Proactive vs Destructive (Trigger Warning)

Yesterday was destructive. I couldn’t bend to get into the fridge to get the food on the bottom shelf. I chose to not crawl. It took me all day to scrounge up something to eat. My kitchen is actually quite full of food, and I did pull things out of the freezer. I did my best. Hunger makes me panic. I have been hungry for most of my life. There are posters everywhere showing starving children, well I have been a starving child. I have known what it is to not know where the next meal is coming from. Hunger also disrupts my pattern. I have a set schedule, and hunger that I cannot fix ruins it.

I feel as if I am falling behind on a lot of my writing plans because I keep having to address issues beyond my control. This is of course life itself, but, really I am tired of the ping pong effect. A part of me feels punished by the caregiving agency. I felt forgotten. Today, I found out the hard way that my new caregiver isn’t going to work out. She didn’t show up. I gave her a full half an hour and called the agency.

I felt lied to. Surely they had been going to tell me that she was FIRED for not being on time? Surely my making it clear I have gone to bed hungry as a result of their failure to comply with their own promises may make it clear they need to call me and tell me when a caregiver fails before she gets here? Nope. Apparently not.

I had to choose. Do I risk more destruction by saying nothing? Do I risk alienating this person who has control over my future caregivers by saying something? What do I do? I chose to risk being destructive by being proactive. I made it clear that, “I expect communication in the future. If you know someone is not going to work out, tell me before I am stuck waiting for them. I also expect someone to come in today. I will not go to bed hungry.” I did not say outloud but implied heavily, that my being a consumer of their service hinges upon this.

Some of the destructive aspects of my hunger yesterday included admitting to the general world I am not a fan of parents. I try to keep in mind there are good parents but there is something missing in my comprehension… oh right.. I’ve never really met any before. There are some in recent days but most of my friends are actually childless, and I am still new to the idea of good parents. It’s a few years old but a few years is not enough when every fiber of my being has been taught to not trust, not trust not trust anyone who is a parent. Or… a Christian. Both have taken time and work but in hunger when I cannot think I cannot see the error of admitting that I don’t believe in fairy tale things like good parenting.

Obviously there are tons of good parents, but I have to think on this before accepting it. I have to analyze. I can accept that my cat talks, because I have always understood animals but sorry Mom, I can’t fathom good parenting. It may bite me in the butt before I even see it. In destructive mode I am more likely to forget my planned path of motion, which means some of the destruction can be physical.

Sprite has been doing her utmost to keep me steady, and today went into the fridge and grabbed a yoghurt for me to eat. She dislikes the cold, and normally we don’t have to send the cat into the food areas. She is still disgruntled but at least I had something in my system. I still am hungry though. That was to hold me over until the caregiver got here, and I only ate it out of fear.

Fear I will never eat again. Fear that in order to eat I will have to debase myself and endanger my health by crawling. Fear that if I use up the food I have then I will be hungry tomorrow. That is also a contributor to my not crawling yesterday, though there is no way I could have gotten up. I barely made it into my bed, my hips dislocated more than normal. Hunger makes my body lack the strength required to hold itself together. It used to take a lot longer for my muscles to go weak but I am recovering from starvation.

That adds to my insistence that I am given answers and information. I am aware not everyone who has a caregiver is going to NEED this information or can understand it. This doesn’t mean that I or others cannot. I need the information or I will turn into a badger, not the pestering kind but the tooth and claws and ripping your guts out kind. I have disembowled many an organizational structure for want of information. Doctors offices, a few lawyers, that grocery store that decided disabled people just don’t need food… all of them have scars from our interactions in which I found the only way to get answers was to destroy.

My destruction of others is always via the law, I find a way that insulates me from negative concequences to a degree. Yet the response to my asking for answers was as if I am imposing by wanting to know what is going on with my very own LIFE. You see, I considered the need for a caregiver yesterday. I was listening to the voices of the past. “You’re just lazy. If you just try harder you can do it.” Thanks Mom for that one too. It was her voice, though she is not the only one who said it. It was her, mocking my needs. I assessed my abilities yesterday, while trying to walk.

I need a caregiver. Even in the most destructive mode, for self or others, I need a caregiver. That mode is also less powerful than it used to be. The only thing I did that was technically bad for me was not hurt myself and dragging my trashbin outside. It smells so bad, I can smell it through my window. It has sat in my home for too many days. I chose to not vomit all night long, because that’s also bad for me. Not just the nasty taste, the bile damage to the teeth, but spinal damage occurs. The location of my break and saw bones on the spinal cord is effecting my diaphragm. Every time I gag or heave those muscles push the bones into my spinal cord. I then want to vomit for other reasons.

I need a caregiver to preserve my ability to function at this level. I know, preservation of ability in some ways seems silly, as if I am a human museum. I think that effect would be more clear if I had been moved into a clean room with two way mirrors just because I am fascinating medically. I had to fight for my independant living, and I am going to put off my need for a ventelator as long as possible. I am going to try and go the rest of my life with a bit of breathing trouble and that means I need a caregiver.

The line between proactive and destructive is not as clear in these situations. My being proactive can destroy my house of cards. I live moment to moment. I wish it could be paycheck to paycheck but that is a luxury I just cannot afford. I have to take this one hour at a time, because if I deviate too much I could be dead. If this person at the agency who handles everything for me ignores my wishes and needs, I could be dead. I felt ignored. I felt alarm bells going off, so I risked the destruction.

I don’t believe in justifiable anger. I think all anger exists for a reason. I am simply angry. Not enraged, there is a difference for me. Enraged is when I yell and consider ways to mutilate your personal life with my skill set. I try to avoid that feeling because I am mean and toxic then. Anger does not prevent me from being proactive but it feels gross. I dislike it. I like happy. I even prefer depressed to angry.

I made my anger clear. “I am angry that this has happened” seems clear to me. Suddenly I have an interview. It took less than five minutes for her to find someone for me to interview (obviously she was in process but I suspect the schedule was upped on when I meet this person) and suddenly a temp is scheduled despite the claims no one is available. I even had my CHOICE of options not “this is who we have”. My favorite temp Marlene is coming in. I like her, she’s patient with me and let me stare at her in terror for a month without batting an eye. When I started talking again she encouraged that too, and she admits it when she doesn’t get what I need done in the kitchen. She also has ideas for things to eat that I may not think of on my own, and that is helpful too.

It seems in the end there is only a razor’s edge between actions that can be proactive or destructive. I know this is not always the case but in most things I can see that. Prenatal testing walks the fine line of eugenics, the abortion debate walks the line of oppression of the poor and trying to coddle the right wing person. Both of these have the great power to be destructive. In my visualizations I see myself right now, in fine animated style. Maybe George Perez drew me? Who knows. However an inky cloud spews from me, and fire burns around me. I am pointing at the agency and the fire threatens to explode from me. This is my anger. My mouth however is free of fire, and my words are clear. “You will not neglect me.”


  1. Virgil writes of the angry bee: ‘Their rage is beyond measure; when hurt, they breathe poison into their bites, and fastening on the veins leave there their unseen stings and lay down their lives in the wound.’

  2. study for a gothic dance
    “Simpatia” by Remedios Varo…
    realised, phonometricianally, by Satie

  3. This is absolutely beautiful.

  4. That quote is particularly fitting. I however hope that my personal colony starts thriving… eventually. bzzz!

  5. Just to say I feel the same about ‘good parents’. I especially struggle with the concept of mothers loving their daughters and wonder if the women I have heard talking lovingly about their daughters actually mean it. Are they just talking that way because it is expected?

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