The Art of Happiness and Reflection and Mother

Sometimes I am not sure what makes our brains do what they do, though given that science is not either I suppose getting it at all puts me a step ahead. I am adjusting to this happiness thing. Its an omnipresent pleasant sensation that has no real sensory equal. I like it a great deal, and am often just sitting in the moment and feeling that purr deep in the space between mind and body. I am also reflecting a lot on my past. It is not painful, and if it feels so I stop. It is different than when my brain screams to understand something but is more a cataloging of how I achieved my joy.

When I can I do this by looking at pictures. I am not posting them here because mostly I do not want to look at them again. I look back and see a twisted body, heart, and mind. I see in the pictures my pain, and remember just how I got into that tight spot. Then I put them away and look at the reality. My body is not better off but it is stable again. My competent doctor, I will always revel in having a competent doctor, has helped in such astounding ways. The simple gesture of trying medicines in a different family that I am not allergic to unlocked a door for me. Its such a simple concept and it does mean malpractice on all fronts. It was never a lack of medication options but a lack of damns given.

I find my mind is not quieter despite being happy. It babbles on and on, noticing everything and pushing on to seek and discover about itself, about the world. I am so different every day than who i was before, and I cannot help but embrace that. A year ago I would have never admitted to anyone that I do not read DC comics anymore. I am still the biggest bat fan… except that I am also not unaware of the serious issues with in he DC Universe. Batman, my childhood hero, beats on people like me. The different of mind. Batman uses his money, whiteness, and power to get away with what could be literal murder in many cases.

I suppose I lost my hero in my reflections, but it is also a case of not needing him to be a hero. I still drown myself in Bat things for the pleasure of it, without the hidden hook of needing a hero. I no longer want a real Batman to swoop into my personal gotham and wreak havoc for the villains. I did that for myself. I no longer need rescuing and my world is no longer so dark that the slighest thing will bump me over into no return. It is not a world without sun, except that I still never open my curtains. It just isn’t the same.

Mother’s Day is coming, and this year it is not an agony for me either. It was not last year but that was the first time. Cutting my mother out of my life made this weekend less painful. There are some slight twinges in that I am not there for my siblings but I do not think they need me to be so much so. They are adults now and able to choose to be free of Mother’s clutches. I am taking quiet time, not to reflect but simply because I do not want to hear all the cacaphony of both joyous and obligatory Mother Stuff. I feel left out that I do not get to celebrate with my mother this way.

I am a motherless child. I am a fatherless child. I am a child of the world. Raised by the village. Given strength by the village. I know in that aspect I am not left out but a conglomeration of the best of every woman I know became mother, same with every man I know becoming father in some aspects. It all is simple and direct yet I still am reflecting. Instead of taking part in the shouting from the rooftops or hiding from the idea of what Mother used to be I am going to just reflect.

I am going to reflect on the women who I know who are amazing mothers. Some are also amazing fathers. I am going to reflect on how they changed me for the better. The idea of a good parent is still one I sometimes struggle with. The concept of loving arms gently wrapped around me is no longer a terrifying nightmare because it is unheard of to my mind, it is just an option I am less familiar with. I think of all those mothers and I will reflect on the gifts of seeing them for what they are. The best mothers are guides, and I know many people who are guides.

In achieving my own omnipresent joy I can see the strands of time and people in my life and I can see that while my own parents never parented, I was saved from being so like them by countless good mothers. The strangers who could not ignore the abuse and said something. The people who clothed us, fed us, and sometimes just offered a space where the sensory depravity of the world did not drown us. My opportunities were rare, but each one was a glimmer in the night sky. Not a signal like the Bat signal I hoped for but something much more durable. Stars, twinkling into the darkness I thought an oblivion. House lights in windows showing me there was civilization beyond what I thought was the entire world.

The world is so much larger than I knew. There is so much joy to explore. There is so much joy I was given and so much I want to share.

I know that not every person who reads this will understand why someone who knew both biological parents could be orphaned at birth in the mental sense. The idea that all parents are good is their default. TO that person I say, you are more than lucky and perhaps you will be someone’s star.

So I will reflect now, in my sea and perhaps the world will only be brighter for a reflection of a light brightens it. I am the sea of stars, each one illuminating a choice, a chance, a path that lead me to being not just who I am today but a person who could survive without hate. I understand the village now, and it is in my freedoms to know that I am there, and maybe I will be someone else’s star.

The Allure of Jesus Christ (Trigger Warning)

I understand a part of Christianity that has eluded me for some time. The revelation came in the most sacred place in my house. On the potty. Toilets are wonderful for epiphanies. It’s as if letting out all of the shit and piss inside you gives you room for grand ideas or understanding. The tone of this paragraph alone should let you all know I am not quite up to my usual standard of gleaming joy despite all the depraved nonesense in the world at the moment. I think that’s okay.

I am sad over Rose again, and another friend of mine was attacked in her home. She called me and the police, and as the attacker, who most likely is the rare stranger rapist as her neighborhood which is the nicer one in her home town, has had a rapist murderer gallivanting about lately… well as he comes for her she calls me and asks me how to seriously injure him without killing him.

The beast was unleashed. It worried me, frankly because I wanted to have her kill him. I did not do so, at least unless she didn’t follow my directions correctly but the intent to kill was not there and the police are sure he will be fine. Potentially paralysed but a walker to the throat vs him raping and killing a friend? He deserves what he gets.

Yet, I entered a two hour period of extreme darkness. I don’t like feeling that way and I haven’t for years. Not even dealing with Him, aka ex stalker scary ahh, did that. I got dark, I got depressed but not on the edge where for a few hours I fantasized about ways to kill a man with a walker anally. Lets just say my mind has it’s dim corners and some that are pitch black and the lights went out. I am fine again. M the friend of awesomeness helped me sort it out but there I was, in my dark space.

