Write, right?

It’s been a busy week and I haven’t really felt like writing.

Most of the time I have no qualms about throwing it out there. But for some reason this week I’ve felt impersonal. I want to keep my distance and my thoughts to myself. I worry that I’ve already shared too much.

I feel frustrated. My thoughts are fluctuating about my writing. One day I have great confidence. My book will be a bestseller and I can’t wait to chronicle my descent into despair. The next day I want to walk away from it all and not open myself up to be vulnerable to the world.

I don’t think I’ve ever read a book that has been as personal as mine is going to be.

Word has gotten around that I am writing a book. I got a call from a publisher this week. She wants to meet for coffee to discuss my book. She said that memoirs are flying off the shelves right now. She wants me to send her a sample of my book. I am thinking about turning her down, but I am not sure if that is a smart idea. She is a small publisher that mainly publishes works of fiction.

I am not ready to deal with this yet. I want to take my time and write a great book before I worry about finding a publisher. Then I feel bad because I have some good friends who wrote great fiction books and haven’t been able to find a publisher.

The end of the summer, I will be public speaking about being a sibling with an autistic brother. My contact said that once I have my book written, she had someone interested in publishing. I would prefer to publish my book in the mental health memoir genre. Now I will need to reach out and contact them to see what my options are. It is all very confusing as a first time author.

All I want to do is write my book and not worry about anything else right now. The publisher said that if I finish writing a book, I will find myself in the 1% of the population who has. That is rather exciting, but I have no interest in being an author.

I just want to write my book. I’m not sure what I’m going to do after that. I can see myself doing public speaking and being an advocate for families, especially siblings, of the disabled. But I haven’t even done my first public speaking stint yet. Maybe I won’t like it. Maybe I won’t be good at it. The thought of public speaking about something this personal is starting to fill me with anxiety.

I’m not sure where this path is going to lead me and I am filled with doubt. But I think I need to keep writing.

Write, right?

Fortune Cookie Wisdom #19

You have many special gifts, go experiment with them!

I really like this fortune cookie.

But how do you know what your gifts are? I think the best way to find out is by trying  new things.

Last summer my mom retired at age 70. She was really quite miserable after retiring because she really loved her job. She even got an ulcer shortly after retirement. But then she started trying new things. She started a sewing project with her sister-in-law. Once a week, we work together doing genealogy research. She discovered that she really has a passion for history. She wants to start volunteering at the literacy council.

My husband’s step-dad Darryl also retired recently. He, like my mom, has a hard time sitting around doing nothing. He decided that he wanted to be a first responder and signed up to take EMT classes. He also joined his church choir which always practiced during the time he was working.

I wonder what other ‘gifts’ we will discover that we have.

I found out that I love to run when I was in my 30’s and started writing a book this year. I probably won’t be running marathons forever and as of right now I am thinking one and done as far as the book goes. We’ll see where this path takes me.

I am encouraged by the others around me that even in my 60’s and 70’s, I might still find new and exciting gifts.

 

 

Outrunning my demons

Arabella skipped school today. She was very upset and was crying this morning because she did not get cast in the next community theater show.

For some reason, it brought back memories for me of the time I tried out for a community theater show when I was a couple of years younger than her. Maybe it’s just because I am almost to this point in my book.

I remember sitting outside in the sunshine with other children that summer working on my lines. I got the part of a princess. I was a pretty little girl with the sun hitting my long golden hair. I was happy and excited about my part. It made me feel like I really was a princess.

But something went wrong. My brother Matt had to spend the summer in the hospital. I had to drop out of the show because my brother was really sick. (It took me 20 years to audition for another show).

After that, my whole life changed. My brother became home bound after getting out of the hospital. I saw the paperwork for that yesterday. The original paperwork gave him a period of 2 months to be educated at home. But he was home bound for over 3 years. My mom quit her job and pulled my other brothers and I out of school as well. It was the time of the great isolation. Few people were allowed to come in and we rarely went out.

I am making excellent progress on my book. I try to work on it several hours every day. There are usually one or two days a week when I cannot. Right now I am over 30,000 words and am nearing the halfway point in my story.

I’ve decided to title my book ‘Outrunning my Demons’ with the subtitle of ‘What Life is Really Like with a Mentally Ill Sibling’.

I know my daughter is very disappointed right now that she didn’t get a part in the show. I feel bad for her. But in a few days she will be on to something else. She probably won’t even give it another thought a couple months from now. But I will always remember the summer, over 30 years ago, that I could no longer be a princess.

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 10: Make peace with the past

For a long time I’ve outrun my demons and wondered how they could still catch up to me.

Writing this blog has been a great first step in making peace with my past. If that wasn’t enough, I started writing a book. I’ve found the process to be very therapeutic.

In a few months, I will start the process of public speaking about my experiences.

In doing all of this, I realized that I missed a very important step. I need to be open and honest with the people that care about me even if I get hurt. It’s not like I didn’t get hurt in the past and move on with my life.

I spent my whole life pretending to the outside world that everything was alright in my life. Life is good now. But I want to be able to tell people I am close to that things are not alright if they aren’t. I want to be able to ask for help instead of pushing everyone away and dealing with things myself.

Right now I’m trying to look back without having blinders on. Hindsight is not always 20/20. Sometimes I tend to wear sunglasses when I look at the darkest days. I make excuses and cannot face things as they truly were.

