Month: July 2017

Autism heard

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Matt was a normal baby, very bright actually. He knew the alphabet and was saying simple words at age 2. But that all went away.

Even his birth was not a normal event. After crushing back labor, he entered the world with broken bones.

One day the words went away. He stopped talking. He started having nightmares. He screamed instead of sleeping. But I was too young to remember that.

How could such a brilliant mind be stunted? As an adult he can neither read nor write. He cannot solve simple math problems.

For a long time, Matt did not even talk. But the strangest thing happened. He started talking again. But not in the same way that you or I do. He got his pronouns all mixed up. Matt eat..he never referred to himself as I. He also has a speech impediment that makes him difficult to understand by those who did not know him well. This seemed to frustrate him in his younger years and he hit his head with his fist.

The things he said didn’t always make sense to us.

For awhile he repeated the same song in a monotone voice…hands on the table won’t come off, now the hands are stuck on the beard. He would scream if he saw a man with a beard.

But a man with a beard never hurt him.

He was also terrified of tires. He would kick the tires and throw stones at them if people showed up in their cars.

He also heard sticky noises. He would smack his lips to mock the sounds he was hearing. It was a disconcerting sound like chewing with your mouth open times ten.

He also heard the sound of girls laughing at him. Back in the day, he was sent out to recess with the rest of the kids. The older girls teased and mocked his bizarre behaviors. I was there and saw it but was helpless to do anything about it. I didn’t fit in with the other kids because they made fun of my brother. He was an easy target. It made me angry all of the time. But I wasn’t allowed to feel anger. Anger was wrong and it upset Matt. Angry emotions set Matt off and he would hurt himself, my mother, or me. So I withdrew to survive.

Recently Matt was taken off of his anti-psychotic medication due to liver strain. He started to hear voices again. This time the voices were telling him to hurt my niece. But not just hurt her, to kill her.

Fifteen years ago, Matt hurt my daughter. The voices told him to do it. He started to obsess about her, so we limited their contact at the time. It was on her 4th birthday. We didn’t think it would happen…

Afterwards, he muttered to the voices for hours and couldn’t be brought out of it. He didn’t respond when spoken to.

For many years after that my brother was not allowed around my children or any children. He became home bound and isolated from the general population. If it happened again, he was going to be locked up with the violently mentally ill. He started a new medication and silently gently the violent whispers faded away.

My mother asked lately if he was misdiagnosed. Is he schizophrenic too? Or is this some unusual symptom of autism? The doctor said that at this point it really doesn’t matter since it will be treated the same way.

Matt was violent before he hurt my daughter. If we were vigilant enough, we could see it coming on. His jaw would clench, his face contorted, his pupils constricted, and his ears turned bright red.

Sometimes after he hurt someone he seemed very upset about what he had done. Other times he would laugh. It was such an evil laugh that a few asked and we wondered if it was possible that he was demon possessed.

He struggled to differentiate between reality and what the voices were telling him. The voices are very frightening to him.

I think he always had auditory hallucinations, but couldn’t verbalize it to us.

It made me wonder…what if other violent autistic nonverbal people also hear the same voices but can’t tell anyone? How terrifying that would be. What if they think they are being hurt or are hearing a voice that tells them to hurt someone or themselves?

If I would go back to school to get a Master’s degree or PhD in Psychology, I think I would devote time researching this. I couldn’t find a lot of information online. But what is there to find if those who suffer cannot communicate?

This has been incredibly hard for my mom. She can’t mention my niece’s name around Matt. He obsesses about her. He is angry if he thinks that she likes the same things he does and talks about hurting her.

It is hard for us all. I love my brother and don’t want to see him suffer. I love my niece and I don’t want her to be hurt.

How long will it take for the medicine to work?

 

Epic sail (epic fail)

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It started out calm the way troublesome days sometimes do without a hint or foreboding of danger in the air.

It was a clear, sunny day. It was warm, but not breezy.

We had to motor for the first hour before it was even windy enough to put up our sails.

Our destination: A beautiful resort in Door County.

We had passengers with us. Our pastor surprised his wife with an overnight stay at the resort for their anniversary. Romance. A nice quiet sail there and back, or so we thought.