The dark space isn’t anger, it’s fear, terror, and a certain helplessness. I cannot change that Rose was most likely murdered by her greedy and ungrateful children. I cannot change that a man broke into a friend’s home and attacked her. I can however say I protected one, and i could not protect Rose. I wish I could.

So my revelation is this, I had the thought, ‘If I could protect every innocent person, deserving person, and purge the world of people like Him, Steve, and the latest jackass that came to my attention I would die the most horrible death imaginable.’

So this is the allure of Christianity. It is that supposedly someone did just that. Except of course it is clear to me that their sacrifice failed. If Christ indeed existed. Since men wrote the book, about a man, and… it’s all… lies. I understand that the moral of Christianity is not the one they intend. They intend that we should all want this, to die for others and to all be great people. It just didn’t work out that way.

I still would die for my friends, family, and most everyone in the world if it was the only way to make things better. It isn’t so I am obviously not going to go and get boiled and skinned alive or something. Martrying hasn’t worked for millennia.

The thing is… I did protect my friend. I couldn’t reach for the phone and save her but I empowered her with my knowledge of how to seriously injure and or kill people, and quickly enough that she defended herself. A seriously disabled person took out the rapist murderer, not one of the able bodied rich whining bitches who had mace, tasers and food. A person spat upon by society.

I know my darkness has a purpose, because I have given it one. It’s there to remind me why I don’t want kids, who I could be easily without choosing consciously to live, and it is there to remind me of why I hate my mother. She and my father worked hard to twist me up into a piece of garbage. I chose to be something more than feces that marrs the brilliance humanity has to offer.

So I am stressed. I am sad. I am also moving forward. My paratransit interview is imminent, which means I get to take rides from strangers. I am working furiously on this music, but my sorrow is impeding the joy that the music should hold.

I also am being cuddled by Ebay cats. Sylvani has a thing for the bathroom. I think the accessibility and familiarity of a toilet, as she was I found out, allowed to go into the bathroom at the shelter has helped her to feel safer there. So she will at least come to me in there if nothing else, and there is plenty of other stuff.

Despite my frustrations, also made worse by a few weeks of severe insomnia, I managed an hour of sleeping uninterrupted. Since Sylvani accidentally cut my hand with her claws, I “punished” her by forcing her to be petted until she purred and fell asleep curled up in bed with her. I wanted to make sure she knew a little yelp of pain wasn’t the end of the world here, because her reaction was utter terror. The round eyes and the look that Sprite used to get when we would take out the trash, someone has hurt this cat over little things. She needed to know she was safe. Heck as I type about her she is now on my couch bathing and giving me this post nap look of contentment. The nap was hours ago.

Sprite and Syl are working very hard to make me happy, it’s working most of the time. I haven’t felt this sad in two weeks, and it’s not as sad as the previous sad and yet I am still triggered. Yet I am enjoying waking up to a cat who sleeps in my arms and looks like a stuffed animal, snores, drools, and chews her tail in her sleep. Sprite isn’t enthusiastic about sharing the bed with the kitten yet but she never got to where Nymph was allowed, she merely understood that sickness meant she had to do what Ny needed.

I am wondering what it will take for me to have that same sense of relief and release for Rose, that pure moment when I know it’s okay. I am obviously not converted to Christianity by my poopiphany. I just have a bit of comprehension about why people find it approachable. It’s a bit romantic along the lines of other things that are romanticised and creepy. Dying for your sins, before you are born. If I could believe reality worked with such things, then I would be full of joy at the thought, I would hold no ill will. Neither would anyone else. It’s that utopia thing that makes my brain scream and rage, because it makes no sense.

I know this was blathery and babbly, that’s a side effect of my having had a moment where I could have gone down the dark road. I just need to sleep it off. Or write a story where someone gets murdered by a zombie in a power chair.

Little Flickers of the Candle

I mean for this to be a short post though often that is my intention and I have yet to muster one of those. I am listening to Sprite who is so soft and I am in that just woke up from my nap space still. I am making morbid associations that I can normally shunt away, I find it a bit fascinating. These are the little flickers of the mind’s candle. They are the sudden illuminations that can lead to a gasping breath as the ideas start to coalesce or clot together.

I am wondering if Sprite, who doesn’t actually like the traditional pet bed but who at the vet’s office when Nymph’s time came climbed in first, then settled down and waited with the little one actually understood that the bed was for Ny’s comfort? She has had them offered at various vets, and shunned them each time. She has her own of a sorts, it’s a lot more cloud like, a dark color, coated in catnip and she has yet to touch it. Though she was staring at it in her basket with this great look of melancholy. That or the cleaning of the basket and the addition of padding instead of a blanket is no longer “right” because it now holds no scent of the little paws and bright eyes she and I love.

There are now no hidden corners in which she can rest and inhale the warm scents, if now a bit musty, of Nymph. There are now no spaces or places in which to hide, really. Those were either changed, destroyed, or moved. This was necessary so that she can be healthy and whomever comes to live with us too. Yet I see the flickers of sorrow in her at this. Her pain is great. Not that mine isn’t but I feel hers is greater. She has never been this sad to be away from other cats.

Not Thor, whom she had wrapped around her tail and was her loyal male slave like creature. Not a lover, but instead the fetcher of toys and the kneeling footman awaiting instruction with the flick of her tail. She didn’t like his companion Mid-Knight much at all but was sorry he fell ill, Mid-Knight seemed to resent her more than she didn’t care too much about him. It was all her playfulness and rejuvinating his once quiet friend. This darned female had gotten Thor up to running up trees, despite being declawed. I always worried about Thor being allowed outside with his defenses gone, but he was not my cat. I could barely keep her in once we discovered her allergy there.

