Finding the key

I had a visit with my counselor to try brainspotting as an attempt to heal from the trauma I’ve experienced in my life.

I wanted to tell you about it before I forgot. It was a strange, almost mystical experience. My counselor asked me to bring in an item that would remind me of something tragic. I talked about the experience and then she had me follow a pointer with my eyes until I felt the strongest amount of emotion. I also had to focus on a part of my body that I felt that emotion in. I picked my stomach, because when doesn’t it hurt?

I was asked to visualize the negative emotions leaving my body. I thought of my grandma, that she was with me although she has been gone over 10 years now. I imagined blue birds taking the negative emotions from the top of my head from my straw like hair. Later I imagined that all of the negative emotions and pain that I experienced were worms that spilled out of my mind to feed the birds.

There was a great outpouring that the birds carried away, then later balloons came to assist the birds. I told my counselor that it felt weird. I was very skeptical and thought it was rather stupid at first. I am a very logical person, structured and rigid. There is no room in my mind for fantasy, make believe, imagination, playfulness, and magic. My world is not sparkly, it is black and white. My counselor said that is how I dealt with the trauma in my life.

After the appointment, I felt a sense of peacefulness that I can’t remember experiencing before. I did feel some brief intense anxiety that the birds flew in and took away. I slept for threes nights in a row without insomnia or nightmares. I even slept through a storm. I can’t remember how long it has been that I slept for three nights in a row without insomnia or nightmares. It was amazing.

But then it went away. The sadness settled back into my mind. Every time the balloons wanted to carry it away, the birds popped the balloons with their sharp beaks. Then the insomnia and nightmares came back.

There were two other times after that when I felt like the birds were taking out the worms and decay, on my first run after the 50k and when I was getting a massage.

Now, several weeks later, I am on lock down. The rational and logical part of my brain took back control. It is all rules and structure. There aren’t any feelings, good nor bad. I am back home where I feel safe.

But now I know there is another world of childlike wonder locked away somewhere in my mind. There is hope that one day I will once again be able to find the key to peace and serenity.

 

 

Unrest

I don’t want to do this anymore, this whole life thing. I want to hibernate somewhere, hidden away under cover.

I don’t know how I got to this point. I’m just tired of it. I’m just tired.

I couldn’t fall asleep last night. It was after midnight before I silently fell into slumber. This happened twice this week although this type of insomnia rarely happens.

I couldn’t stay asleep last night. I slept restlessly. I awoke several times. At 4 AM I had to go to the bathroom. This is the type of insomnia I call home.

I had one of the most intense nightmares that I had in a long time. I was a little girl. I was brought to an empty house because there was going to be a lot of blood, my blood. I went willingly because I knew I had to be the sacrifice. I was afraid. I was going to be hurt badly, but I would live through it. Before anything happened, the owner of the house came back. She looked like a grown up me. I told her that she needed to leave because she would get killed for being there. She tried to help me, we ran away. She was killed and I hid in the closet terrified knowing I would be next. Now we both were going to die because she tried to save me.

I awoke at 5:30, less than an hour before my alarm was going to go off.

Today is the day that my video is being posted. I didn’t know it until this morning. I hate the video. I want to destroy it. I feel so anxious about it.

Why do I have this need to tell everyone about the things I’ve experienced? I just don’t want to do this anymore. I don’t want to write. I don’t want to blog. I want to disappear off the face of the earth like I never even existed.

I thought of strange things. I remembered the book my mom used to read to me about Toad and Frog. They left the door open and winter came in. They were cold, sad, and lonely. They made soup out of their tears. It was almost as if the hauntingly sad child me came for an unwanted visit. But to cast her away would destroy us both.

I struggled to find the motivation to do everything I needed to do. Some days are like that. I’ve been stirring up my demons. But I was able to make it through. It is hard to do when my body and mind doesn’t let me rest.

Maybe tonight I will sleep.

Unrest.

 

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.

