If You're Unhappy & You Know It, Shut Your Mouth

there's been a lot of discussion lately about assisted suicide, a lot of it stemming from a movie that's coming out called "me before you" which i know nothing about and so will not comment on directly. instead, i want to talk about how disabled people talk about and treat other disabled people. id like to talk about the voices that go unheard in our struggle to be treated with respect and dignity, and mainly id like to talk about the multitude of people, both SJW's and disabled people themselves, who post about how outraged and indignant they are that someone could even hint at the idea that disabled life isn't worth living.

i think people should be a little more cautious in their outrage and indignation with this. i think that in a lot of ways, other disabled people are sometimes even worse than healthy people at criticizing and silencing other disabled people. i think there's a really, really bad habit in our community of being offended when someone else from within feels they would rather be dead than live with their disability the rest of their lives. just like most other marginalized groups, we are very good at eating our own. sometimes we go so hard with the "im proud to be a tubie/wheelchair-er/survivor/warrior/whatever" stuff that we can make other people who are those things feel completely invisible because they don't feel that way and are being told they should. we silence them by saying, "youre not doing anything for the cause with all your talk about disability sucking. sit down."

i didn't see it before, but it rapidly became very clear to me when i tried out various support groups/forums for the surprise colostomy i had found myself left with. i didn't stay in any of them for long, because i very quickly realized that if anyone else legitimately felt the way i did about it--that i would rather be dead than live with it--they weren't speaking up. in fact, it was taken as a personal offense that i would even dare think of such a thing, and i was instructed unanimously to seek psychological help, though the tone of this 'advice' ranged from sympathetic to downright nasty, including one person who encouraged me to go ahead and die because people like me are the reason there's a stigma around ostomies and everyone else would be better off without my voice being heard.

and while i understand academically at least, why people might get their feathers ruffled, i dont understand it on a personal level. it is not one and the same thing to say "i personally do not feel that MY life is worth the price tag i have to pay for it" and "everyone else in my situation isn't worth the price tag either". people react as though it is a given that if you dont feel your own life is worth living because of Reason X, theirs isnt either. it doesn't seem to come up very often that while you may share a reason, you don't share a life. and thanks to the popularity of the pain olympics, we can't point out that our lives are different, because its throwing down the gauntlet for everyone to tell the best sob story that ends in triumph over adversity.

i have never felt so alone in my life as i have since december. there is *nowhere* for me to turn where i can feel accepted and validated. my feelings about the bag have not changed, i merely stopped talking about them because all it has brought me has been grief and guilt and arguments. it turns out a couple of choruses of "im unhappy and i dont want to be here" is even more taxing to the soul than "99 bottles of beer on the wall". of course there are people who have been very supportive of my feelings, but they aren't dealing with my situation, and there are people in my situation who are not supportive of my feelings, and there has been no overlap between the groups. even the people ive spoken to or post-lurked on who also hate their ostomy still have other factors and seem to feel the reward is worth the cost. i dont. i never have, and i never will. the one person i love more than anything is why i stay--because i love her, and almost losing me nearly killed her as well, and i care about her well-being too much to voluntarily do that to her again. but i am not grateful to be here.

and that doesn't mean i dont want to live, it means i dont want to live like this. i don't want to care for this thing, i don't want to live with the godawful side effects and constant misery and pain. i don't want to have it on my body. and frankly, it upsets me that anyone could tell me that it makes me ungrateful, it makes me selfish, it makes me a blight on the disabled community because my god what kind of message am i sending. i didn't think of myself as a messenger, but i am constantly told otherwise. id better change my tune or stop singing, because the disabled community at large is more important than me. i am not the greater good, and if i won't sing in harmony with the rest of the chorus, i need to sit down.

a huge factor in play here is also that i wasnt given a choice in the matter. i hear a lot that im not alone in that, that nobody would choose to have an ostomy, but im not saying i didnt have a choice because the alternative was death--that's just having a choice you don't like. i didn't get to decide to live or die, that choice was made for me. i never consented to having it done. i had no idea that it had been done. it had never even been something that was ever brought up by any of my doctors in any of my appointments my entire life. it was never considered or discussed, and while i have a lot of fears regarding things that could go medically wrong with me, i never feared this.

