God complex

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image1995

In 1981 I was 9 years old. I had my first experience with symptoms of my muscle disease. I went to a specialist. This Doctor forgot that he was not God. He was, fairly certain, that he was. His ego was so big that it hindered his ability to live up to the oath he took. Because of him, it took 30 more years to get a diagnosis. But not before he did a little jab, a little dig, a little harm, breaking his “do no harm” before he sent me on my way. He wrote a letter to my pediatrician. I still have this copy at the top. This letter said that he believed my pain was simply psychological. He said that I should continue sports and not be allowed to go to the clinic. What he did should be labeled as abuse. He made a little girl with a muscle disease not be allowed to go to the clinic. And why? Because he just did not know what was wrong with me. He didn’t know so it HAD to be psychological. Because if “God” didn’t know then there obviously was nothing REALLY wrong. How many little girls and little boys did he damage along the way in his job? I remember him well. He told me that he knew I could jump I was just acting like I couldn’t. He made me jump. I was 9. So I jumped. That proved him right and the child wrong. Ha Ha. He won! But children like me did what you told them to. I remember the pain it caused me to jump. He furthered in his letter that I was tender upon palpation but he did not believe that. Instead of saying he just did not know, he said it was not real.

I was unable to get out of bed for an indeterminate amount of time. That period in my life is a blur. I do remember having a home bound teacher. This “Doctor” should not have been “practicing” medicine. Because of him, after I eventually went into remission I did do sports. Because I did sports I did irreversable damage to my muscles. All he had to say was “I just don’t know.”

In 1995 I had a relapse back into symptoms and went to many doctors. As I looked through my chart I found another letter. This one is the second one above.  As I started having painful muscles I also became extremely dizzy. We know now this was the time that I contracted Lyme disease, but that Doctor felt it necessary to put in my chart that it was “psychosomatic”. He just didn’t know. And ofcourse he was “God” too and so it was not possible, not fathomable that the all mighty doctor did not know. So he said it was all in my head. He was wrong. Had he continued looking, not slapped on a label of his own ignorance, then my joints would not have the pain they have from Lyme disease right now.

I would not mind the ignorance. I would not mind the defeat of just not finding an answer, if it were not tainted by an egotistical man’s words. Those words discredit my pain. Those words invalidate everything that my body is telling me means something. Those words should be banned from an ego man’s mouth. But they aren’t. They are forever put in my medical chart.

I am  headed back to the Mayo clinic in a few weeks. Those words in my chart haunt me. Fortunately, if you read a few years forward you will see my positive lyme disease results, and my positive muscle biopsy results. The results found by a competent, compassionate phenomenal female doctor that has never stopped listening. It makes me wonder, does anyone ever read a chart, see psychosomatic, read further to the diagnosis, and want to call that original doctor up and tell him what a fucking asshole he is?

I called one of the fucking assholes. 25 or so years later he was still in practice. I sent him my biopsy results. I spoke with him on the phone. He was still in pediatrics. I told him, kindly, that my purpose for calling was for him to reread the original symptoms I had, the original letter he wrote denying those sympotms, and the final result after the biopsy 25 years later. I wanted him to never make that mistake again. I thougtht I would feel better. I thought I would put that seed of thought so maybe he would not dismiss and disregard a child again. In his voice I thought I still heard “God” though. My only hope is that the REAL God could somehow tap at his unconsious being and help him to undetstand the gravity of the information that I had told him. I can only pray that is so for the sake of other children.

To be dismissed. To be looked down upon. To be shrugged off. It is demeaning. It is dehumanizing. If you dehumanize a child she or he is more likely to believe that no one will listen, no one will understand, and she or he will start their life bearing secrets. These doctors molded my mind. They put in my impressionable mind that no one believed me. In the years to come of abuse others folowed suit. But they were not Doctors. Doctors have a power to save someone. They should not also have the power to destroy someone’s spirt.

Life is hard enough without having a doctor dismiss us as if we are just another number to check or another box to mark or another spirit to squash. I can tell you had just one of those doctors back in 1981 listened and tried, they would have found out that I had a muscle disease. They also would have found out I was being abused. AND furthermore if they thought it was “all in my head” they had an obligation, a duty, to figure out what exactly IN my head was creating this illness. But they didn’t want to help me. They didn’t want to figure out I had a muscle disease. They didn’t want to explore other posibilities, and they definitely didnt want to ask about abuse.So they left me not only undiagnosed, unvalidated for the pain in my body, but released back to an abuser that they could have discovered had they only, for one second, not been “God”.

A sweet sweet little memory.