We were all in for a surprise.

A storm popped up on the bay. We had the foresight to take down our sails before it hit. It wasn’t a strong storm, but it produced 10 minutes of heavy rain. It was our first storm. We huddled below as Paul steered the boat. He barely had enough time to throw on his raincoat. I discovered that I forgot mine.

It wasn’t the storm that created the most difficulties. It was the aftermath. The temperature dropped 20 degrees. The winds picked up to 20 mph. Then we had to fight against 6 foot waves.

At first it was kind of fun like being in a giant wave pool. Every tenth wave was gigantic and would crash against the bow soaking us. We laughed, listened to music, and jokingly talked about dying.

After the first hour, things weren’t fun anymore.

The coast guard came on the emergency radio warning boaters of a 22 ft sinking boat partially submerged in water near but not in our path. We were worried about getting off course. It was starting to get late in the afternoon. We used up a lot of gas motoring against the waves.

If we didn’t make the harbor, we might hit the sinking boat.

Things did get rough when we had to hit the waves sideways. Everything that wasn’t tied down flew everywhere. People bounced around like there wasn’t gravity. Even the carpet didn’t stay. The pastor dry heaved into the garbage while I was knocked to the ground.

Paul was hollering from the deck that his waterproof case on his phone gave out. We no longer had our navigation once his phone died. But Paul knew the rest of the way. We were almost there..

I laid on the floor thinking that I was going to die. It felt hopeless really. I couldn’t move. I couldn’t snap out of the panic. I made it my mission to find all of the life jackets. I had to keep my mind from shutting down.

We never have been in waters like that before although Paul calmly told the pastor’s wife that we do this kind of thing all of the time.

Three hours of rough waters and Paul got us to shore safely. I am so proud of him. It wasn’t easy.

Once we got close to shore and things settled down I noticed that Paul and the pastor’s wife were completely soaked and shivering. Almost everything was wet. I found whatever I could find that was dry to keep them warm. The pastor’s wife huddled in the spider ridden sail cover.

We were all freezing cold in July. We were all feeling sick. We weren’t able to get the bumpers out. I was able to tie a line and had to jump on the dock quickly as the motor died out when we found the nearest empty slip.

The pastor’s wife started throwing up once we got to shore. She was so sick that she wasn’t able to join us for supper.

After 3 hours of intense waves, I felt panicky like I do with turbulence on an airplane. It was an awful feeling. I also felt sad. I thought about death, how things could’ve gone terribly wrong and we could’ve died. I thought a lot about my grandma. It stirred up strange unexpected raw emotions of grief and anxiety within me that I find hard to explain. I felt empty, hollow, alone, and frightened…

For the last two weekends I battled death in the grueling waters of Door County. First under the dangerous swimming conditions for the Half Ironman. Then this weekend, 3 hours of sailing in very rough waters. I want to think that I won’t have to face this again. I didn’t enjoy my brush with death very much. But I already committed to sailing for a whole week next week with Paul and some other sailors to the tip of Door County through Death’s Door.

To be continued…

 

What’s next?

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Someone asked my mother the other day what I was planning to do next…

If your daughter is doing a Half Iron, what will she do next? Skydive??

I admit, I did have very lofty goals for this racing season..

I started off in April with an 18 mile trail running weekend.

In May, I did my third marathon.

In June, I completed my first Olympic triathlon.

This July, I completed my first Half Ironman.

A majority of the events I did for the first time.

What’s next??

I think I am done running marathons. I think this is my last Half Iron.

I think I’ve taken it as far as I want to go.

I realize that I say this every time after a big race. I am never going to do _____ again. I think I mean it this time.

I am taking a break to reflect on what I want to do next.

I am not planning on quitting and will still race next season.

I feel that in order to go to the next level, I am going to have to train day and night.

I feel very satisfied that I achieved my goals for this season.

I wish I could take the feeling of accomplishment and bottle it for the times I am discouraged.

I also feel a great sense of freedom. If I can do that, what can stop me?

My mom said that I am finally starting to bloom (in my 40’s) since I could never spread my wings in childhood. I am finding myself.