More than a shot

I took a pregnancy test today.

I had to take the test before I got the MMR vaccination which contains a live virus. Back in the 1990’s, when I was pregnant, my titer showed I was not immune despite receiving the shots in the 70’s.

I decided to get a booster shot because of the recent outbreak and my love for international travel. I might want to go on a mission trip in the next couple of years which will also take me off the beaten tourist trap path.

I started to think a bit more about vaccinations, more specifically the MMR vaccination. With the measles outbreak, I saw a lot of hateful comments made towards the anti-vaccination folks. I saw babies that wore shirts in photos saying, “I’m vaccinated because my parents aren’t morons”. I found this to be offensive because I’m sure most parents that don’t vaccinate are not morons.

Perhaps my opinion is not popular, but stick with me for a moment.

I had my first baby in 1998. In 1998, an article was published in a medical journal linking the MMR shot to autism. It caused a huge scare that I believe hasn’t been fully eradicated to this day. At that time, I was more fearful that my children would be severely autistic like my brother than to get measles, a disease that I’ve never seen anyone contract in my lifetime.

Later, after the article was published, we were told that the link was a sham. Being a very logical person, I wondered what kind of medical journal would publish crap research findings. Can anybody publish any research article that they want in a supposedly reputable medical journal?

I also thought about conspiracy theories. Here you have huge pharmaceutical companies making big money off of vaccinations pitted against a small probably under funded research doctor. Of course there wouldn’t be a link. Follow the money. What were concerned parents supposed to believe? You can’t just erase something you already saw. Shame on the journal for publishing the article in the first place if there were so many issues with the study’s validity. It caused so much unnecessary fear.

It was horrifying and I struggled with making the decision to have my children get the required vaccinations. I am happy to say that my children are fully vaccinated. I thought the best way around it was to vaccinate my children with the MMR shot after they safely passed the age when most cases of autism are diagnosed.

I feel angry with people who quickly judge others for not vaccinating. They are usually not morons, they might just be fearful like I was. My babies were born at the height of the autism linked to vaccinations scare.

I think that most people who choose not to vaccinate have their reasons not to. It is not lazy parenting. Believe me, it is a lot more work to choose not to vaccinate. I did receive some criticism for doing things on my timetable. But even if there was a small iota of a chance that vaccinations caused autism, I needed to be careful. Where those people that shamed me going to come in my house and take care of my child if he/she became autistic?

I honestly don’t know if I would have the strength to live through it again this time as a parent.

I have a lot of respect for people that grew up with a special needs sibling that end up becoming a special needs parent. I don’t think I have the courage to fight that battle twice.

I get angry about talk of forced vaccinations. Shouldn’t parents have the right to make that choice for their child?

I think pro-vaccine people would be more successful listening and being empathetic to the concerns of parents who don’t want to vaccinate. Don’t treat them like they are a bunch of morons because that won’t get you anywhere. Morons blindly follow. But educated people question and try to make the best decisions they can.

I am pro-vaccination, but I strongly believe that the parents should make the decision and be treated respectfully whatever they decide.

 

 

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.

 

Hurt again

I felt a burning fire rage within me today. I think it was the combination of a lot of different things that ignited the fiery red flame.

Yesterday I wrote in my book about one of my most painful early adult experiences. Previously in my writings, there seemed to be a separation between what I was saying and how I felt. There has been an insulation protecting me from the words. Yesterday it was removed and I felt angry.

My mom always told Matt that it wasn’t his fault he was violent. Sometimes she told him he was having a seizure after being exposed to loud music. Most of the time Matt was told that he was having an allergic reaction. It was an accident and not on purpose. The school told my mom that they wanted Matt to be told it was wrong when he hurt someone and to have consequences for his negative behavior.

That never happened. Six months later Matt got arrested at school for assaulting his teacher’s aide. She was pregnant at the time and it took 2 adults to get him off of her. Matt’s aide was my childhood best friend Shelly. I was the maid of honor in her wedding. We were best friends forever, or so I thought at the time.

