On writing

I took a step back from writing my book.

I was doing it all wrong. In January, I just jumped in and started writing. I took a break when we went on vacation in the beginning of February and haven’t wrote a word since.

It has become common knowledge now that I am writing a book. When my mom found out, she brought over 2 boxes of journals. I sat down and read through them all over a weekend. Most of them were notes between my mom and special ed teachers. It really gave me a glimpse into some of the school day that I didn’t see.

It was a reminder to me how incredibly violent my brother Matt was. There were times that he threatened school children with scissors and was into poking eyes. That is just a small glimpse.

Then I went and reread all of my personal journals. I flagged all pertinent parts of at least 15 journals and created a general outline of what I wanted to share in the book. Then I am going to go back and rewrite what I already started. I am even thinking about asking my other siblings if there was something that they wanted me to share. But I am afraid that they will be more open to what they don’t want me to share.

I decided that I will not write when I am really stressed out or feeling depressed. The next couple of weeks I will be performing a major part in the community theater production. That would not be a good time to stir my demons.

I have to be careful. I have to know when to run forward and stay back. I could get lost in it or worse dragged back into it. There have been times that I experienced PSTD symptoms. It is horrifying, but I am not afraid of it. I have people around me that will make sure I am safe. This is what I was meant to do.

I see writing this book as a challenge similar to my desire to conquer a 50k. It is a test of strength, determination, and will.

The people who know what I have experienced are saying that I am brave and strong to tackle this. I have a unique story that unfortunately is not unique anymore. When my brother was diagnosed with autism, as the first generation of de-institutionalized mentally ill, it was rather rare.

This is going to be a story of survival and abuse, many people do not realize that when I talk to them about it…the people that didn’t know me then. I seem so normal, healthy, and strong. But remember how I said I am in community theater. I can be a good actress. They don’t know how difficult this is going to be emotionally. I have to be very strong. I have to be smart to notice if I am slipping.

I am doing some public speaking in September for the local autism chapter. When I told the woman that I was going to write a book about my experience, she said that she knew of a publisher who would be interested. Maybe that should be my last resort. Maybe I can do this. Maybe this will be really big. If not, I am okay with it. I want to tell my story for me. I want to heal. I want to help others feel like they are not alone even if it makes me look bad.

I have decided to also keep my blog personal. I am at times tempted to share this blog with family and friends. I can’t waver. If I tell you I am tempted, please remind me of my words. It is a struggle to be fully honest with myself and others. I need to be completely genuine.

I can’t let anything stop me from telling my story.

 

My psych eval (25 years later) part 8

At times Alissa had the appearance of as if she might cry at any moment. She said that she cannot remember many things and cannot remember portions of her childhood. She may pull back in therapy and treatment when things are going well, discontinuing experiences that might have proven gratifying. She may defeat her chances to experience events that can promote growth and change. It is cautioned that therapists should not set their goals too high or press changes too fast as Alissa cannot tolerate demands well.

Sometimes I wonder what you would see in me if you met me. I bear my heart and soul, but you can never look into my eyes. What would you see if passing by?

I find it very troubling that as a teen I said I could not remember portions of my childhood. What still lurks beneath the surface? I find the thought terrifying.

You know what the funny thing is? I am a blatantly honest person, yet I am the biggest liar. I’ve been lying to myself for years. I have been working lately on being honest with myself even if the truth hurts. When traumatic events happened, I told myself that those things didn’t happen.

I locked my feelings behind a door in my mind. Many years later, the door unexpectedly opened and I experienced the feelings many times worse than it may have been. I just couldn’t handle the truth when it happened. I could barely handle the memory of it. I have many such demons behind many such doors. I am afraid.

Telling myself the truth has been causing me to have a lot of anxiety. What is real? What is not real? What if something that I thought was not real is really real? What do I do about it given the new information? I have been lying to myself for so long that it is hard to tell what the truth is.

Reading this psych eval has really opened my eyes. In many ways I have progressed greatly in 25 years and in other areas I have only crawled a few baby steps.

