with every part of yourself means not denying something you enjoy just because of how it might make you look to an outsider (like a country bumpkin hipster pretending to be cultured perhaps).  But when my closest friend and I first heard Shakey Graves we fell in love with the sound. I mean, we were full on obsessed. If Not For You was that song, and while the lyrics might not really apply to our friendship, I can honestly say if it wasn’t for him, I don’t know how I’d make it in this world. We threw caution to the wind about a genre so far outside our norm that day (his being punk and mine being stoner metal or really anything but that), and it was beautiful, and it bonded us even more. I will never hear Shakey without thinking of him no matter whether life keeps us together or throws us a million miles apart, and my story wouldn’t be complete without at least a chapter for him. But even more than that, embracing the sounds that I have so often rebelled against with everything else imaginable under the sun was just one more way to really be my own self, and that’s been the overall theme of my 30s. Give zero fucks and be genuine to the core.

The Staves—Tired as Fuck


I’ve been battling chronic fatigue syndrome since May of 2016, and honestly for the first year of it, I felt like my journey might have hit a dead end.

“Oh, I'm tired as fuck
Nothing no one ever can do to bring me back up
Oh, I'm tired as fuck”

Tired as fuck doesn’t even really begin to cover the kind of severe fatigue that’s one of the main symptoms of the disorder. There are days I’m not even sure how I am going to make it out of bed (I always do…because who else is going to get shit done?). It’s been a fucker of a thing, and it’s taken a lot out of me to come to terms with the idea that this is a lifelong chronic illness with no cure and symptoms that are spread across nearly every bodily system. My immune system, muscles, joints, gastrointestinal system, endocrine system, my cognition, my vision, cardiovascular system, and personality have all been affected. I’ve had to spend a lot of time and energy I don’t have relearning who I am and what my limits are and how to not equate my worth with my productivity levels. It’s not something I asked for, but it’s something I still have to keep a handle on it. And I do…mostly. It’s been a life changing, me-changing illness ever since it started. The pain, brain fog…feeling everyday like I am drunk with the flu when I rarely even drink…it’s almost surreal. 

But at the same time, it’s taught me to do some serious self-care not just fake it, to take time for myself, and to always appreciate the little things (I don’t have the fucking spoons for the big things more times than not).  I had to give up being independent to a fault and learn to ask for and accept help instead of trying to do it all (still a struggle not to feel guilty over that). I’ve had to unlearn the pressure I put on myself to get ALLTHETHINGS done in one day or in a certain time period, and now I have to get to it when I get to it. I still sometimes feel that pressure. I have a long way to go, but even with this monster of an illness I feel more in tune with life and myself. I even give myself breaks from the news (whoa!).

I can’t say it’s been good for me because let’s face it I wouldn’t wish this on my worst enemy, but I’ve been able to make some good out of the situation, and that’s all you can really ask for out of life.

Daddy Issues—Unicorns and Rainbows (boyfriend)


If I had to pick just one song to be my theme in life, it would be this one. The sound, lyrics, girl power, angst and grunge are everything that I have been and am from that little girl dancing to the very countercultural icon Cyndi Lauper to 36 year old me still wearing flannel and Dr. Martens with purple hair and tattoos and an eat shit attitude covering up a pretty soft interior.

“Haven’t you heard
I’m a sheep underneath all this fur
You should have known
I am full of shit not unicorns and rainbows”

There is nothing much else to say about it, but that I feel so ridiculously happy every single time I hear this song, and I am happy it’s mine. (thank you to Tommy for sending this band my way and so many others and how much that friendship means to me)


Rolling Stones--Can’t Always Get What You Want


I don’t know what the future holds for me. Most days I’m just working on getting out of bed and doing what I have to do lately. Who has the energy to imagine what the future might be like when you never have enough to make it through the day you’re working on without a pot of coffee and careful planning? I’ve had to re-evaluate my goals—career and personal. I won’t ever accomplish the things I set out to do when I was in my early 20s, and I’ve kind of come to terms with that. I’m happy with who I’ve become. I have people I love that love me. I have all kinds of fur kids, massive record and book collections, and a good support system. I have taught myself to sew and create as much as possible, and my letters keep me pretty fulfilled. I can’t say I have everything I could ever want, but I’m good. Despite where I’ve come from and the c.f.s., things are good. Life is alright. And that’s enough.


“No, you can't always get what you want
You can't always get what you want
You can't always get what you want
But if you try sometime you find
You get what you need”

________________________________________

If you made it this far, thanks for sticking with me. Here are the links to the rest of today's participants:

Baking In A Tornado http://www.bakinginatornado.com/2018/01/voluntarily-housebound-use-your-words.html

Bookworm in the Kitchen http://www.bookwormkitchen.com/

On the Border https://dlt-lifeontheranch.blogspot.com/

Cognitive Script https://cognitivescript.blogspot.com/2018/01/organized-sniffles-uyw.html

Part-time Working Hockey Mom https://thethreegerbers.blogspot.com/2018/01/use-your-words-turning-tables.html

The Bergham Chronicles https://berghamchronicles.blogspot.com/2018/01/stable-layne-pt-6-useyourwords.html

Southern Belle Charm http://www.southernbellecharm.com

The Blogging 911 http://theblogging911.com/blog