The truth is that there are so many more things I want to do and try…Maybe I will learn another sport. I want to be free from training to be able to do more. Maybe I will try out for another musical.

But frankly right now I just want to sit on the beach, not swim across the lake and back as fast as I possibly can.

Racing will be in my future…but there are so many things I want to do…there are so many worlds I want to see.

Today I booked a flight to Asia.

Time to work on my other bucket lists..

I am excited to see what’s next..

My first Half Ironman

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I finished my first Half Ironman and ordered my 70.3 bumper sticker..I really wasn’t sure I would make it.

When I woke up the morning of the race, the water looked a little like this:

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Well, not exactly…the race was held at this park, however I took this picture in November. In this picture, there was a strong west wind. During the race, there was a strong north wind which meant that the waves would start pounding us at the end of the pier. Then if we could make it past the pier, we had to swim against the waves to the first buoy. If we could make it to the first buoy, we could let the waves rock us back to shore.

Due to a small craft warning, upon arrival I received the news that the swim would be shortened due to treacherous conditions. The swim went from 1.2 miles to 0.25 miles. I cried tears of joy and cancelled the mental list of loved ones whom I would give all of my running medals my prized earthly possessions to. Nevertheless, even with the shortened swim, about 5% of competitors got pulled.

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Here is my wave waiting in the calmer waters on the left of the pier. I tried not to watch the waves before us getting hit by huge wave surges after the pier. Lifeguards on jet skis were pulling people out of the water. I think the lady next to me was about ready to have a panic attack. She was muttering anxiously to herself. I felt like we were cattle waiting for the slaughter house truck.

The horn sounded. We swam together in a clump towards the end of the pier. People kicked and clawed their way through only to be hit by a huge wave surge at the end of the pier. There was a collective roller coaster ride scream as we were hit by a giant wave. I gulped down several mouthfuls of water and choked.

My husband’s words right before the race became my mantra…water is my friend…I love water..

I reached out to the lifeguard in the water that had a flotation device. She said calming words. I stayed until I stopped choking. The lady next to me had a full blown panic attack and had to be pulled out of the water.

I felt like I was in a wave pool except I couldn’t quite see where I was and I couldn’t touch the ground.

Thankfully I made it past the first race buoy and let the 4 foot waves push me back to shore. It was rather nauseating being raised to great heights then dropped.

SWIM!

I was so happy to make it through the swim alive.

I was still shaking as I was riding my bike 15 miles later. I could’ve drowned kept splashing through my mind. I was finally able to calm down a little but still felt shaken. I decided to make one stop halfway through the bike route to hydrate. I didn’t feel like I could keep my balance if I grabbed water while biking.

The bike route was very scenic and pleasant despite the rolling hills at the end. We went through small towns along the bay of Lake Michigan. I saw deer in fields and sailboats in marinas.

It wasn’t until the last 10 miles that things got to be grueling. The end of the route was uphill against the strong north winds. I tried to say comforting words as I saw a My Team Triumph team struggle up a big hill. I felt like quitting then.

Plus I never biked over 45 miles before. There’s that.

I passed the last water stop, regretfully not stopping. With a few miles left, I got a bad side cramp and my knee started to hurt. I felt a little lightheaded, but kept going.

How was I going to run 13.1 miles? Maybe I should stop, but I pressed on.

Near the end, I prematurely unclipped my bike shoes. I was told to keep going until I was ready to pass the race mat. I accidentally clipped my shoe back in when I was supposed to dismount and almost fell.

Thankfully, somehow, I managed to avoid drowning and a bike crash all in one day.

The first few miles of the run I focused on hydrating myself. Thankfully the cramps were gone, but I started feeling a little sick… I found myself having to run several times to the bathroom. That really motivated me to get running! I didn’t take any Gu because I felt like I was going to throw up. I spent the rest of the run doing a walk/run combo.

There was an area of the race where there were runners on both sides of the road running in opposite directions. The road wasn’t closed to traffic, so it was very busy. Most of the motorists honked, waved, or cheered out the windows to racers.

Every single volunteer was eager to please with a smile on their face. No one looked bored or like they were waiting for it to be over so they could go home. They asked if I was okay and if I needed something every single time. Did they recruit Walmart greeters??