My brother Luke said that emotional development is stunted at the age that the trauma starts. I laughed about this. My first childhood memories and most of my childhood memories in general are very traumatic.

Am I an emotional infant?? Maybe I am. I am still stuck in the trust vs. mistrust stage of development. I can’t talk to friends about this because I don’t trust them. If they get too close, I push them away. But what is to be lost by trusting a few trustworthy people? I don’t understand myself sometimes.

A few of my family members have sought counseling and have reached out to me to do likewise. But I am stubborn and proud. Remember that Alissa does not tolerate demands well. Ha! It’s true, I don’t.

I went to a counselor a couple years as a teenager. She always talked about the feelings chart. I remember that because I didn’t have any feelings at the time. I don’t know why I stopped going. She said that I had the second worst childhood of anyone she has ever seen. I remember that too. I really liked her and hope she never felt like I left because of her.

I was always comfortable growing and changing at my own pace. I don’t want a diagnosis or to be made to feel like something is wrong with me because of the experiences I went through. But maybe if I went to a counselor I could grow and become a better person faster. I don’t know. I will think about it.

 

My psych eval (25 years later) part 5

Alissa described herself in the past as feeling very depressed including having the same nightmare over and over. One of the nightmares involved being kidnapped and another one included drowning and having her feet trapped in weeds which dragged her underwater. She dreams of cats scratching her and a cat would be ‘possessed’ and she fears being bitten and clawed by the cat. Alissa has a nightmare of a bird pecking her and eating her. The morbid content of the dreams would suggest the presence of a depressive disorder.

I remember the repetitive dream that I had as a child. It was dark and I was the last in a line of people walking through a crime ridden large city. There was total silence, no cars, no colors, no other people besides the dark images I was following. Somehow I was walking to my grandma’s house, but every time I was almost ready to make it to her brightly lit front door someone would grab me from behind and kidnap me.

I had dreams about falling and drowning.

Watching my 2 year old brother almost drown was very traumatic for me because I was supposed to be watching him. Granted, I was 6 when I watched my three younger brothers ‘swim’ in the lake. For the longest time after that I felt like a failure. When I was 12, I watched my baby cousin in a swimming pool with other adults around. She fell in and I rescued her. I felt so happy like I redeemed myself.

It was also traumatic for me when my dad held me in the weeds because I was terrified. That could explain nightmares of my feet tangled in weeds. But I don’t remember ever dreaming about Matt or how he hurt me.

At times in my life I went through periods of insomnia and nightmares when I could sleep. It’s not too unusual for me to wake up crying an hour or two before I needed to get up. This is the place where my loved ones die. This is the place where the people and animals I love turn on me. This is where I almost die.

But I remember also having dreams where I would soar and fly above it all. It wasn’t scary. It was exhilarating and free. I didn’t have to be trapped by the things that frightened me.

The brewer’s wife

Recently I met someone new under unusual circumstances. We met through our realtor, at a party she was hosting with a stranger at the stranger’s house. Generally this was out of my comfort zone as an introvert. Paul, the extrovert, said that he didn’t care either way if we went. It was rare to have a weekend evening free at the end of summer. Even rarer was that the introvert was all excited to go. I wanted to meet some new people in the neighborhood.

The party had an eclectic variety of home brews that were remarkably good. Paul said that he wanted to thank the brewer for offering up his marvelous beer. We had a long conversation with the brewer and he stated that he loved sharing his beer with friends. I jokingly asked him how we could become friends.

Skip a month ahead…I was planning Paul’s 50th birthday party. I was wondering what to do about drinks. I was already planning on having the food catered in. Then I thought of the brewer. I asked him if he would be willing to share his beer with us for the party. I offered to pay him which apparently was illegal. Whoops! I didn’t know. He said he wouldn’t accept money, but would do it for a friend. So we set up his kegerator at our house with 3 of his home brews.

