Anxiety

Control freak!!

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If I was the world’s most articulate writer, I think I would still miserably fail to communicate to you the world of chaos that I grew up in. I didn’t have any control over my environment. We would often try to go somewhere and end up going nowhere at all. At times, I felt like I had no control over myself, my emotions. I certainly had no control over whether or not my autistic brother Matt decided to inflict pain on my body. What may have been even worse was seeing Matt inflict pain upon others; friends, family members, or complete strangers. That may have been harder then being hurt myself. It was hard to place hatred upon my brother when he didn’t seem to have any control either.

I decided that I needed control and structure in my life. I became a control freak. I was not going to allow anything or anyone to control my life. I certainly was not going to allow addiction or vices of any sort control me. But then a couple of weeks ago, I realized I was wrong. I was allowing control to control my life. Then I realized that everything I am afraid of has to do with a lack of control. 

I thought I was afraid of heights. Being on an airplane freaks me out. But I don’t mind looking out the window. It is the hours of turbulence, grasping the sides on the seat in panic that got me to seek help. I felt trapped in a tight area. A person that I didn’t know had control of my life. You say that flying is safe compared to driving. Yes, I agree, that is why I was terrified of driving too. Several years back I was afraid of driving, especially over bridges and on highways. It got so bad that at one point any driving on the highway would bring about a panic attack. It wasn’t long before I realized that my biggest fear is total lack of control. There was nowhere I could pull over on a bridge or a busy highway. The big concrete partitions locked me in. Trapped. I refused to stop driving. It has been almost 2 years since I panicked while driving. I was driving through construction. There was nowhere to pull over. I started to sweat profusely. I opened all the windows. The music from the radio unnerved me. The tunnel vision started, darkness creeping in until I thought I would pass out. I slowed down, driving erratically. My heart beating fast. I always pulled off the highway at the next exit feeling like a total failure bracing myself to face it again, feeling exhausted. I refused to let fear control me. 

I think the secret to figuring me out is making me feel like I have control. My husband is very good with giving me a false sense of control. I am ok with that. I keep my days very structured, any average stalker could figure that out. Once again I need to find equilibrium. In response to total chaos, I allowed the pendulum to swing too far in the opposite direction. I need to let go….

Medal and crown recap

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I feel like I got hit by a truck! I think I figured out what happened to me at the marathon on Saturday. I may have injured my IT band. After I hydrated myself, the cramping should have gone away. Instead, the pain is starting to go away now. A running friend said that the pain I experienced in my left leg may have been me unconsciously overcompensating for my rolled right ankle injury a couple weeks back. It makes sense to me. I also felt incredible pain rising from a sitting position. It is getting better, so I hope next week when I start running again everything will be healed up. 

Sunday I helped clean out my grandma’s house. I refused to help out the week before the marathon. First, it is so dusty I feel like I smoked a couple packs of cigarettes after leaving. Second, I could imagine myself tripping over my feet and falling down the steps with an armful of junk. I know, I have always had an active imagination. 

Then yesterday was my crown on the tooth that doesn’t numb. Incidentally, I ran into an acquaintance yesterday morning while taking my kids in for physicals. We started talking and the conversation moved to dentists and my appointment in the afternoon for a crown.  She said that the strangest thing happens to her when she has crowns, her teeth don’t numb. She gave me great advice that even google couldn’t give me. I felt my prayers were answered running into her. Another strange “coincidence”. My panic lessened a little. 

Yesterday I drugged myself up and had my daughter take me in to get my crown. I asked the dentist to give me a deeper shot as suggested by my friend,  but my nerves were still shot. The deep shot really hurt. I could feel it deep into my marrow. The anti-anxiety sedative did little to calm my nerves, but I didn’t feel a thing! It was uncomfortable though, my mouth is swollen and bruised today. It was hard to eat or drink anything without sensitivity or tenderness. I got home from my appointment and slept. Then I slept the whole night through, the first time in 3 weeks. I am still very run down today. I feel like I ran a marathon and had my teeth rearranged. But I look like my husband beats me. I hope tomorrow is a better day. 