I woke up this morning and I smelled french toast. I snuggled under my covers and felt the comfort of my own bed. Feeling happy that it was Saturday and dad was making french toast and mom was hopefully going to be making cinnamon rolls. I felt content. I could hear the boats out already on the lake and I couldn’t wait until I could dive into the water and just allow myself to be completely carefree deep down in the lake.

But…my husband was at work. All I could hear was my air purifier. I was not back home…I was here! I felt so sad. I wanted to be back at home with my family. Dad used to make french toast or pancakes and always made a little tiny dime size baby one for me slightly singed on the edges like I liked them. We always watched Saturday morning cartoons my brother and I together on the carpet in front of the TV. Back then friends of our parents or ours would  stop by daily unannounced, and that was fine. No one knocked. They just came in and were incorporated into whatever our plans were for the day. When dad was off work he spent all day pulling us skiing behind the boat. Mom made amazing treats for us to eat as we ran through the house. We never got in trouble for getting the floor wet and more often than not were laying around in bathing suits with wet towels on the floor eating snacks. My brother and I shared a room when we were younger. Bunk beds. He was on the top and I was on the bottom. We always talked until we fell asleep. Mom always tucked us in. Our nana, my mom’s mom, lived across the lake from us. We were either at her house or she was at ours. Mom’s friends often came by with their children too. I was surrounded by women who loved me. I felt loved. I felt safe. I felt happy. I woke up each day excited for what it would bring. On Sunday’s we sat on the back pew with nana while our parents sang in the choir. Nana brought mints and always doodled drawings or played little games with us if we were getting fidgety. Then we went out for sunday lunch at one of the two restaurants our small town had just to get home and jump back in the water.

I saw on facebook this morning that some of my mother’s family had gone to Maine, to I believe lay my great uncle to rest. It reminded me of our trip to Maine when I was a little girl to see the family homestead. It reminded me of our trips to the North Carolina blue ridge mountains in the summers. I can remember the temperature of the water in Maine and the smell of the cabin North Carolina. Our family was perfect! Out of a book perfect. On paper and in real life perfect. Hide and seek, sprinklers, s’mores, campfires, fireflies, sandcastles, perfect. Afternoon trips to the beach riding the waves, perfect. Singing in the car, perfect. The family everyone wished they had, perfect.

Such sweet sweet little memories. Moments encapsulated in my mind that I can pull up and savor. A time where waking up and smelling pancakes meant everything. And that everything was innocence and joy and freedom and safety.

Until one day….It wasn’t anymore.

Narcissists.

When you feel like you just aren’t good enough, the problem is not with you, it is with the person making you feel that way. The other person becomes accustomed to criticizing you, you continue to either ignore it or defend it, and the cycle continues. When this is started at a young age it is so often considered the norm. You will find yourself making excuses to your friends, ” Oh that is just how she is. She always says things like that.” Somewhere in you,  you know that their behavior is wrong and yet you begin making excuses for it because you don’t want someone to make a big deal out of something you have minimized and learned to brush aside. You allowed it as a child because you knew no better. As you move into adulthood, you start to recognize it but have no idea what to do about it. Then one day you hit 44  and realize to yourself, ” I’m 44 years old and I am STILL being criticized and I am the only one who can stop it!” It is a cycle that HAS to be broken.

My family became accustomed to putting me down.The good always came with the bad. If we were going out to dinner I had to expect to be told that my clothes were wrinkled, I needed more lipstick, and my hair looked bad. If dinner was brought to my house, I had to expect to be told that I really needed to rearrange my living room to make it look more open, and why do I have so many religions things on the wall. If I went to the lake it was inevitable that even though we were going for fun and to swim that someone would point out how pale I had become, how much weight I had lost or gained, and maybe I should lay off the sunscreen to finally get some color. Nitpicking little things. Things that by themselves are just comments but added up over the years are hundreds of cuts. Hundreds of opportunities for me to ask myself, ” Do I really look bad this color? Is my hair really that bad? Do I look ugly with no make up?” When I was 18 and a professional water skiier, tan, weighing 110, with bleach blond hair, no one had a negative thing to say. On the surface I looked like everyone wanted me too. As I got older, and changed my hair, and gained weight, and stayed out of the sun so I didn’t get skin cancer, the comments escalated. It went from surface things, to choices I was making that didn’t match up to theirs. My family got completely out of control trying to control my emotions! Which is ironic really. When they had the chance to control me they could have done truly miraculous things. When I was younger I needed someone to control what was completely out of control after the abuse, but no one did.

