Wishes are not reality

I created a narrative. The narrative was true but not in the correct order or context. So does that make it a lie in its entirety? Or did I just create the one sentence to make all of the other memories easier to bear? I think the latter.
In my mind Nana always said, “I’m sorry that Billy Banks did what he did to you.” That made Nana the one and only person who reached out to me, that I remember, who told me how badly she felt for everything I’d been through. My memory deceived me. That does not at all mean that all of my memories are lies or are confused. I’ve said from the beginning that with repeated ongoing trauma, the time line gets all jumbled up.
Last night I dreamed I had just had surgery for endometriosis. I was on the couch and Nana brought over the fake flower arrangement she made for me. She used to make these arrangements. It was black and white. I am absolutely sure of that because I remember thinking it was odd to give someone who had just had surgery an arrangement of black and white flowers. Where was the color. Where was the encouragement. It just seemed dead. She handed it to me and told me she was sorry that I had been through this. It was true. My dream.
I had awful periods and my mother was sure I had endometriosis like she did which caused a hysterectomy and her sister which caused her infertility. I had surgery of what I thought would be laparoscopic to remove endometriosis. I have always remembered distinctly the feeling I had when I woke up. I heard the doctor, interestingly the same doctor who delivered my brother and me, telling my mother that he had found endometriosis on my uterosacral ligament and that was all. He said he did a D and C to clear out my uterus of any endometrial tissue as well. After I heard this I reached down and under my hospital gown I was lying on a thick pad that I was bleeding onto. I had no idea he was going to be going into my vagina to do anything. Then telling my mother…I felt like I had been raped but I had no idea why I felt this way.
When I was 8 years old I became ill with what doctors now think was a precursor to the disease that had adult onset, which infact started when I was 8. I remember not being able to move without pain. I remember the pain being the same as the pain I have now. I also remember crawling to the bathroom. But that’s not true either. I didn’t crawl to the bathroom until I had the endometriosis surgery. After I came home from that surgery, the gas that they put in my abdominal cavity to move things around and search for the endometriosis, rose up into my shoulders. They told me it would take days to dissipate. If I sat completely up it was excruciating. So I crawled around. Until it finally did go away. Maybe I did crawl to the bathroom when I was 8 years old too. Maybe doing it as a teenager reminded me of that and that is what I remember most. But in my dream, which was a real recollection, I crawled down the hallway after that endometriosis surgery.
It took a long time to heal from it. I was weak.
I had come home from a waterskiing job, lived with one guy for a year, then came back home and I have no idea where I was living but I recovered from this surgery at home until my boyfriend at the time insisted he could take care of me at his house. As soon as I got back to his house, which he carried me into because I still could not walk, I had this sickening feeling I’d left a safe place for an unsafe one. But my house was never really safe. My memory of going back with my boyfriend to his house was that at some point in the relationship his wife came home. I head her high heels down the hallway and opening the bedroom door. I was mortified. I had no idea he was married. He was separated apparently. But that’s not the point of any of this. The narrative is. I had gone back to his house because he said he would take care of me after the surgery. My family made fun of him. He was 30 years old and I was only 19 or so. I always referred to him as “the humper” in my mind. You know how you can watch a dog hump on someone’s leg. That’s what he was always doing to me. Humping up against me. It was disgusting. But I was too weak to protest him taking me back to his house so I went.
At some point I broke up with him after finding out he was only separated from his wife.
My memories. All jumbled up. Very clear in my dream.
Before I was sick at 8 years old I was having urinary issues. So I had a surgery. They put me under anesthesia. Exploratory surgery of my bladder. I’m not sure what else happened in that surgery. I remember waking up and the nurse drawing with a pen on my sheets as to what was done. I remember being on a pad, naked, under a sheet. I remember the first time I peed it was very painful and that was at my Nana’s house but I never told anyone how badly it hurt to pee.
I continued having bladder issues, UTIs and my mother even sent me to her doctor to have urethra stretching done. This doctor put these smooth glass pieces in the urethra to stretch it. Getting bigger and bigger in hopes it made me get less UTIs. It was extremely painful. Is that when I peed at Nana’s house and it hurt too? I think so. It was all very clear in my dream.
I also had gotten a sexually transmitted disease that caused my cervix to have an abnormal Pap smear. That doctor did a cone biopsy to get clear margins. She told me she did not know if I’d ever get pregnant due to the cervical dysplasia and the endometriosis background.
I also had polyps on my cervix that a doctor twisted off. I told her to stop but she didn’t. She kept saying ONE MORE SECOND.
My dream reminded me of how many times doctors had made me feel violated. If you combine what the doctors were doing with the abuse that was going on…well it was pure hell. All of it. Even at 18 I had to see yet another specialist due to vaginal pain…I wonder why….he decided to cut the tissue out of my vagina and study it. I had multiple stitches. I was under anesthesia then too. He also put a cancer treatment on my vagina that swelled it closed so that I could not urinate at all. I had to go to the ER. All in the hopes to cure me. My poor vagina is all I can think. Violated by men, traumatized, ripped off and cut out by doctors.
But in all of this I have always thought that in the MIDST of this STORM of my life, Nana had comforted me. She had been the only one to come forward in the Billy Banks abuse to tell me how sorry she was it had happened.
But I created that. I guess I needed someone on my side in my own mind. I needed to know that someone was there to really know and give me empathy. In all reality there was no one. I was accused of being a slut by the gynecologist for the sexually transmitted disease. I couldn’t tell her it was from abuse. I was told by the surgeon who cut tissue out of my vagina that maybe the pain was from past abuse and trauma to the area. He didn’t know. But that did not stop him from using me as a guinea pig. I was too young to object, know better, or stand up for myself. I was desperate for an answer and a treatment. I never got one.
I woke up from my dream/nightmare thinking about my mother. She always acted like we are on the same team. She had endometriosis so I must have it too. She had a big butt so I had one too. She wanted us to be the same and talked about us as if we were. I didn’t need that surgery for endometriosis. I didn’t need any surgery I ever had.
I had a muscle disease that the doctors were too stupid to figure out. It affected my bladder and other muscles. They just “explored” on me and my bladder and my uterus and eventually I even let the doctors take a piece of muscle from my leg. I needed an answer. I had a muscle disease was the answer but the biopsy atrophied my leg.
Such a cost to me. Such a loss to me. I’ve been tossed in the devil’s den too many times to count anymore.
After waking up, everything makes more sense though.
Between the doctors and the abusers, my body was not my own. It still doesn’t feel like my own.
I thought Nana was there for me in a way that she was not. She was in other ways growing up. She was my safe place. She was a protector.
At least that’s how I remember it.
My memories have no real time line. I know they all happened and I know that I did what I had to do to survive.
I just don’t know if I am a survivor. I don’t feel like I’ve survived anything.
I recently wrote my mother a letter. Her husband’s daughter had told me that my mother spoke of me fondly. I’ve heard this before. Apparently all of my family speaks about me to others fondly. But it’s all a lie. They will tell you that they want a relationship but that I have not reached out. They will tell you that they love me and I won’t let a relationship happen. I believed for just one moment that maybe my mother did. I felt like, since 5 years ago when they all disowned me for speaking the truth about the abuse I’d experienced, that maybe they had NOT really disowned me. They don’t make it seem like that to others. I had some things that had been left unsaid. Some things that I had learned in the five years they had disowned me. I still felt that maybe one of them would come to my door one day.
Then I received my letter back from my mother “refused” circled on it and return to sender. And it hit me. In the five years I’ve been struggling, mourning, they really did just let me go. I had created this narrative in my mind based on what they told other people (lies) that maybe there was a chance my family did care.
I wasted five years.
My family did not just stop caring five years ago.
I’m not completely sure my family ever DID really care. I believe now, with these memories coming together, that I created a narrative where they did care about me. That made surviving the abuse tolerable.
That’s just not true.
I will never know what I was to them.
When you are dead to your parents what does that make you?
When your life has been a series of devastating events where does that leave you?
I am 48 years old with severe complex ptsd and seizures and a muscle disease and a bone disease and a vaginal disorder and trigemenal neuralgia and wide spread pain and atrophy. What will become of me now. What will the narrative of the rest of my life be? I’m the only one who knows the truth of it. I tell it here but the truth has not set me free.
It has made me alone. Would I rather be alone in the truth or surrounded by liars. Seems like it would be an easy question to answer. It isn’t.
I’ve begun to lose hope that there will ever be any normalcy in my life. Now that I am living in the truth and am aware of the truth in my past, I can a tiny bit understand why some choose to live in an illusion.
I can understand why I made Nana say she was sorry about what Billy Banks did to me because it was coping. But it wasn’t true. No one really cared about what Billy Banks did to me. And he was only one very very tiny part in the destruction of my childhood. Why would I ever have thought anyone would ever have cared about anything else.
I can only wonder what my dreams will remind me of next.
I know there is more I have suppressed.
I can hope it will stay buried in the recesses of my mind. But nothing does. The truth always comes whether we want it or not. I wish my truth were better. I wish it did not have so much tragedy. I wish my Nana really would have said what I thought she did. Wishes are not reality….

