Speaking instead of talking about it

Last week I had a meeting scheduled with someone from the local autism chapter. In a couple of months, I am scheduled to be on a panel as a sibling talking to parents about my story. What does this mean?

I am going to be given an hour to talk to parents of autistic children on how it feels to be a sibling. An hour! I will write my own presentation where I will speak in front of parents for 45 minutes and then have a 15 minute question and answer segment.

I did not know that I would be doing public speaking. Alone! In front of an audience. She also asked if I felt comfortable being recorded. Absolutely! I have no fear in doing any of this. In all honesty, I always saw myself doing this some day.

I also told her that I started writing a book about my experience as a sibling. She thought it was a great idea and also thought that there was a niche out there for a book like mine. No one else is doing this. She said she knew a publisher that would eat my book up if I decided that I wanted to publish my story. She said that she could also link my public speaking to this blog and would do what she could to promote my book.

She said that in previous videos, she received up to 7,000 views. People just love personal stories. This is where my fear started. I am not afraid to be a public speaker. I am not afraid to talk to strangers about my very personal experiences. I think it is powerful and moving. But, and here is the big but, I am afraid to tell my story to people I know.

I am afraid of getting more followers. I am afraid to put myself out there. I am rather paranoid about being found in all reality. That scares me. I’m not even sure why. Who cares, really? I won’t let anyone in. I have never told my friends my story, maybe just bits and pieces. My friends have asked to follow my blog and I told them that it is too personal.

I refuse to use my real name. But it is getting bigger. It is starting to snowball and I’m afraid I can’t stop it. But the question remains, why do I want to stop it? Isn’t it time to let people in?

This is my struggle, I want to tell my story but I don’t want anyone to know about it. I don’t know why this scares me more than public speaking. You would think I would want to talk about it with friends and family before speaking about it to strangers.

Has anyone else ever experienced this? How do I get over this fear?

Doubt

Would you be willing to hurt people you are closest to in order to help strangers?

Fear that is toxic. Anxiety whispers an endless echoing rhyme. Worry incessant. Doubt creeps in like a vine that entwines the wrestling demons running around in my mind.

I’m not sure I can do it. It’s too risky. Who do I think I am? Do I really think this will be a bestseller? Do I really think that my poison will be a tonic? Do I really think that my story is going to make a difference, change things?

Really, Alissa, you couldn’t even save your own family.

The thoughts painfully pierce my poorly healed wounds. The scabs tear away and bleed onto my parched paper skin. The memories scratch at the demons inside. They wreck havoc on my mind. Tears slip from my eyes.

Now I understand why there aren’t a lot of siblings telling their stories. I get it now. It is too painful. If the story is going to be effective, I have to be brutally honest. But that honesty is going to hurt, not just myself but other people.

Tomorrow I have a meeting with a lady from the local autism group. She wants me to be on a panel representing siblings of autistic children in front of a group of parents. There are not a lot of programs available for siblings because they are ‘normal’. I think that is very tragic if a child needs help and doesn’t receive it because they aren’t special enough.

My goal is to write a book about my story as a sibling. I want to advocate for siblings. My thought was to write a book and donate a certain amount of the proceeds to go towards helping siblings that are struggling through support groups and therapy, etc. Just how it is all going to come together is not totally known to me at this time. I would be willing to donate my time and money to help other’s struggling through what I’ve experienced.

Maybe tomorrow I will have some answers. But as for today, I never want to write again. I want to delete my blog. I want to throw the book that I started into the trash. I feel unsettled, almost angry and sad. Restless.

I am at a crossroad of sorts. Will it make a difference? Am I just picking at scabs and bleeding out into my words? Will it heal me? Or will it hurt me and those I love? Should I just let it go?

Will I be able to help others? Am I being delusional that I can make a difference? Would it be worth it if my story can help someone contemplating suicide if  my family turns away from me? Maybe my vision is too grandiose?

I am absolutely terrified, but I think it will be worth it.

What if I don’t help anyone and end up alienating myself from my family? Do I have the strength and courage to do what needs to be done?

I have my doubts.

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.

 

 

Goal 1: Run a 50k/work out more

I may have mentioned this before, but this year I want to go to Hell. There is a 50k ultra race in Hell. Then I would like to get my first tattoo…Outrunning my demons in Hell 50k.

