Will I… (Trigger Warning)

 

I have been trying to hold back my level of suffering from the world. The various support groups for autism, Ehlers Danlos Syndrome, PTSD… every single one this is a reoccuring theme. I know why. Not only is being in this level of pain dangerous but it makes you vulnerable and often this is when people abandon you, attack you, or they cannot comprehend what you are trying to tell them. I do not as a rule cry when I feel so much pain but I silently sit and try to find the cause to fix it or I just learn that this is my new life. I must always be prepared for the permanence of my agony. There are people who are lucky enough that this is not the case.  I cannot stop hiding this, even when I try sometimes. There is the element of fear. If everyone knows that I can barely breathe for pain, then even the predators know. (Oh hello predators. Yes I will tazer you even when I hurt.)

This song is from rent, it is called Will I… thus the title of the post. I could die from the on going issues I have at any time. My heart could fall to pieces, a literal broken heart. I could have a heart attack from my stress and high cholesterol. I am bleeding internally somewhere, I could run out of blood. I could kill myself. That is why I am writing this post. You see, that is the whisper in the depths of what might be my soul. If I die it is over. I do not live out of some doubt about an afterlife. I do wonder but that is not a consideration in any of my choices. I do not stay alive for other people or the cats. I love many people deeply, so deeply there is an ache of joy. I guess a mental pressure sore from all the goodness. I stay alive because I want to.

I am afraid of dying and missing people. I am afraid of lingering in pain without dignity. I am terrified of being tormented by doctors as Ihave been lately. The nightmare is not the diseases or the pain. In fact some of that is better. I officially no longer am diagnosed with epilepsy but still have a seizure disorder of some sort. The some sort is not defined by science. Yet NOT having epilepsy is a miraculous thing.  It is a wonder to me.

I spend a lot of time advocating, and passionately burning for the world. Now I am just burning. The pain is in every nerve, even though some of them should not be communicating with the brain. My blood pressure is up, my heart is racing, and this is omnipresent. I have had to fight around government shut downs for my needs, but I did this. Yet all I want is to have someone hold me. Something no one can do at all. Maybe ever again. I just want to be held in a soft space of beautiful harmonics without actual sensory input. This dark space has no reality. I often find this song in the undercurrent of my psyche because it holds most of those things. Yet I do not have to wonder. No, my life will never get better. I will always have some agonizing wrong. Yes people care. I have never known how much people care, I think I do then it seems to grow. Maybe I grow. Maybe not.

I am terrified. I feel the race of time, not just because bleeding internally is very bad but I need this resolved for my mental health before november. My PTSD is at a peak height and I am not sure what I will be enduring medically but I know I will survive it if I can. Will I be allowed dignity is the true question. I am afraid to die and leave people I love, this is new to me. I never cared before. I always lived for things like spite, revenge. My revenge has been to build my life up into something I was told I could never have. I look around this space I live in and every corner has a marker of love. Every doll I own someone else gifted me, the Gothmas tree that needs its decorations and makes Sylvani happy, the pile of scarves I know will be useful and necessary that are clean, the myriad of tiny touches. My life has been a life of grief and loss. Now that I have things I want to hold on to I am afraid I cannot survive this. It is not a lack of will to live, it is a lack of trust in my doctors. I have no faith in even the best of them. Why should I with the ineptitude I have fought against for so long?

So I am left to wonder. Yes, I am in pain. No I do not know if I can survive this. I will try.

One more thing: The man who wrote Rent? He died from a condition similar to EDS called Marfan. That runs in my family too but I lack the features that mark it. That is LUCKY for me. I sometimes wonder if the pain he felt and held too close contributed to his dying, if that is why Rent hits the notes I sometimes NEED. Just a little tidbit for people who may not have known.  I do not reach for the anthems of survival that are broad and direct, they ring hollow. “I will survive” does not match my spirit. Even when that is indeed the attitude that I display as I emulate the bronco and buck for my life.

 

I am jagged glass

shattered now

pick me up

fear the cuts

I do not intend

Yet I broke

can you lift me up?

