(Trigger Warning: Emotional Abuse, Medical Trauma, PTSD, Reference to Rape, Reference to Suicide)
Why am I still awake? It is almost midnight. Seriously, this is getting old. I know what needs to come out; I just don’t know how to get it out. Time to start writing. No thinking; just let my fingers be my conduit, silently screaming through the keyboard. The volcano is awake and wants to be heard.
I hate myself.
I have hated myself for eleven years. I have tried to ignore it. I have tried to rationalize it. I have tried to convince myself that what I did was necessary, that it was my only option. Nothing is working.
I have been raging war with myself for eleven years. This is what PTSD does to you. It tears you apart, bit by bit. Some people with PTSD are lucky enough to have memory problems regarding their trauma. Not me. I remember everything, where the sun was hitting the carpet, the color and design of the carpet, the arrangement of the chairs, and the way the receptionist looked and what the nurse look like who attended to me. I remember the hospital room layout. I was there for four days and I can tell you what each nurse looked like and the questions they asked me. I was supposed get better. My family expected it. I couldn’t disappoint them even though my soul was screaming, telling me to run. Why didn’t I run? The desire to not disappoint my family was stronger than my soul screaming to run. I am now scarred for life.
They wouldn’t help me. I told her I felt like I was dying. Why didn’t they help me? Why was I left alone with a baby and a toddler? They expected me to get better and when I didn’t they left me. He hurt me. He kept hurting me and no one would listen to me. I was supposed to be a good little wife. I was told he was under stress and I had to give him what he wanted. She told me I was selfish for not wanting to go through with it. I had to think of the family. I couldn’t put them through another pregnancy again. I had to think of my children. My son and my daughter came first. Guilt and shame. I had no defense against it and they knew how to use it on me.
I also was entering Autistic Burnout and it would only get worse after my surgery. When I was three years post-opt, I had lost so much of my ability to function that it took everything I had to remember to breathe, all I knew was that I had two little people that depended on me. I made sure that I provided for their needs no matter what. At this time I had no idea that I was autistic. It would be years later that I would finally find out why I was the way I was. It would even be longer when I learned about Autistic Burnout and how bad it really can be.
Autistic Burnout is also known as Autistic Regression. Musings of an Aspie states, “A better analogy than regression is that of the demands of life exceeding a person’s resources.” You simply do not have the personal resources to cope with what life is dumping on you. I wrote several blogs about my experience with Autistic Burnout. You can find them here – My reaction to Musings of an Aspie’s post “Autistic Regression and Fluid Adaptation” and Here I am Again – The Long Road of Living Exhausted.
(Image found at invisibleaspie.blogspot.com)
Why did I give up the fight? I didn’t want the surgery. I kept telling them that. It was my damn body after all, but they kept silencing me. They wore me down and went after me when I was most vulnerable. They used my responsibility to my kids against me.
I fought them for nearly a year after my son was born. I had nearly lost my son at 21 weeks of his pregnancy. My pelvic floor had collapsed taking my lower spine and pelvic organs with it. My pelvis twisted like a pretzel. My doctor told me that she didn’t think I would make it to 29 weeks. She was sure I would lose the baby. After five months of bed rest, multiple urinary tract inflections, and not being able to really walk, my son was allowed to be born at 38 weeks. He was healthy and alive. I had given up my body to protect his life. I was told the only reason we hadn’t lost him that day when my pelvic floor collapsed was that his head was already below my cervix. To be born, my son had to be pulled up and then pushed out. He came out screaming. All my labor pain was in my sacrum and tail bone. My tail bone actually broke in three places during the ordeal. He was born in less than three hours. It happened so fast that I didn’t even break a sweat. The pain was unbelievable even with Lamaze, but I knew it would end. All I could think of was why was I going through this again? How do women do this multiple times? My labor and delivery of my daughter was painful, but not this painful. She was to term and was born in less than ten hours. I was on bed rest for her pregnancy for two months due to preeclampsia.
After my son was born, I wasn’t rebounding. Something was very wrong. I was in so much pain. I could barely walk. My right leg felt like there was a chunk of wood attached to my hip. My back was like one of those Hawaiian dancing dolls. No support. I was terrified I was going to drop my baby every time I changed his diaper. I had to brace him to me to bend down and brace him to me again as I forced myself back up. After four months of physical therapy three times a week, my bones weren’t staying in place. My bladder and rectum were not where they were supposed to be. My period never returned. I couldn’t have bowel movements normally and had urinary incontinence. I couldn’t make love. Physical pain, mobility issues, and bathroom problems were all I knew.