I started this blog originally because I read a book created from a blog about someone training for their first marathon. I thought that blogging would be fun along with running my first marathon. Then I also started talking about my demons. It has been a great process. Since this all started, I finished my 4th marathon and slayed 2 demons.

Running has been a very therapeutic way of dealing with the stress in my life. But I want to do more. I want to run further. I want to be stronger in other areas as well. This week I started a strength training class. Once we get more snow, I want to go cross country skiing. I want to do Zumba just because it is fun. Now that I don’t have a job, I have more time to exercise. I want to exercise 5 days a week and spend one day a week just cleaning my house…so basically working out 6 days a week.

If I know one thing about myself, it’s that I love to keep busy. But I also know that if I push myself too hard I could hurt myself. I’m not sure how long I will be able to keep up this pace either as I continue on the path of aging.

I really wonder how many long distance endurance runners are outrunning their demons?? I fear someday I may have to face what I am running from.

I want to be strong enough that I could live without it if I have to. I don’t want exercise to control me either. But that is another goal altogether..

 

Is it normal?

I imagined the way it would be in my mind. Thick heavy intricate snowflakes dropped with a plop on the cold empty ground. There were horses with jingling bells pulling a sleigh behind it. Hot chocolate stirred with a candy cane. It’s a picture of us trying to find that perfect tree. Even the boy with the face tattoo is there. He is the one taking the family picture of us finding that perfect tree. A ray of radiant light shines through the snow on the right one. We are all smiling and happy.

It wasn’t that way at all. It was raining and the kids had other plans. Paul ran out to the closest tree lot by himself and picked out the tree. But it was that way once. The problem is that I still expect it to be that way now. I spent some time that afternoon crying curled up in my bed playing lullabies that I once played for my babies. Is that normal?? I am off my rocker, literally and figuratively this time.

Is any of this normal?? Paul and I have been struggling lately with this very concept. This will be the last Christmas break that our whole family will be together. Angel is not planning on coming home after college this year. Alex will be graduating (hopefully) this spring and moving on. Arabella is still seriously interested in becoming a foreign exchange student.

I put a lot of time into this whole motherhood thing, and now my kids don’t need me anymore. Who am I now? I am excited to have time to myself to do the things I always wanted to do. But I never thought that the letting go process would be so painful.

Our son is really struggling right now. Although he is 18, we still have boundaries and rules because he is living in our house. We have been asking ourselves if his behavior is within the realm of normal. It was hard to let go of our firstborn, but she was heading off to college and we knew that she would be okay. We feel unsure about the future of our son.

There are really only two scenarios. Our son is completely normal. Then the problem is with us. We need to let him go even if he has to fall on his face a few times. He has to figure things out for himself. We need to let him go even if his future isn’t what we planned on it being.

The second scenario is a bit more troubling. What if he has mental health issues? Then I think it is our job as his parents to make sure that he gets the help he needs. But he is an adult. Is it our job to try to fix him?

Would you try to save someone from drowning if you knew that they knew how to swim??

I think that our son is normal. But what is normal? People have been asking us if he is depressed. I don’t think so. But I’m not sure. I want answers. I want to be guaranteed that he will be okay.

Letting go of a kid to go to college is normal. It is painful, but you are also happy that they somehow became fully functional adults with you as their parents.

But what happens if you think they are not ready yet?

This has been my struggle lately. I probably won’t get all the answers I’m searching for. Plus it doesn’t help that I have unrealistic expectations in my head of how I expect things to be…the way they once were, but no longer are.

Is any of this normal?

Peace and joy

It has been a stressful week in the season of thankfulness. I was out and about yesterday and overheard people freaking out about the fast approach of the holiday season…and my sister is coming from CA and she is always judging my decisions… cooking… stress… family. It seems rather ironic that the things we are supposed to feel the most thankful for seems to stress us out the most…family…

I have been hosting Thanksgiving and Christmas since I was in my 20’s. I took the baton from my grandma after she was no longer able to. My brother Luke stepped in to help out several times over the years. Looking back I don’t know how we did it.

I always get depressed this time of year. It never fails. I don’t know if it is just a lack of sunlight or the added stress of the holiday season. But this is when it usually starts and pretty much lasts all winter into early spring. But I am a functional depressive. I get out of bed and get stuff done like I normally do.