Eating disorders.

I like this me now. Healthier brain and body.

This me is hard to look at from years in the past.

I was less than 100 lbs when I met my husband. Drinking slimfast for breakfast and lunch and who knows what for dinner. Biking, working out, running stadiums…and not eating.

It took me far into my marriage to understand that I had an eating disorder. It took even more years to grasp why I had it.

It did not start out as a conscious choice. I had to be under 110lbs to be on the top of the pyramid at my job at Seaworld. The more acts you were in the more you got paid. Top of the pyramid paid more money.

That morphed into control. My entire life, control had been taken from me and now I could control how I looked. What I saw in the mirror is not who I see in this photo. I thought I looked healthy. I look emaciated. I’ve found other photos where I look worse.

After the muscle disease diagnosis, and the inability to work out anymore, that need for control got even stronger. But, you cannot starve an already dying muscle. So I started to eat.

I see anorexic women. All the time. And men. I saw one at the park today. I saw one in my neighborhood a few days ago. And I KNOW. And it PAINS me. I want to scream YOU ARE KILLING YOURSELF STOP STARVING YOURSELF. But it would not matter. I want to yell I KNOW HOW MUCH PAIN YOU ARE IN AND WHY YOU ARE DOING THIS. But they would not believe me. Sometimes you just have to come to it on your own. When people would comment how thin I was I thought GOOD I will keep getting thinner then! They want me to gain weight, I will lose it because I can and they cannot control me! The thinking is very distorted.

Someone said to me once that they could not believe anorexic people choose not to eat when others around the world are starving. I promise you it is not that simple. It is deeply complex. My anorexia was rooted in the sole focus of my body. Men wanted my body. They wanted to use it and abuse it. Everything was about my body and how I had no control over it. So, I thought I gained control with food. That is how I would get my body back.

That is not how I got my body back. I had to separate what was done to me from who I was as a person. I had to take back what was stolen from my body by loving it and nourishing it. It was very very difficult.

