Done, done, and almost done

I am so relived that all of the difficult things over my head this month are now done.

I finished my first 50k. I wasn’t sure I could do it. Being anemic and having a rough summer health wise made me really question my ability to get it done.

Today I sent in my video to the local autism chapter about what my childhood was like being a sibling of someone who was violently autistic. I also gave tips to parents on how to support their non-autistic children. I created a new Facebook account and a support page for siblings.

Making the video was very difficult, not just emotionally either. Somewhere in my mind I expected that I would look like someone on the news. I would be smooth, polished, and look like I was 25. The joys of being a perfectionist!

I found that I couldn’t make the video when other people were home. My husband walked in the room while I was recording and I had to start over. So I decided to tell everyone when I was recording to not walk into the room. But I could still hear the bass from my son’s music. The beat of the music banged in my head distracting me. I was paranoid that everyone could hear it.

Then I waited for the small window of time where I was completely alone in the house. I was still hoping that the dog wouldn’t bark. I created 3 fifteen to twenty minute videos on my phone. After I was finished, I watched the videos. They were okay. I was very critical of myself. Man, do I look old and tired. Look at those big black rings under my eyes. It was hard talking for that long in front of a camera without a script. Plus I was never one to like hearing recordings of myself singing or speaking.

Then I had problems sending the videos to my contact person because the videos were so large. It took me 6 days to figure that one out after a day and a half of actually making the videos. I wanted to wear the same shirt, hair style, and makeup to look like the whole thing was effortless. But trust me when I say it was not. I deleted more recordings than I kept.

Right before sending them out, I had a moment of sheer panic. It’s that awful feeling that you get before doing something risky, scary, but exhilarating. Would the videos be good enough? Would my best efforts suck? What would my family think? I feared success. I feared failure. My thoughts fluctuated between what I created sucked to everyone is going to know everything I never wanted anyone to know about me. I wanted to delete all of the hard work I put into this.

It is finished now. I sent them. Whatever happens, happens.

Next week I will go back to writing my book. I finished my research. I read about 40 journals written my myself, my mom, and the schools my brother went to. I read countless letters, notes, and articles about my brother. I even went back and reread my blog searching for clues. It’s done. I have everything I need to finish the book.

I am done, done, and almost done. If I heal and help other people in the process, it is worth it!

Brainspotting

I’ve realized a few new things about myself over the past couple days. The things I once thought were normal, or at least normal to me, I am questioning. I think I just got used to some things that are just not right.

There isn’t a day that goes past that I don’t think about the childhood trauma I’ve experienced. I wish I could just get over it or at best think about these things every other day. As a result, I’ve struggled with lifelong anxiety and depression.

But that isn’t all. I constantly experience exhaustion and fatigue. My doctor wanted me to go in for a sleep study when I was in my 20’s. I did and was told that I never went into deep sleep.

I started reading the book The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Dr. Bessel Van Der Kolk. I would highly recommend the book if you have experienced or are interested in trauma in general. One of the chapters talks about EMDR. EMDR is a therapeutic process in which someone focuses on a pointer moving back and forth while thinking of traumatic experiences. It somewhat mimics REM sleep which PTSD sufferers apparently don’t get a lot of. It is supposed to be very effective in healing trauma.

When I was a little girl, my autistic brother was physically violent with me on a daily basis for years. Sometimes while I was trying to sleep at night, he would come in my room and threaten me with violence. As a child, I slept with my door open. You see, I was afraid of the monsters in my closet and the ghosts under my bed that would attack me when my door was closed. I thought like a child. I feared illogical demons instead of credible threats to my safety.

The stress hormones pumped through my veins with a steady beat day and night. My body learned to never relax. I had to be alert for danger at all times. Deep sleep wasn’t safe.

I started paying attention to my sleep patterns lately. They’ve been the same as long as I can remember. I don’t have problems falling asleep, but I can’t seem to stay asleep. I usually awake between 2 and 4 and stay awake for an hour or two. I try not to think because then I might as well get up because I won’t be able to fall back asleep. Sometimes I get up and walk around.

Usually once or twice a week, I have bad dreams. It seems when I am just about ready to go into REM sleep, my body awakens me. Even though the danger is gone, my body is still on high alert.