For about 15 years I was a vegetarian. I thought I would never live that down. “If you just ate a hamburger you would get some meat on your bones.” And the need to ask me to describe in detail exactly why I didn’t eat meat only to create a conflict where they were right and I was just oversensitive about animals. “Animals don’t know any better if they are in a cage. They are meant to be eaten.” I cannot tell you how many times I was told that. I got to look forward to every thanksgiving being the pit of all the jokes and questions , ” Is Bethany going to eat turkey this year???!!!! What else could she possibly eat, it’s thanksgiving?” Well lets see, about 10 different casseroles on the table are possible options for me. But they didn’t want to hear that. They just wanted to pick pick pick. What I always found funny about the vegetarian aspect is that I never felt the need to tell them NOT to eat meat. I never pushed my feelings or agenda or intention on them. Not ever. I kept thinking that one day they would stop constanting putting me down and being so critical. They never did. When I had my daughter I chose to breastfeed her. After my daughter was a year old I got the comments coming on full force, ” You are STILL nursing her!!!” In the tone that someone would say something like,  ” You are STILL stealing money from your boss???” Those comments went on the entire time I nursed. When would I stop during the day, how many times did she nurse at night, and when did I plan on stopping because she obviously wasn’t getting anything out of it at this age. I could go on for pages on the benefits of nursing but I don’t feel the need to. The point is I could not ever seem to do anything the way they wanted me to and therefore I was wrong and I was criticized. Always. Something negative. Never was I greeted to a ,” You look beautiful today, let’s go have a great time out.” Never told, ” I am proud of the choices you make.” because the only choices that they could be proud of were choices that lines up with what was right for them.

As the years went by I took these criticisms to heart. I started to try and change myself to make them happier and to see if things changed in the relationship. I cut my hair, but it wasn’t short enough. I ironed my clothes, but I should have worn something not linen because it would just wrinkle again and look like pjs. I started wearing make up, and I started getting some compliments. And then I realized. This had nothing to do with me. It had everything to do with them. No matter what I do they will always find some sort of fault in it. I was beating myself up for narcissists. I was allowing my soul to be crushed week by week by narcissists. Don’t let them fool you. A narcissist makes you think they are doing something nice for you but really it is just to tell someone else how wonderful they are, to make themself feel better, or have a chance to slip in a cut to you in some way which makes them feel better. In no way are they doing this nice gesture out of the goodness of their heart and out of pure unadulterated love and unconditional love. And THAT was my realization… that I was surrounded by narcissists. They didn’t care about what I ate. They cared about how it made them look at dinner. They didn’t care if I was nursing my baby. They cared what other people might think of them in relation to my nursing. It was always about them. I was asked to do a prayer. I was used to saying simply Amen due to my years of hospice work. If you were in the habit of using Jesus name then you could very easily interfere and disrupt a connection to a patient in hospice if you said Jesus when they were Jewish, Native American, etc. So I ended my family prayer in simply, Amen. I was called later and asked WHY I left out Jesus in that prayer. They were just so upset that I forgot the big man’s name in my prayer. There was no, ” That was an awesome prayer you did,’ because they were too busy finding fault. Which is why I stopped shaking my head thinking, ” Why can I never do anything right with these people, ” and I started to say, ” Something is seriously wrong with these people that they have to continuously hurt me, that they have to be right by making me always wrong.” I am proud to say I did not let them influence me in any of my child rearing. I nursed my daughter as long as I felt comfortable doing so. I was not forced out of being a vegetarian. I did not let their bullying narcissistic ways change my beliefs.

I lowered my head during my early childhood abuse. Because of my lowered head I allowed myself to be beaten down and crushed by the negative words of those most close to me for most of my life. And because they are narcissists they will always and forever blame me. For everything. They will never take responsibility for the way they made me feel in any situation because all that matters is how anything and everything makes them feel or their perception of how they look.

It was the norm to put me down. Joke about me. Make fun of my choices. I let that happen because it had become the norm ever since I could remember. It became so normal that when my friend picked me up for dinner I waited for her to ask my why I wasn’t wearing lipstick. She never asked. We went through our entire dinner and she said nothing about my looks, my clothes, or even when we got home, my house. Nothing. Shouldn’t THAT be the norm!

It is our job to build up, not to crush down.

And if you see someone crumbling, help pull them back together, don’t kick the last few pieces just to watch them fall. 