I’ve had people say..oh that’s why you got the muscle disease. Sorry hon…faulty genes gave me the muscle disease. Never blame a person for something they cannot control. It just snowballs and makes everything worse.

Therapy diagnosed me but I decided to tackle the eating disorder on my own. I’ve known many women who did the opposite of what I did, and gained weight purposely for the same control reasons. You just don’t know us until you’ve walked in our shoes. Why we are too thin or considered overweight. You just don’t know why and should not assume. It is a battle! For me overcoming abuse has been the battle of my life! You’d think it would be this muscle disease. Overcoming THAT! No. It’s the abuse that has haunted me.

I’d say I overcame the eating disorder but that would not be fully true. I will be in bed at night knowing that I’ve eating many meals and thinking I’m hungry. I will then try to talk myself out of going and getting food. “You don’t need it! You’ve had enough! Just sleep.” But now I listen to my body that says, “but I’m hungry” and I get up and go get something to eat. There is an ongoing dialogue that I wish were not there but may always be. I look in the mirror and think I’m fat. Then I look at a photo and think UGH I’m so fat and I can’t work out and there is nothing I can do because of the muscle disease. Then I have to tell myself…you are doing the best you can at being your authentic self so lets not put a weight number on that. And then I step away from the mirror and don’t think about it anymore. At some point I got a scale and realized I weighed 135 lbs and I ALMOST slipped. Then I got rid of the scale. I was honest with my family and said take it away! I cannot focus on my body in THAT way. I can focus on it doing yoga, breathing, making sure I get enough protein for my muscles. I cannot look at a scale.

Acceptance has been a huge turning point in all of my biggest moments in life. Accepting the extent of the abuse. Accepting that I have PTSD. Accepting some of the choices I made because of the abuse. Accepting that some of those choices were not as much in my control as I thought. They were abuse choices.

My first meal after I decided to eat was after my decision to be mindful. Mindful of textures and aware of the sunlight on the leaves. I did not eat mindlessly. I ate mindfully and enjoyed and savored every single bite of food. I had never really enjoyed food. Now I LOVE food! And I love that I’m able to love food. Mindfulness has been an opening to healing for me in many ways. It brought me to photography which has truly saved my life!

Just like a smell will trigger PTSD, a comment about how I look will make me immediately make me want to control how I look. People think they are paying me a compliment when really they are bringing back my focus on my physical me. Innocent on their part but what a conflict in my head. “What makes me more abusable? Being thin? Gaining weight? What makes me safer?” Dialogue. Unhealthy dialogue. At least I am aware of it now.

Abuse has LONG lasting affects. I don’t use them as an excuse when I write this but more as an educational tool for someone going through it or someone who knows someone going through it. After abuse the wires get crossed in what survival mode really means. Our mind thinks to survive we must do…Fill in the blank, ,because at one time that served us and maybe saved us. Like freezing saved me during abuse but it does not save me when a smell triggers me and yet my brain doesn’t quite get that. In this country women are so sexualized from such an early age and bombarded with commercials and social pressure that it is a miracle not every female struggles with eating disorders even if they were not abused like I was. I’m thinking more women struggle with it than anyone knows because most of what I speak about has such a stigma attached that it is kept a secret.

That’s why I wrote about it in my original blog Not My Secret because only in speaking the truth can we free ourselves from the chains others and society and abuse have put on us. Stigmas and judgment about eating disorders, ptsd, anxiety, mental illnesses, sexual assault. I will keep talking about it because it needs to be talked about. My old blog was focused on releasing secrets. My new blog is more focused on how I am healing while keeping an honest transparent voice all along the way. In silence, we are trapped. Use your voice and you will find the chains will slip off easier than you think and you will nolonger be tied to the trauma as firmly as you were TAUGHT. You were taught to be silent. SPEAK and start the journey to freedom.

The dark place Tw

There is a dark place. A dark space. It is where I go when something triggers a memory of the abuse I had to live through. I don’t want to go there. I don’t want to ever feel those feelings again. The dark place lies in a frozen state between now and long ago. It used to be a place of survival. I froze to survive. It first happened when I was a child being molested by an old man, and then his friend, and then his friend. It was a space of deep fear and survival instincts. A place of pain and loss. After a childhood of this place, I never thought I would experience it again until a number of years ago when I was sexually assaulted as an adult.
As a child I was so conditioned and programmed, and it happened so regularly that my brain and body knew how to shut down. I was on autopilot. I minimized the gravity of what had been done to me because it was all through a child’s eyes. When the same thing happened to me as an adult, every event I had blocked out as a child came flooding back. I thought I knew most of it but it was a mere fraction of the truth of my past. There were many that played a part in the destruction of my childhood and teenage years. It is a story of secrets and lies and abuse by too may to count, all at the cost of me.
As an adult the assault took me back to the place I had created as a child. I believe that is what saved my life. It benefited me at that moment but it is not benefiting me now.

I did not fight. I did not scream. I was frozen. I could not feel my arms or my legs. The sound of his voice was droning in my ears but fading in and out as I focused on things like the door knob and the telephone and the way he was pacing like an animal in a cage. It is a place in the mind that later feels like a weakness and a shameful behavior. It is hard to redefine those times of abuse as “survivor” or “warrior” when it really just was horror that still gives me nightmares every night of my life.
What I learned as a child was to never speak. Stay quiet. Be a good girl. Be still. And that is what I did as an adult which made him furious at first but also, most likely saved me. My head was spinning and I could not hear the words coming out of my mouth but when I did, I was begging. “Please just let me go.”
I do not choose to feel these feelings again but PTSD is a diagnosis that explains why trauma resurfaces sometimes daily.
PTSD is the dark place.
I want to stand up for myself. I want to say what I’m feeling in the moment. I want to be able to walk away (or drive away in my wheelchair) but I go to the dark place.
The smell of certain colognes and aftershaves take me there. Certain songs. Having a man come in my house to fix something that is broken that I don’t know. Not being able to get a smell off me. Dark place.