When I got married, Shelly wasn’t invited to the wedding. I had to choose between my family and my best friend. My mom had the attitude of oh well you were growing apart anyway. But if we grew apart and the friendship ended it would’ve been my choice, but it wasn’t. It tore our whole friend group apart.

It was very painful to lose a best friend, all my close friends really because my brother attacked her.

I was rage cleaning this morning as a result.

I had to take a step back from running. My Boston marathon friend contacted me to go running again. We ran 8 miles together at breakneck speed. Then she told me that I really needed to work on hill training. I pushed it really, really hard and ended up hurting my ankle. Now just walking gives me pain.

Something else happened too. Someone I know told me the story of how her son recently fell asleep while driving and caused a fatal accident. After hearing her story, I started feeling anxiety driving again. It started by not sleeping well one night, then driving Arabella and her friends somewhere for her birthday. I started to worry that I would fall asleep and kill someone too. For the last couple of weeks, my driving anxiety has been back and I am worried that it is going to turn into full blown anxiety again. I worked so hard to get over it.

I have just been feeling angry and frustrated by the things I have experienced and the things I am experiencing. My son had some friends overnight and I waited until 1 PM to vacuum near them. I didn’t say one word to them but they seemed so terrified of my anger that they went from a dead sleep to packing up all of their stuff and leaving.

My son saw me rage cleaning and asked if he did something to make me so angry. I told him that it had nothing to do with him really. He pressed me for more details and I ended up telling him about my childhood for the first time. He is almost 19 and will know all about it when I publish my book anyway. We had a really nice conversation for almost 2 hours. In that time my anger dissipated.

I’m not sure what is going to happen, but I plan to keep writing no matter how hard it is or gets. Sometimes it is very hard to stir up my demons because I don’t know how I’m going to react. This has been my biggest obstacle so far, but I refuse to give up. After all, that is how I hurt my ankle. Sometimes I need to learn when it is time to ease up. That’s never been my strong suit.

It sounds kind of funny. Most people complain that they don’t have my determination, but all I want is the ability to relax and not be so hard on myself. So here I am, hurt again.

Allergy sufferers

This morning my blog friend LA wrote a post that really hit the nail on the head for me about allergies. LA was on a train and sat next to a woman who said she was allergic to LA’s perfume. LA got up and moved seats. But should LA have catered to the allergic woman or should the allergic woman offered to move? Whose shoulders does that responsibility fall on?

All my life I had to cater to my autistic brother’s allergies. He would become violent if he was exposed to allergens. That is what I was always told and that is what I always thought. But as I have been writing my book, in retrospect I have been able to see the situation with my blinders off.

It’s not that I don’t believe that Matt has allergies. I find it hard to believe that allergies could cause someone to act violently towards another person. He doesn’t sneeze, cough, or break out in a rash. It is possible that an allergen could cause a physical symptom that causes him to be irritable and lash out. But I no longer believe that smelling someone’s perfume could cause him to be violent.

Matt acted violently because he was severely mentally ill. He needed to be told that his actions were wrong whether he was capable of controlling them or not.

Meanwhile, we did crazy things to cater to Matt’s allergies. I wasn’t allowed to wear perfume. My parents got rid of their wood stove. Newspapers weren’t allowed in the house. No one was allowed to park in the garage for awhile because of auto exhaust fumes. My parents replaced their new curtains (new smells) with old blankets. We had to evacuate if the neighbors were spraying their fields. There were many other things as well that were very inconvenient and extreme.

But, guess what? With all of our catering, Matt was still violent.

I don’t cater to everyone anymore. It was hard at first since it was so ingrained in me to do so. Now if I host a party or holiday and I am expected to do all of the preparation, I make what I want and tell people if that doesn’t work for them to bring what they can eat for themselves. Believe me I’ve tried and I just about went crazy. This person is gluten free, the other is dairy free, another black pepper free, pork free, organic only. I wish I was kidding.

