i have been home from hospital for about four days now, it has been really wonderful. i left early because i was sick of the daily defense of my coping mechanisms and general insensitivity i was prey to in there. they wanted me too leave anyways, they told me four days wouldn’t make much of a difference and, at first, i told them it really would make a difference to my head. i said “four days would seriously help me to lock down my new standards of living, just to have more time alone to consider and brace myself for outside living.” but after a few particularly bad days of trying to be who i was and still remain a worthy reciever of their care i had a sit down and a crying fit. i puked myself up in a flourescent bathroom. i imagined how long it would be before they would refuse me care all together, like i have heard of them doing, based on the way i cope.
i thought of someone i know who was refused care, the only difference between the two of us being i am an adult and in better health and she was an adolescent drawing nearer to death every day. when she didn’t listen and do exactly as she was told - when she acted on what she knew she needed, they refused her care, told her she was wasting bedspace. she had to seek another medical team with which she had no relationship and was mis treated and disrespected by other medical organisations who often referred to her documented incooperative past as valid terms for refusal. the message this sends is that you must be a good employee of your genetic defect - you must submit to a life of obsession with your health and your health alone - because you have been born with this you must acknowledge that the only valid pursuit is trying to reduce and control it’s effects, any thing else you manage to include in your life is luxury and not essential/should be abandoned loyally and without question on the advice of your doctor. i won’t be told what i need to live, the things i claim outside of this death sentence are the only things that make me want to try and make it to see the turning of the globe for another days cycling.
the last dialogue i had ended like this ”as much as i appreciate your concern, weve had this conversation many times now and i really wish you would respect my needs as i express them to you. i can’t only think of my health all the time and sometimes mild drug use is the best way for me to handle the depression that comes with being sick in this way. the fact that you can’t advise me on how best to take in marijuana and other substances is, in my opinion, a failure on your part as a physician and if you tell me that i don’t “”need”” to use drugs again i will take it as a malicious attempt to insult me. so now that i have warned you of that, do you think you could avoid telling me in a condescending, “”ignorant of the reality of living with a chronic terminal illness”” way the things that i “”need”” to be happy i this life?” pause. med team: “yeah i guess it’s just hard for us to “advise” you correctly since we know that no one really “”needs”” drugs.” so i decided i needed to leave. a lover came to stay and help me pack that night and by morning i was on the train home. i took my life from on their “to do” lists and i put my trust back into my will and my heart.
anyways, one way i cope is with tattooing, so today i did a tattoo about maddy. here are some images/above is the .gif! x (.gif cred goes to GRELLYONCE’) (( desertchorus.wordpess.com ))