The baby owl story:
Last week I was out for a walk in my wheelchair and I was told of two baby barred owls in a nest. Being an animal lover and photographer I headed in that direction. I saw one baby in the nest and heard the distinctive cry of the owl. I also heard another cry on the ground. There were other people passing by and stopping and going and asking me questions but they did not really exist at that moment to me. I had to find the baby. There was a hawk that was flying near. The baby was crying. So I got out of my wheelchair and I crawled and crawled until I got the baby and wrapped her in a towel. When I got back in my chair I could not think. I knew I had hurt my hip and I was starting to shake. The mother owl landed at my feet. She looked at me. The baby looked at me. (Barred owl mothers cannot put their babies back into the nest)
I had opened an umbrella to try to keep the hawk away. People were asking me questions and I was ignoring them. My brain kept saying “ you have to save the baby, you have to save the baby” over and over again. ( I later apologized to those people and said I was really in another world at the moment). The mother was calling and I kept thinking what she must feeling not being able to save her baby and wanting to. I also kept thinking why did my mother or father or brother ever save me! They pretended like nothing ever happened to me. Anyway…I called the wild life rehab and everyone I knew. It took a few hours to get to someone and have them come meet me. I started to cry. I rocked the baby bird. I sang to the baby bird Amazing Grace and she fell asleep. Then I cried more. No one ever saved me. No one ever held me. No one ever sang to me and told me it would be ok as a child when I had clearly fallen out of the nest and into a den of vicious men. I went to the dark place.
When the rehabber got there she took the baby and I knew the baby would be in perfect hands. She was. The baby was fed and gained weight and was returned to the nest a few days later after a bad storm had passed.
I don’t remember getting all the way home. I just remember that I poured lemon juice all over my body, then alcohol, and I scrubbed my skin raw like I did as a child to try and remove the pain. I did not sleep for 3 nights. Thinking about the mother wondering where her baby was felt like it was destroying me. The mother owl, that night, flew with me as I went home. She landed in trees next to me.
When the owl was put back in the nest I went down to see her. I took photographs and planned to monitor the baby who I had named Melody until she was stronger, incase the rehabber had to come and get her again. Melody and her sibling who I named Lyric immediately snuggled and preened. I went down daily and for a few days Melody looked very weak. I lay in bed thinking would she have to be taken away from her mother forever? Would that be for the best? I mean should she starve or be saved and never see her family again? Would she be able to ever learn to hunt if she had to go back to rehab? She had to be safe and that was all that mattered and I declared I would make sure that she was. I prayed round the clock. I’ve always been this way about animals. Connected on a deep level. But this was different.
Due to the place that Melody fell from the tree, many neighbors gathered to look at the owls every day. They are beautiful. I went down every day and wrote extensive notes on Melody’s movements and if she was flapping her wings, all to note for the rehabber if she was getting stronger.
I realized soon after all of this that I had refractured the same hip that I fractured twice last year. Due to the bone disease and muscle disease I always know it is a possibility. This makes me feel weak. Feeling weak takes me to the dark place.
I had felt these feelings before this disease but I could always go for a run, punch a punching bag, or lift weights to ward them off. In place of that, since these diseases, I have taken up photography instead. It brings me joy.
My therapist and psychiatrist ( there is no shame in admitting I get help for PTSD even if someone later uses it against me by calling me crazy, and they have, I get treatment for the trauma) told me to try and rewire my brain and fill it so full of good that it will overpower the bad. So I take a thousand photos a day to create and experience 1000 good moments. Most of the time it works and will outdo the PTSD moments. But not this week. A few little angels were placed before me not even knowing how important they were in grounding me in the now.
This week a few women have taken it upon themselves to treat me poorly. That is putting it lightly. They have gossiped about me. They use the premise of just being “concerned” about my safety when telling me to GO HOME when I am photographing the owl baby. There will be 20 people but I am the only one told to lower my voice, turn my wheelchair light off as it is disruptive (as if all the car lights and streetlights are not worse), and it goes on and on. Wheelchairs should not be in the road…even though we have no sidewalks and people bike and push strollers daily! And I have used this chair for 14 years! All of a sudden I’m put under a microscope on where I park, how I close the gate, etc and etc. I’m yelled at from doorways to “make sure you are being careful” in the MOST NOT actually care about me tone you could imagine. More bullying tactics that catch me off guard and startle me.
It’s not the women that upset me though. It’s ME that upsets me. They are pathetic, cowardly, passive aggressive, narcissistic bitches. I know that. But when they speak down to me or berate or embarrass me, I shut down. I cannot speak. I cannot say what I want to say. I am even nice. It’s sickening.
When I was locked in the garage with the man who was sexually assaulting me with his gun leaning against the door, I was nice.
These women are not that man.
These women are not the men who raped me as a young girl.
But they make me go back to the dark place.
They trigger PTSD.

Here I am with a bone disease, a muscle disease, a fractured hip, just trying to watch out for the baby I saved and somehow I am a target.

I get that. I have been a target before. The wheelchair puts me as a target. Being a little girl left alone with men, with parents who did not watch over me, made me a target. Being abused as a child and groomed to be silent makes me a target.

But I am kind. I am generous. I am loving. I don’t deserve to be a target but I cannot control other people. I also cannot control the PTSD. My nature is to love and that is why I helped with wildlife rehab for 10 years and was a hospice chaplain.