My doctor couldn’t believe that I wasn’t in a ball on the floor weeping. She told me I was the most stoic person she had ever known. I hate my stoicism. I can’t turn it off. I cry alone, in private. My doctors don’t believe me when I describe my pain. My family doesn’t understand.
Why did I succumb to the bullying and pressure to have the surgery? I wasn’t ready. I was 28 years old and still nursing my son. I was 28 years old and my life as I knew it was taken away from me, because I let it happen.
A counselor suspects that I was not fully unconscious during the surgery. It takes more anesthesia to put me to sleep. Based on my hallucinations I was having months after the surgery, the counselor suspected I was conscious enough to know something bad was happening to me, but I couldn’t move to stop it. The surgery was done through my vagina to minimize having to cut through the abdominal wall. Honestly, the only descriptive word I have after the surgery is that I was raped. That is what my brain was telling me. I felt such shame from the ordeal.
I spent four days in the hospital. My uterus was removed. It wasn’t damaged. The surgeon felt I would blow out all the repair work if I got pregnant again. A hysterectomy was part of the procedure. I had two inches of my rectum removed due to prolapse. I had a bladder neck sling inserted and my bladder moved back in place. My large intestine now sits in a jumble on my bladder. It was not stapled back into place, because sections would have had to be removed and my doctor could not determine which the healthy sections were and which the damaged sections were. I have extensive nerve damage on the right of my body. I do not have access to the muscles on the outside of my thigh, but I have managed to keep my muscle size in each of my legs equal. My right leg gets tired faster than my left leg. My piriformis muscle is also damaged as well as my sciatic nerve. Both get pitched from time to time due to my bones still moving. At the time, eleven years ago, I was told the only things holding my body together anymore were my muscles and my bones. My ligaments and tendons were shot.
I had lived a healthy lifestyle all my life. Currently, I have been a runner for over 20 years. Eleven years ago, I felt my body had betrayed me. My urologist told me that what happened to me only happens to 60 year olds. How could it have fallen apart like it did? It would be years later that I realized it was my body that kept my son alive despite the damage. It held on for as long as it took. My body was not my enemy. It had saved my son’s life. It was because I had lived a healthy life style that made my body strong enough to hold together when everything was falling apart.
The L4, L5, and S1 segments of my back were also tightened, but the doctors did not tell me that they had operated on my back until after I got home. The pain from my back was what made me feel like I was dying. It is an awful thing to find out you can’t tolerate narcotics after you have had a major surgery. Anything with Codeine, such as Vicodin, causes the muscles in my lungs to spasm and I can’t breathe. Percocet does nothing for the pain, does not make me sleepy, and causes hallucinations. My doctor’s solution to the pain medicine problem? I was to take Tylenol. Tylenol doesn’t work at all.
I was so angry all the time. I didn’t want to be touched. I was hallucinating. Something was wrong. I knew I needed help. Six months after my surgery I was diagnosed with PTSD.
He wanted me back to normal, at least pre-pregnancy normal. I wasn’t well physically or mentally. He didn’t seem to care. It would take me three days to clean our 940 square foot apartment, because I hurt so much. It wasn’t good enough. Him: “Why weren’t the clothes put away?” Me: “But they are folded, can’t you put them away?” Him: Shakes his head in disappointment. I was expected to maintain my wifely duties. It didn’t seem to matter how much I hurt. I was scared of him, but I wouldn’t realize how scared I was until years later. Emotional abuse is hidden in plain sight. The target may not even know what is happening to them, especially if the abuser is passive aggressive about it.
Confusion, gaslighting, lies, putdowns, coercion, silencing, and isolating their target, this is what emotional abusers do. He told me that he was going to leave me if I didn’t have the surgery. He told me I was broken years after the surgery. I felt I was damaged goods, no use to anyone. I was trapped and no one was hearing me. They would tell me how great he was, such a hard worker, that I needed to give him a break because he was so stressed and tired. What about me? My “voice” was being disregarded and ignored. I was expected to take care of the kids, so I did. I had to be the responsible parent. They are the reason I didn’t give up. I was never suicidal, but I did want to die. I wanted the physical and emotional pain to end, but I was not going to leave my children without a mother.
I clawed my way out of that pit of hell. I started to rebuild myself. The person I had been died on that operating table. I had to start over. I was in my early 30s. Being developmentally delayed, I didn’t reach my teenage years until this time. I started fighting back. I was not going to be silenced anymore. A few years later I would be diagnosed with Autism. He could never accept my diagnosis. The abuse got worse and he left three years later. The kids have no contact with him. It has been a year.