William Shakespurr, whose perfect owner is now dead as Craigslist displayed while I was companion hunting, he was not mourned for even an hour. The atmosphere was celebratory for both of us. His blundering forcefulness while endearing left us both with literal wounds and literal scars. My nearly dying at the hands of this cat was just too much to bear.

No, it was Nymph who wooed and won us. In fact I was unaware how much her presence had changed me. My doctor’s visit today helped showcase some of that. As she commented on the change and just how much cleaner things were, despite the layers of cat clothes which had been left to dry overnight on every available surface, I told her why there was so much cleaning. In fact the only real thing that needed a good scrub in general was my carpet but it looks so much nicer that it IS worth commenting on. Cat vomit stains are gone. I am doubly sold now on a carpet cleaner for myself. Yes, when I told her she was very sad. Then she looked a bit worried, and told me why she was worried

Nymph had been medicinally good for me. My blood pressure went back to normal, I had quite a long year of moderately high blood pressure. Normal for most people is high for me. I wasn’t as pale and pasty, though I am pasty again it isn’t the loss of Nymph but again, uterine dynamighting. She saw both Sprite and myself “blossom”. We became ourselves, as if the missing piece was found. That’s how it had felt with Nymphy too. That little sadness that is there is a ghost of the flickers of her candle. It’s her shadows, her scent. The ghost isn’t something Sprite or myself wanted gone either. Nymph smelled like chocolate to me. Sprite smells like sugar cookies (gluten free of course).

Thor smelled like grass. Mid-Knight’s scent was very gross, though that may have been the impending illness there waiting to be noticed. William Shakespurr smelled like pee, because he would roll in the litterbox after peeing. Very disgusting cat that one. Yet when I would lay with Sprite and Nymph on me I would smell them both and it was better than eating a chocolate chip cookie (dark chocolate chunks).

So as I wake up, via writing, I am left with the rest of the thoughts of her visit. She doesn’t think I am any more depressed than I was a few months ago. Grieving? Yes. Depressed? No. I am always a bit depressed but I didn’t lose any ability to the depression except that one hour a few months ago, before Nymph, when I had to choose to get out of bed because laying there was just being depressive and I didn’t let me. I’ve felt consistently good. Most of the time I am happy. I am death obsessed but, that’s par for the course given my life. My doctor says so. The amount of death I have dealt with outweighs most average US Citizen’s experiences. I think those studies (she could cite them, it was funny) are a bit focused on middle class white people but I could be wrong.

My exhaustion is definately a side effect of the gouts of blood. My blood tests show I actually have been cycling. My uterus is trying to WORK. My ovaries too. Damn them. She was relieved I refused birth control, and having had an anaphalactic response to Yazmin, I plan to continue to do so. That won’t stop this kind of bleeding as my blood is blood not a mix of fleshy bits that pass for blood to the unaware mind and eye. The color is wrong, there is no fade in or fade out as my body tries to get “things done”. I don’t have Cushings Disease, as was a concern for a long time. Yay, no need for Brain Surgery.

The thing is, she also is worried that my current doctor is ignoring the issue. She recommended I sue and move to … California! The fact that my best medical option is moving out of state irks me to a degree. She doesn’t think a hysterectomy is the right answer for me, sure it will fix the bleeding issue but it doesn’t tell us why I am bleeding, is invasive, potentially deadly especially in my case, and could screw me up if I don’t have an answer. It could be cancer but she still thinks, as I have said myself, that it isn’t likely. Not because I don’t have a higher risk or symptoms but because there are less deadly scary things that could be wrong. My hypothesis about Ehlers-Danlos Syndrome causing tears is the most likely. In that case, I have no clue what the treatment will be but I have guesses.

It was good to affirm what I already knew. I am fine, in fact I am hardly a flickering candle most of the time and feeling this weak is very annoying. I am not sure I am able to sue at this moment because of lawyers fees etc but I do like that she has some similar ideas on California’s climate. SHe specified LA, which is my aimed at city. I have a fantastic doctor.

I also started the process for a cat interview with Sprite, so maybe by Monday there will be another cat living here. The cat is a bit older than Ny, but then I thought Ny was too young. I am not going to age discriminate against cats at all. I just hope this set up works out. If not, then the cat’s previous owner/mother will regain property of said feline and that will be that. We’ll just try again. Sprite’s gotten down to sulking most hours because she is lonely and sad. I think another cat around to at least fight with a bit will do her wonders.

The Weight of Sadness

The weight of sadness on my soul lately has worn me through. I know a large part of it is my body trying to fail. I am on this precipice, it is raining, My hands ache and I cannot hold on and yet I am afraid of letting go. I am terrified to write, I am terrified to love, and yet I cannot stop. Writing is at the moment a sort of affliction. I wonder at times if my intellect is a curse, as there are no real outlets. Traditional education leaves me wanting greatly as I cannot do it. Reading the works of others is the same as writing, it is pouring boiling water on a blistered soul.

I am not certain why I start to cry when I think of writing. I have so many stories in my head, I have so many things that I should write and I have this dream that has haunted me for the longest time. I fear this dream. It was pleasant, but it was more a waking vision brought on by starvation that has left me quaking each and every time. I have mentioned it before but I do find it stalking me once more, the whispers, the pushing.

I know this is a pressure of my own making and I have all those excuses again. I am afraid to trust my computer, and I don’t trust the internet to save my literary work. I doubt myself too. There is a part of me that was hammered at so hard that my creativity has always been stunted. Delusions of Grandeur. This is the term that my mother and various psychologists applied to my idea that I could do anything more than be average. I am a genius so why can’t I do anything?