I’ve learned that the best way around it is to tell everyone what I am making and if that doesn’t work for them they can bring their own food (or host the party themselves!). I’ve made peace with the fact that I can’t please or accommodate everyone.

I do feel bad for people who are miserable from allergies. But it is also inconsiderate to  expect others to cater to you if your allergy is not life threatening.

Hoarders and clean freaks

This past weekend my mom came over to help me weed. I didn’t ask for help, she just saw the need.

It got me to thinking about something that I couldn’t place which was bothering me. There was an in-congruence in my thought patterns. My mom is one of the hardest workers I know. Yet she has one of the messiest houses I’ve ever seen. How conflicting the thought was in my mind. I always thought that hoarders were lazy. But are they?

My parents are the biggest hoarders of magazines and papers. They still have a phone book from the 1970’s from a different city that they lived in out of state. They have stacks and stacks of papers that litter the living room floor and all available counter spaces.

My parents kept almost all of their clothing since they got married. Their closets are full of old clothes and jackets. It comes in handy for me when I am going to a costume party.

My mom hoards food. Her cupboards are stocked full of canned goods. All of her refrigerators and freezers (they have several) are full. The refrigerators always smell like rotten food. It is very important to check the dates on items before you eat them. The freshest foods are in the grocery bags that line the dining room floor.

Thankfully for me, my mom kept every school and personal journal documenting Matt’s life in great detail. It has been very helpful for me in writing my book. I don’t think that I could be writing as powerful and moving of a story without her help.

Their hoarding always suffocated me. It was hard to clean the house. The counters were so full of stuff that there was no place to move anything in order to clean it. Then you just put the items back on the cleaned areas. I always felt like I was emptying the ocean a tablespoon at a time. It stirred within me feelings of hopelessness.

My brothers and I are not hoarders. It bothers me when things are cluttered. It fills me with despair. The strange thing is that my parents feel the opposite way. It causes my mother emotional pain to get rid of things. My mom threw out my brother’s baby blanket when he was in his 30’s. She cried and lamented about it for days even though my brother didn’t want it. She tries to get rid of things but it is very upsetting to her.

Sometimes my mom will clean out the cupboards and closets. Instead of throwing things away, she gives them to me. Recently she gave me a bag of my dad’s old worn out socks. It is a little easier for her to give things away then to throw them away even though she must know that is what I will be doing with it.

It is hard for me to understand how my mom’s feeling are tied up in useless things.

It must be very hard for my mom to see her house in the shape that it’s in. She is embarrassed to have anyone over. I wish I could understand. Yet I am glad I do not.

I feel guilty for my mom’s help around my house when she needs it more than I do. It’s overwhelming to try to help her. I would just come in and start throwing things away and she couldn’t handle that. I know, I’ve tried. I feel like my hands are tied. But I know that my brothers and I are going to end up throwing most of the stuff away or getting rid of it someday.

I need to be careful in my own life so I don’t end up on the opposite spectrum. I have a tendency to be a clean freak. Dirt and clutter stresses me out. I want everything to be clean, neat, and organized. But I try not to let it control me.

I also have relatives that are clean freaks. We once went camping with my Aunt Jan. It stormed out and we ended up huddling in my aunt’s garage freezing because we were too dirty to be allowed into her house. I also have an uncle that would host parties and follow his guests around with a vacuum cleaner. I’ve also witnessed him on his hands and knees scrubbing the bathroom floor while guests were over.

I don’t think people at either extreme seem happy. I tolerate uncleanliness when guests are over. But it’s also kind of funny that I picked this topic to write about as I am freaking out about cleaning my house and weeding everything this week to have a perfect house for my son’s graduation party.

But since I grew up in a house of clutter and hoarding, I realize if people really care about me then they are willing to overlook some slight imperfections.

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?

 

 

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?