I can’t remember the last time I slept through the night. I can’t remember the last time I didn’t have a nightmare when I had a dream. When things are really bad, I experience insomnia and intense nightmares together on the same night. These are the nights that I wake up sobbing, can’t go back to sleep, and if I do I have nightmares again. Thankfully it doesn’t happen all that often.

I am exhausted, but can’t relax. My anemia is making things worse. I lack energy and can’t seem to think straight.

My counselor is trained in brainspotting, which is an offshoot of EMDR. Next session I am going to give it a try and see how it works. Maybe I’ll finally be able to get some sleep. Even though a pattern of insomnia and nightmares is normal to me, I don’t think that it is normal. Maybe there is nothing I can do about it, but I’m going to try.

Being in a better place

I met with my therapist this week.

She asked me what I thought about living in my old house. I told her that my old house wasn’t anything special but it suited the purpose at the time.

She then asked me what it was like living in my dream house. Did it change me at all? Do I feel like I am a ‘softer’ person? Did I give up some of my determination?

I said that I don’t think I changed at all.

To this she responded, what if you were a healthier person inside? Do you really think that it is going to change you for the worse?

She trapped me in my own thinking.

Maybe I could have inner peace without giving up some of the grit that survival awarded me with.

I did what I had to do in order to survive. But now I am stuck because I know no other way. It suited its purpose at the time, but I no longer need to live there.

Why am I so fearful of being in a better place?

 

 

Trauma drama

Last night I was having a debate with Arabella. She said she believes that everyone experiences traumatic childhoods.

What??

So I gave her a scenario. Girl A spent her childhood as an incest victim. Girl B’s most traumatic experience was that she didn’t get what she wanted for Christmas one year.

I asked her if both girls experienced a traumatic childhood. Arabella responded that they both did. I couldn’t believe it. Then she further stated that my childhood was no more traumatic than her own. I felt offended by her comments and am hoping that her viewpoint will change once she matures.

Arabella asked me if I knew anyone with a perfect childhood. I responded “yes” that I believe my sister-in-law Emily had a perfect childhood. Both my brother and I have flashbacks and at times PTSD from our childhood. It has been very painful dealing with this far into adulthood. Emily has been trying her hardest to help my brother through the pain he is experiencing.

The other day I told my husband Paul that maybe he is better equipped to help me than Emily is to help Luke because his childhood was less than perfect. He disagreed claiming that he has his own demons and voids to fill from his own childhood. He said that someone with a firm foundation is better equipped to help someone who is struggling.

Paul grew up without ever knowing his father. His mother was a teenage high school dropout when she had him. She was willing to work, but struggled financially due to her lack of education. She wasn’t very bright, and although she tried couldn’t earn her GED. We also suspect that his mom was mentally ill. She had a lot of symptoms of Borderline Personality Disorder (BPD).

Paul’s mother Martha was never a boring person. Sometimes she was a lot of fun to be around. She was exciting and when she loved you she made you feel like you were on the top of the world. There was a time when I was absolutely wonderful and I could do nothing wrong. She made me feel special, important, and loved. In those times, she was a very positive and encouraging mother to Paul. She told him he could do anything he put his mind to.

But there were times that I couldn’t do anything right. Everything was my fault. I was a horrible person. At times she was paranoid. She accused me a taking her boots and leaving a pair of boots that were just like hers but weren’t. She would scream and kick us out of her house. Nothing was ever her fault. Someone else was always to blame. She didn’t lose her job because she was always late, it was because someone was out to get her.

She couldn’t handle watching all of our kids if we wanted to get away for a weekend. She called the oldest two kids demons and our youngest an angel one of the few times she watched them. My son locked himself in the bathroom on the last day until we picked them up. Even her one on one time with the grandchildren turned into big fights. She got into huge arguments with everyone she was close to, then the next time she saw you acted like nothing happened at all.

Martha could convince anyone that she should be the mother of the year. She said things that weren’t true, but were absolutely believable because she believed them. I could go on and on. I don’t believe that Martha was a bad mother. She was just mentally ill. In some ways that makes it so much easier to understand and accept. As you can see, Paul has his own baggage. How can he help me? We tend to stumble along down this path together.

Paul and I did the best we could to be the best parents we could be with what we were given. We didn’t get a lot of help and support with our children and at times felt like we needed to care for our parents.