Medals and crowns

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I didn’t share this with you earlier, tomorrow I am getting my first crown. I guess this wouldn’t really be a big deal with the exception that I am getting it done on a tooth that 2 dentists have failed to ever numb. That’s right, I felt them drilling on this tooth every single time. Dental pain is the worst. I thought it was a fluke thing until my daughter had the same thing happen to her on the same tooth. God forbid, is it genetic? Even getting my teeth cleaned strikes a chord of panic within me. So, not only was I feeling horrified about my first marathon yesterday but I am horrified about my first crown tomorrow. My dentist said that he will be able to numb me, but I think he is a lying sadist. 

It reminds me of when I was a young girl of about 4 or 5. I got a little piece of gravel stuck in my eye. My mom had to take me to the ER. I laid down on the table. The doctors told me to hold still and open my eye. Instead, I lashed out and fought them. They told me they would strap me down if I didn’t cooperate. They brought what looked like an ironing board out and strapped me down to it. One doctor forced my eye open, the other came at me with a tweezers while I screamed and cried. It was horrifying. When it was all over, they said I was a good little girl and they gave me a sucker. But I really wasn’t a good little girl, was I? They did have to strap me down after all. 

So, after tomorrow I can tell you what is worse…..giving birth? Running a marathon? Or an hour and a half of dental pain? 

Real life Tetris 

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What is easier, training for a marathon or blogging about painful events in my life? In analysis, they both take approximately the same amount of time per week. I would say, without a doubt, that training for a marathon is much easier. I only feel tired and perhaps physically sore after running. I feel tired, sometimes upset, depressed, and emotionally sore after blogging. 

Is there anybody out there? Am I all alone? Where have the other siblings of the disabled gone? Have you escaped? Have I not? How can I? Why can’t I? I don’t want to do this anymore. It is too personal. The feelings are too raw. I am picking away at old poorly healed scabs. This worries me. 

I feel very overwhelmed in general. I was just notified of mandatory practices for my kids at school the next couple of weeks that conflict with other mandatory practices. When do I have time to work? What about work? We are picking up our biggest client ever the end of this week. It is great, but overwhelming. Will I be able to perform? Will I be able to handle the work? I feel like I am playing Tetris right now. Pieces falling haphazardly on other pieces and nothing fits. I am fighting to stay in control. I worry about the things I can’t control. Am I all alone?

Up north, part 3

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This past weekend I was up north with my daughters. Luke’s wife, Emily, and I threw a bridal shower for Mark’s fiancé, Carla. This is the start of another strange happening this month. Emily recently had surgery and was having some health issues related to this. She ended up driving herself to the closest ER an hour away from the cabin after a sleepless night. I was running later than I wanted to the morning of the shower and had a lot of errands to run. Through a series of strange events, I ran into my sister-in-law at the pharmacy in the middle of nowhere hours from her house. My daughter rode back with her to the cabin to help keep her alert. It seemed like a bizarre coincidence and I still don’t know why things happened that way. 

It was lunch time when we all got to the cabin. Luke bought some bread to make sandwiches with the peanut butter that was there. First, he had to call our mom to make sure that this was not Matt’s peanut butter. I had almost forgotten about this very basic rule. Most of Matt’s food was labeled with his name. You did not dare eat Matt’s food without facing the wrath of my mom. Since he spent most of his life gluten and dairy free, his food a lot of times was separate from ours. If Luke put the knife in the peanut butter and touched the bread, then it would be considered contaminated. My dad would eat Matt’s food a lot of times probably just to piss off my mom. She would worry endlessly about food for Matt to the point of obsession. 