This was the best run race I have ever been in.

As I was reaching the end, my friend Cori was waiting for me. She hugged and kissed me through her falling tears. Then she told me how proud of me she was and how much she loved me.

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I didn’t know how emotional this race could be. I found my friends, my husband, and myself in tears unexpectedly. People who rarely cried were struck with emotion. I felt like it was one of the biggest accomplishments in my life. I overcame my obstacles. I struggled and prevailed.

finish

I crossed the finish line!

Just one more day….

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It’s been a rough week for me. I have been struggling with insomnia. My mind has been tormented with fits of anger, deep lows, and crippling anxiety. I found myself making mistakes at work although known for my accuracy. I feel sick to my stomach with nervousness. 

Tomorrow is the Half Ironman. 

I have been having nightmares more nights than not when I do sleep. I dreamt  that my legs weren’t working to peddle my bike. I dreamt that I was running straight up and when I got to the top I couldn’t get over the edge. I asked for help but no one would help me. I even had my first nightmare about blogging. I dreamt that there was someone who knew me so well that he left little notes to stalk me. What am I doing? I am a private person. 

Everything in me tells me to stop…stop racing..stop writing..But a few days without it and I am a basket case. 

I am terrified about tomorrow although everyone has been very encouraging about my endurance and ability to finish. I feel exhausted and run down. 

I have to get my mind in the game but it just doesn’t seem to be working right. I hope it is worth all of this. I think it will be after I get through my first Half Iron. I will keep you posted….

Competing against the clock

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My birthday is coming up in a few days. To celebrate, I am going to do my first Half Ironman. It just sounds so wrong. Maybe what people say about me is true…overachiever…workaholic..

Would I have more fun sitting on the couch watching a Netflix marathon instead of doing an actual marathon? Probably not!

I really don’t like the taper week. When you are used to working out an hour or three at a time it is physically hard to take it easy. I have to push myself to sit still. My mind is restless and my body is antsy. I want to run off the nervousness inside.

Last night I had my first pre-race nightmare that something was wrong with my bike. The seat was too low and I couldn’t adjust it. I had to bike through crowds of people, but couldn’t seem to make the pedals work right.

To tell you the truth, I am terrified of doing the Half Iron. More terrified than turning another year older. I feel like I am racing against time. I am not competing against you, nor me. I am competing against the clock.

I talked to some others over the past few weeks…I used to run marathons when I was young like you..That implies that someday this will all end.

The sands of time slip through my fingers… I never thought that I would be old. I never thought my kids would grow up. I always pictured us stuck in time at the perfect age. The age when we first met and fell in love. The age when our kids were little and had full confidence that we had all the answers.

It is horrifying to let go. My son got his motorcycle license yesterday. My daughter left for college last year and said that this is her last summer she plans on coming home. They are doing adult things like holding down a job.

When the terror sets in about what I am about to do…a Half Iron…I think back on all that I have already accomplished…3 marathons…WOW. If I fail miserably, I still have accomplished more than most people I know.

When I start feeling the horror of my lack of control as a parent, I have to remind myself that I have teens that are growing up to be wonderful responsible young adults.

As I turn another year older, I think about how much I’ve learned and how much more life is in front of me. If I look back to where I came from, it is pretty amazing that I got this far.

Like a drunken sailor

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I’m tired. We sailed for 12 hours yesterday. I feel drunk, but I am sober. My body sways back and forth. I couldn’t walk a straight line if I had to.

We left the harbor yesterday morning to take a sailing club cruise to a park. We took 2 other couples, one that never sailed before. We started the morning off with mimosas. We sailed to our destination and had a cook out. We weren’t able to hike as much as I would’ve liked. One of the ladies on the cruise just had knee surgery a couple months back and couldn’t do all of the walking. We were able to snap a couple pictures though.

It was a great sail home..We motored for awhile and caught the wind that took us home without having to jibe. I fell asleep for a couple minutes sitting straight up in the cabin. For some reason I can relax on the boat. You can sometimes find me sleeping when we are heeling with one side almost touching the water.