My usual methods of slowing the thoughts and words are failing, I think my body is the main reason. I am exhausted, and every symptom that I have is very much an indicator that something is wrong. My doctor is coming tomorrow of course, I was about to call her when she called me. It was one of those moments that makes me feel relief as if anything is worse than feeling this pressure in my skull from the words stacking themselves up, shouting louder and louder, wanting out but letting them out isn’t enough, I have to show them to people. I must let them see that I figured out the truths of the world but I dare not because those truths are the same ones that had me sent away to the mental hospitals where i was drugged and left unable to let the words out… and I can barely breathe but the phone is that bad.

My jaw. My hands. My legs. My feet. My fucking uterus. Take them all but leave my mind a way out. My eyes fail. My ears fail. I am in some sort of torment. I also am having a lot more need for stimulation. I cannot stop touching things, even when I know it will make the other broken shards of my humanity rear up and stab me. I cannot stop. I try. I spent the entire day in bed and read six novels, and not a one satiated that hunger in me.

I have remembered things, since my nap. THey are still shadows and I know the reality is I am depressed. I spent most of my life in torture. I escaped. Then married torture again. Is it any wonder that I am shaking in my soul? I am in love with someone and told them. That’s enough to leave me screaming on this cliffs edge. I start to wonder if it is really so high? I know too that my lover will catch me when I let go. He always does. Even when he doesn’t know I am about to squash him from great heights.

He knows I hate being rescued but constantly he picks me up when I fall, and asks nothing in return. It is constant. There are so many people now that are around me and I cannot give them enough. I am worried that my face doesn’t show what I feel. I am worried I am too quiet about it. I cannot speak as much lately, the words are too loud and I just want to dream. My dreams are words, music, pictures. All folded together and they can overwhelm reality. I didn’t write at all between the ages of 15-17 except for a few months when I had to for english and I found poetry bleeding out of me. I was encouraged but it was too late. I had stopped singing then too. No music. No creation. All so my mother would love me.

So these universal truths I know? Heaven is hell. That’s the secret in the bible. If angels can reside in heaven before they fall, and they can it is right there in the texts about Lucifer, then who is to say that all the angels aren’t the very demons people fear so much? This is hypothetical since I am not sure angels are even real except when I look at Sprite and she says she loves me so plainly that the deaf man across the street hears her and decrys me a witch.

The descriptions of demons are also the descriptions of angels. The layers of heaven in the scant descriptions are those of hell. I see it, and I cannot let it go. It is like the Joss Whedon is a plagiarist thing. It has sparked an explosion in me. All this comes from a work of fiction I never will share as I did not write it alone. Yet I cannot stop seeing it. It’s there. From my dreams of demons as far as I can remember which were escapes on to each story I have ever told, the duality is a singularity.

My world broke down again, and it hurts. I know the real wrench is my grief over so much loss. Each loss is culmulative. I never will stop grieving. This is my way. I don’t stop living, and I keep going but each day I spent a little time being sad. I have just been interrupted by a yowling cat, which overlaps my thoughts. Scared me. It sounds like William Shakespurr. It is not Sprite. I had to open the door and find out what it was. It was sorrow. Literal and figuratively. Sprite’s little hutch that was for her and Ny, that was too nice to give away withstood the rain alright and attracted cats from all over. I felt a spike of terror as I saw them, and I pray we cleaned it well enough. I feel guilt now too.

Yes I spend every day with at least an hour of grief. I grieve over everything I dreamed over, everything I lost, I grieve over each animal my mother let my grandmother or her husbands murder. I grieve over grandparents she swears I shouldn’t recall but I do. I recall kindness and love. I grieve for my sensei. I grieve for Snowball the cat that was drowned, I grieve for my rage at my brother and my grief goes so far as to grieve not realizing that as a toddler alone with a swimming pool he could have drowned. I grieve for my mother, I wonder who she would be if her mother had died not her father, I grieve for the multiverse of what ifs really. Yet most of all I grieve for Rose, whose children turned traitor the moment she died out of greed. I grieve for Nymph too. That fresh wound bleeds regularly and more than my allotted “time to be sad”. I grieve for the fact that I allot time to be sad.

I am letting go, and I find I don’t need to be caught this time. I knew I wouldn’t be really but I was afraid of being wrong. Sometimes the fear builds up in me and the ideas I have scrape the bedrock of what I live by, and that is painful as that bedrock is not stone but nerves and brain matter. I know my body needs tending, and so I shall tend it. I am pushing for a few things, getting my jaw fixed so that talking doesn’t end with me crying at night because it hurts. I can’t stop talking any further than I have, and I won’t give up voice acting. Then, there’s the dynamite in my uterus. I am not sure how it got there, but my ovaries have matches and keep setting it off. I think I am really bleeding, and I really do think that I need to just cut it out. It being my uterus and really I won’t use dull scissors I swear.

I am afraid of dying. Each year on my birthday there’s that “Well this is the last one” and though I buck against it a part of me fears death. This is a rare thing and will pass, it’s an annual tradition.

The dream that goads me scared me even then. It was a weight set upon me and I wonder if it is secretly desire or if it was one of those dreams that was really not a dream. I have them often enough, where things turn into reality but I did dream them. They bother me most. Usually those are scarier than nightmares. At least nightmares are fictitious.

I went to the land of death, and entered an english tea garden. I was not dressed for the ocassion and yet I found I was greeted by several women. Jane Austen, the Bronte Sisters (Emily and Charlotte) and Virginia Woolf sat at a table, and there was a spot for myself. I walked over the soft grass and seated myself. It was a bit odd for me as at this point I wasn’t familiar with their personalities but I did research after the dream. Either I extrapolated from their books or I guessed correctly. These literary greats, whose shadows I could only hope to fall into someday greeted me, there was pleasing conversation about small things for a moment while I situated myself with the best tea I have ever tasted, Picasso’s Suaree. Not sure how that last word is really spelt I have only heard it. It’s a tea like caramel, you add brown sugar and a hint of cream and it is like drinking the stars.