Emotional abuse is a horrid thing, but people don’t see it, because the scars are on the inside. You can read more about my experience with emotional abuse here – Invisible Scars – A Tale of Emotional Abuse and with grief here – Grieving.
I cried the whole time I have been writing this. It is almost 1AM and my fingers are still moving across the keyboard, being my conduit where my own voice has failed me. The volcano has awoken and it wants to be heard. I need to tell my story, but I don’t know if my words convey the pain I feel.
My condition has continued to deteriorate. I have never fully recovered from my son’s pregnancy. Three years ago it was determined that my large intestine was shutting down. I faced the real possibility of having to have my entire colon removed. Luckily a new medication had come out that has enabled me to continue to go to the bathroom. The tendons holding the right side of my diaphragm has deteriorated and two years ago I was told that my muscles were the only thing holding my body together any more. My bones are essentially floating around in my body. Pain lives with me. I don’t know what it feels like not to have pain.
I am haunted.
He hurt me. They hurt me. They are still hurting me and they don’t even know it. They wouldn’t let me grieve after my surgery. She told me it was just an organ, what was the big deal? I was more than an organ. I was more than a baby maker. I already had two beautiful kids, what was a matter with me? Get over it. Did you ever think that this was something that was supposed to happen? These are all things she told me.
Pregnancy scares the shit out of me now. It is a huge trigger for me, as well as everything about it, but people don’t seem to understand. I am supposed to show happiness when someone announces a pregnancy, but I can’t. I begin to panic instead. I can’t shop for baby things, I can’t attend baby showers, and it is a big struggle for me to talk about baby things. I am told I am being ridiculous, rude, and cold, but that is not true at all.
The problem is, even though pregnancy terrifies me, it also was something I can’t really explain. It was something wonderful. How can something so wonderful terrify me so much? Another thought that I can’t shake is that I felt I wasn’t alone when I was pregnant. I don’t understand this thought, but it has stayed with me all this time. The only reason I can think for this thought is it is a result of the abuse I sustained.
I endured 15 years of an emotionally abusive marriage and didn’t realize what was happening to me. I knew something was wrong, but the abuse was committed in a way that left me feeling lost and confused, and I couldn’t get people to believe me when I tried to talk about it. He wore masks. He had his public persona and his family persona. He could be very charming one moment and the next it seemed like there was a stranger standing in my living room. He might as well have been punching me daily, because that is how it felt, but I could never pin point exactly what was wrong. He used this against me. He said everything was fine and said it was in my head. He would give me the silent treatment and refuse to want to try to resolve any dispute. He would brag about how we never fought, but all couples fight. It wasn’t healthy. Our marriage was toxic. The pressure would build and I would have a normal reaction to an abnormal situation. It was always my fault, at least to him. Everything wrong in his life was my fault. Nothing I did was ever right in his eyes and he kept changing the rules.
Then the cheating started, this was after I was diagnosed with Autism. My Autism became an easy scape goat for him. He used it to explain away his erratic behavior. It was because I was such and such and it was because I needed such and such. After my diagnosis I began to learn to create healthy boundaries. I was advocating for myself and the kids. I had started to overcome my codependency, he did not like that. He told me I was being belligerent. I could never understand what he meant by that, and when I would ask, he said I would get loud. I don’t remember that. If I did get loud, it was out of exasperation, not out of anger. He never was able to read me correctly, always misinterpreting my emotional states. You were not permitted to express emotional states in front of him, unless it was calm, happy feelings, because all other emotional states made him uncomfortable. My son’s counselor once described my ex-husband as emotionally flat lined.
I had married a man that was emotional unavailable, but it wasn’t like that in the beginning. He told me he pretended to be someone else to get me to marry him. When the mask came off, he acted like he was the center of the world and I had to honor anything he wished. I tend to be overly trusting and he took advantage of that fact. He liked that I was loyal to him, maintained the house, took care of the kids, and I always waited for him to come home. I had to let him do what he wanted when he wanted to. I was not supposed to put any request on him, no matter how benign, because it would be an assault on his freedom. At the time I did not understand any of this, because he was passive aggressive about it. This came out after he was required to have a full psychological evaluation by the kids’ counselor.
I felt utterly stupid for staying with him for as long as I did, but I had a trauma bond with him. Trauma bonds are very difficult to break. The reason he gave me for why he didn’t want to be married anymore was because he didn’t want the responsibility of a family anymore. He didn’t want to have to make choices. It was after this that I discovered the other women. I understand now that he never really loved me, though, I think he thought what he felt was love. I don’t think he ever really knew who I was. He was too busy projecting himself on to me and punishing me for things I never did. He is a very sick person, I feel bad for him, and I wish I could say he was completely out of my life. Unfortunately, you don’t always get what you want. He is still triggering me through emails and letters. I am still scared of him. There are definitely PTSD symptoms when dealing with my ex-husband.