I have been having a really hard time lately. Alex decided to skip school the day before Thanksgiving break. Although half of the school may have decided to do that, he can’t afford to with his failing grades. Alex read the student handbook and found a loophole that as an adult he can pre-excuse several of his absences. I received a call from the school saying that he intended to do that, so we stepped in and told Alex that if he skips school he would lose his car priviledges over break and won’t be allowed to have friends over.

He skipped school and now we have a battle on our hands. I told him that the boy with the face tattoo could not come over for Thanksgiving as originally planned or stay with us over break. The boy can eat his Thanksgiving dinner at the homeless shelter for all I care. I am angry. Never underestimate the rage of a peri-menopausal woman. Why that coincides with teenage boy angst I’ll never know. One minute I want to hold him close and the next minute I want to smash his crap with a baseball bat! Happy Thanksgiving, huh??

I am also stressed out because Paul went to the doctor this week. He needs to have some tests done. I am worried about his health. Maybe it is nothing, but what if it isn’t?? What if something happens to him?? I told him yesterday that I am unhappy because I have not experienced a lot of peace and joy in my life. But the few fleeting moments I have experienced have been with him. I started crying and then moments later started to yell at him. What a hormonal mess!

The stress of maybe losing a life partner is terrifying. I am probably worried about nothing, but that is what I do.

Add the stress of a wayward son and my husband possibly having health issues with feeling like I am getting sick, having family over tomorrow, trying to find time to cook, covering for an employee who took the week off, less hours of daylight, feeling depressed and tired, aging, my baby getting her temps, getting ready for the holiday season, extra play practices for the musical, a teen minor with a face tattoo always hanging around our house, and raging hormones…Whew!

I know, I know…I really should be counting my blessings! I have a lot of those too.

 

Self-therapy breakthrough

Last night I dreamt about Matt for the first time that I can ever remember.

Yesterday I went to the mall shopping with Arabella and my mom. My mom spent most of her time worrying about getting back home because she had to give Matt his medicine. Frankly, it didn’t bother me much because I wanted to go home early because I hate shopping. It was my daughter Arabella’s choice for a girls day and she picked shopping.

As I mentioned before, my brother Matt is autistic and most likely schizophrenic as he hears voices that tell him to hurt people.

As a child Matt would:

  1. Have psychotic fits out the the blue where he would be violent towards himself or others. I don’t believe that this was within his control.
  2. Have episodes of anger where he would be violent towards himself or others when he was asked to do something he didn’t want to do. I believe this was within his realm of control.

Sometimes it was hard to tell the difference between the first and second scenario. Matt did not have a lot of chores besides unloading the dishwasher. When asked to do that, he would sometimes hit himself on the head. Matt did have a lot of trouble in school. When asked to do his school work, he would often attack his teacher or his aide.

There was a time when Matt was schooled at home due to his extreme psychotic outbursts. The district sent a retired school teacher to our house. That woman was a saint because she was strict while loving. Some days Matt didn’t cooperate and she had to leave early.

Later Matt went back to the public school. At one time, my best friend was his aide. When asked to do work, he often attacked her just because he didn’t want to do it. One time after he attacked her, she called the police. They came to the school and hauled my brother away in handcuffs.

After that incident our lifelong best friendship dissolved. And I wonder why I have trust issues with friends??

I had a dream that Matt and I were at an amusement park. I was watching him. I told him that he couldn’t go on any more rides because he hurt me physically. My mom overruled me and said that Matt could go on the rides. I told her that if she wanted to have Matt go on the rides that she could take care of him. Matt was angry at me for saying no to him so he hurt me. He spit on me. Then Matt hurled himself off of the cliff. He landed grotesquely on the pavement below. I was afraid that he was dead or seriously hurt. But the feeling that I felt the most was guilt.

I woke up realizing for the first time that Matt hurt people when he was having a psychotic fit and when he had to do something he didn’t want to do. I feel angry that he was never told that his actions were wrong. It would’ve made me feel better, like there was justice, even if he had absolutely no control over it.

Matt had total control, but no one else ever saw it that way. Was I wrong? I don’t think so. Matt was in control of our house and he wanted things his way. If we were all packed up ready to go and he wanted to stay, we stayed. If we were all too hot to sleep but he wanted the fan off, it was turned off. Anything that could set him off was taken away. One Christmas a boyfriend gave me perfume, I threw it away because I wasn’t allowed to wear it because it might set Matt off. We had to live our life around the god of what might upset Matt. Matt had to have things his way or somebody was going to get hurt.