Virginia Woolf looked at me and said, “We have a problem with you.” I wondered immediately what I had done wrong, because really, they were dead before my time. Emily nodded, and she smiled, “You aren’t writing dear, why ever not?” I said nothing. I felt ashamed. This angered me of course because how can I feel ashamed for not writing when… my list of excuses falls short even for me so I just listened as each of them explained to me that I am far from alone in my torment of having to create, and having that creativity be something forbidden. To write as a woman now is almost passe, yes we still fight for publication and there is still this ridiculous idea that children prefer books written by men as do adults yet, facts don’t hold up for a bias for either gender but a quality of work. They each explained that they would get fevers if they didn’t write. I do, I can register it with a thermometer. I get so caught up in thinking I fall ill.

So they assured me it was my duty to write. Not a destiny. Not a choice. I am beholden to my mind to use it, and as I am a modern outsider for acceptability with literature I should. I can be satirical such as Austen, or I can be something else. I should merely put the pen to paper every day. In my dream they each handed me a writing instrument, and we enjoyed conversing. I asked about being dead and it was something that made them laugh. “Who says we’re dead?”

The afternoon shifted to evening and I was sent on my way with a reminder from Austen, though she did look at the others first before saying it. “Your words hold the lives of people in them. You can change the world with a single sentence.”

I started this blog after that, I did start a book. My exhusband destroyed that. So my great burden really boils down to one thing. Fear. I am afraid to lose more work. It is as painful as losing my friends or realizing that my mother is everything she taught me to fear and hate. It is as bad as remembering more death and destruction. I cannot stop thinking on this dream vision. I want it to be true, and in ways it has proven to be so. I write and mention periodically that people read my work and email me via my little form and they say they were going to die before they met my words. This has become a daily and often more than once daily trend. Then there are the people who have changed my world. Each person is a world in my mind after all. A universe to explore. so the words were true. What else can I do?

I am afraid. I cannot stop thinking, and I don’t think trying is the right method that leads to nosebleeds and cutting myself. I don’t do self harm. I also haven’t been this healthy in a long time despite the failings of my body. Those failings are regularly schedulable to a degree. I am afraid of succeeding. I am afraid of moving away from the horrors I know into the hope of tomorrow. I am afraid of this damned new cat idea. What if it dies? What if I just killed kittens by having that stupid cat furniture outside? What if Sprite dies? I think that would end my world really. I don’t know that I could handle that and I am so afraid of her dying. I don’t want to be afraid of that but I can’t stop it. I cannot imagine my life without her warmth or the way she says little barberous things about people that I wish I could say, and they understand her and get that “I have to poop” look. I am afraid of losing her. I know cats don’t live forever but I am terrified.

This is the weight of my sadness. I don’t know why I cannot stop carrying it around with me, except that my mother shut down all avenues of help via abuse chemically and sadness or rage are all I have known. I have wounds that bleed words, and words that bleed words. I am a font of thought and ideas and it is peculiar to this world. I cannot type fast enough either. Nor do I have the energy to stay up writing as much as my brain wants.

Is this PTSD? Is this brilliance? Is this a delusion of grandeur? I have the papers that say I am a genius, and I also prefer that term to weird, insane, crazy, but I think it covers them all. Genius is smart without normality right? Sure I have the IQ numbers but that has meant little to me. If you add the numbers together you get different things it’s like a puzzle. No I admit to genius because my conception of genius is someone who doesn’t stop thinking sometimes paralytically so.

Suicide: Recovering or Relapse? (Trigger Warning)

I wrote about what it means to actually be suicidal before, and I haven’t really touched on this topic since. Part of that was dealing with the depression. I want to talk about the recovery process and I also want you reader, to be aware that this can be triggering for people to read, or even think of. I also am not claiming to be recovered fully but I am recovered enough that I am no longer constantly looking at the things I own as weapons that could kill me.

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News: Not Bad!

I decided it is time to update on the status of my recovery. Physically I am not doing well. The Vertigo is really a challenge. I am fighting on so many fronts at all times that I feel worn out. I still cannot sleep. I am still me. I haven’t managed to find a therapist, nor have I been able to convince the insurance that I need a therapist. Sometimes I think that the government wants all disabled people (hidden, visible, mental health related, etc, I do mean ALL) to just die. They hamstring our ability to get care so often, costing them more money, that it seems reasonable to think that they would be happy if we died. All of us. At once.

I am still depressed. I am still fighting for emotional stability but my news is this. It has been one week since I wanted to kill myself last. I am still struggling with the desire to self harm, but, the ideas aren’t to kill myself now. Some of it is the old voices of my parent’s messages. My lack of value for anyone but myself takes a toll. If I hurt myself, I can punish myself and make the bad go away right? Still. I want to live and I am able to not self harm.

With all that has occured in life and the general lack of support I am doing amazingly well. For my own standards I am reaching good enough. I am on the rise. I have goals again. I can feel the words moving under my flesh again wanting out. I am still afraid, going out still terrifies me but more of this is now related to my physical body than “He could get me”. I even considered dating. I decided I am not ready to date but, I may sometime give it a whirl. I want a working wheelchair first and I have to find good spots in my riding distance because I am not going in a car for a date.

I do find it odd I have more dating options as an openly disabled person than when I was passing for abled. So over all things are not good but not bad. Just shy of good enough.

Being Suicidal (Trigger Warning)

Before I share my writing today I am giving a bit of a prologue. This is serious, and this post is a long time coming. My scooter is repared thanks to your support, and that is one of the better things. I have a full time caregiver who is fantastic, and I am working on getting better.I will write about the good stuff soon.