Paul said that Emily is better equipped to help her spouse through hard times because she has a good foundation to lean back on. Being able to relate is overrated. He convinced me and I changed my mind. Now if I could only convince Arabella and change her mind.

Depression

As I was getting ready for the last show, I saw a car pull up to the theater long before the show started. It was a navy blue car, the same color, model, and make as my dad’s car. The passenger door opened and a very large man struggled to get out of the car with a cane. He had his head down, but I could see a mass of white hair and a long white beard.

I knew my mom was coming to the show. But was my dad? Would he finally tell me that he was proud of me? The man looked up and I realized that he wasn’t my dad. I felt sadness for what never was and what probably will never be.

Depression, it hit me the hardest in my late teens and early 20’s. As I mentioned before, my childhood was the hardest period of my life. My brother Matt, who is less than 2 years younger than me, had some very serious health and mental health issues. He was violent towards me, towards others, and to our pets. He hit me, pulled my hair, and clawed my arms on a regular basis. I think he killed my cats. He threatened to poke my eyes out with a knife. The list goes on…seriously, just read the book once I finish it.

My dad was depressed too. He withdrew from the family. When he was home he would sit on the couch and ignore us while watching TV. If the house was too quiet, I worried that I would find him dead somewhere.

My dad is the most pessimistic person I know. His life mottoes are ‘sh!t happens’ and ‘life’s a bitch, then you die’. He never hugged us or told us that he loved us. We never had father-daughter ‘dates’. Nothing. Instead he told us that we were stupid and laughed at our feelings, dreams, and fears.

I consider myself a realist, which probably is just a nice way of saying pessimist. But I will never be like my dad. I will never tear someone else down to lift myself up.

My dad is everything I don’t want to be. He never took care of himself. He ate a lot of junk food. He never exercised. He weighs almost 350 lbs. He hasn’t brushed his teeth in years. He hasn’t showered in almost a year. He is lazy and hates to work. He doesn’t clean up after himself and is a hoarder. Once one building is full, it’s time to build another shed. He doesn’t finish anything he starts. My parents built their house in the 1970’s and the upstairs bathroom still has not been finished. Simple repairs lie in disrepair for years. He is even too lazy to bother getting dressed if he doesn’t want to.

Maybe that is why I do everything the opposite. I eat healthy, run marathons, can be a workaholic, try to maintain a healthy weight, get things done right away, and am a clean freak. I don’t like things that he likes just because he likes them. But the truth is, I am still his daughter. I can’t hide from that.

In early childhood, when my dad emotionally checked out, I was called up to the plate. I started trying to fix the problems at home. Nothing was kept from me. I was handling responsibilities that no child should have to handle.

A 6 year old should never have to watch her 3 younger brothers in the lake even for a few minutes. My youngest brother almost drowned that day.

A 13 year old shouldn’t be making the call whether or not the neighbor should come over and put our dog out of her misery when she was suffering a painful death. I made the wrong call and I have to live with that.

A college student shouldn’t have to help raise 3 teenagers. But that is what I was doing.

I home-schooled one year of middle school and two of high school so I could help my mom out. Even though I attended college in the drunkest city of the United States, I never went to a single college party. Most Saturday nights you could find me at home helping shower my disabled brother. Then I graduated from college, got married two months later, and right away started a family of my own. At times I feel like I am suffocating.

Sometimes I yearn to be the child I never was. In some ways, my kids are older than me. I gave them everything I didn’t have. The pendulum swung too far to the other side. I only told them the things they needed to know. I only let them be kids. I gave them few responsibilities and chores. I shouldered that responsibility so they didn’t have to. I was wrong. I realize that now. But how can we be functional parents if we both had nothing but dysfunction to model from?

I get depressed when I have memories of the horrible things that have happened to me. The PTSD depression is the worst I’ve ever experienced. Burying my painful feelings in the moment is a future time bomb. The feelings I’ve repressed have a way of coming out tenfold. The depression from that is intense and irrational. The urge to end it all is hard to fight. By the grace of God I was able to make it through to tell you about it. I want to say that will never happen again, but here I am stirring up my demons.

I actively mourn the childhood I never had. There is something joyous and magical most people experience that I’ve never had. It is utterly devastating. I don’t know if I will ever be able to get over it. It is the kind of depression that no pill can cure.