Another thing that happened, the last time we were up north my brothers put in an A/C unit. It was really hot this weekend so we were running it with a lot of fans. We had 13 people sleeping in the cabin. Matt came out to the porch angry saying that the fans were too loud, that he couldn’t sleep. My initial response was to ask Matt how long he was trying to sleep. Luke agreed. Mark was concerned that Matt would be up all night worrying. Mom went with Matt to turn off all the fans. Now no one would be able to sleep. Luke turned the fans back on after Matt fell asleep.  Luke said, “Part of this is his condition and part of this is his conditioning.” Matt never had any consequences, seems like we all had the consequences for his decisions. I felt the familiar old resentment towards my mom for allowing Matt to be the god of our lives. The god we sacrificed to day in and day out. Sacrificing the good of all for the sake of one. I hated being forced to worship and kneel before the alter of autism. 

The bridal shower went without a hitch. Haha. The future bride left saying, “See you at the wedding, if there still is one.” Mark and Carla spent most of the weekend fighting. Everyone at the shower said that Mark and Carla reminded them of my parents. That is not a compliment. My parents marriage is filled with strife. It is not something sacred, to be yearned for. I worry. My husband says I should only worry about the things I can control. 

A driving controlling fear

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Mom is a good driver. I usually feel safe when she is in control. My dad likes to drive really fast. He says that we don’t have to wear our seat belts. I feel safer when it is on especially when we go over bumps and my head almost touches the roof. Bumps always make the seat belt tighter around my waist and I have to take it off to loosen it. I think that my dad learned to drive from Aunt Grace, except she drives really slow and goes through the stop signs. 

When mom drives she has to be careful. If she puts Mark and Luke next to each other they like to laugh and do funny things while she is driving, like open the door. The day it happened she wasn’t being careful. She put Matt in the seat behind her and she was wearing a ponytail. Matt likes to pull hair, sometimes very hard. I worry that Matt might pull her hair so hard that her head will go back and we will go off the road.  I am sitting in the back with Matt. Matt starts pulling mom’s hair. Gentle tugs. 

Matt pulls mom’s hair. It is loud in the car. Tug, pull. It is hot, the windows are open. It is loud. Tug, pull. Cars are coming down off of the highway. It is hot! Mom drives through a red light. It is loud, hot, a long ponytail of hair!  Mom keeps honking her horn. Loud, loud! Cars slam on their brakes and swerve. 

My little brothers giggle and can’t wait to tell everyone that mom ran a red light. “Did I just run a red light?” asks mom. “Oh my gosh, I could have killed someone.” Mom is upset and pulls the car into an empty parking lot. Matt is upset and runs away towards traffic. Good thing mom was able to catch him before he reaches the busy street. Mom is a good driver. Mom needs control. I need control. 

Fear tires

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A strange car pulls into the driveway. Inside an elderly man and a woman about my mom’s age. The car is shiny and new. The man drives. Matt is afraid of the tires. Mom says it is her old college roommate. Matt screams and kicks the tires. The man and woman stare out the window at us. Matt screams and throws gravel at the car. Mom tells them that her life has changed and it would be best if they leave. Matt is uncontrollable. The strange car backs out of the driveway, never to return. Mom cries for a long time. 

The cure for autism part 7

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Drugs! It took a little while to get back to my cure for autism blog. The reason being that I feel a lot of anxiety about this because it will be the hardest cure to write about so far. In retrospect, I am not sure we could have coped any differently. Back in my day we didn’t have blogs, the Internet, or even many books on how to cope with a violently autistic family member. There certainly were not any books written by siblings for siblings. How does a dysfunctional family cope with almost 2 decades of constant stress and daily episodes of violence? We lived in fight or flight mode for almost twenty years! Twenty years!! Doctors could only offer one basic solution to our constant stress, medications to treat our symptoms. Every single person in our household was medicated at one point or another. 

Besides being autistic, Matt had a myriad of mental and physical health issues. He was given several different anti-psychotic medications. Some made him like a zombie, limp like a rag doll. Mom couldn’t stand that. Others didn’t seem to do much of anything or had side effects that were intolerable. One drug made him stiff as a board and he needed assistance doing simple things like walking up stairs. 

My dad had several ulcers. He was impatient, angry, and seriously depressed. I often worried when I came home to a completely quiet house that I would find that he had killed himself. He was distant, dispondent, or storming around the house angry about something. My mom was was always full of worry, anxiety, and self-doubt. Always afraid to make the wrong decision, perfectionistic. Her teeth were constantly clenched. 