Please read more, I am covering this due to the serious trigger warning. I don’t do that often.

Continue reading

A Pale Cat and Frustration

Tomorrow I am going to write a letter, that I will deliver in person to my Medicaid coordinator’s boss. He gets a copy too. He has had weeks to respond to my calls. I have left voicemails. He called once, but hasn’t acknowledged since Adult Protective Services told him what was going on. He knows the situation. I am running out of time, to find a place to live.

Too, I am worried for William. I woke up a week ago and he was pale. I’ve never seen a cat that was pale before, but his carrying of the Albinism gene allowed me to see it. His nose was whiter than his fur, which is extremely white. He was sick. His body was cold, and even the pads of his paws had turned white. He let me hold him for a time but I put my hand on his stomach, and it hurt him.

I called the vet but with no money I was denied care for him, and I was left with hoping that he would recover. No suspsense is needed in this blog, he recovered. He ate an entire q-tip and managed to safely pass it. Every day since then I have woken, and immediately checked to see if my cat is pale.

Sprite has been more and more clinging, she cares for me too much at times, and yet there is never enough of it for her. Today she was so funny, that when I lifted her she put her paws out and struck the Superman flying pose. I will have to get a picture of this someday, because it was the most wonderful moment. It brought a laugh back into this apartment.

With all of the tragedy that I have been dealing with there is still hope. Most of what I own is boxed up, only two of my valuable items were lost forever, and although one is the stuffed rabbit that was a family heirloom, I am still glad to just be alive. That’s all I have to cling to right now, my Eviction is emminent, but I am alive.

I have learned that there are still gaping flaws with the foodstamps cards in my area. I cannot change my pin before they mail it, but with all the mail disappearing, I do not want it sent to me. I am not sure how I am to eat, because with my food allergies I cannot just get a food box. That’d be wasteful. I will not waste what could help others when the entire country is facing eviction as well.

This blog post has no happy ending yet but I am working on it. I know my foodstamps will accrue, so that I can stock my kitchen once I find one. I know too once I have a place to land I can resume trying to get the other needs I have met. I haven’t really been lonely. K has helped with that, she’s a vibrant woman and her presence has helped me to fight off the depression that I have been struggling with.

Soon, I will even update my photograph. I am cutting my hair as it is getting caught in my wheelchair and I keep sitting on it, which is painful and dangerous. I am also dying it black. I don’t know if I will look good or not with black hair but, I am looking forward to the change. Yes my red hair is naturally beautiful but, right now I am also not wanting to stand out. I will anyway, I can’t help it. It’s just who I am.

I know one other thing. When I move, I will resume writing my novel. I felt it today, the spark in my mind of creation. It’s still there. Just as the music has returned. Now all I need is to be able to go outside without feeling as if my life is in danger.

The Chronic Life Style

When you live with one or two or even more chronic illnesses your life changes. You lose something. Life becomes medicalized. You are removed from society, even if society doesn’t see it. Some conditions are blatantly obvious, but others may be hidden by clothing, misinformation, or even great efforts by the patient. You become a patient. Likely you also lose patience with the practice of medicine. Depending on the rarity of your disease or diseases you rapidly eschew laymen’s terms, having to research so that you can teach your doctor about the latest treatments.

It may feel like you should give up on doctors, but you may need medicine in order to have any sort of quality of life. Painful procedures including biopsies may become a regular requirement for treatment. You will have a team of doctors, none of whom communicate with one another. The coordination of this team depends on you. Most doctors will try treatments that do not corelate, and many will eventually give up on you. They want to treat you with a cookie cutter treatment, though for most rare conditions these do not exist because the pharmacutical company cannot make enough money and doesn’t really care if you are in pain.

You spend most of your life in a waiting room, and once you have a doctor in a room with you there is often a fight to get them to listen to you. Eventually, you learn how to make them listen, though this comes with practice. You are known by your first name by a pharmacist if they care. You learn to count your painmeds at the counter if they don’t. Sometimes they pretend to care just to steal your medicine.

Your doctors all want you to take dozens of pills, and often put you at risk for an overdose if you do not know why you are taking other things or their side effects. This burden can be very heavy if the pain is effecting your cognitive function. Some doctors will ignore what you want, they will ignore your chart and may prescribe drugs that you are allergic to. They then get offended when you point out that the medication will harm you. You don’t matter to these doctors and they are often specialists. You learn soon too, that you want a doctor freshly out of med school, because they are open minded and are often the ones who remember the names of rare diseases, but you want the experience of a doctor who has been at this for years.

There is no option for both, you can either have inexperience and passion or the doctor who has been dulled by years in the system. If you go to a hospital with even one medical student you will be shown off like a side show freak, because you are rare and fascinating. They will prod you, even if your condition has nothing to do with your visit. If you have an ear ache, they will still want you to flex your joints or to poke your skin to see it’s odd reactions. They all want to interview you or treat you so that they can write a paper on your condition. None of them keep in mind the humiliation that some of their questions can cause. Some doctors do not ask permission before telling these students about you, violating your HIPPA rights.

At other hospitals the internists may be in the same position as medical students, though they are much rarer. Often the internists will arrive and will ask permission. The curiosity still gleams in their eyes but they are not going to ask the questions with as much bluntness, a sign of mental maturation. Still, even if you are a small child, you forget to have a childhood. Doctor’s don’t really seem to understand that you lose your personal life.

The condition may have treatments, but many of them might be surgical. You could have a few conditions that cancel out the treatment options of others. The horrible sensation of turning into a grotesque monster may hit you. At this point, or even before, many with Chronic conditions turn to thoughts of suicide. Some even commit suicide, abandoning their families and lives. Some choose this route because they were abandoned instead. All Chronic Illnesses come with a side risk of severe and Chronic depression.