My husband I strive to build my daughter up. We don’t focus on her figure. If she asks how these jeans look on her instead of saying,  “well your butt looks kind of big,”(something that I would have been told), we have chosen to say,  “The fit looks perfect, are they comfortable?” And when she asks what length she should cut her hair we ask her to show us 3 or 4 different lengths then ask her what her favorite is and say, ” In every length you’ve ever had your hair cut I have loved it. I don’t think you could pick a wrong length.” When she asks if we think her lips look too small instead of saying, ” well you could make them look bigger with lipstick or lipliner or plumper,” we choose to say,  ” Your lips are perfect for your face and I could not imagine them any other way. We try. We think. It takes actually THINKING before speaking to build a child. We attempt to build her confidence and steer her away from when she is being critical of herself back to loving herself. It really isn’t very hard to do. If she were to ask, ” Do you think she is prettier than I am?” Instead of saying yes or no. I would say,  ” I know you and I know that everything about you makes you beautiful. I don’t know if she is a nice or kind person so I am not sure without knowing that If I think she is beautiful or not. ” I am not saying my way is the right way or the wrong way. I am just pointing out that there are ways you can use words to not break someone down especially if they are already going down in the first place. Words are powerful. Negative words can hold a lot of power. Words can also inspire. You just have to surround yourself with the right kind of people who speak the right kinds of words.

If someone is not building you up in some way then they most likely don’t need to be in your life. 

You can build someone up by making them smile, by giving them your time, by listening, by encouraging. We all deserve to have people in our lives that build us up. By building up I can use this simple analogy:  In building a home you lay the foundation. Then brick by brick you put up the walls. Then you put on the roof. I’ve got my foundation when I was brought onto this earth. It was a pretty shaky foundation due to the abuse but it is a foundation. Now I’ve started putting some bricks up to make my walls strong. Do I want someone to help come along and lay a brick next to me? Or do I want someone to come by and kick a brick out of my wall so it makes it weaker and makes me have to work twice as hard to put that extra brick back? I want the brick layer!!! I want someone to help me strengthen my foundation too! Each brick is a part of who I am. Contributing a smile or compliment or shoulder or laugh is another brick to make me stronger and more secure. The narcissists and the unconditional ones will ACT like they want to come and lay a brick but really they just are there to try and rearrange the bricks that were already laid. The abusers will hammer cracks in the bricks you’ve already placed so that they have little cracks in them. The ones who love, they will come behind them and try and cement the cracks closed.

When negativity becomes your norm, it is hard to see, and hard to break free from. When you do, you will see that the person that was bringing the negative was the problem all along and you were just unfortunately  in their path. As soon as you step out of their path you will be able to see that nothing about you needs to change. You are beautiful just the way you are. It is a cycle that a narcissistic person will never break. You have to see it, and break away from it. Then you have to go through brick by brick and make sure one wasn’t purposely put in crooked just to make your foundation seem unstable. Then you have to straighten it out. They will go on with their narcissistic lives finding their next victim. You my friend will look in the mirror and finally be able to see the strong capable beautiful person that you are because the cycle will finally be broken!

You may risk losing someone. But in the end you will winnby saving yourself.

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An open letter to parents of abused children.

Dear parents,

I wish that we could all come together and declare a war on all pedophiles. A fight to bring them down. A fight to right all the injustices. A battle to stop these injustices from ever happening again. It is a fight that all the little 8 year old boys and girls who are being molested cannot do alone. It is a fight that the teenage boys and girls being violently raped cannot do alone. The abused should NOT have to wage this war alone. But often times they are…all alone. They are left to struggle through emotions and pain they don’t even understand. They wander, confused, often down paths that hurt them even further. They even purposely hurt themselves. I can promise you that if the victims of abuse did not have to do this on their own, their healing time would be greatly diminished! Their futures would be brighter sooner. And hopelessness would not even be part of the equation. They stand there alone. Maybe a few will stand beside them.

There should be an ARMY of WARRIORS standing WITH them! 

I had no base or foundation after I was abused. I had no knowledge of who I was. I had no grounding strength. I was only 15 years old. I wandered aimlessly for years through abusive relationships. I was stripped at a very early age of my dignity and I had no IDEA how to get it back. I was lost. I was broken. I was searching and I had no idea what I was even searching for. NO ONE should EVER feel this way! It is reprehensible that I have ever felt this way. It could have been completely avoided and prevented had I had people in my life willing to fight for me.

My mother tried. She reported the abuse against me to the authorities. For countless reasons I was unable to tell the authorities all of the details of what happened to me. Reasons abuse victims know all too well. Fear, shame, guilt..oh and again FEAR! I was weakened by years of abuse. I was a child. I was in pain. I needed help. I needed strength. I needed someone to FIGHT! And poof it was over. My mother tried. But that WAS NOT GOOD ENOUGH. After the authorities came and went, so did all logic. So did all truth. My family decided to live in a fake, cover up, go on living like this never happened world. I am not unique to this situation. I have read countless stories of children who are virtually abandoned by their parents. Now my parents will tell you they loved me, they paid for my schooling, they helped me pay my rent, they fed me, they tried. Emotional abandonment is abusive as well.  I would have rather been homeless and supported, than fed and alone. 