There was a new sailor out with his girlfriend and they didn’t make it back in time for the race because she was very afraid of the heeling. I think there might be another boat for sale..Hmmm..

There was a cruise in the morning and a full moon race in the evening. Being overachievers (or over planners) as we are, we signed up for both. We had an hour between the cruise and the race where we rushed to pick up something to eat to get back to the boat. Paul was stressed because he didn’t have enough time to plan the race route.

We quickly raced back to the boat and arrived in time for our next crew, our friends Ted and Cindy. It was a warm and breezy evening. It didn’t take long before we put on pants and coats though. Even during the hottest months of the year, the evenings can be cool especially on the water.

At the end of the evening, I was starting to feel a little seasick. I thought I might throw up, but didn’t. We finally got back to shore around 11 PM. We saw distant fireworks going off. It was a beautiful evening to be on the water.

When I went to bed last night everything was rocking. I woke up feeling like I was hungover although I didn’t have much to drink. Drinking anything became distasteful after awhile when I was feeling seasick. I didn’t drink enough water.

This morning I was tired, foggy, and floating. The room swayed back and forth. I felt like a drunken sailor, but was sober.

I almost feel ready to go back to work tomorrow..

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Up north adventures

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We left Wednesday afternoon to take the winding roads through the north woods of Wisconsin to get to our friends cabin. This was our first time at Tom and Lisa’s cabin. The last couple miles of our journey was on dirt roads.

When we arrived at their cabin, I felt like we stepped back in time. It was quiet and peaceful in their cabin in the woods on the lake. Their biggest form of entertainment upstairs was a record player. We listened to Kenny Rogers and Huey Lewis, the records I listened to as a kid. It’s amazing how I haven’t heard some of those songs for 30 years and can still sing them by heart. I picked out a few records, but to be honest I almost forgot how the record player worked.

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We spent the first evening kayaking around the lake. We sat around the campfire and spent the evenings playing darts and board games. We spent half of the next day at the beach we had to ourselves. It was a hot day and storms blew through in the evening. We had to rescue the kids from the beach in the evening as the storms were coming in. The thunder echoed off the lake magnificently.

I was surprised at how at peace I was there. I certainly shouldn’t have been. Yesterday Tom and Lisa’s friend came up with his kids. Out of all of us, we had 7 kids between the ages of 10 and 15.

I had a hard time sleeping at night. There wasn’t any A/C. The mattress was little and old. It caved in towards the center. I ended up rolling downhill into Paul all night, tossing turning and elbowing him. Four of the kids slept in the room above ours. It sounded like a marching band was practicing above our heads. At 2 AM, I told them to shut up. Nicely, of course, since they weren’t my kids.

I awoke at 6 AM after a restless night of sleep to the ringing of the phone. Our employee called in saying that her mom was in the ICU and couldn’t make it to work today. My mood darkened considerably. I decided to stick with our plan anyway, but modify it a bit.

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Lisa and I were planning on going for a 9 mile run and then hiking to a waterfall. Instead, we hopped on the back of their 4 wheeler to hike. Can you believe that I was never on a 4 wheeler before? It was fun.

We hiked the muddy path to the waterfall. There wasn’t another person in sight, which was great because I had to pee. We had to hike around fallen trees. It felt like an obstacle course more than anything. We made it there and I thought I would share a few pictures.

Afterwards, our husbands dropped us off on the road and we ran 6 miles back to the cabin. It was a tough run. I’m not sure if it was because of working out 3 hours two days before, the endless supply of liquor, a week of barely any sleep, that it was hot out, or because we had to cut our vacation short to go back in to work to cover for an absent employee. Good thing we didn’t see any bears! I could never outrun Lisa.

Regardless, we had fun on our mini vacation. Maybe tonight I will get some sleep??

Then tomorrow we are off bright and early for a sailboat cruise, then ending the day with a sailboat race. Another adventure awaits!

 

Fireworks..

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It was an interesting weekend on the lake. We headed up north Friday afternoon.

