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

Well Practiced Survival and the Art of Happiness (Potential PTSD Trigger Warning)

I hit a speed bump tonight. My brain splatted as I hit the mental pavement and I am sitting here stuck. The speed bump? Happiness. I am happy so it makes me sad. I keep thinking about why that is and I suspect it has something to do with the tenets of survival. I have well practiced fear, anger, sorrow but I have almost no experience with happiness. Happy was the fleeting moment that escaped so quickly and I held on to for years. I can name my happiest moments and its a very limited number. 1. Comic book convention last June, 2. Sprite and the first time I had a flashback and she was there, 3. Gothmas with M, 4. My first time being published.

That last one I had to struggle to pull through the mists of time and survival. I was thinking too about the domestic violence cycle and how cut off people are. I grew up without friends. Even now my friendships are limited. Some of that is the autism factor, I just struggle there but a lot of it is because I trust very few people. How can I trust you? You might be out to get me. I am working on this alone but I do not want to. I never wanted to do it all alone. I never wanted to have to figure out how to beat domestic violence by myself. It should not be about clawing my way up ever. Yet it has been.

I have been trying to find a therapist for five years. Since I escaped my exhusband. I thought I might not make it. Maybe I should settle for one of the quacks who try to lure me in with promises of touching me while praying but I do not think so. I don’t think my wanting to mock this person for being what I perceive as a predator on the vulnerable with their unproven techniques and faith healing is going to be a valuable moment in time. I still survived him alone. It was not even over then. It is just over. Does that make me now really a survivor?

Yes and No. I was a survivor all along but in a way not being afraid has opened up all of these memories and painful things. Its over so now I can process. I am thinking on things from when I was five, that I never considered before. My brain is just now allowing itself to sort through nearly thirty years of stuff. Not all of it is bad. Not all of it is abuse. Not all of it matters. Yet it is there burbling around. If I think of my friends instead of them I end up with my first day in Kindergarten at the age of four, walking in and being called weird before I said a word.

I think on the isolation that goes with abuse and I want to try new things to see if its actually my way or if it is a side effect. I grew up surviving and being too out cast and bullied for friends. Am I so alone now because I just never learned how or is it because I am afraid of my own friends? I don’t know. I do not feel fear when Ithink of each individual. I feel happy. Yet I worry.

I talked a lotof this out with a couple of my friends. I have had friends for seven years now, but it still amazes me when I can say that. One suggested a support group. I looked some time ago, I believe last year, but figured maybe I should. She went to bed and I began to google. I found many local support groups. Tons for folks with cancer, tons for things I do not understand such as video games, and yet for all of the domestic violence groups listed with the local news papers, online in google, and even with the various agencies that help you get out if you are not disabled the only groups are for the ABUSERS. Oh there was one for single parents. Not a one for women. There is one for soldiers with PTSD but I am not a soldier. There is one for everyone but me. I still wrote some down and may call but I already feel that is an intrusion. I do not fit by not having a child, by being a woman, by not being with my abuser now.

I am not at a point where I can just remedy this by going “Okay we meet here, come on ladies and lets survive more.” That is not what I can do right now. I did it before for another need. When I first was disabled I helped with creating a chronic disease support group. Then retreated from it because I was not ready. I will not make that mistake again. So I am left hanging between faith healers and the disabling abusers getting help and my own independence. It cannot just be a side effect of abuse or I would not have survived being alone but I am wondering why I am supposed to do this part by myself too.

I do not want to. I want the experience of people who do not get frightened by happiness. Or people who do but can tell me what the difference between estatic, joy and elation is. My brain cannot stop pressing on the happiness to see what is wrong with it. There is no room in my head for joy. I want to change that but I am lost out at sea without a compass or the north star. There are no maps. It is just silence and placid and gentle waves. I do not know how to be gentle. I do not know how to let go of the anger. I am still angry at my abusers but it is smaller every day. They are dead. I out lived them and can focus on doing more than just clawing through every day.

I am also very tired. I do not want to spend the rest of my life fighting alone to figure out if its okay to smile all the time. My face is sore. Its not the usual sore of the jaw dislocations Its my mouth. From smiling. I keep doing so for no reason. I keep laughing more and more. This is not just a side effect of the surviving either. This happiness started growing long before my exhusband died.  The sensations when I stop thinking or just feel are not the same. It is no longer a hard sandpaper or stabbing pain. It is not a pain at all. Nor is it really emptiness. It is soft and quiet there. The passions are still burning in me but they do not scream to be heard over my sorrow. It is simply quiet, and I have never had that either.

I never expected the thing that would make me cave in on asking for help with my PTSD and other struggles would be happiness. I suspected someday I might have a challenge bigger than I could face alone. This is not even true. It is just that I know I do not have to do it by myself and I do not want to.

I am a ship at sea, no port to call home. The current pulls me, so I go to roam. I am a ship at sea, the waves a song to me. Far from even the open road. The winds rise and my ship sails on, to new lands will I go? Tomorrow I may find land ahoy but tonight I am just adrift in the sea.