Do you know how to win against a pedophile? You NEVER GIVE UP! YOU NEVER STOP FIGHTING! In that fight you show your child they are WORTHY. In that fight you become the strength your child has had ripped from them. 

A parent who has a child who has been molested absolutely must not give up. If you give up, your child will.

I am a living testament to that. I gave up over and over again because no one gave me back my WILL! My will was taken from me. I was left empty of direction. I was left empty of life.I was literally a lifeless being floating through life. I needed a parent to BE that direction. The man who molested me was a pilot. He was also the head guy on our ski team on the lake we lived on. He lived directly across the lake from us. I had the continued suffering inflicted upon me to watch this pedophile continue on with his life like he never took part of my life from me, day in and day out.  Do you have any idea how it felt to have my twin brother still allowed to ski on the ski team with the man who molested me???!!! My parents CHOSE THAT. That choice hurt enough to make me attempt suicide.Do you have any idea how it felt to have to live on that lake and watch my twin brother in the same boat with the pedophile that molested me? Enough to attempt suicide AGAIN! Do you know  how it felt to have my father shake the man’s hand that molested me?  With the excuse my father just didn’t know what else he could do? It made me feel worthless. Do you have any idea the significance of feeling worthless? The choices that follow are dangerous, damaging, and deadly. Then to know that other people in that town supported this man who molested me, at such a young age nearly killed me. Don’t they realize that Billy is STILL molesting children? Are they so ignorant to think that it was only me! That man is still damaging children in ways that it takes a lifetime to repair and NO ONE has done a THING about it. Because……they are all cowards. Every last one of them. Cowards. And cowards fail in a war against pedophiles. I am an adult woman who still has nightmares about the fear and helplessness that the abuse caused. I have PTSD, anxiety, panic attacks all results from abuse and a family who chose to live a lie. My brother just decided a few years ago to not ride in the boat with Billy anymore. We are 44 years old. This is too little and way too late. My family has told other family members that the ball is in my court as to mending our relationship. A relationship that stalled because I chose to finally tell the truth. A relationship that then was destroyed by my family’s inability to even acknowledge what was done to me. This is appalling to me. There IS NO BALL. There IS NO COURT! There is a little girl, me,  and my family who did nothing to repair what was done to me,  who grew into a 44 year old woman, who now is repairing herself. They NEVER EVER fought for me. They rolled over and played dead while their daughter fought to stay alive.

I share my story because I am an example of what happens when a family leaves a little girl to walk the road of recovery alone. I am wounded. I am hurt. And they STILL cannot accept or acknowledge their role in any of that and their role was HUGE. It was everything. It was the difference in a life long struggle versus peace and security.

My parents and my family utterly and completely failed me. They failed me then and they are still failing me. 

So if your child is abused, molested or raped, know this…You as a parent have a choice to make. That choice will either save your child or it will absolutely destroy their chances of healing anytime soon, if ever. If nothing else it will postpone their very existence until they are much older and able to regain strength on their own. When I say “existence” I mean having the will to live and experience joy on this earth again.

Be your child’s advocate. Be your child’s voice.

If you hit a brick wall, keep trying. If your child cannot find the words, help them find a person who will. Search until you find the right person your child feels comfortable with to speak to. Your job is to make your child feel heard. Your job is to make your child feel safe. At whatever cost. Hold them. Hold their hand. Ask them what you can do to make them feel safe. They may not be able to tell you. they may not know. They are a child. They may need you to make every single decision for a long time after. Sit with them until the fall asleep. Validate. Acknowledge. Do whatever it takes to allow your child to feel like a child again.  At whatever sacrifice you have to make. MAKE IT! If it means moving, then move. If you want your child to not only heal,  but to thrive and be victorious over this abuse, it all starts with YOU. You have a choice. If you make the right one, your child will know he or she is loved. They will know they are safe, believed, and worthy. Tell them they are loved and worthy. Tell them you are so sorry that this happened to them. Tell them over and over again that you will not abandon them. They will  then know that you value them over everything else. In that alone, they will find their will again. That will turns into hope. That hope turns into healing. That healing turns into regaining strength and dignity that was lost. All meaning for your child will be restored. We simply cannot live without meaning. If we do it is an empty life. Fill your child up with so much love there will be no ROOM for emptiness. A lot has been stolen. It will take a lot more than you think to make them feel whole again. But they are worth it.

