Coping

The incident at the public library

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Once, for a very short time in my life, I was a compulsive hand washer. It started after a frightening incident in the library parking lot that happened when I was 13 with my grade school best friend, Jody.

I met Jody in kindergarten. When I was really young my parents had me stay with Jody for a week when they took my brother Matt to the hospital. At the time, Jody’s parents were going through a divorce. I remember sitting on the steps with Jody at age 6 listening to her parents fight. Things may have been thrown, I don’t recall for sure. Just a lot of noise, a lot of yelling. I had my grandparents pick me up before the week was through.

I don’t know why Jody’s mom didn’t like her dad anymore. He was a fun guy. He loved to laugh and would buy us soda at the bar. One night the roads were way too icy to take Jody and I to dance class, so we went to the bar instead. He told me not to tell my mom as she would probably worry. I also went up north with Jody, her dad, and his girlfriend for the weekend. He had to stop halfway there because he was tired and needed a drink at the bar. Lots of quarters for soda that night. I think we may have even put some songs in the jukebox. When Jody turned 10 she had her birthday party at you guessed it, the bar! Jody was a lot of fun too.

When my mom told me that I could bring a friend with me to the library that night, I chose Jody. Once a month, my mom attended a support group for mothers of the disabled at the library. Most of the time the meetings ended after the library closed which is what happened that night. It was a warm summer night, so we waited for my mom in the car. We were talking when 3 older boys showed up at the car on bikes. They saw us and tried to get in the car. We locked the doors, but it was hot. We had to roll the windows down a little as the heat was stifling. The boys tried to pry their fingers in through the crack in the windows. They banged on the glass. That kept trying the car handles over and over, rattling on them, trying to get in. They taunted us, put their penises against the glass, and held condoms against the windows. I found the incident very frightening. 

It was after this happened that I washed my hands over and over. I washed them until they were cracked and bleeding. For months I refused to touch the car handles that those boys touched to try to attack us. Everything they touched felt unclean to me. I wouldn’t touch those handles even if it meant that I had to sit in the middle of the back seat. So I washed and washed until the memory and terror of that night faded. At least I had control over something. 

 

 

Waiting….for bad news

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Waiting…I sit here waiting. Worried. Waiting for bad news. I know it is going to be bad. I think of all the times that we didn’t get along. The guilt of feeling annoyed by you most of the time. You aren’t a bad person. You just talk before you think. My daughter called you rude the last time we saw each other. You commented that my hair looked terrible. Did I mean for it to look so bad? Did my finger get stuck into a light socket? I told you that I wasn’t offended, that your comments about my hair didn’t bother me. It didn’t bother me. What did bother me is all of the empty promises you made to my kids your only grandchildren, the times you said that you would show up and didn’t. 

Now I am thinking that you might not be here to see your granddaughter graduate next year. I feel terribly saddened by this. When I saw you last weekend, you did not look good. You were out of breath, wheezing, and coughing. The cough that lasted over a year. You have been continually sick for months at a time with head and chest colds. Your doctor thought that it might have been some of your medications, that once he took you off of the offending pill that you would get better. But you got worse. Now you are in the hospital, waiting. We worry and wait, wanting the distraction of work but have difficulty focusing. What do we tell the children? That the doctors think that you have lung cancer. So we sit here waiting, waiting for the bad news.

Scabies and other things that bug me

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My autistic brother Matt has been in a group home for about 5 years now. Begrudgingly, my mother decided that it was better for her to choose a home of her liking versus having us do it after she is gone. It was something that my parents put off doing until Matt was in his mid 30’s and they were their 60’s. It wasn’t an easy adjustment, but it was mainly good. Well, except for the scabies. That’s right, one of the care providers brought scabies to the house. This ended up resulting in my brother getting scabies which he needed 3 pesticide treatments for. He had a major allergic reaction to the treatments which caused his hands to blister, peel, bleed, ooze in a red angry rash. My brother went around looking like he had a flesh eating virus for the past 6 months. The care provider refused to seek treatment and kept spreading it to this group of people again and again until they were forced to let her go. My brother is starting to finally get better. It was something so disgustingly horrible that I find hard to describe without pictures. You wouldn’t want to see them anyway. 