Then there was me. Outwardly, I had it all or so most people thought. I turned down the opportunity to have a career in modeling to go to college which was paid for in full by my family. I always had my pick in men. I drove a red firebird in high school. I can honestly say that I had someone pass a semi in the pouring rain in a no passing zone on a two lane highway just to try to get my phone number. Do you hate me now? Most of the other girls did. 

Inwardly, I was a mess. I couldn’t sleep at night. I would go long periods of time  without eating much. Every time I ate I would feel nauseous and my stomach burned. My grades dropped because I couldn’t concentrate in school. I was put on a high dose of amphetamines which did help my ability to focus but was like drinking 10 cups of coffee. I started scratching my skin, picking at scabs, pulling out my hair. I had issues with anxiety, hyper vigilance, and obsessive compulsive tendencies. I was seriously depressed. I was prescribed the highest doses available of anti-depressants. I felt like a zombie, totally numb to all feelings. Some drugs made me sleep 18 hours a day, weight gain, constipation, diarrhea, but nothing made my environment change. I could tell when the medicines weren’t working for me when I had nightmares. I dreamed that cats were clawing up my body or birds were pecking at my skin, my skin crawled. The worst thing that happened was that I was prescribed the highest dose of Prozac and became downright unconsolable. I grabbed a bottle of pills, locked myself in my room, threatened suicide, and ended up spending a couple of days in the psych ward. But I wasn’t the only one in the house thinking of my own demise. Mark was also very depressed and was having problems focusing in school. He would hang nooses in the tree next to our house for my mother to find in the morning. He was quiet in school and at times was a target for bullies because of it. He really wanted the pain to end, perhaps even more than I did. 

Luke was hyperactive and couldn’t concentrate in school. He was always moving around in his chair, tapping his pencil, and annoying the teachers. He was medicated for ADHD. Luke dealt with the stress by partying hard. Sometimes my parents would find him out in the yard in the morning. That was if he even came home at all. 

Still no cure, not for any of us. 

(We are all living relatively happy lives now. I promise I will write about something light and fluffy tomorrow!)

Hyper Vigilance 

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I sit and watch looking for signs of trouble like a prairie dog on guard. Except no one ever relieves me from my post. I must stay alert. I can’t relax. Never let my guard down. I startle easy.  Relaxing classical music makes me edgy. Soothing piano music blooms my anxiety. I pace the floor. I feel a little trapped. Sleep eludes me, I wake at the slightest noise. Matt does not sleep either. He rocks in his bed back and forth, back and forth, back and forth sometimes so violently that he chafes his face and gets blood on the sheets. My brothers can’t sleep, Matt is too loud. Sometimes Matt is angry or dad fights with him over brushing his teeth. He can’t stand anyone touching his mouth. His teeth eventually rot. 

Mom puts the classical music record on at night in attempts to calm us on the roughest days. I can’t relax. I can’t sleep. I have nightmares. I wake at the slightest sound. Every night I wake up and can’t go back to sleep. In the middle of the night I am safe, but sleep eludes me. I can’t clear my mind. I can’t stop thinking. Worry. Hyper vigilance gives me a false sense of control over my environment. I like to be in control. My rules and rigid structure give me a false sense of security. I hate chaos. Sometimes we would make plans to go somewhere and Matt would have a meltdown. Lots of times we turned around and headed back home. I don’t like a change of plans. I accused my mother of favoritism. Why was Matt the god of our world? The rest of us were crying to go, looking forward to it. Why was it that Matt could hurt me and everyone I loved and not get in trouble for that? Why did he dictate every waking moment of our life? Why did mom ask him what he wanted to do and not us? These were all the questions I asked as a sibling. I was angry at my mom a lot even though it wasn’t her fault. I blamed her. I resented her. 

I would like to say that I am no longer hyper vigilant, that I don’t wake up to the slightest noise, that I have given up all desire to want a lot of control over my life. I am not sure that this is something that will change.