It is up to you. Please. I implore you. Fight for your child. Never give up. If you give up, then they  feel like I have felt. They will feel  the war was lost, and the child molester won.

Let us fight a battle against these pedophiles. You take away an abuser’s power when you EMPOWER the victim. Your children are too tired to fight.

 

They already had to go through abuse alone, don’t make them go through what happens after alone too. 

Fight for them.

Their lives depend on it. 

Their futures depend on it.

Sincerely, In hope for children everywhere,

Bethany Kays

 

Rules of intention.

Have you ever stopped at a stop light and looked at the tires of the car next to you? You know the ones where the tire has stopped but the wheel keeps spinning. I sat in a daze at a stoplight and watched the spinning of the other car’s wheel. I didn’t snap out of it until the light turned green. My brain is JUST like that at night. It spins and spins. My body has stopped but my mind just keeps spinning and spinning and spinning. I have to actively snap myself out of it and try to focus on nothing which is nearly impossible for me to do. But spinning is mindless. It is not mindful. It has no real intent. Without intent spinning can quickly get out of control. Lack of control is the last thing that you want. I am a ponderer though. I am a thinker. I can ponder literally hundreds of things in a three hour period as I lay in my bed trying to sleep. But that is the problem. I am not really trying to sleep. I am trying to think and ponder. I have always believed if I can understand it then I can fix it. In working to understand myself and heal trauma I end up  laying awake until 3 am most nights. Worst time to ponder! Yes it is quiet, but pondering alone in the dark is not always a great idea especially when one needs sleep. I believe intention is a powerful tool. If we do not set our intention then our mind is left to wander and spin.

I was lying awake last night pondering the intention of someone in my past. I had discovered some garden gifts she had given me the day before which made me think of her. Instead of setting my intention to sleeping, I yet again set it to understanding this person so I could put her to rest in my mind. She bought me gifts, sent me cards, called me all the time. She was a kind person. A loving person. A generous person. She never hurt me. But I never knew exactly what she wanted from me. My friendship? Love? Companionship? I did care for her but I did not know exactly what my role was in her life because she started out as my therapist. The lines were blurred. I hate blurred lines. She did nothing wrong. She even wanted to treat me for free. She was a good person and I NEED good people. I NEED love. I separated myself from her though.  I wrote her a card once that was signed, “love, always”. She told me that the “always” part really meant something to her. She just wanted to be loved. I wish I could have done it. She deserved to be loved. At the time though, I needed therapy with no strings attached. Loving someone for therapy were some heavy strings that I could not tie. In trying to understand her intention with me I realized that it was more about my intention towards her that I was really trying to understand. My intention always needs to be clear to me. With her, it was too blurry, so I had to distance myself from it. It was the right thing to do. Understanding intention helps me in understanding decision making. I hope she finds the right person to love her, that person just could not be me.

It is incredibly hard for me to set boundaries since being abused. Incredibly hard. The more I understand about myself, the better I will be at setting boundaries sooner than later. Later comes too quickly and painfully without boundaries. With this understanding, and with boundaries, have come new rules. I would not have lay awake for 3 hours pondering that therapist had I just had some rules and stuck by them ahead of time. These new rules help to protect me when I don’t know how to protect myself in the moment. It is like the criteria blog I wrote for people that I will allow in my life. But the rules blog helps me to remain feeling safe in a relationship or even in an interaction.

The rules are pretty simple: 1. Does this person have my best interest at heart? 2. Does this person’s behavior make me feel bad? 3. What is this person’s intention in my life? 4. Are the lines blurry in the relationship?

My rules are broken down even further to simple interactions. 1. Why is this person at my front door? 2. Is it safe to let this person at my front door in my home while I am alone? 3. Am I ok with being alone with this person at my front door?

Further broken down 1. Will this person respect things that may be triggers for the PTSD? 2. Does this person make me feel safe? 3. will this person be understanding of my health issues? My rules are  more a list of questions. A list of questions in which the answers will result in 1. Me keeping this person in my personal life or 2. Me removing this person from my personal life. It is a way to keep things clear. It is a way to keep boundaries. It is a way for me to feel and stay safe.

Boundaries, intention, and mindfulness  are things I am working on. Because the only thing coming from a spinning mind is sleeplessness!

 

 

Tomas the Toad a children’s book.

When my daughter was younger I wrote a children’s story for her. I wanted it to include all the animals that had been a part of our life. I also wanted it to be symbolic of the wonderful family that she, my husband, and I have created. Since I found it in my closet scribble scratched on many sheets of paper, I thought I would type it out and share it here as a bit of brightness and lightness to your day.

mylittlewren toad

Tomas the Toad

 

I was all cozy and warm,

snug in my bed.