I tell myself that what happened in my life was completely normal. It wasn’t that bad.

Sometimes I think I will just be able to throw all of my painful memories into a book, then close the book and walk away. I’m not sure if I will ever be able to do that. But I do think that my story could help others and that I will be able to make peace with my past.

Geez, sometimes I wish my goal was to lose 10 lbs. Revamping myself on the outside sure seems a lot easier then stoking the demons within. But I feel like this is what I was meant to do.

Life at 50 below

The last few days the wind chills were 50 below. That is a whole whopping 80 degrees below freezing. Have you ever wondered what it is like to live in a cold climate? Maybe you already do and we can commiserate together.

It is not terribly unusual for us to face subzero temperatures in a normal Wisconsin January. We are so used to it that the schools only close if it is 35+ below zero and we get over 6 inches of snow.

This week was rather extreme though even for us.

On Monday, we received a foot of snow. On Tuesday, the wind chills were around 25 below. Paul was in a hurry to plow out the driveway before it got cold out. He had some problems with the plow on the 4 wheeler and was asked to plow out a friend that just had surgery and my parents. After Paul got the plow fixed, he was able to plow everyone else out before the wind chill warning.

The kids had off of school Monday, Wednesday, and today.

Tuesday night Arabella and I had play practice. I drove to practice on the highway through the blowing and drifting snow. The snowplows put salt on the roads but it was too cold to melt the ice properly. There were patches of black ice on the highway that took my car towards the ditch. The ditches were already littered with cars and I passed a truck that just went in. I knew this because his lights were still on. I heard that there was a tow ban.

We made it home safely. I wore my goose down jacket, hat, mittens, and two sweaters. My son had a few friends over and they came over without coats and in shorts. They are so cool!

I was planning on working out Wednesday morning, but stayed home to man the fires instead. We have a very large old house. We wanted to keep the house warm without spending a fortune.

Although I sometimes want to spend more time at home, there is nothing glamorous about being trapped in your house when you don’t want to be. I decided to clean my kitchen washing the refrigerator and microwave.

The kids complained about how bored they were and I threatened to tell them about winters in the 1980’s. I wondered how our ancestors made it through the winter without modern conveniences like electricity and heat.

I kept the fires going all afternoon, stoking them every 20 minutes. I curled up on the couch with my cat and wrote a couple more chapters in my book. I listened to the wind howl and whip around the fresh snow. The sunshine glared brightly making it seem warm outside, tempting me to be lured out in the cold.

I looked at pictures on Facebook of tropical places, like Texas. A friend from Texas showed pictures of herself running outside in the frigid temps of 40 degrees. Jealousy stabbed me. To be able to run outside again! I would’ve been happy to be able to make it to the gym. But our world was shut down, even the postal workers didn’t deliver mail yesterday.

I went to sleep late last night checking to make sure that the dog was safely inside in his bed. I worried about the farmers and their livestock. The schools were closed and multiple businesses too. I even heard on Facebook that in WI some of the bars were closed.

I awoke early to the smell of smoke. Was my house on fire? There was a purple haze lingering in the air and a strong smell of smoke. We turned on the industrial dehumidifier to suck out the smoke which caused the boiler that heats our pool to error out and shut down from the cold air pouring in on it. We turned on the fans to get the smoke out. One of the vents was frozen and Paul used a small heater to thaw it out. The vent for the dehumidifier froze open. Paul ran outside to shove some old towels in the vent to keep out the cold air which caused thawing water to drip on electrical cords and outlets.

My parents lost power in their house today. Their house cooled down quickly which is tough since our furnaces cannot keep up running constantly when the power is on. I can’t wait to get our gas bill for this polar vortex.

It was another cold day, but I had to venture out to the gym. Thankfully it was open, although they reduced their hours.

Is it almost spring yet??

Although I complain, there is something beautiful about winter. There is nothing like curling up by the fire on a very cold day snuggled in blankets. The snow on the trees is breathtaking. There aren’t any bugs.

This weekend we are going to have a heat wave. It will be a balmy 40 degrees. Time to finally dust off those cross country skis! The guys will be heading to the lake to ice fish.

We are hardy people, we will make it through..

 

 

 

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 6: Try new things/explore different interests/be fun/enjoy lifelong learning.

When I was younger I was afraid to try new things. Now that I am older, I long for something new.

When I was younger, I never thought I was good enough or smart enough. But being older, I don’t really care if I make a fool out of myself.

This morning I went to an exercise class for the first time. I was the only one in the front row, all the other spots were taken. Front and center for everyone to watch me make mistakes. But I don’t care anymore. Besides I am old enough to know that everyone else is really concerned about themselves and how they look. If they make fun of me, shame on them.

Everyone has been very welcoming though. I took a strength training class for the first time this week and everyone introduced themselves and helped me set up my equipment. Someone even cleaned and put away some of my stuff. They even gave me helpful suggestions and asked if I was coming back.

I have to admit, I’ve been rather shocked lately about the kindness of other people.

I’ve been trying new things, like exercise classes. I also bought an Indian cookbook. I  tried making a few recipes this week. They turned out okay, although it has been a real challenge to find the ingredients I need.

The most exciting new adventure for me this year has been to start writing a book. I am still terrified about this! I’m not sure how it will turn out, but I keep pecking away at it every day.

I don’t have to be perfect nor do I even need to be good to enjoy trying new things. It took me a long time in life just to learn that.

 

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.