Out of all of the beauty I have experienced this week, the birds that I tell you God put there in front of me because He knew I was in need. Birds I have been looking for for years just appeared in front of me. It has been an incredible week of neighbors reaching out and being kind and understanding, being helpful and accommodating. Yet all it takes is one person to freeze my body and take me back to when I was 11 years old feeling the weight of a 60 year old man on my back and listening to the clock ticking not being able to breathe.

This week has been one of the darkest in a long time. Everyone thought saving that baby bird must have been wonderful. It was excruciating. Holding her as she was crying was excruciating. It reminded me of how alone PTSD makes me. It reminded me of how many times I was never saved. It reminded me that my worth to so many people who have abused me, to include my own parents, is nothing. I did not just have one trauma. I had thousands. And no one did anything. No one’s lives changed. But mine. So holding that baby owl was like holding me. I was holding myself. Giving that baby away was like giving away my own safety. I felt alone again in the dark place of PTSD.

I decided about five years ago to speak my truth and only my truth. I cannot always do it in the moment but I can do it after the fact. That is what I am doing now. I am being transparent and honest. Many nights this week I went to bed hoping that I would never woke up again. My therapist is on speed dial. Then I wake up and start fresh. I look for beauty in nature, in people, in wildlife and I hope that the good will outweigh the bad.

I am
In a dark place
Hoping for light
Knowing when I go to sleep the nightmares will come
Like they always do.
I am fighting battles that only someone who has gone through it could possibly understand. Rape victims and trauma survivors are often very lonely…because of the dark place.

I am not ashamed to speak of what was done to me.

There is a stigma against mental illness, PTSD, anxiety, violence against women, and I will stand up to it all by speaking my truth..when I can. I hope to educate others about what we go through so that maybe you can bring a little bit of light to the dark place.

The rehabber took this photo of Melody and me before she took Melody to be cared for.
Melody and Lyric back in the nest
Melody
Two days ago, mama watching as Melody was learning to leave the nest

My own narrative

Trigger warning

A few days ago a friend of my husband mentioned an author that talked about vulnerability and courage and shame. She has a show on netflix now called The Call to Courage. It stirred up so many thoughts in me that have not stopped for days.

When my husband’s friend mentioned the word shame I was very quick to say that I had never felt it. Upon great reflection I think during Yom Kippur I have realized that I felt shame on many levels. Mostly I felt shame as a young girl which is why the truth could not escape from my lips for a very long time. Equally important was the shame that I felt others felt about me. Since no one wanted me to speak the truth, or speak the truth themselves I believe it left me in a constant cycle of shame. Maybe I was not good enough for them to accept or validate. Maybe a LOT of things but shame was a big one.

I cannot write the narrative that they tell others about me or that they even believe themselves. I have to some how pull myself out of even the concern of what their narrative of my life even is. I can tell you it is not my truth. It is only the truth they perceived and/or wanted to believe OR maybe it is just all steeped in denial and their own shame. I cannot speak for them I can only speak for how it has all made me feel. I KNOW how much I need to escape from the grips of their stories now more than ever.

I have never felt pretty enough, good enough, worthy enough. I like the person that I am more than I like most people because I know my own heart and it’s ability to care. I like me yet I don’t feel worthy. Worthy of what? I don’t know. Just worthy.

Even when I was doing admirable things like helping animals in wildlife rehab or helping the elderly in hospice, I still did not feel…good enough. Good enough for what? I don’t know.

For one I am not worthy of my own parents. They didn’t feel so as they so easily left.

It’s interesting because I have taken part in a genetic study where a brilliant geneticist has made it his mission to find the mutation causing my muscle disease. To do that I had to revisit the idea of my father’s mere existence on this planet. It’s easier to pretend they don’t exist than to accept that they do but don’t choose me. He was asked to donate a DNA sample for me, the daughter that does not exist. He agreed. He wants to help me he said. He hates to see me deteriorating he said. But he has not seen me in three years. I am worthy of spitting in a cup for DNA but I am worthy of nothing else. It hurts me. (This came to me second hand as I have not spoken to him)

In this week of reflecting on shame in its many forms, I keep flashing back to this photograph that was given to me when I was 15 years old by my boyfriend. It was right before my 16th birthday and he had written on the back of it but I never read it. My mother looked at the photo and turned it over. It was a photo of him standing next to his BMW. On the back he had written, “ From the two things that love to ride you most,” meaning he and his BMW. My mother was unaware I had been having sex at 15 years old and was mortified and I was sent almost immediately to a GYN to get on birthcontrol. I was so ashamed. I was ashamed she knew. I was ashamed that he had had sex with me at all. How ironic that I had not felt shame before. His is my fist recollection of feeling shame. Not when I had been molested by men for the 5 years prior.

I had met my boyfriend on a blind date when I was 15 to go to his homecoming dance an hour and a half away. I always wondered why my mom let me go on this blind date so young. But I also wondered why she let me go to the mans house who molested me all those years before. These things I will never understand because I don’t believe on my mother’s part they were intentional but in my own heart I just wanted to feel safe again. I had hoped it would come from her or my father. It came from fleeting moments of abusers who were mascaraing as people who loved me. Well back to my story…The night my boyfriend had sex with me I think was the first time I truly felt the dissociation that is PTSD. This was no romantic story. This was not a gentle loving experience. But he was my first love. I had no idea what he was doing was not only without my consent but that it would lead me down a path of shame that I would feel for years. It was in some back room. Ramming and ramming and ramming and blood everywhere and him leaving and me trying to hide EVERYTHING. From 11 until many years after I knew love as pain and sex and dominance over me. I find it sad now that I was so in love with…well…a rapist. I was in love with many men who turned out to be rapists. Once a child has been through sexual trauma at an early age their is a veil over what love even is. I did not know love until my husband when I was 24 years old.