Saturday afternoon, my brother Mark and his wife Carla arrived. They decided to go to rummage sales. I asked to go with as it is always a fun thing to do being cheapskates and all. I was expecting being gone an hour or so. We ended up trudging back 4 hours later. Apparently Mark was kicking himself for not buying a junky accordion for $5 last 4th of July. The people did not have a rummage sale this year, but Mark was tempted to knock on their door to ask about the accordion.

I asked Mark to stop at the store on the way back. I brought everything along to make a banana daiquiri except the rum. As I was looking for the rum, there were some young folks stocking their cart full of liquor. They looked like they were 16. They happened to be right next to me in the checkout line. The cashier wanted to card the group of 5 young people until her manager told her that she only needed to card the one buying.

I pushed the door open on the way out and let it slip shut behind me as one of the young girls came out fast behind me. She muttered ‘bitch’ as she was leaving. At first I thought she was talking to me because I failed to hold the door open for her. I was about to turn around and have a conversation with her about her choice of words when I decided she was upset about the cashier and not me. I walked away not wanting to confront someone that was possibly underage. For a moment I pictured myself confronting the girl and ending the evening incarcerated. Sometimes anxiety works to my favor…just walk away.

The rest of the evening Mark and Carla fought. They didn’t seem very happy to be married.

Then my husband Paul’s stepdad Darryl showed up unexpectedly. Paul’s mother passed away in February. A couple weeks after her passing, Darryl discovered the internet. He has become obsessed with women that he could meet online. It is all he has been talking about. It really makes us uncomfortable.

Darryl was having a conversation via text with a hot younger lady the whole evening. She is younger than me. They were talking for several days and Darryl called her his new girlfriend.

The next morning she said her wallet was stolen and she was starving. She started asking Darryl for money. Darryl had to break up with his new girlfriend and seemed heartbroken. All this happened while Mark and Carla fought.

It’s sad that most people I know are just not happy…not happy being single, not happy being in a relationship. What is the purpose of that??

I told Paul that if he starts searching for my replacement a few weeks after my demise, I would come back from the dead and haunt him with a vengeance.

Every year my family goes up north together for the 4th of July weekend. It is almost like a family reunion. This year my brother Luke couldn’t come with his family. His dog was very sick and needed to spend the night at the vet. But that allowed my parents to come up with my brother Matt. Matt is still hearing voices and is obsessed with hurting Luke’s daughter.

Matt was acting strange.. He giggled like a maniac and became obsessed with the noise of the children next door. It was all very concerning and I had thoughts that I might have to protect those children if Matt freaked out. I remained vigilant, but nothing happened.

I spent three mornings swimming across the lake. It went pretty well. Paul kayaked or boated attentively by me. Every time I took a breath, I saw him there. Except for one time. I had a feeling something was off and I was right. There was a loon in the water 10 feet in front of me and I was heading straight for it. Swimming up north across the lake is terrifying because I can’t see what is in front of me, kind of like life is sometimes when things are uncertain. I probably would never swim again if I rubbed up against the loon.

Paul and I also took the 12 ft sailboat out. The wind picked up and the lake was quiet. Once we got quite a ways out, the wind died and everyone came back out on the lake. We were hit by the boaters waves and had to paddle to get anywhere. Then Paul dropped the paddle and had to jump in. Some of the boaters came by and asked if we needed help causing more waves. Time to sell that sailboat I think.

To tell you the truth, I was bummed out a bit up north this year. My oldest daughter Angel decided to go to St. Louis for the 4th to be with her new boyfriend. My son Alex didn’t want to come up either. I told him he had to come for one day. He showed up late Monday afternoon. He spent the night and left the next morning.

I expected that Alex would spend the day with us swimming and kayaking, but he wanted to go cliff diving with his friends. After he left, I cried a few tears. I felt so upset that he left. I wanted him to be there, but he didn’t want that. I felt hurt to let go of two kids at the same time.

I sat around feeling sorry for myself. We were just about ready to leave when we heard someone call our names from the lake. Our friends Cori and Randy were on a pontoon boat with friends. They kidnapped Paul, my youngest daughter, and I. It was so much fun that I forgot about my sadness for awhile.

That was my weekend.. Sorry it is so long.. I wanted to tell you this before I forgot.

We are leaving soon to go back up north to visit Lisa and Tom…another adventure awaits!