My dog at my feet listening to the storm,

When I heard a soft knock at the front door.

I tiptoed down the hall to see who’d made the sound,

But all I saw were raindrops on the ground.

Just as I settled back in bed for the night

another knock on the door

the whole house heard this time.

My mother and father and dog Laney-loo

came to the door to see…who?

“Do you see anyone,” and mama said, “No.”

But Laney-loo said, “Down here, someone is wet, and cold.”

And there on the front step

was a sad looking toad.

“Come in. Come in, and get yourself warm, ” mama said to the toad

who was looking forlorn.

He hopped next to the fire to get warm and dry.

Daddy got him some hot tea

Laney-loo caught him some flies.

I asked the little toad, “Are you alright?”

he said, “I’m feeling a little better, but could I stay for the night?

I was hopping home and got lost in the storm and I need a place that’s safe and warm.”

“Absolutely,” my mother said right away.

“Our home is your home. You’re welcome to stay.”

I ran to my room Laney-loo by my side

looking for a bed we could lend.

I was so excited to have a guest for the night

and excited to make a new friend.

Daddy came to help Laney and me. He said, ” How about this?” and held up some fleece.

It was my old baby blanket still soft and white.

I knew it would keep my friend warm for the night.

Mama and daddy tucked us all in.

We still heard the outside storm and the wind.

We lay there listening to the falling rain

The little toad said, ” I forgot to tell you Tomas is my name.”

“I am Samantha,” I said to Tomas. He and I were instant pals.

We talked and we laughed for almost and hour.

Until mama came in and told us to sleep

She blew us all kisses and we were off to dream dreams.

I dreamed that tomas and I swam in a pool

The sun was shining and hot

The water was clear and cool. tomas dreamed we all went to the park

and swang all day on the swings

while Laney-loo dreamed her own little dreams

of the three of us bouncing on the new trampoline!

In the morning we woke

to the smell of pancakes

and flies for our friend of course.

Then after we ate

I introduced Tomas the Toad

To Jessy our big black horse.

Mama and daddy and Laney-loo watched

as Tomas and I went for a ride

Tomas had never ridden a horse.

This was his very first time!

I know it was time then for Tomas to go home.

It was a beautiful sunny day.

I knew I had to tell him goodbye even though I wanted him to stay.

He thanked mama and daddy, Laney-loo and Jessy too

For all they had done for him

He gave me a great big toad hug

and thanked me for being his friend.

He hopped on his way down the road

Tomas the Toad was going home

which wasn’t really very far away.

he turned as he was almost out of sight and said,

“Maybe I’ll come back tomorrow and play!”

Mama and daddy said, “Anytime,” and we smiled as we all walked back inside.

Just as I layed down for my afternoon nap

I heard a tap tap tap tap tap

on the door again!

I ran and looked and to my surprise

was a tiny little baby wren…

Making things up.

deckpainted

The process of painting the deck was a long one. It was originally stained and to stain it again it would have had to be sanded. It was much less labor intensive to just paint it. It still needed to be pressure washed which took 5 hours and then we needed to wait 7 days for it to dry out before it was painted. The wood was exposed because the stain had worn away. It was not protected. Watching him paint over it was very relaxing. It took 3 hours to paint. To see the warn away and raggedy looking deck get a coat of protection was soothing somehow. It wasn’t just covering up something that was old. It was just protecting something the way it needed to be. A coat of protection. The outcome was a renewed brightness.

I feel old and worn. I want a new coat of protection.I want to feel bright again.I feel like my old deck before it got painted. Kind of chipped away at. Tired. After the grand mal seizure I have recently been told my lyme disease titers came back positive. That seizure did a number on my body. I now have to restart lyme treatment. After 2 years of treatment, the idea of going through that process again is daunting. The lyme is making me hurt all over. Every joint, bone, muscle, is hurting, which makes the muscle disease I have seem even more pronounced. That, with the realization of the depth of the PTSD that I was diagnosed with, is overwhelming. So I keep looking at the picture of the deck and thinking…one board at a time. One thought at a time, one feeling at a time, one issue at a time. I feel very exposed and vulnerable and wish that in a  3 hour period I could just be coated in protection and feel bright again. It will take much longer than that.