but i didn't find any allies even among others who woke up one day to find themselves suddenly with this bag they weren't prepared for. they were all happy to be alive, too. they all said i needed to "get some help" and assured me that how i felt would change, and i'd learn to appreciate the bag and discover that i could still have a super awesome life. i would adapt and find a new path and be grateful to still be alive. i know it was well-intentioned, but it didn't bring me up. it felt like i was just sinking deeper into the quicksand and everyone else was standing around the pit talking about how they swam out of it and i would be able to do it as well, instead of reaching out to help me. maybe they all really were just coping that well with their stuff and something is wrong with me. or maybe they're not coping that well at all and they're afraid if they tried to help, theyd realize they were still in the pit all along.

cause the thing is, when the bulk of the disabled community screams as one voice about how proud they are to be disabled and what a warrior they are and how strong their will to live is.. the ones who arent screaming find themselves on the outside of the community. like theres something wrong with them because theyre not proud of their struggle or because they can't overcome their disability and it looks like everyone else has, and everyone else is handling it better than they are. so as a group we agree to present a united front by pretending we're standing on the edge of the pit even if in reality we're up to our eyeballs.

when healthy people shut you out, it sucks, but hey, we already knew we weren't part of that world anyway and we can just go meme about it and laugh with our fellow spoonies. there's a solidarity in being a marginalized group. but when its other disabled people shutting you out, you find yourself *very* alone in the world. at least the ring around the pit is talking to you while you sink so you're not drowning by yourself.

 i wish more people would consider the implications of how what they're saying makes some of their fellow spoonies feel. because to me, as i scroll through dozens of posts about not just this movie, but just in general about ableism, about pride, about struggle and the inevitable triumph, overcoming, fighting, and warriors, what i hear is a cacaphony of voices all telling me that my feelings are offensive and stupid and they dont matter because there's a larger picture. there's something*wrong* with me because i can't put on a smile and a tshirt that says "proud to be an ostomate" and stop making people uncomfortable by being honest.

it reminds me  of how i felt when i figured out that i was gay, and i was constantly on guard against letting anyone know that. the real me was locked away inside, because i had to protect her even though i was ashamed of her and wished she'd just stop being awful and go away. and all these years later, ive found myself back in the closet again, lying to everyone and swallowing my truths so that i wont be rejected for feelings i can not change or control. its fucking lonely. and while obviously im *glad* that most people find a way to overcome their illnesses, adaptive devices, and cyborg parts, or at least make peace with them, that simply isnt true of everyone. it feels awful enough to spend every minute of every day wishing for an end to this perpetual physical misery without also feeling like you're a terrible, selfish, broken person for not being able to cope with it better.

we need to make it okay to not cope. we need to make a safe space for people to say, "im not coping" without being told theres something psychologically wrong with them and they need to be medicated. we need to listen to each other and really, truly care what the other person is saying. we need to recognize that its OKAY to not feel like a warrior, that its OKAY to not be comfortable in your own skin, and that its OKAY if its not for reasons listed in the DSM. we need to make it OKAY for people to talk about death, and to want it to happen on their own terms. we need to make it okay to not be okay, and we need to stop making the situation worse by telling people who aren't okay that they need to shut up and stop making disabled people look bad. if we want healthy people to stop looking at us as poster children, i think a good start would be not looking at each other that way.

i don't want to be expected to live up to anyone's standard of disability or illness--healthy or otherwise.

im not a tubie. im not an ostomate. im not a spoonie or a GPer or a mito warrior. im not sick. im not disabled. i am not a spokesperson or representative of any of these communities. im just me. im just a girl with a lot of medical problems and no fight left in me. im just a girl who isn't coping but does a really good job pretending that she is. im just a girl being held prisoner in a body that won't work. i will never, ever be able to have the life that i want, and i do not want the life i have. i dont want to pay the price tag thats attached to this beating heart--but im doing it anyway. im just a broken girl who's still *here* and wants that to just be enough.

im just me, and i am not okay.

okay?

Krazy for Kratom Diary, part 1

Mitragyna speciosa (ketum, kratom or kratum] Thai: กระท่อม) is a tropical deciduous and evergreen tree in the coffee family (Rubiaceae) native to Southeast Asia in the Indochina and Malesia floristic regions. Its leaves are used for medicinal properties. It is psychoactive, and leaves are chewed to uplift mood and to treat health problems. M. speciosa is indigenous to Thailand and, despite growing naturally in the country, has been outlawed for 70 years and was originally banned because it was reducing the Thai government's tax revenue from opium distribution.