I was conditioned to marry a man like him. I was an easy target for him. I was 23 years old when we met. I was young, naïve, and unbeknownst to me, also a codependent. I learned to be a codependent from childhood, but I am breaking free of that. Looking back at the ones who raised me, she always made excuses for him and we were to not upset him. You learned really fast never to show pain or cry in front of him, because he would yell. He yelled all the time and was emotionally distant. We were scared of him. She was passive aggressive and emotionally abusive, but she didn’t realize it. She still is that way.
She kept expecting me to be like her, a mini-me version of her, but I am not. I am me and no one else. I have my own passions, fears, and desires. I am uniquely me. She once told me, after I found out I was autistic, that she thought I would never be able to live independently, but she never said anything. She just pushed me on to men and wanted me married off. It didn’t matter how hard I had worked to gain my independence (which I did, by the way). I had to be married off. She never did that with my younger sister nor did she push my younger sister to have kids like she did me.
She wanted grandkids, and when I was engaged, she started pushing us to have kids before we were ever married. We waited, though. After my divorce, she told me she did not trust my ability to make good decisions regarding the kids. She demanded that I move into a camper trailer on their property that was three hours away so she could look after the kids. I fought back this time. I was not going to let her use guilt and shame on me again. I was stronger this time. I was not going to tuck my tail between my legs and run away. She had expected me to do that, because that was what she would have done. She got mad at me when I refused. She told me this herself. Again, she is still thinking I am like her when I am most definitely not.
I had been the primary caregiver of my children since they were born. I was the only reason my children were getting the medical care and educational assistance they needed. The kids’ counselors told me that they wished more parents were like me, informed, involved, and I didn’t keep my children in the dark as to why they were receiving the care they were. My children have been an active member in their own care for some time now, because I understood and accepted them for who they were early on and I helped them understand and accept themselves as individuals. Yet, I wasn’t trusted by the one who raised me to know how to care for my own children.
When I was little, it was drilled into my head that I had to be responsible and had to protect my younger sibling. I was only two years older, but I did my job, because rules are rules. I had to be the responsible one. I was the one who told them she needed to be on birth control. I was the one who discovered she was skipping school. Why was all this my job? Isn’t this a parent’s job to be aware of these things? No one made sure I had access to birth control. I had to ask when I knew it was time for me to be put on them.
There is a reason I felt I had known him all my life when I had only just met him. I grew up surrounded by his type of behavior. It was all I knew, so I tolerated it, made excuses for it like I had learned growing up, and it ended up destroying me.
I know I should feel very fortunate to have what I have and I do. I have two amazing children. Both my kids survived being born and I am not in a wheel chair. I know if I had gotten pregnant again, and if I was able to make it to term (and that is a big “if”), I would most likely have been paralyzed. I should be grateful, and I am, but I can’t shake these awful feelings. The feelings of guilt, shame, regret, the feelings of betrayal, jealously, anger, and fear, oh, the terrifying, debilitating fear. It won’t go away and I have tried so damn hard to get through it, to process it, to let it go. It won’t let go of me. What is wrong with me?
A few weeks ago, my sister announced that she is pregnant with her first child. The announcement triggered me so badly that I essentially went into hiding. The announcement sent me into a terrible flashback. I was back at the hospital. It was happening all over again and I couldn’t stop it. The panic attack over whelmed me and I kept having panic attacks for days afterwards. I can’t talk to any of my family members out of fear. My younger sister is having baby, the sister I was always supposed to protect growing up. I should be happy for her, but I can’t be. I need to be there for her, but I can’t be. I am going to be an aunt, but I can’t be involved no matter how much I want to. How frigging screwed up is that? It makes no sense at all. Not. One. Bit.
I don’t want to hate myself anymore. I am tired of it. I want to live my life without feeling haunted. I want to be free. I just want to be free.
My fingers have slowed down now. I think I am coming to the end. I started writing when it was almost midnight, because I couldn’t sleep and the words were clawing to get out. It is now 1:30AM. I feel some relief now, perhaps I can finally sleep. Perhaps the volcano has finally made itself heard. I know I still have a long way to go, but perhaps my spirit can be free after all.
Can you hear me? I am here and I will not be silenced! I will be free!
(Original art work from fantasy artist Josephine Wall )
**Note: All images not given credit were licensed for reuse with modification.