So when my mother read the back of that photo she felt ashamed of me but had no idea the shame I felt for myself. She had no idea how horribly the GYN would treat me after finding out I had sexually transmitted disease because NO ONE at the time knew I had been being sexually abused for years and years prior. For some reason I felt that since my hymen was never fully broken that what the men had done to me was not really rape. It was. I guess I just had a super strong hymen! Well that hymen misled me greatly. They were actually more gentle with me than the boy I had fallen in love with at 15 years. Gentle rapists and child molesters. That’s what I thought. But there was nothing really gentle about them. They had just groomed me for so long and I was so confused that I did not know what was good, bad, right, or wrong. I knew that it all felt terrifying. I knew that it all made me feel sick. But I had no safety net or safe space to speak my truth and I had no way of knowing how to get away from ALL of these men who were around every corner of the waterskiing world and after. Everywhere! Men just waiting! Like they somehow knew ” oh yep, she’s been raped before, yep, lets take her!” That is what it felt like. Hmm. I guess that is why sleeping in my car at my Sea world job felt so safe. There were NO MEN.

I was thought of as an introvert, shy, soft spoken. That made me “sweet.” I stayed traumatized and quiet most of my life and those child molesters and rapists upped their game as I got older knowing there were no limits on what they could do. I got passed around from person to person and my value and self worth lowered and lowered and lowered.

By the time I decided to speak my truth I spoke it loudly. And I became not “sweet” anymore. I became angry. Apparently having a voice gave me a new label and changed my personality completely. That is not true. I just…became. Since I started telling my story I left all of the shame behind. In my growth and age I learned that these things done to me were not my shame. I had a blog called: Not my shame…no my secret. I stopped writing that blog a year ago after 3 years of bearing (no clue how to properly spell this word so be easy on me!) my soul to the world. I needed more time to reflect. I needed quiet time to grow more about myself. It is hard to know one’s true self when that self has been layered with lies by others and at the hands of others.

During Yom Kippur I realized that I had every right to be angry but that stooping to the level of those who have hurt me IN that anger was wrong. I have said some unnecessary things that came from emotions and even though they were factual they were also hurtful and mean. That is not me. I allowed that to come from me out of pure fury towards my family who has denied me and shamed me. So as I continue to tell my story, my truth, and facts about my life, I will be aware to not be malicious in intent. I cannot make myself the person they believe me to be.

While watching Brene Brown on Netflix she spoke about who will step into the arena with you. Who will be courageous and vulnerable and speak the truth. Those who cannot will throw criticism at you and I have felt that criticism. I am brave. I am truthful. I have allowed myself to be vulnerable as I have spoken about the abuse I endured in great detail. That detail, those details, made my family ashamed of me. I was even told that no one wanted to hear the details. That would not be true for the 40,000 women and men who contacted me over the 3 year period of writing my original blog. YET a few family members seem to have more power over my own self worth than those 40,000 people. How astounding!

I was molested and raped more times than I can say between the ages of 11 and 24. That was just my life. I had succumbed to it. So many men. So many times. There has not been justice for me. There has been rejection, abandonment and loss. There have been nightmares, triggers, PTSD moments, suicidal moments and ongoing therapy. I cannot change certain things. I cannot change what happened. I cannot change how anyone reacted to it. I cannot change my family. I’ve spent too much time hoping I could and not enough time accepting I cannot.

My father spoke with the geneticist of me fondly. Fondly. That’s his narrative of me. He remembers me fondly as a girl who was sick as a child and as an adult who is suffering with a debilitating muscle disease that he can now help with by spitting in a cup.

I rarely share how much pain I am in with my own husband and I have never shared the pain I am in with my father. My father has no idea how much I suffer. He does not know me. He has created little parts of his nostalgic feelings of me into a relationship that does not exist and where his love is actually real. What he has been in my life is not love. He lives in a narrative : Where he never shook the hand of the man who molested me. Where he never made me second to everything else in his life. Where he spent no time with me and never knew anything about me or what I was going through. His narrative is not true but it is one he created. I am sure my mother and the rest of the people that have left have created there’s too. They think they know how I feel, what I’ve been through and what I am going through. If nothing else I know they view me as weak and someone to be ashamed of. That is not what I THINK their story is of me that is what I know to be true. Because if they were proud of the mother, wife, daughter, woman that I am…they would be here. They are not. I roared. They ran. I am still as equally as sweet as I ever was. I am just no longer silent. But see how much I have gone on about them. Well it is hard not to when someone or a group of people affects you so profoundly in a negative way.

Their narrative should not matter. For some reason it does. So when I told my husband’s friend that I felt no shame, that was not true. I FEEL the shame others are putting on me. My body REMEMBERS the shame of learning I had sexually transmitted diseases because of molestation and rape. My body remembers my mother’s face looking at that photo and her shock at her daughter having sex yet having no idea the same daughter had been molested for countless years prior. My mind remembers the smells, the hands, the pain, the suffering, the desperation, the loneliness. PTSD will not allow me to forget. It seems to have tightened its grip on me firmly. I do not feel shame about what was done TO me by the abusers. The shame is not about them.

So while I capture beautiful moments in nature as a coping skill, it is to practice my mindfulness and to balance out the trauma with something wonderful. It does not mean the trauma is not there. But there are only so many things I can control. Behind the lens of a camera I feel no shame in anything. There is no past or future and just that one beautiful moment.