After the party, we invited the brewer and his wife over for supper and to pick up the kegerator. Now the brewer’s wife is a doctor of psychology. Most of her clients are autistic. She also works with their families.

I had my first one on one conversation with the doctor. I ended up telling her a lot of things that I don’t even tell my closest friends after knowing them for years. I told her about the day on the lake that my brother almost drowned. That day, at age 6, I was left alone to watch my 3 younger brothers swim.  Alissa would certainly yell if there was a problem, but Alissa didn’t. I told her that since I was in grade school I felt like an adult.

I told her that I was homeschooled from 8th grade through 10th grade because my autistic brother was too violent to go to school. I told her that I lived my late middle school and early high school years in great isolation from my peers. I told her how I was a caretaker for my brother. Instead of going out with friends on a Saturday night, I helped shower my autistic brother. I told her that for many years I was a massive bruise from when my brother hit/hurt me. I told her the hardest part was that he never was told that hurting me was wrong.

I told her of my restrictions because those things could set Matt off. I wasn’t allowed to use hair spray, wear nail polish, or perfume. We had to dip our tooth brushes in peroxide and baking soda for awhile. I told her that my dad was abusive. I told her how I sometimes have flashbacks.

She said that lots of times special needs siblings have issues with addiction or depression. She said that the depression rate of special needs siblings is 50% compared to 6% of the regular population. But she said that the state lacks funding to have programs for siblings because they are ‘normal’. I find that very sad.

I told the doctor that I would be willing to speak to parents or siblings about my experiences. I told her if my story could help a couple others who are struggling, it wouldn’t all be in vain.

That evening, they left the kegerator at our house promising to get together soon to pick it up.

The next day I apologized for being so candid. I told her that I don’t usually share personal things with complete strangers about my life (outside of this blog). She told me that she was honored that I shared my story and that for everything I’ve been through it’s surprising that I am a solid person. (She also said she would be sending a bill which I hope she did not mean!!!).

She said that she was planning on finding a way for me to share my story of hope with others who are struggling. I’m not sure if anything will come of it or not.

I’ve always felt like my purpose is to help others…to write about it…to speak about it…

God works in mysterious ways…sometimes he works through beer.

 

In my feelings…

Last year, at about this time, my brother Matt was taken off of his anti-psychotic meds. Slowly, the docile Matt that we came to love disappeared. It started with a grunt and a few twitches. The Tourette’s was back. Then he started flapping his hands again, the Autistic self-stim. It all would’ve been tolerable for his liver’s sake, I guess.

But then the old Matt came back in full force. He talked to my mom about wanting to kill my niece, my brother Luke’s daughter. He fantasized over scenarios of killing or harming her. The voices were back. He laughed at the things they told him to do. He had conversations with himself as he flapped, grunted, gagged, and twitched.

He had to go back on the medicine. It took months to wean him off and it would take months until it was fully effective again. In the meantime, Luke had to keep his little girls away from Matt.

All of this happened before…

He attacked my daughter at her birthday party when she was 4. That was before he was medicated and in a group home. After that happened, I cut myself off from my family for years.

Before that, it was me. It’s okay if he hurt me, we were the same size. It happened day after day for year after year.

I was told not to feel. Don’t feel…don’t feel…don’t feel. I got pretty good at not feeling.

My dad never told me he loved me or said that everything would be okay. He could sit in the next room laughing over something stupid on TV while I cried. He didn’t care. He looked at me with vacant eyes. He wasn’t there.

He didn’t hug me, nor did he hit me.

Then there was a switch that would go off somewhere in my dad’s mind. He would become angry. He screamed, he swore, and flailed out at everyone. He laughed at our fears and tears. He ridiculed us, called us stupid, and told us how much he hated us. My brother Luke got the brunt of my dad’s anger. But Luke rattled his cage.

My dad never said ‘I’m sorry that you have to go through this’. Instead he called us names like wimp, baby, or worse if we cried or showed any signs of weakness. I built a tough exterior around myself that wouldn’t even allow empathy in. For every punch, hit, or bruise from my brother, my mantra was that the physical pain would make me stronger. The bruises and scars have long faded, but the inner scars will always remain unseen to most.