Kratom behaves as a mu-opioid receptor agonist like morphine and is used in the management of chronic pain, as well as recreationally. Kratom use is not detected by typical drug screening tests, but its metabolites can be detected by more specialized testing. The pharmacological effects of kratom on humans, including its efficacy and safety, are not well-studied. - Wikipedia

Kratom Resources:

Kratom on Erowid

The Kratom User's Guide

/r/Kratom on Reddit

I am taking red vein/white vein mix from www.microfinekratom.com

o6oo PM - just took my very first kratom capsule. i’m nervous but excited. as i obviously have nothing of substance to report yet, i figured for my opener i would talk about my goals and why i am willing to experiment with something like this.

• PROs:

- kratom is chemical-free. i am far from a homeopath or organic nut, and i love gluten more than i love my family, but i am also a scientist. and as a scientist, i am permanently horrified by the fillers, dyes, and general “icky stuff” that gets put into my body every day. i am happy to have the medications that i do, to have access to them and that they exist because they do all kinds of wonderful stuff for me like controlling my blood pressure and helping stop the ongoing cycle of vomiting that is my life. but they are still chemicals, and i still put a LOT of them into my body on a regular basis, and there are still a lot of ingredients in them that aren’t helping me, but are part of the compound of the medication itself.
- kratom does not need a prescription. this will let me take control over my own healthcare to some degree. i can decide when i need to take it and how much i need to take based on how i am feeling rather than a doctor’s personal interpretation of my conditions and their own multiple and varied concerns when it comes to scheduled drugs.

• CONs:

• - my insurance will not pay for it, and kratom costs about as much as many prescription medications. as someone on a fixed income who can barely make ends meet already, this is a big con.
• - kratom is relatively unresearched. there are any number of potentially serious side effects to using it, and i have no way of knowing whether those might happen tonight, or tomorrow or next week or after ten years of use.
• - kratom does not need a prescription. i am putting all of my faith in the supplier, that not only were they sanitary and careful about filling these capsules and farming and preparing the kratom, but also that it is indeed kratom that they are giving me. the company i used has a lot of positive reviews, but anything is possible.
• - kratom is not likely to be widely available for much longer. when we look around and see what happens to non-prescription drugs that gain a bad rap from people who used them irresponsibly and people who are afraid of the word drugs (marijuana is the best example of this, but i urge you to look at the state of ‘illegal’ drugs in portugal since the revolution and see what a positive effect decriminalizing has had!), we can assume that kratom will soon be on a blacklist somewhere.
• - it may not work.

and yes, you may have noticed the CONs list is longer than the PROs list, but these are definitely weighted lists. and the potential for pain relief and taking control of my life and my health far outweigh any of the cons. unless of course, i have some kind of crazy reaction to it and become a zombie and/or drop dead. those things would suck. although if i had to choose, i’d rather be a zombie. as long as i’m a quick, scary, awesome zombie like in 28 days and not some rotted corpse dragging my butt around like in the “thriller” video.

i hope you guys enjoyed my first kratom post, and i thank you all for taking this journey with me. this was pretty long, so it will be a separate entry, while the rest of my “kratom” diary (for my maiden voyage, anyway) will be compiled into one entry, to be followed up by long-term-use updates, hopefully.

PLUR it up & stay frosty guys.

"God Won't Give You More Than You Can Handle!"

i hate when people say things like this.

and the reason actually has nothing to do with the fact that im an atheist at all--as most would assume. but honestly, when people tell me they are praying for me, etc that does not bother me at all, quite the opposite. to me, i take that as "you're in my heart" and who could have a problem with that? someone taking time out of their day to think about you? that's huge. that touches me, regardless of my beliefs or anyone elses, it means someone cares.

but sayings like this, and other platitudes like "oh, itll get better." "its always darkest before the dawn." "youll get through it." sound encouraging but are much more insidious if you really sit and think about it. because what they translate into when other people say them to you is "you're fine, stop complaining." it translates to "i really dont want to hear about all this, so here's a bumper sticker to make you feel better." it avoids the actual conversations we need to have with the people in our lives. its a way for people to feel like they "helped" by being "inspirational" without actually having to help us in the way we need---by having someone *listen* and *care* and *be involved*.

