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….

Wild horses

I did not know they would be out there. I decided to go on a little adventure and trek out way past where I normally go in my wheelchair. It was a gravel path that was incredibly painful to go on and I kept hoping that the pain that it would cause my body would somehow be rewarded once I got around the corner, and there they were. Not only were they in the perfect lighting but also in the yellow wildflowers. No one was out there but me. 3 people passed by at one point but for 45 minutes I was there alone with them. The wandered closer than I’d ever seen them, so close, I kept backing up. I took over 300 photos and then I stopped and just watched them. I love to watch this family of wild horses. They wander over thousand of acres at Payne’s prairie and it is a gift and a blessing to be able to see them out and about near humans. Usually they can be seen at the observation stairs that are 6 flights high that allow you to look out over the thousands of acres. I’ve only done that once and my husband had to carry me up and the horses were way out there with bison which was breathtaking but not was close and personal as being eye to eye with them like I was here. They were eating the yellow flowers and grazing and nuzzling with each other. Two of the mares are pregnant. Normally most of my photographs are grainy or dull or not enough lighting and I have no idea how to fix that and don’t want to use filters which to me, alter the realness. So I was thrilled they were in THIS lighting because it makes it look like I’m just a great photographer but really it’s all in the sun and the subject!

It was a beautiful day and I was able to stay mindful and present and joy every minute of it.

To take the medicine or not

There is a new treatment for Lyme disease. There is always a new treatment for Lyme disease and I can promise you, you will not list one or come up with one that I have not tried. I have tried them ALL! And they have all been touted the cure all and they have not cured anything.

The newest medicine is listed in the article below.

https://www.lymedisease.org/disulfiram-kinderlehrer/?fbclid=IwAR2QGqxOcqYWYWFqLt182JCf_oyzqUYhuHRYlNBD7JpCDl0X1Aqq_eda0ZA

Disulfiram.

To try it or not. I”m meeting with my doctor on Friday to discuss it. Meanwhile I’m still processing the toxic heavy metals that are in my system that came up on my blood work. Meanwhile I’m still processing the toxic levels of other chemicals that have come up in my system. Each with treatments that I have yet to be able to tolerate but am willing to try again.

I have seizures.

I have a muscle disease confirmed by a muscle biopsy 13 or so years ago. I have a bone disease and currently have a hip fracture.

I have PTSD.

I know we are not defined by our diagnoses or 10 of them but they do come with some definitions linked to me. I am in chronic pain. I am unable to sleep. I am …I just am.

Do I take the med with ALL of it’s side affects in hopes of knocking off one thing from my list? I’ll be left with disintegrating bones and muscles with no cure BUT maybe it could alleviate the seizures? Or other symptoms?

Or is it just the newest hype. Newest fad. Newest hope that will bring along with it more suffering when I’m trying with every breath left in my body to stay positive.

I just don’t know.

I’m open to comments and thoughts as I am truly at a loss at this point in my life.

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.

Meet Marigold

I have listened to Marigold do her nightly screaming rounds for months and infact she screams quite frequently outside my bedroom window. She often startles me by jumping OUT OF THE BLUE onto my deck outside my window, looks at me, then runs off. Today was my first actual introduction to her though. I was out photographing the owls Johnson and Chrysanthemum. Johnson was scared away and missing for days after july 4th and he finally came back only for us to discover that his eye was not looking well again. He is underweight and has been struggling. I’ve been photographing him for months now and he was just perking up. Then he was gone. A few days ago I photographed him and his eye was not looking well so I, being how I am, barely slept worrying that he would not be ok. But it was a wasted time of worry! We found him tonight out attempting to hunt with both his mother and father and sister with him. He was fed twice which took away all of my worries. Knowing his parents are by his side and still feeding him just makes my soul say ahhhhhh okkkkkk. While out witnessing all of these beautiful moments my husband pointed out the fox! I’d been trying to get a photo of her for FOREVER! Finally there she was. I thought she would run away but I drove my scooter up slowly and just close enough to use my zoom lens to try and get a shot. As soon as I did she did a big stretch and flopped down on the ground and rolled over. I immediately loved her!!! Isn’t it funny how an animal that was startling me daily and getting a bit on my nerves won my heart over in two moments. Just shows that you cannot judge someone from a few meetings and chance encounters. Sometimes it takes a little longer to see their heart!