My mother was the perfect mom. Except she had one weakness, Matt. She favored him over everyone and everything else. If Matt wanted to go, we went. If he wanted to stay home, we stayed. If Matt was hot and we were cold, she would crank the A/C. Matt couldn’t help it, she said. We had control over ourselves, he didn’t. Sometimes she was so blinded by Matt, that she would put other people at risk by his behavior. But, she cared.

A few months ago, my mom brought Matt up north for my niece’s birthday. I’m not sure if it was a miscommunication or if she was trying to force Matt back into Luke’s life once she deemed Matt as better. Both situations happened before. Luke and my mother got into a huge argument. He wasn’t ready to trust Matt around his daughter. My mother left crying.

This takes us to a couple of weeks back…my mom stopped by on a Friday night. I asked her why she was over. On Friday nights she goes to the group home to pick up Matt. She said that Matt wasn’t coming home because Luke was coming over the next day to talk…something about therapist…repressed memories…

I felt very anxious the next day. For a brief moment, I wept. I know how Luke feels. I’ve been there before. It rips you apart.

It’s been almost a year and a half since I had my last what I call post traumatic stress episode.

It started out innocently enough. I was decorating the Christmas tree. Then this memory came back, almost like an image in my mind that I couldn’t get out. With this memory came intense emotion…stronger than anything I have ever felt before. It lasted almost two days. I couldn’t sleep and when I did I had intense nightmares where I woke up crying and frightened. I had several nightmares a night. I felt intense fear, panic, and rage. I couldn’t eat. I couldn’t think rationally or otherwise. It was very horrifying.

I fell into a deep dark depression. I drove around aimlessly in my car. I had this strong desire to end it all. If I drove fast in my car and missed a turn…well…oh well. I screamed at anyone that tried to help me and pushed them away. I remembered. I felt the feelings I tried to repress 100x’s more powerful than if I would have felt them before.

I am afraid of this happening again.

My childhood…the flashbacks…those are the times my feet have swept the bottom of the ocean floor. I honestly don’t know how I survived, thrived in fact. I am completely ‘normal’, but my experiences in life are far from it.

The meeting with my brother was all very hush hush. He talked to my dad for 3 hours and my mom for 2 1/2. It sounds like there was closure and healing. At this point, it is hard to say.

Maybe I should talk to my parents too while I still have the chance.

But I’ve chosen to write about it instead.

Not a special Olympics type of story

For many the holiday season triggers memories of joy and happiness. For me, this time of year triggers some sort of post traumatic stress response. I realize that now. Wow, and it only took me 19 years to figure it out after I earned a degree in psychology.

I feel like I am back to normal now, whatever that is..

For the first time in my life, I was able to write down exactly how I felt while I was going through it. It wasn’t easy to relate. I think I have some sort of post traumatic stress response to certain triggers. It sounds absolutely crazy, I know. Most of the time triggers elicit a response of depression for a day or two at most.

I think this happens more often than I realize, but not quite as severe.

After I left my childhood home, I fell into a deep depression that lasted for several years. I also picked up anger and anxiety to put in my baggage along the way.

I don’t blame anyone for what happened.

I remember starting to feel angry last week at Thanksgiving when my mom was giving me a hard time about taking Prilosec for my acid reflux. She really wants me to get allergy testing and offered to pay for it. I have been reluctant. It’s not that I disagree, it triggered memories of growing up.

Matt was supposedly allergic to everything. We couldn’t even have cars parked in the garage because of exhaust fumes. We couldn’t have curtains because of the formaldehyde. For awhile we weren’t allowed to use toothpaste.

Personally, I think that my mother’s response was too extreme. She would have extreme anxiety if Matt was exposed to any allergens. She would scream at my dad if he came in the house smelling like exhaust fumes. She called the nearby farmers and screamed at them if they sprayed their fields without calling her first. She even called the county and yelled at them when they came by spraying the ditches.