Will you laeve

I am broken

Never repaired

yet I was beautiful

I am beautiful

Shattered glass

so many sharp edges

yet it is true

I am beautiful

Beyond the Search Words

I normally name my posts before I type them out, it helps me to retain focus. Instead, I am unable to hammer out a decent title, or one free of curse words anyway. I decided, in my insomnia fit, to peruse the offerings of the internet with a few search words. Disabled and handicapped being the top two. I wanted to see what came up. I am not linking any of the blogs I found, because beyond what is already in my blogroll or private reading list (waiting for me to put it in the blogroll) disgusts me.

Ignoring the posts about disabled porn, ignoring the jokes at the expense of handicapped people I came across what appeared to be a journal of a trip by a handicapped woman. A cold and a broken leg are difficult but not disabilities, are they? The cold isn’t a disability but reasonably the leg could be a temporary disability. Not only does it effect your daily function but even after the bone heals there can be lingering damage. I still had a visceral reaction to the writing, and not in a good way.

I understand disability, and the challenges inherent in trying to maneuver in spaces that are cramped, dealing with prejudice, but writing an entire blog about how you broke your leg and that instantly makes you the most disabled person in the world is really not something I can get behind. Yes, I admit that the writer’s pain is important. However, so is their dignity.

It took me a long time to find out how to blog, because of that very thing. I did not understand the point of blogging, I did not understand that it could be done with Dignity. It was the need for dignity that lead me to posting that very first time, and each time it is the basis for my editing, rejection of some of the writing and my attempts to be open minded.

I strive for personal dignity and I work hard to not strip away the dignity of others. Reading about how cruel the world is for those with an obviously broken leg, the desire for pity instead of dignity frustrated me. So I moved on, another person was complaining about handicapped parking, and how rude it is for people who are handicapped to use it. I read about this one a lot, it sneaks up in most blogs at some point. The concept that a safe spot, with enough room to move a ramp out, your chair, and easier access to a building is beyond some people.

Moving on again, I had to do some deep breathing, refusing to let myself post cutting words to try and make them see. Attacking people, no matter how much I disagree with them is not something I want to do. That would lack grace on my part and could remove their dignity. Then, I found another post laying out another problem people seem to have with handicapped parking.

Did you know that “all handicapped drivers park crookedly, blocking me out of my car when I park near those damned cripples”? Not only is this a blanket statement making it a stereotype but, I often have to have our van pulled out, because there is rarely handicapped parking, and the cars by able bodied people are often parked just as poorly. I am not a driver, so I am not aware of how hard it is to parallel park, but with the monster chair that does not turn I cannot do it in a conference room. I perceive this act as massively difficult.

I am often tempted by magnetic signs that say “Please do not block access to this door, a ramp is contained inside and access is needed for my wheelchair”. I do not because of the local culture. It might qualify as a subculture, and yet it is dominant in my daily life. The culture towards the disabled springs from a lot of superstition and the very poor education available.

I know that the education offered to the American Children fails more and more annually, yet if you are slightly different or have any challenges you are shoved into a room and no one wants to see you. No one teaches you. I am primarily self educated, except for the teachers who actually cared enough to break into my world.

Being aware of this, and what was taught about disability in school, I know that they fear me. the ubiquitous they, in this case means the average New Mexican. The little that was taught about disability in my schooling included first, that disabled people could never function in society unless they were Franklin Delano Roosevelt, though we were taught he contracted Polio after his presidency. This is a fallacy, as I know now. Then, we were taught too, that no disabled person ever did anything of historical value. Disabled people are just evil. The contradiction in FDR’s existence never seemed to make a difference.

The superstitions continue, one of the local superstitions states that if a pregnant woman sees a horror or a disabled person, her child will be disfigured in the womb. This means if you are pregnant and stare too long at a person in a chair or even a person with a broken leg, you kill your baby. A lot of the pregnant women out here are teenagers, and a lot of the pregnant women teens and adults drink and smoke. yet the blame falls to the disabled.

The more I read tonight the more frustrated I grow. I did stop, but only to protect myself from festering rage. A cold is not a disability. Illness does not mean disability. A broken leg is a physical injury but injury does not always mean disability. Depending on the rate you heal, you might need a placard, temporarily, but that does not mean you quantifiable understand what it is to be truly disabled. Your pain is valid, do not use it to invalidate mine.

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