In response to all of this, my mother did some extreme allergy testing. This resulted in some extreme responses while we were up north this last weekend. First of all, the sun revolves around Matt. Remember me saying that last time up north when it was very hot Matt was angry because he couldn’t sleep? He wanted all of the fans off so my mom turned them off. So what? Who cares if he is angry? What, is he going to hurt our children like he hurt us? About the diet, my mom was going to wash off the grill after we made hamburgers just in case there was something in the seasoning that Matt was allergic too. That is too extreme. When he comes to my house he brings his own hand towel because he may be allergic to my detergent. That is too extreme. He also brings his own soap. That is too extreme. Matt is allergic to one kind of sugar and not another, but the canned food label only says sugar. Perhaps we should call the company and ask what kind of sugar they use. That is too extreme. He can no longer have baked beans because he is allergic to the pork now. 

Mark and Carla decided to have a pig roast for their wedding in 2 weeks. Matt now can’t eat what they are serving. My parents asked if they could stay at  Carla’s house for the wedding because of the special diet and linens that needed to be used for Matt.  Carla said that she didn’t have anywhere else to get ready, to put on her dress. Emily passed on a word of advice to Carla that apparently I gave her, to set boundaries. Emily said that my mom asked her to ask what kind of butter was in the mashed potatoes on her wedding day. Emily is right, the bride has too many other things she has to worry about. Mom asked Mark if Matt would be the best man at the wedding. Mark just said that in passing a couple weeks ago because he hates being the center of attention. Tensions are high, no one is ready. 

Recently, my brother Luke and I have been discussing taking our families on vacation this winter. I told Luke that mom might want to bring Matt along. He said absolutely not. I agree. I’m sorry, I can’t live like this anymore. If we decide this week to fly down to Florida, either my brother or I will have to be the bad guy. We love our mother and Matt, but this extreme favoritism just brings resentment from the rest of us. We have our own problems with our own kids. I don’t think that scrubbing down the grill is going to make a difference. I know mom needs to feel like she has some control. 

I am sorry, I feel very angry today. I realize that parenting a forever child is difficult for the parents, but guess what? It is hard for the siblings as well. We spent our whole lives dealing with all of this crap. Just because you are martyrs doesn’t mean that we don’t struggle. I’m sorry to be so edgy, some bad things happened today that I can’t talk about now. I will probably be able to talk more about it tomorrow. 

Bracing myself again

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Today was a very humid day. I tried to get a run in before work, but was greeted by thunder and torrential downpours so I waited until my lunch break. After the holiday weekend, I spent a long day at work racing around putting out fires. I was able to get in a 6 mile run in though. It was a tough run. It seemed like my whole body hurt. My back, shoulder, wrist, right hip, and left knee were sore today. My knee hurt more than last week. If it doesn’t get better soon, I may make a doctor appointment. I always thought that running was a relatively cheap sport. What do you need really? My husband caused a big stir a couple years back by being a barefoot runner. Talk about cheap! He did spend a lot on bandages until his feet got tough as leather. He now runs with minimalist shoes which oddly enough never seem to wear out. Over the years, I have acquired more running gear. Plus money spent on races. Now if I end up having a running induced injury, I can see it being an expensive sport. 

It wasn’t like I did anything strenuous over the weekend to cause this pain. I watched the men do the heavy lifting. It was pretty nice giving unsolicited advice with my 2 little nieces next to me. It helped prevent unwanted responses. Lol. It is hard for me to stand and watch the men work. Here my dad is pushing 70. He gets winded walking across the room. I feel guilty standing by when I am in great shape. I asked Paul why I can’t help the guys. He said I complain too much. Oh, slow down. It’s too heavy. Sad thing is that he is probably right. So far all I’ve done is complain about everything that hurts. Whaaaaa. 

I haven’t been sleeping well either. Oh, insomnia, my nighttime companion. I recall sleeping well once over the last couple of weeks and it was drug induced. It was after I took meds for my crown. I have become used to being tired. About 2 decades ago I had a sleep test that said that I never go into a deep sleep, so I never feel rested. As a teen it took me forever to fall asleep and I didn’t stay asleep. Now I fall asleep pretty good, I just spend an hour or more awake at night and wake up early. Probably stress and hormones. I am going to try taking some melatonin tonight to see if I can sleep. I come from a long line of poor sleepers. My dad has severe sleep apnea and restless leg syndrome. I always thought that my mom couldn’t sleep because of the kicking and snoring. After sleeping in different beds, my mom doesn’t sleep any better than I do. What a wicked bunch indeed. 

Sorry, it is just hard for me to feel physical pain without an exciting story to tell.  I am just getting old. It is hard to watch my body have limitations while watching my teens not motivated to do all that they can while they can. It is hard to focus at work who you have a sleep hangover without the fun the night before. The more sleep deprived I get, the moodier I become. I walk around like a irritable zombie. My IQ drops at least 2 standard deviations. 

