forgotten

One of the hardest parts about being a special needs sibling is being forgotten. It’s like I don’t even exist. Forgotten, no one would miss me if I was gone. It’s hard to get over the voice in my head that is on repeat saying that no one really cares about me.

Yesterday I went out to eat with my mom. At the restaurant, my mom noticed our previous dentist sitting near us. He lost his license to practice dentistry over a decade ago. He wasn’t the first provider that we had lose his license either. Let’s just say when traditional medicine didn’t heal my autistic brother, my mom went the alternative medicine route and some of those doctors were quacks.

My mom went over to talk to our dentist about Matt. She showed him all of Matt’s most recent pictures. On the way out, we said good-bye. I told my mother that the dentist probably remembered me. After all, I was the patient with the small mouth that no dentist could numb for fillings. My mom talked to the dentist some more about Matt, then asked the dentist if he remembered me.

The dentist said that he did not remember me. He had a very large practice and wasn’t expected to remember every patient. I was in his office so often that I still remember his secretary’s name. It was like a kick to the teeth. The polite thing to do would’ve been to lie. Yes, I remember you. How are you doing now? Instead he asked for my mom’s phone number because he would like to schedule a time to come out and visit Matt.

I told my husband about the interaction and he was rather appalled. But I told Paul this was the typical response.

As a teenager, the rare time I was with family friends or family, they would pepper me with questions about Matt. They asked how my brother Matt was doing with the same sympathetic frown on their faces. I was barely holding it together, but no one ever asked how I was doing or how my other brothers were doing. Yeah, just trying not to swallow a whole bottle full of pills here. But who cares?

As a child, I wanted something to be wrong with me so that I would be loved too. My babysitter told me if I wore her thick glasses and looked in the mirror, I would need glasses too. I wore her glasses looking in the mirror with a metallic gum wrapper covering my top teeth with a paper clip. I wanted to be special too.

I had a lot of stomachaches as a child. I could barely eat I felt so sick. But I wasn’t as sick as Matt. I didn’t need to go to the doctor. Matt’s valve between his stomach and intestines closed, and he almost died. What was I bellyaching about? I just wanted attention.

But as I am currently facing health issues, I wonder if I am just being paranoid. Maybe it’s just me wanting attention. Maybe it’s nothing and I am just crazy. I am probably just being selfish to focus so much on myself. Look at Matt.

It was always that way. It will probably always be that way. Seriously, who cares anyway? My thoughts and feeling don’t matter. I don’t know why I even bother.

I remember a special occasion with family several years back. We were supposed to go around the room and share something special that happened in our family over the past year. My mom spent 20 minutes in tears talking about all of Matt’s medical needs. She did not once mention that my brother Luke, who wasn’t there, got a HUGE promotion at work that year.

We are the forgotten ones. It makes me feel both sad and angry, hurt. But it was always like that. I should be used to it by now.

I didn’t feel that way about my dad. He pretty much checked out altogether. But in my mom’s life, the sun will around revolve around her special son Matt. Our accomplishments don’t matter. It doesn’t matter that Matt hurt us or our children. We should all work together to worship our god Matt because his life sucks.

My mother is a great person, a martyr perhaps. I feel guilty for my disloyalty. But the one thing that grieves me deeply, far beyond the memories of the physical pain of being attacked by Matt, is being forgotten. It’s hard to get over feeling like no one cares about me. Sometimes it’s hard to be caring towards myself. I feel selfish for sharing my wants and needs.

Forgotten.

 

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?

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.

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.