My life is everything I’ve ever wanted it to be now, yet somehow I cannot outrun the demons of my past and find peace.

 

 

 

 

 

 

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.

 

Goal 3: Start the process of writing a book

For a very long time, I was angry about the things that happened to me in my childhood. Why did my family struggle so much when other families had it all together? I think it was a miracle to survive with most of my sanity intact.

What is the purpose of struggle? What are we supposed to do with what we have been through?? Personally, I believe by successfully surviving my obligation is to reach out and help others going through similar circumstances. I have always felt this way but I was never sure how to do it.

Blogging has been a wonderful way to process my experiences in life honestly. But I found it to be lacking. I don’t feel like I have been able to reach my target audience so to say. They haven’t found me and I haven’t found them either. Maybe there are few that can relate to my life story. Where is everybody? Why aren’t you writing about it? Maybe it just takes a long time to process it like it did for me.

I told myself that once I retired I would write my story. I always put it off into some future place. Then I found myself without a job.

I’ve tried to find books even other blogs of people out their with similar stories and found nothing. How can there be a void? Nothing?? I decided that I am going to be the one to write the story. I don’t think that it will be easy, but I do think it will be worthwhile.

I am going to write the story of a sibling growing up in the 1980’s with a violent autistic brother. This was a time when autism wasn’t an epidemic. This was a time of very limited services. This was a time where my mother was blamed for his violent behavior. This was the time where I was expected to give up my childhood to be a caregiver. I also had two other younger siblings and an abusive father which will be woven into the story.

So I will be processing more journals from my childhood in the weeks to come and compiling everything together to start the process.

I also have some exciting news. My new friend Sue, who is a child psychologist that works with autistic children specifically, put me in touch with someone from her agency. I will be meeting with this person at the end of the month. I have been asked to be put on a panel as a sibling to work with parents. I don’t have all of the details yet, but I feel like this is a huge step forward in being able to help others who are going through what I have been through.

I am very excited about where this could lead even if I am only able to help one person through my experiences. Struggle does have a purpose, I just needed to find mine.

 

 

Luke’s visit, part 6

I don’t like it when people touch me, neither does Mark.

Luke has always been an affectionate guy.

Maybe it just boils down to personal preference. We had the same upbringing.

We remember the bite marks on our arms, the scratches, head butts, eye pokes, kicks, punches…that we received from our autistic brother Matt.

My dad seemed afraid to hit or hug me. He would tickle my brothers and I which was miserable because he just wouldn’t stop when we told him to.

Touch was not usually a good thing, but I did like my grandma’s hugs.

My dad was not gentle in any way. He would squeeze my mother in hugs too tight until she would cry out…stop you are hurting me. Her cries would draw in my little brothers. They would jump on my dad and try to get him to let go while he swung at them like pesky mosquitoes. It was all a game.

Now Luke was a mama’s boy, which really seemed to bother my dad. If anyone tattled on Luke, he would get it. Mark and I never got spankings, but Luke always seemed to get in trouble. He hated my dad and did a lot of things to bother him like cutting the cords on his electronics. Mark and I never really did the things that would fuel my dad’s anger.

There are some things I feel bad about. Sometimes my dad would fly off the handle with Luke about minor things that I tattled about. There was also a period of time that Luke looked to me to be a second mother. He clung to me and I pushed him away.

There were times when my dad was a little rough with Luke and Matt. But most of the scars came from Matt. He would out of the blue attack someone. It would bother me that no one told him what he was doing was wrong. In fact, if we tried to defend ourselves or retaliate, we were punished. He couldn’t help it, but we could.

It was always hard to see Matt hurt someone, stranger or friend. Sometimes we could see the signs beforehand that he was was agitated. I always felt guilty that I couldn’t stop it from happening. Sometimes I felt responsible for it. Maybe if I noticed sooner, I could’ve stopped it. Why should I feel responsible for my brother’s actions?

His actions had a direct effect on my life. It was the reason that friends weren’t allowed to come to our house. It was the reason I lost friends. It was the reason for my isolation. Matt was so violent that he wasn’t allowed in school for 3 years. A teacher came to our house for Matt. My mom pulled us all out of school. I spent one year of middle school and two years of high school at home. I only saw my friends a couple times a month.