You have no idea what it is like to be forced to worship that kind of god or how it messed up my life. I am just beginning to realize.

Chaos reigned which is why I need to live in a controlled environment today. I like my schedule, routine, and organization. It is my security blanket. I like to control the temperature and lights in my house, etc.. I learned to have control over the little things to find comfort. The things that most people don’t care to have control over like the placement of an object on the shelf. It is safe. I go absolutely crazy if someone tries to take my control away which is not even a bit logical. It gives me extreme anxiety. Turn on the lights right after I turn them off and see what happens. It makes no sense.

I have also learned to have a great amount of control over myself. Me. No one I know can beat my self-discipline with the possible exception of my brother Mark. At times I make myself hard to love. I am tough. I have high expections on others and even higher expectations for myself. I embrace pain and deny myself pleasure. I guess that is what attracts me to long distance running.

I am too old now for a baby security blanket. I have to learn to be able to rest without it. But I can’t relax.

I’ve made a tremendous amount of progress on my self-therapy.

This session is over.

Healing wounds

My mom hasn’t been feeling well since she retired. At first, the doctor thought that she was having problems with her gallbladder. But instead, she found out that she has an ulcer which she attributes to the stress in her life. I think that working and keeping busy kept her mind off of it. I understand because that is how I cope.

It has been a rough year for my mom. It’s been hard since she took my brother off of his anti-psychotic medicine due to some health issues. Matt started hallucinating again and became fixated on wanting to hurt my brother Luke’s daughter.

My mom was looking out for the best interests of Matt and my brother Luke was concerned about protecting his family from Matt. This caused a lot of conflict.

It stirred the demons from our childhood within Luke. This was a very painful time for Luke. But it was also a catalyst for him to process, deal with it, and heal. I’ve found that the healing process is very difficult. It has forced both of us to deal with feelings that are unexpected that we have never processed before.

It is hard for my mom. She says that it is very hard to deal with a child that isn’t okay. She spent day to day just trying to survive. I can understand that more now that I have teenagers. I worry all the time about how the decisions my son makes will affect his whole entire life. It’s a heavy burden to carry worrying that your child is falling but nothing you can do will pick them up. I somewhat understand.

Luke feels a lot of anger towards my mom for favoring Matt over him and even over the safety of his children. Matt will always be first in my mother’s life and I have come to accept that. I was once in Luke’s place when Matt wanted to hurt my kids. I had to have boundaries. I had to be the bad guy. I had to isolate myself from my family when I needed their help the most. I understand.

It’s not easy and there isn’t an easy answer. Some good has come out of it though. Luke started the healing process. We have been having a lot of deep conversations and working through this together. For the first time, we have each other. Sometimes good can come out of bad. This has given us strength that we never thought we had.

Matt has been back on his medicine for awhile and is passive again. The voices in his head have been quieted. It’s surprising how long it has taken for the rest of us to heal our wounds. Slowly, surely we are on the mend.

My psych eval (25 years later) parting thoughts

Sometimes the trip down memory lane does not take us down a smooth path.

I admit that this series was not easy to write about. I actually did most of the writing over the first weekend when I had more free time than I usually do to overthink things. I spent hours on the recliner under a blanket next to a cozy fire. I felt cozy on the outside, but inside I was stirring my demons.

At other times I wrote when I was very busy and didn’t have a lot of time to think. In those times, I felt nothing about what I wrote. Disconnected. No feelings, just the facts…but insightful none the less.

I started reading a new book I ordered online about growing up with a disabled sibling. I threw all caution to the wind and dove in. I felt miserable and moody. I pushed away everyone that tried to care about me. At one point I broke down and sobbed. People, this is not how I normally act.

I questioned if I was a worthy person. What is my purpose? I worried. I had bad dreams that my son found out about my blog and hated me. For a brief moment I contemplated deleting this blog altogether. It is way too personal. It is getting to the heart of where my demons lie.

One morning I woke up crying after dreaming that my daughter died. The nightmares came back.

I wondered if I could give the blog a mature rating. Then I laughed about the thought. Really? Is me blogging about my childhood unacceptable for children to read??

I felt anger towards my parents for the things they allowed to happen. I felt guilty for feeling angry. It wasn’t easy for them either. My parents are old and need me now. But where were they when I needed them? I still believe that my mom did the best that she could.

Writing heals my soul. But why does healing have to hurt so much??

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.