My mom seemed to think that controlling Matt’s environment would stop him from being violently autistic. But nothing seemed to stop his violence towards himself and others, namely me.

I think that my mother has and always had good intentions. She is worried that I will die from kidney failure, a supposed side effect from the Prilosec. I will have to tell her that my daughter Angel has already offered me her kidney when mine fails.

My mom was always there for me when I was a kid. She was the one who helped me pick up the pieces of my broken mind after Matt was violent. She also helped my brother Mark out when he experienced a similar response to mine. The task she was given was not easy to do.

I don’t blame my dad, despite his cruelty. He was as much of a victim as the rest of us.

I don’t even blame Matt. If you met Matt today, you wouldn’t believe a word I have told you. He is now docile. By some miracle, he grew out of his violence.

The last time that he hurt someone was 14 years ago. He attacked Angel on her 4th birthday. After he attacked Angel, it was a time of great emotional turmoil for me. I cut Matt out of my life completely for a few years. He wasn’t allowed around my children.

His psychiatrist threatened to have him committed to a place for the violently mentally ill. It was one thing when a child was hurting other children, but it was entirely different when a grown man was attacking children. In response to this, Matt was home bound once again and kept out of public where he could hurt someone and get committed.

I was already feeling edgy about my mom pushing the allergy testing on Thursday. Then my visit with my dying mother-in-law on Saturday made me very anxious. Then the sadness over Angel going back to college and the trigger of the Christmas tree was enough to set me off into this deep dark spiral downward.

I feel horrible about talking to you about this. I wish I had a great special Olympics type special needs sibling story to tell you. I feel tremendous guilt that I don’t.

I haven’t met anyone else who has had a similar experience to mine. If you are out there somewhere, I want to tell you that there is hope. This was the only thing that kept me alive as a teenager and young adult. I prayed fervently and had hope that someday there would be a better life for me where I could experience joy.

I firmly believe that you cannot fully experience joy without experiencing sorrow. I have found that joy in abundance. I experience life at a much deeper level than I think I would have if my life was easy breezy. No small talk here, just the blatant honest truth. There is value in being able to honestly share the sorrow that I experienced this week. I need to accept what I have been through and the emotions that accompany it.

There is hope! If opening myself up and allowing myself to be vulnerable helps just one person hold on for another day, it would be worth it. You are not alone! There is hope…

Trust that tomorrow will be a better day.

 

This, whatever it is..

Last night after writing, I felt restless.

I had an inability to focus and no desire to do so.

I left home.

I walked out the door and drove off without telling anyone I was going.

I drove aimlessly for an hour. I am drawn to places where I once was happy, but are lost to me now. I drive to the house I used to live in when we were first married, to my grandma’s house, or to the sailing club devoid of boats for the winter. Last night I drove by Lisa’s old house. I glanced as I passed and saw children playing inside. I drove along our old running route. Then I drove aimlessly after that.

I had a conversation with God while I drove. Why weren’t you there for us back then God? Why weren’t you there for me? Where are you now? But I didn’t receive an answer. I entertained the thought that he was never there. Maybe there is no God. I don’t know if I believe or trust anymore. My faith is held intact by a small string.

Paul was worried when I got back home. He forced me to talk to him when I would rather stare off into space, be alone, or attack him so he would stay away. I felt flooded with despair. It threatened to drown me. What is my purpose? Why am I even here?

The sadness was relentless, but I fell into an exhausted sleep only to awake hours later from a horrifying nightmare. I dreamed that I went back in time. There was a horrific lightening storm like one I never saw before. The lightening burned holes in the ground and tried to pull me into it. I had no way to protect anyone. My kids were in it while they were younger, I found my little brothers, and relatives that are long gone now. I couldn’t protect anyone and had trouble finding them.

I awoke in absolute terror. I wrapped myself tightly in my blankets to try to feel safe. But the feelings of terror surrounded me for another half an hour. I got up for awhile, unable to sleep. Then I fell back into a restless sleep for the rest of the night.