My cats became my friends. Sometimes Matt would hurt them. If they tried to come in the house, my dad would pick them up by the tail and throw them out. But I always let them sneak in my bedroom window.

There was nothing normal about my childhood. Yet here I am trying to live a normal life.

 

Luke’s visit, part 4

When we were young, my dad was a very cruel man. He is not like that anymore.

Luke said what terrified him the most was the train. It was one of his earliest memories. He remembers dad inching closer and closer to the tracks while the train was passing. He hid crying in the back window of the car as my dad and brother Mark laughed. He said I wasn’t there.

I don’t remember this being an isolated incident. I was there. I almost forgot about this. The train did not terrify me. I liked to wave at the man in the caboose when mom took us on walks. As kids, we lived near the railroad tracks. I found the sound of the train’s whistle to be rather soothing at night. We even saw a train derail in our lifetime, but not on those tracks.

I remember my dad doing other things like crossing the tracks right before the train passed. But I think he found much more satisfaction in waiting for the train to pass. He inched closer and closer until the front of the car seemed to kiss the side of the train car.

If you get really close to a train, it is squeaky and loud. The cars teeter and rock back and forth making an awful grating noise. Sparks fly. It seems like it could come off the tracks at any moment and destroy the car in a big ball of fire. My dad took the opportunity to scare Luke or any of us whenever he had the chance. I remember this happening several times with the train. I was there, but Luke does not remember that.

We couldn’t comfort our terrified sibling otherwise it would probably be our turn next. Compassion and empathy were not rewarded. In fact, they were more of a weakness. Laughter was probably the safest response. If you laughed or acted like it didn’t scare you, he wouldn’t do that to you. I often responded with no response. But Luke was terrified and I think he was too little to hide it.

My dad did other things to scare us in the car. He drove fast and laughed at us if we tried to put on our seat belts. He drove fast over hills. He would taunt us by saying that he had no idea what could be waiting on the other side of the hill. I was big enough to see out of the window, maybe they weren’t. There could be a family walking on the other side of the hill….a dog…another car and he wouldn’t be able to stop from hitting whatever could be on the other side. Sometimes he would drive up hills on the wrong side of the road.

I’ve had nightmares about him driving fast or going up steep hills not knowing what could be on the other side. I think it was also the root of my struggles with a fear of driving, especially hills. I was afraid of hurting someone. I was afraid of not having control over that. I couldn’t see what was ahead of me.

Today I am obsessed with conquering my fears. If the fear wins, so does my dad.

I built a big wall around myself. I have a thick shell. But maybe somewhere inside is that little girl who is kind and caring.

I don’t think that my mom even knew about the things our dad did when she wasn’t around.

 

Luke’s visit, part 2

I suppose since you have a big house now that you will be hosting Christmas this year.

It wasn’t the first time I heard this comment…

I told Luke that I didn’t really like an aunt and uncle of ours.

Why?

Because of the time that they came over for supper when we were kids.

What about it?

They had the house with the piano. They wanted us to come live with them if mom and dad left us forever. That evening while we were eating, Matt hurt our aunt. It wasn’t unusual for Matt to hurt someone.  It was our aunt who was acting strange. She locked herself in the car crying hysterically. She could not be comforted. I’ve never seen her so upset before or since.

Suppose that our aunt was attacked and Matt triggered her memory of it.

Aunt left and didn’t come back. They said that they didn’t want us to come live with them in their house with the piano anymore.

Who told you that?

Mom. She cried and said that no one cared. She said things would be different if her mom was still living.

How old were you?

I don’t know, maybe 8 or 9.

You were too young, why would she tell you that you were unwanted?

Something strange happened in the course of our conversation. For the first time I was able to see the event through adult eyes.

I was able to let go of the rejection of 30+ years. My aunt has always been kind to me, but I didn’t trust her since that night. Other family members cared. They were busy living their own lives. Some were only a few years older than me. They saw what was happening but didn’t know what to do about it. Some lived far away. The ones that were near did help.

My mom just needed more help than anyone could reasonably provide.

So I became the helper. I became the adult.

I have forgiven my family.

Someday I will forgive my mother too for my lost childhood and for giving me this heavy weight to carry. I think it is time to start unpacking my baggage.