Okay, enough with the pissing and moaning. I did decide that I want to do my first triathlon next summer. That is if I can still walk. 

Running etiquette, rules, and humor top 10

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After almost getting hit again by a car today, I decided to scrap the blog I was going to write and focus a little bit on running etiquette for runners and maybe especially more so for nonrunners. 

Here is my top ten list:

1. If you see a runner on the road while you are driving, it is best to move over to the other lane if possible. Runners don’t like the uneven ankle twisting gravel on the shoulder. They like jumping into a ditch even less. If there is a car in the other lane, just slow down. It won’t kill you to take a few minutes to slow down a little. But it could kill us if you don’t. I decided to wave at the people that follow my rules of the road. Maybe a little positive reinforcement goes a long way. 

2. If you are a woman and a guy in a service truck obeys these rules then just ignore them. Waving could signal more than positive reinforcement of rules. One time my friend and I had a service tech guy stop us on the road. He said, “Girls, wanna cucumber?” He actually had a bag of cucumbers, but you never know. After several strange encounters like this and being whistled at, it is better not to even look. If I wanted to get hit on, I would have joined a gym. 

3. Runners know when you are lost and need directions. The elderly women wanting to know where a street down the road was while peering over their glasses at a mapquest map were probably lost. The guy with the septic pumping truck plastered with a local address was probably not. 

4. If you suffer from anxiety, you should try running. I always had a nervous energy while being tired all the time. Running mimics my body’s response to anxiety. It makes your heart race, you sweat, and at times you feel like you are going to pass out or die. It does help my body deal with anxiety by comparing stressful situations to running. Okay, control your breathing. Relax, body. It is just like running. If driver’s knew at times how close I felt to passing out, maybe they wouldn’t drive so close to me. 

5. I always run in busy areas. People see me. That is ok, I don’t think that running on remote back roads or trails alone is very safe. Plus on busier roads dogs are more likely to be tied up. Believe me, it is not fun tripping over a dog that ambushes you. Been there, done that, and have the scar. 

6. Running at night makes it hard for me to fall asleep at night. I like to tackle a run first thing in the morning or over lunch time if it is really cold out. It actually gives me energy the rest of the day. 

7. It is probably best to avoid an injured runner or someone who stopped running before a big race. Running makes me happy and helps me cope with life. Without it, you will have to cope with me roaring like an injured caged wild animal. Blogs full of profuse profanity. Grrrr#***%#! Just kidding, but you get the picture. 

8. Runners are always happy to see other runners on the road, unless you sneak up on them and scare them like I did to someone this morning. Sorry. Nothing motivates me more than seeing other runners on the road. I feel an instant comraderie when I see strangers in running shirts when I am not on the road. If you are a runner, I love you. Nevermind that you could be a serial killer. 

9. If you are forced to run on a treadmill when it is 20 below at least watch a good horror or thriller flick. Run a Netflix marathon. Soap operas are probably the worst thing to watch. Isn’t that what you are running from anyway? The craziness of your own life. I found that running is a great way to relieve anger, anxiety, or life stresses. 

10. Runners are the best type of people. They are adventurous and fun. They don’t care about what they eat for the most part. I eat healthy, but do not have to justify calories from that cheeseburger or dark beer. I have the energy, stamina, and endurance to be open to anything. Would you rather spend Saturday night with a couch potato? Not me, I am out to live my only life to its fullest. 

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….

Little to no provocation 

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I can feel the gentle, slow downward descent of my mood. My heart in utter despair. I cry with little or no provocation. I haven’t slept for 3 days. It takes forever to fall asleep. I wake in the middle of the night, lying awake for hours. I awake again at the crack of dawn exhausted. I’m not hungry. I can’t eat without acid reflux. I worry about the things I can’t control. I pace the floor. Any attempts to rest or nap leave me frustratingly wide awake. I wouldn’t wish the hormonal fluctuations of a middle aged woman on anyone. 

It was harder this week cleaning out my grandma’s house. The memories some of the items brought back were almost too painful to bear. When I try to reach out to my grandma for comfort, she is not there. What I wouldn’t give to hear her voice again or to even smell the scent of her perfume on her clothes. All I smell is dust and decay. Emptiness. Nothingness. 

It is incredibly stupid to cry over the meaningless little items that I lost. I can mourn over the stupid little stove, but can’t cry over the friends and family that autism cost me and my family? The childhood family vacations with the whole family that never happened? I can’t even remember one time that we went out to eat together as a family. I have to continue to pray for strength to make it through this process of opening myself up to and dealing with unresolved issues. 