You might start laughing at every new diagnosis. You might hear the words “rare” or “genetic” and burst into giggles. They aren’t sounds of joy but it is really a mask for your horror. Each diagnosis has the same grief process. Sometimes you may be able to skip denial but you can never skip over the tears that you cry when you are alone. Even when you have a support system, they can’t always help you to feel better.

As your condition progresses you forget to do things such as buying groceries, or you have to choose between the medication that is vital to you and your pain medication. Many people with chronic conditions are looked down on if they need a handicapped space to make it through their shopping. Some careen through the store in a rush trying to get everything done before the pain overwhelms them, or the fatigue. Others use a motor cart provided by the store, praying that some little old lady doesn’t see them. They might feel guilt the first few times, but the ability to buy groceries with diminished pain is such a huge relief that they continue to use the carts.

At this point some continue to work, though others may lose their jobs. Not only are most people with Chronic conditions, even those which are supposedly pain free, fighting depression but the treatments may cost them their ability to work. If, as with Hidradenitis Supprativa, there is no treatment beyond surgery the patient will likely wait until the condition has debilitated them completely depriving them of their livelihoods. Some of these conditions are listed in the government’s database of conditions which need expeditious approval for a Disability claim.

Due to the listing in the Disability Database, the patient may run across a person who desires their disease or at least the diagnosis. This can be in the waiting room of the doctor, in line at the Social Security Administration Office, and even online, when seeking information and hope. This can often prevent a patient from seeing this doctor again. The patient might notify their doctor or the receptionist about the conversation. Instead they likely are too ashamed by what they have heard. Usually the person who has stated they desire this horrible condition believes it is truly painless, and considers it the easy way out. They are unaware of the detrimnetal effect that their words might have.

The patient with disability still faces the cyclic visitations to a doctor that the patient who has retained work or has made the choice to try and deny the need for Disability Benefits does. No chronic patient is exempt, though there may be enough relief from their condition to give them the sense of remission. Sadly due to the Chronic nature of any Chronic condition, there is no truth to this and they face the risk of a deepening depression or the onset of depression depending on their personality.

It is recommended by most physicians that patients seek therapy, although the psychiatric community eschews supporting most pain patients, preferring to tell them that their condition is in their head. The patient likely has spent years fighting for a diagnosis and will often have trouble with the notion of seeing a therapist again due to the traumatic treatment recieved before. This is not universal, though it is more common than a happy history with a therapist. This does not mean that therapy is not a good choice, as the state of mind can effect the reception of treatment by a medical physician.

Many patients will seek a support group before seeking out a therapist. With the advent of the Internet there has been an upsurge in email groups. Some patients may struggle with finding a group where they “mesh”. This struggle can be due to race, religion, or even prejudice faced against certain conditions. The rampant discrimination with in the chronic illness community can at times push people back into the mental distress mentioned previously. Many support groups try to modify the twelve step system or insist on a certain religious belief. Some members of support groups may be religious centric, focusing on prayer. Not every chronic patient wants to pray constantly. Many have had crisis of religion and are also seeking out their beliefs. This means that the religious patients who have turned to god may agitate their mental stress further.

This does not mean that any of these groups should disband, it merely means that a further support structure must be created and maintained by the patient. The patient has at this point forgotten that they can be more than a last name in a waiting room, or a first name if their last name is moderately difficult to pronounce. The patient may have had multiple personal crisis, and many years may have passed. Each patient progresses through various points in this article, and perhaps all of them. Some may be exceedingly lucky and find the perfect doctor, therapist, and have the perfect family who supports them unconditionally. These patients are rare. They also live with Unicorns.

Depending on the condition and the level of gore that the patient faces romantic interludes might be impinged. It may become difficult to hold their children, or to touch their pets. Fear may also be an issue with the patient’s spouse. Sadly, many chronic pain patients face marital crisis though a significant number of these crisis actually strengthen the relationships. Chronic Illness does not preclude the patient from desiring romance, love, or affection despite the potential for an increased level of anger as a side effect for the pain. The patient might begin to display outbursts of rage, instead of depression. They may also seem to mirror the bipolar patient (if this is not their chronic condition) with Mood Swings.

Some of these emotional reactions are the natural response to the brain altering it’s function to try and work around chronic pain. Others may be a response or side effect to treatment. Some medications excaserbate depression, others may mask the symptoms but only for short periods of time. The end of the masking period will be followed by a worsening of the condition.

With patients who have only surgery as an option there is the risk of being scammed by snake oil salesmen, untrained herbalists, and finks. A patient must research every medication, doctor, and treatment. It has become the patient who knows more than the doctor.

In order to return to being a person instead of the patient, a patient may tell their doctor to sod off. This is otherwise known as firing the incompetent buffoon. This is not always effective, as the medicalization of their humanity may have progressed rapidly and with great depth. The patient has found that resistance is futile. It appears that the Chronic Life Style is much like that of the Borg, as the patient has lost personal identity with in their medical file, beyond DNA evidence. The patient has discovered the medical hive mind, and thus their own knowledge has given them the ability to connect to it.

Published By Dr. Sarc A. Sim in the American Muddicle Association Joynal.

Author’s Note:

This was my attempt to try and vent. I spent last night trying to find out if I needed surgery for a very painful abscess that stayed hidden in my flesh for a good while. The cavernous hole was larger than a baseball, and showed up only as a small spot. The current treatment prescribed was oral antibiotics, which I stopped this morning. They made my stomach hurt and effected my reactions to the sun too much to continue.

The incompetent dermatologist I wrote about before prescribed this and a topical antibiotic that I used last night. I am now being forced to choose between improvement in the skin itself with the sensation of being burned alive or a faster progression of this illness that has no real treatment besides surgery and skin grafts. I haven’t decided yet. I am not sure I can handle that much pain.