I awoke feeling nervous and afraid, like an intruder was in the house. I felt jumpy. I know the feelings weren’t true. I was alone, and no one was there..

The memories keep rushing back. Images ricochet through my mind..Sounds echo through my head… I hear the laughter of children on the playground… I hear them mocking Matt.. I watch as Matt kicks the girl at the roller rink.. I hear her screams and her dad’s angry yell.. I walk through the playground with Matt and his therapist trying to see if the laughter of the children will trigger a meltdown to try to help him somehow stop..I hear the cats cry..I hear a music box and Aunt Grace talking..I hear the laughter of Uncle Harold..

The images and sounds haunt my mind. Whispers of memory. Distorted, out of focus, yet somehow real, remembered faintly.

Then I realized that I was back home. I am feeling the way that I felt back then. The anger, the depression, the fear, the insomnia, the nightmares..

Paul said that maybe I should take some time off to rest. But I am going to work…I am following my regular exercise routine…and I am grasping onto my little string of faith..

If I let go, I will surely drown…

 

My mother, my heroine

My mother’s life has been anything but ordinary. She was born prematurely in a foreign country. Despite my grandmother taking medication to prevent premature labor, my mother arrived early at a hospital in the Panama Canal Zone, after my grandma flew several hours to see her husband who was stationed there in the Navy. She weighed 4 lbs and stayed in an incubator for a month. This was in the 1940’s and she wasn’t expected to live. 

My mom grew up in a rural community and met my dad in a one room schoolhouse. Her family was poor and she spent most of her summers picking cucumbers for a local factory to help support her family. She didn’t have a lot of time to play and had one doll. As a teenager, her mother died after delivering her eighth child. My mom was in college at the time and spent her weekends helping take care of her 6 younger siblings. My dad went off to Vietnam. He came back a different person. College finals were cancelled due to war protests and bomb threats. 

My parents eloped. My dad went to work on their wedding night, my mom cooked for their sponsors. The night ended with freezing rain. My mom wondered if she made a mistake. My dad started drinking a lot. He was depressed and sat around with a gun in his lap staring off into space. He was going through PTSD after Vietnam. He drove a tank in the war and one day all of his buddies died in that tank. He was the only one that walked away unscathed. He became abusive and mean. My mom wondered if she made a mistake. My mom got pregnant with me. When I was a month old, a tornado was headed towards the trailer park we lived in. Sirens blared, it was time to take shelter. My dad just sat in his chair and stared. My mom decided it was time to pack up and head back home, they were hours away from family. 

My parents lived with my dad’s parents for 2 years while they built a house and started a new life. My dad stopped drinking. My mom got pregnant again. They moved into their new house and planned on having 2 kids. Their plan for 2 kids ended up turning into 4 kids within 5 years. Their second child was violently autistic. My parents fought constantly. My mother wondered if she made a mistake. My mom was very beautiful with plenty of opportunities to leave my dad. A best friend’s husband wanted to plan a hook up with her up north. No one needed to know. Another friend’s husband kissed her. I just found out about this and he was a great guy. Guess who I ran into right after she told me? Other men pursued her, but she ran away from them instead of running away with them. That was one of my mom’s greatest strengths, staying committed to a marriage she was miserable in. This is such a rare quality nowadays.  It is hard to live up to parents who have a wonderful marriage. It is even harder to live up to a parent sticking with it when given ample opportunity to leave. 

My mother was the family breadwinner. She is still working full-time at 67. She was emotionally strong when faced with many difficult life situations. She was there for us when my dad couldn’t take it. She has patience when others have none. She is a hard worker. She handles difficulties with ease. She has been an anchor through all of life’s storms. I am proud and honored to have her as my mother. What a blessing her life has been to me and many others. She has been a lifelong advocate for the disabled and their parents. She has helped many with her empathy and compassion. She has been very generous with the gifts she has been given. She is one strong woman. 

Happy birthday, mom! I love you.