Learning how to not care about the narratives others have created about me is another story. I have to overcome this. I have to eventually not care because I know none of it is true. I can’t make others proud of me or make me feel worthy. I can’t make my family anything other than what they are and what they were. As I focus on me and my own healing I would say the hardest part is facing, accepting, moving forward, from my family and how they have made me feel.

I am living the truth. It’s all I can do. I wish I had the luxury of living in a lie or denial. I don’t. If nothing else at LEAST I can say I am authentically me. May other authentic people step into the arena with me. It has become quite lonely in here…

The horse that God sent

Laura was my best friend in elementary school. Best friend in the world. I would go to her house for sleep overs and we would laugh, ride horses, run from her bull, laugh some more. Laura was authentic. There was no hidden agenda ever. She was real in all ways. She was the only real thing in my life during some of the worst years of my life. In a world surrounding me with secrets, abuse, and lies…I had the unconditional love of my friend Laura. There was always something about the way she looked directly into my eyes…

We lost touch for years after highschool but reconnected after she was diagnosed with cancer. No time had passed. We were in the third grade again and it was the next day but 30 years later. I had one year with Laura. She had “Laura’s warriors” which was a huge group of supporters. We talked about this. I had a muscle disease and had a few people. She had cancer and had over 300 people. Cancer affects everyone in some way. We all know someone who knew someone, or have a friend or loved one who has fought the battle. Some have gone into remission and some have gone to be with God. Laura had hundreds of people taking care of her. She chose to take care of me. She had a go fund me for all of the alternative treatments she was trying since the chemo did not work. She used some of that money to pay for ME to have alternative treatments for this disease I have. I’ve NEVER in all of my life known ANYONE as selfless as Laura. This is not to diminish those who have supported me throughout the disease I have, but Laura… She would have chemo and then come to my house and make juice for me or dinner. She would take time away from her own family to come and hold me in her arms and pray for me. No one, other than my husband, has ever held me like she did. She understood that having this muscle disease took away so much from me. She understood how lonely it was and isolating it was. We told each other all of our secrets. I told her of some of the abuse I endured in my lifetime that I have never told anyone else. I knew she would not judge me but would instead love me even more. She really hated what men had done to me. She wanted to fight for me. That girl was a fighter. I spoke to her the day before she passed away and she told me that she was fine and she loved me. She never gave up.

Cancer touches all of us. It took away my best friend. I watched her in pain. I watched her suffer. I loved her with all of my heart.

The last few weeks have been very difficult for me. I have been suffering. I have been haunted by all of the men who have harmed me. Haunted. Ptsd flashback. Nightmares. Billboard signs with their photos reminding me around every corner that I will never be allowed to forget. I have also had severe muscle pain.

Let me say that I moved forward from the abuse. The abuse is still with me but I have moved constantly forward. PTSD keeps the abuse there but I chose to move forward anyway.

I MOVED FORWARD. I go out every day with this disease and I fight it just like Laura fought cancer. I look for the beautiful things that God has placed before me and I appreciate every single moment. I didn’t choose to be abused. I did not choose to get a muscle disease. Laura didn’t choose to have cancer. It took her from me and her children and family. I am so glad as I look back that in her last year of life she had that team. Everyone should have a team! Today I saw a woman wearing a t-shirt about team so and so fighting for cancer. I don’t have a team.

I don’t have a team because the society we live in does not give abuse victims a team. Muscle disease sufferers used to at least get a DAY with the MDA and Jerry Lewis but that was taken away. Mental illness does not get a team. We sure do need one though. We are urged and encouraged to keep silent and let the stigma continue.

Nobody tells someone fighting cancer to just let it go, move on, etc. I know not everyone has a team fighting for them that has cancer. I know many people keep their fight with cancer a secret. It may seem like I am trying to make a comparison between cancer and other diseases but I am just expressing what I have witnessed. Their is a society shame put on victims of abuse and mental illness. There is shame in admitting vulnerability with muscle diseases and that it may trigger other PTSD emotions.

There is no shame in saying you have cancer. And why would there be. There shouldn’t be. I guess that is my point. You didn’t ask for cancer so why would anyone want you to be silent about it? They wouldn’t. Yet I am supposed to be silent along with thousands of others about our daily lives after abuse. Whether it be domestic violence, rape, any kind of sexual assault or childhood abuse, silence is the what people want.

Who decided to shame victims?

Who decided to enable abusers?

What is this culture that we live in?

This culture is shameful.

Laura and I talked about these issues. She knew that our stories were not a competition. She was fighting cancer. I was fighting a muscle disease. She happened to have a lot of support. I did not. Not for the disease, not for the PTSD, not for the abuse, not for the anxiety. I was for the most part alone. No calendars were set up with meal deliveries for me. No car rides to appointments were scheduled. Most of what I was going through no one was there to listen and she saw this and stepped up even as she herself was dying. She is and always will be my hero. She did what healthy able bodied people can’t but should.

What people don’t understand is that everyone you know has either been abused, knows someone who has been abused, or has loved someone who has been abused. Just as cancer has touched so many, abuse has as well.

NO ONE SHOULD FIGHT ALONE.

My story is not unique. Almost every woman I know has been abused or knows someone who has. In my years as a chaplain for hospice almost every person I met with had a story of abuse. In working in wild life rehab there was animal abuse. No one talks about it though. No one listens.

We have created an environment where it is not ok to talk about our emotions, our fears, our anger, or our memories. My memories include heinous abuse. You don’t erase a memory good or bad. It is part of my story. I cannot control when these memories surface nor can any other trauma victim but we are encouraged to keep it silent.