As a young girl I felt very vulnerable especially at night. I would sneak down the hallway. I would crawl past the back door because it had a window in it. I put a pillow on my back so that it would somehow protect me from whatever may get me from behind. Then I would crawl to my parents room. I slept wedged up under their bed as far as I could. I was always very alert even while sleeping so that as soon as they woke I could run back to my room like I was never there. I never really slept. I was always on alert now that I think of it. Even when I felt safe in their room I was always worried I would be caught there and I couldn’t explain why I needed to even be there. Everything scared me. The moss hanging off the trees that I could see outside my bedroom window, sounds the house made at night, and even the whippoorwill who was every present, scared me. I felt exposed even back then. I don’t know if the abuse had started and I cannot remember,  or the endless doctor appointments, that made me feel helpless, that started this vulnerability. I just don’t know.

I started seeing doctors when I was 8 years old. My mother was called to pick me up from school because my skin was burning, I had muscle pain, and I was seeing purple streaks. I know this because I obtained my medical records from where I was seen. My mom took me to doctor after doctor and they found nothing. The main neurologist I saw wrote a letter stating that I was making it all up. I have a copy of that letter too. My  mom never believed it. She believed there was something wrong with me. But so many people had already started touching me and I had no control over any of it. I was 8 then. I remember the doctor telling me to just jump up because he knew I could do it but was just acting like I couldn’t. Even at age 8 I was never validated. When I was diagnosed with a muscle disease at age 30, that doctor that told my mother it was all in my head was still in practice. I found him, I called him, and he called me back. I faxed him my diagnosis. I told him I was doing this so that he did not make that mistake again and if another child came in with my symptoms he needed to pursue it. He could have saved me 22 years of searching had he just done a muscle biopsy. He could have just said he did not know. But he said it was made up. That I made the entire thing up. He started a very bad theme  of being accused of making something up. After I was abused no one believed me. No one during that time in my life protected me. I started out vulnerable with the doctors and the abuse  and continued feeling exposed through my teens.

When I started having muscle symptoms again I saw 45 doctors. I have a list of all of them. Everyone from acupuncturist, holistic, homeopathic, chiropractic, to 3 neurologists, 4 rheumatologists, endocrinologists, immunologists, and so on. Many of them could not find out what was wrong with me. Many of them said it was in my own head. I was making it up. There we had it again. It came back. The theme. It was not until the Mayo clinic did a biopsy that they found I had a muscle disease. It was not until I continued to see more doctors for 10 MORE years that I was diagnosed with Lyme disease.

Why would I make something up as an 8 year old child? Why would an 8 year old child want to be bed ridden as I was to just make it all up? And if I WAS making it all up, shouldn’t they have found out why I felt it necessary to do so? And the 45 or so doctors in my 20s-40s who seemed to think I made it up. Why would I make it up? Why would I want to be in pain all the time and unable to drive, unable to do the things I love to do. Because I never made ANYTHING up!

Just because someone does not believe you does not mean they are right. It does not mean that what you are saying is not true. Being sick though I have been at the mercy of doctor’s who did not listen. Only TWO have. TWO out of 45 have listened and found answers. I am thankful for that. I found those two on my own. Those two led me to a being a part of a study in Canada, England, and the NIH.

My muscle disease is genetic. I have had it my entire life. I could have been diagnosed as a child. If I were, I never would have waterskied because it would have done damage to my muscles (which it has). Had I not waterskied I would not have been molested. Had that doctor just listened to me and tried a little bit harder when I was 8… But that did not happen. So I have spent my life trying to find answers.

We may not always know why. I have no idea what caused the fear of sleeping in my bed at age 8. I don’t know why the doctors did not believe my symptoms. I don’t know why my life set down on the path that it did. I don’t know why I was not protected by anyone along the way. I just don’t know why. We don’t always need to know why though. We need to be believed! We need to be understood! We need to be listened to! We need to be wrapped in protection by those who love us so that we are not left feeling what all those years of struggle did to me, left me…

Tired and worn like my old deck. I truly feel like my deck looked.

I have a point to this all over the place blog post! All I can do is board by board start healing. Each board my husband painted I thought of as a part of me that was getting the protection it never had. Board by board getting that protection back. And one day soon I hope to feel the brightness again. I have only found answers because I have not given up. The point of this blog is that I never gave up. I never gave up I am finding answers. It may have taken me until 44 years old to finally get them but it was sheer perseverance that got me the answers that I got. So please don’t give up. It may take 46 doctors to get your answer but you will. It took 44 years to get a PTSD diagnosis. Now it is time to heal. I have been wounded and exposed long enough. It is time to be protected and healed. I am moving closer to that and not giving up. Hopefully we can all keep fighting this together.

I know you aren’t making anything up. I believe you even if no one else has. I believe you.