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
pick me up
fear the cuts
I do not intend
Yet I broke
can you lift me up?
Will you laeve
I am broken
yet I was beautiful
I am beautiful
so many sharp edges
yet it is true
I am beautiful