I will make it through. I will be ok. 

Family dynamics of autism

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Growing up, we all had our roles. Even dysfunctional families find ways to function. As mentioned previously, my parents relationship was rocky before having 4 kids in 5 years. I would even go as far to say that my dad probably is within the Asperger’s spectrum himself. Now throw in the violently autistic child and a wife who was trying desperately to juggle flaming torches. 

As oldest, my main task was fixing. I also held the role of caregiver, decision maker, best friend, advisor, and emotional support. I aligned myself with my mother. It was my task to keep the flaming torches in the air. If there was a problem, it was my task to fix it. I was loyal to whatever cause was important to my mother. As an adult, it has been difficult for me to listen and empathize when everything within me tells me to fix. I had to suppress all feelings in order to use my head to fix. It worked a little like email. I kept deleting my feelings until finally my deleted items were full. Then anger, depression, and anxiety flowed forth like spring’s river. My email is working now, but my husband and I both lack empathy in order to survive childhood. I need reminding to listen and not fix all the time. It has been a bit of a marriage struggle, but as a team people have been hard pressed to take advantage of us by pulling on our heart strings or pull the wool over our eyes. So it is not all bad. 

Mark’s task was physically working hard and advocate for my dad. He aligned himself with my dad. If my mom packed up the car with all of her stuff and was heading down the driveway, it was Mark’s task to stop her. He would tell my mom that it was not my dad’s fault, that he was just not good at relationships. He also earned my dad’s love by working hard even though my dad was lazy. For example, my dad will take the lawnmower to the end of the driveway to get the mail (sometimes in his underwear, of course). Or that one time we got a couple of inches of snow, he was too lazy to clean off his windshield and ended up in the ditch instead. 

Mark worked so hard that he blew out his back as a teen. I have never seen anyone work as hard as he does. When I told him that I was running a marathon, he said he could outrun me. I think that I threatened his role as the family brawn. When Mark wasn’t working, he preferred to be invisible. Mark and Carla decided they are going to have a small wedding with no one standing up. Mark said that he was tempted to have our autistic brother Matt be his best man because Matt’s behavior is so bizarre that no one would notice Mark. That was very profound. 

Luke, the youngest, had the role of instigator, comforter, caregiver, and clown. He was a mama’s boy and my dad hated him for it. His main job was to make sure that Matt did not get all of the attention. He was the one who cut the wires on my dad’s electronics and kicked a hole in the wall. When he got older, he was the one who played strip volleyball with his friends in the front yard. Girls running around topless in the front yard.  He also wrestled with my dad in the front yard over car keys which resulted in an overnight stay in the ER for my dad with heart palpitations. After awhile my parents gave up, he started driving at 14. He was also the scapegoat and received the brunt of my dad’s anger, deserved or not. 

Somehow we all managed to function. We are survivors. We made it through with our sanity intact, held by a thread.  We are strong, but not without a few battle wounds. 

Windy days

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I hear the wind whistling through every cracked or slightly open vessel. I feel it wind its way deep down into my soul stirring up memories that I long for but are long gone. The wind cries with an urgency that begs for immediate release but when searched for cannot be found. For me the wind cries “grandma.” It transports me back in time to my grandpa’s truck. I sit peacefully between my grandparents with the window behind my head open a crack forever whistling with the wind. Every time the wind blows, I feel a nostalgic longing for them. 

My grandma is the main reason why I survived my childhood.  She also gets a lot of credit for helping Mark through too. She is right up there with Mother Theresa in my blog. Mark and I would take turns staying with my grandparents every other weekend. She did all the little things to make me feel special. We worked on puzzles together, she cooked my favorite meals, she made cookies for me, and she always had time to listen. We always celebrated holidays at their house. One Christmas off to the side was something hidden under a large bag. It was for me. Inside was a dollhouse created partially by grandma using little pearl buttons as light fixtures. She also made doll clothes for me from patterns, struggling to get her big fingers into the little tiny clothes to sew them together. 

Last week while cleaning out my grandma’s house, I found my old dollhouse. Maybe someday I will set it up the way it used to be in its finery. After 6 years of being vacant, someone wants to buy my grandma’s house. My dad never put the house up for sale and it was left as a shrine to her memory. Despite all of his shortcomings, my dad provided loving care for his parents and aunt in their final years. Every time the wind blows, I will be thinking of them and be thankful for the difference they made in my life. 

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?