these little phrases that get tossed around so often and so easily "you are so strong/brave/inspirational!" they are designed to allow people to distance themselves from the topic. they dont even have to think of their own words to do it, they can just pick a few photos of beaches with handwriting fonts on them to share and call it a day.

its a lot like "awareness", we all know how much people love to raise awareness for things we're already aware of. it's an exercise in self-congratulation--you get to feel like you did something without actually doing something. (see this brief article for more on that process: http://stuffwhitepeoplelike.com/2008/01/23/18-awareness/ )

people need to really realize how hurtful sayings like this are despite the fact that these sayings are totally meaningless and do nothing to help anyone. and in many cases, the only thing it does accomplish is making the person struggling feel like they are failing because they aren't strong enough or brave enough. they're not trusting god enough. they're not doing enough.

we are constantly faced with people--friends, family, doctors, strangers on the internet--telling us how not enough we are. and it adds up. and it doesnt have to be said in those words. sometimes words aren't necessary. every time someone loses a central line to sepsis, every time a tube gets screwed up. every time a surgery doesnt go quite as planned or a new med doesnt work. every time i reach the breaking point and shut my feeding pump off. failure. my stomach fails at being a stomach. my muscles fail at being muscles. my intestines fail at being intestines. my body fails at being a body. and i fail at slapping a smile on my face and pretending that everythings OK so people dont get "sad".

a few days ago, my own flesh and blood half-sister took a large piece out of me, and decided it was her job to tell me how my FB posts are "overwhelmingly negative" and even suggested some "coping techniques" i could use to get out of that "negative thought pattern" including singing a favorite song in my head.

well by golly gee willakers. you mean if i just start singing sara bareilles songs in my head, i wont be sick anymore?? IF ONLY I HAD KNOWN. the fact that she even interprets the posts that i make, which, if they are related to my health at all (and you guys on my f-list know thats far from the only thing i post about), aren't NEGATIVE, they're simply HONEST. and while apparently she doesn't give a sh*t about me, there are people that do. FB is my main method of communication with pretty much everyone in my life except my girlfriend and my grandmother. i put out UPDATES on my condition because i assume if someone is on my friends list, they give a damn. (i am sometimes very wrong about that.)

anyway, these coffee mug platitudes drive me absolutely batty. its just a way to SOUND like you care without having to make the effort to actually care. it costs them nothing. and it often costs us a lot. because its not like most of us don't already have serious body dysmophia type issues or self esteem issues, its not like every time one of us fails a feeding trial or gets an infection or has to think about adding a new piece of hardware to our cyborg bodies we feel like we're failing at the most basic human level: we cannot even feed ourselves. after breathing, eating is the most important bodily function humans need. and as i have sat here over the last two years watching friends go from eating orally to tube feeds to TPN. as i have sat here watching friends struggle with one of those other basic human actions of expelling waste and become dependent on pills and supplements to go at all, and even further watching them end up with ostomies. as i have sat here and watched all of this, i have also watched people that claimed to be their friends turning away from them, dismissing their pain, and making them feel small and unworthy.

when you are trapped inside a body that cannot feed itself, that cannot expel waste on its own, that cannot breathe properly on its own, it is really hard not to feel like a failure. because biologically, we are. (i actually said this to a friend recently---that ive accepted that i am just a lemon. im a cosmic mistake, everything is breaking down and i lost the receipt so i can't go trade this body in for one that knows how to be a body.)

i wish people would more often sit down and think about what they're saying and what it REALLY means. and what it could mean to someone who is struggling, to blow off their problems with a simple "theres a light at the end of the tunnel". sure theres a light at the end of the tunnel, but for a lot of us that light is the headlight of the train that is bearing down on us too fast to stop. and the platitudes do nothing to help that.

we're tied to the train tracks with this train bearing down on us, and the people brushing us off with empty platitudes are basically standing next to us as we're tied down, bending over, and whispering "there's a train coming, just so you know. you should probably get out of the way." and then leaving without bothering to untie us.&nbsp

they did their job, right? they let us know about the train.

the rest is on us to deal with.