I told Laura everything. I sat with her every day of her chemo treatments and we talked. About everything good and bad. No secrets. In her last week of LIFE she sat on my couch with my head buried in her chest, me sobbing as she prayed and prayed and prayed that God would heal me from the pain inflicted by men and by the aftermath and by this muscle disease. Like I said…not many people exist like Laura.

I didn’t ask her to. I didn’t want to take time away from her family. But I was her family in her heart. My husband drove me to be with her during chemotherapy and sat in the waiting room for hours while I sat with her. She then sat with me. We loved each other wholeheartedly and unconditionally. Our relationship remained true and authentic to this day. Even as the years have passed since she has been gone I have loved her the same.

I love that she had 300 people and more that were Laura’s warriors. I love that she felt loved and cared for. It doesn’t take that many people though and in fact with me it just took one person and that was Laura. She was really all I needed to feel like I mattered, my life mattered, I was valued, and she was my team, my warrior.

My husband has always been that person for me and I know that. Women though often need other women who really “get” us.

I miss Laura every day. I miss what she stood for. The authentic, purity, non-agenda, fun-loving, tilt your head back and laugh with no apologies person, and put someone before yourself person.

She knew the culture I was going up against in my refusal of being kept silence in the abuse. She knew the fight against the stigma of PTSD and anxiety. She knew how alone I was in this fearful loss of self with this muscle disease.

Why doesn’t anyone else know?

Was there only one Laura?

Today I went to the park with my husband and fought back tears of pain from the disease and pain from the past that slapped me in the face by means of a billboard with a man’s face plastered on it that nearly destroyed me.

I saw the wild horses in the distance and do what I always do which is feel elated first. Then protective second. I want to get to them and make sure no one goes near them and no one tries to take selfies with them and keep them respected as the wild creatures that they are.

My husband steered my scooter for me and I sat back in my chair and just watched them. The wind blew and I smelled them. It is my favorite smell. They were across the water and I took many photographs as we got closer on the path. I have a zoom lens and never intentionally go near them. About 4 people walked past and I told them to please not go up to the horses if they get closer as they are wild…like I always do. After everyone passed us I put my camera down and watched. I watched them twitch their tails and snort and breathe. I saw each greet the other and nudge the other and nibble on the other’s back. I sat perfectly still and quiet as one of the pregnant mares walked from across the prairie and all the way up to about 2 feet from me. She ate grass and looked at me the entire time. She would step one step closer and look up and graze some more. My husband was behind me. That horse looked me in the eyes and I watched the baby in her belly moving all around. I smelled her and listened to her breathing. It was like Laura was looking at me again. Knowing everything that I felt and experienced. I think that horse was thanking me for always looking out for them and keeping the other people away. I feel in my heart, after these last few weeks, God sent that horse over to me to remind me that I am NOT alone. It may be a horse looking at me in the eyes but I was not alone. I have watched these horses for years. They do not walk up to people. They run from people. This horse walked right up to me and I cried. I cried because I was not thinking about anything but how blessed I felt in that moment. How that horse made me feel like I mattered. A HORSE! The billboard and the abusers and the diseases didn’t matter. It was all gone in that moment. It was just that horse and me. I slowly backed up my scooter because I did not want her to get used to humans like me because frankly I don’t think there are a lot of people that are like me. Not many that I have met. Some. Not many. I didn’t want to back away but out of respect for her being wild, I did.

That horse has a herd. She has her own team that supports her and fights for her and loves her. I have watched them and I know.

God sent me a little reminder through that horse looking at me just like Laura used to that even if we don’t have 300 warriors we are not alone. A horse made me not feel alone.

It took a horse because so many humans are living in this culture that they are enabling and accepting that keeps trauma victims silent.

I have intermingled being a trauma victim with having a muscle disease because being a victim of a crime is not the ONLY thing that we fight. I’ve got a list of things I am fighting…doctors, nightmares, lyme disease, ptsd, anxiety, depression, loneliness, etc. I can’t have a team because no one wants to stand up and fight for these issues. And that is so very sad. But for tonight at least I’m not going to focus on what’s sad. I’m going to look at this horse, think of Laura, and be thankful of the little blessings in my life.

My memories are valid even if they “taint” yours.

Hypothetical: We are at the park. You are out having a nice run. I am taking photographs. A man comes up to me and starts cursing at me for photographing a bird for no particular reason. I get very upset over what has happened and come and find you. You just had a great run. You are feeling super. You discount my encounter because you don’t want it to ruin your nice time. I’m not trying to ruin your nice time I am just relaying what happened to me at the same time at the park.

We get home. You don’t want to talk about what happened to me or if I am still upset and in fact ignore that I am upset. You even say you don’t want me to ruin your moment of happiness by tainting it with my moment of sadness. You refuse to accept that I was upset. You continue to talk about your run and how it was the greatest run of your life and how you’ll never forget your great run at the park.

Our memories are our own. But they do involve other people and other situations that can be going on simultaneously. If you pretend that my memory does not exist because it ruins your memory then you are conditional. My memory exists as part of me. And to be unconditional that memory needs to be validated and heard. It does not take away from your good memory. It very simply validates that my memory at the same time you had your memory we were not experiencing the same feelings.

This is put in simplistic term for those who have no idea how invalidating it can be to disregard someone’s trauma. This fake experience was not a trauma. But still deserved to be heard. In place of that put trauma. Do you know how painful it is to have someone tell you they don’t want their memories somehow corrupted with the truth of what was simultaneously going on with you that included sheer horror?

Keep your memories. But mine exist too. Loving me means accepting that.