I also am trying to get over the feeling of being alone. I wrote before about my rejection of mainstream religion, and all of the HS groups I could find last night seemed to talk about how prayer is the only treatment. This left me feeling as if I should just go to sleep and never wake up. This is a step away from suicidal thoughts for me, but is very close. The urge to give up is universal, with any challenge.

The final nail in my emotional coffin was seeing pictures of the treatment for HS. My skin is unable to hold a stitch, which means that where someone else could have the skin literally cut out completely and grafted over I could not. I did determine, as my doctor never knows and I have yet to find a Dermatologist willing to treat me more than once that I likely do not need surgery as long as I drain the abscess hourly. I am doing this and the wound is already shrunk down to the size of a golf ball.

I know I have support here, and someone else who is reading this probably found out they aren’t alone. I am considering doing something that feels drastic. I am considering building a website to host an email support group, a forum to discuss medical things, and a place to discuss non medical things. This would be a place to congregate. There would be a selection for those with the need to talk about their religious choices, but it would be seperate from the main support group as those persons are more likely to find a support group that fits them. I hope that it is clear that I am not judging anyone based on their religious choices with this, yet I want to make a place where you do not have to be religious, of the same religion, or can be an athiest without being judged.

I dislike reading about how once someone started praying, eating parsley, and did penance they realized they are marked as a sinner and that is the end cause. Yes, this is an extreme form of self belief, yet with the more untreatable conditions, of which I have many, that this form of extremism is more prevalent. I believe that some persons who happen to believe in the more widely accepted religions just as the less widely accepted religions may go to extremes but the main groups do not.

I feel that this all needed explanation as some people may be offended by my words, and that is the last thing I want. However, I needed to vent my emotions in order to subvert the depression that is trying to take over my mind.

If you would be willing to help create a system as described, please either use the contact form and drop me a line or post in the comments section. I cannot do it alone, and I do not have enough time to make this a reality at this time. This of course is logical as any group needs more than one person. I am looking at the Yahoo Groups System, as well as some of the free services for a website.

One persons Courage…

You hear about it in the news, inspirational articles, and in the whispers of people discussing someone’s life. Sometimes you hear it to your face. “You are so courageous.” I have been facing my fears lately and there has been some courage yet, most of what people tell me is courage is merely a will to live. Is the Will to Live what makes us couragous? Does this invalidate courage?

When I hear about someone being courageous, brave, or something along that line the picture in my mind is a bit gender normative and sexist. It’s a brave soldier in a black and white movie with bombs exploding behind him rescuing the little woman and running away from gunfire without breaking a sweat. I am well aware this is a very skewed image that remains in my mind. I use this image to invalidate my own experience often.

How can I be courageous? I just didn’t give up. I didn’t notice it until tonight. Giving the speech about my Thirty Seconds, I was reminded it is courageous to save a life. I found myself afraid of those words. Why fear courage? I think it is the responsibility to be something more than human that the media shows us courage is. Batman is couragous. He’s a super hero. I am just a small and broken woman at the end of her endurance trying to make it through every day.

I am trying to teach myself what courage can be, beyond the black and white John Wayne dreams. I am trying to teach myself that courage is simply living. Transgendered people who have the courage to go through the change, to live in the sex that fits their minds and not their bodies are courageous because it is their will to live. They can die for being who they are.

How terrifying it must be to have to pee in public. How terrifying it must be to go clothes shopping, to go out and feel that fear… what if someone figures out who they are and in their ridiculous hatred they attack? That is courage. It is also horribly sad that we live in a world where it is not a hate crime to attack a trans individual. I didn’t know that until recently, I thought that it was a hate crime. It should be. Living without a legal saftey net, living without basic human respect, and living without the ability to be accepted by any other minority (except for some of us who actually do care) takes courage. There are trans persons who are unable to live as they wish, because it is too dangerous.

It takes courage to live at all. It takes courage for the college student to go to her late night class, because she hears all the warnings about rape. It takes courage for the woman who was date raped to speak up, risking victim blaming and slut shaming. It takes courage for the teen mother to take pride in being a mother, bucking against the stereotypes about teen mothers. It takes courage for the disabled man to go up a flight of stairs on his hands and knees to see if his able bodied friends and family are alright after hearing a gunshot. He couldn’t escape if there was a killer. That is courage.

To revile the word courage is to revile the act of living. It takes courage for our students to go to school. We live in a world where the terror of school shootings is very real, where the hate that a disabled student feels can destroy their minds and their souls. We live in a world where there is no safe haven. It takes courage to raise a child with disabilities and to love them. It takes courage to admit that you are disabled.

It takes courage to say that you do not want to see a movie because it is full of sexism. It takes courage to be a Womanist. It takes courage to be a Feminist. It takes courage to be an advocate. It takes courage to write. It takes courage to cry. It takes courage to go out, knowing discrimination is waiting for you. It takes courage to date a person who is of another color. It takes courage to love someone who is of the same sex.

In a world as full of toxic messages, it is cowardly to defame courage. To hold the power to inspire one person is enough to change the world. To inspire countless thousands? That is a gift unparalleled. Forgive me for feeling that I was unworthy of the word courage.

I have been courageous. I am courageous to write about my time as a Victim. I am courageous to have ideas and to share them. I am courageous to start a business during a Depression.

You are courageous too. I am sure you can list ways you are courageous. I would like the comments on this post to be dedicated to your courage. What have you done that is courageous today?

Today my act of courage is to start planning the wedding ceremony for two young women in love. My acts of courage in life will include officiating their wedding ceremony. I do this with pride, and to honor their love and the courage it takes to stand up and proudly say, “I am Gay, I am Pagan, and I am in Love!”

Thank you for your life. Thank you for your courage.

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