Autism’s sibling, journal 3 part 1

Now I am ready to tell you about myself, my family, and you will understand everything..

Everyday Matt would be violent. He would bite me and claw up my arms. I have the scars to prove it, although they faded a little because he’s a little better. But it was awful. Everyday he would be uncontrollable. It was always me he hit.

Once he had this thing about men with beards. He would scream and be awful. Once Matt, mom, and I went grocery shopping and Matt saw a guy with a beard. He got really mad. When mom was checking out, she had to hold him down on the floor because he could hurt someone. 

Or how about the time when we had to move the knives because he took one out and threatened to stab my eyes out.

Or when my mom got a bloody lip because he threw his head back on her. She started crying and it really upset me when I heard her say, “What kid would do this to his mother?”.

The stress was unbearable.

I couldn’t have any friends over because they might have on a fragrance and he might react. So you could say that I never really had many friends over because he would hurt them or me. I couldn’t wear any hair spray or anything with a fragrance.

Other times he would hurt small kids.

We had to do different things. We had to get unfragranced soap, shampoo, deodorant, and laundry soap. We had to close the windows when there was an east wind because the auto exhaust would bother him.

He couldn’t leave the house. He had to eat special foods. We never had anyone over because Matt might hurt them.

He can’t read and when he was younger, he couldn’t talk. He would do weird things like grind his teeth and hit his head. He broke about 5 stereos, one of mine, one of mom’s, and the rest were his.

He couldn’t go swimming because of the chlorine. He would be wild for two or three days in a row. He threatened to run away.

Alissa, 1990

Over time, I have forgotten the magnitude of the stories written by a younger me.

To be honest, something has been scratching at my mind since I stirred up my demons.

My last post was on locker rooms of all things..Talking about locker rooms seemed to bother me more than it should have..Memories swirl through my mind. My mom taking a too old Matt into the girls locker room? There weren’t options back then like there are now. A too old screaming autistic boy in the ladies locker room would have been memorable back then, but I don’t remember more than a flicker.

There are whispers quietly echoing through my mind, but I can’t make out the words.

I am nervous as I type.

Do I really want to remember?

Locker room talk

I’ve spent a lot of time at the gym the last few months. I have become well acquainted with the locker room.

The locker room that I use at the gym is for adults only. Of course, rules aren’t necessarily always followed. It really drives me nuts when a mom brings in screaming toddler. They have a separate parent child locker room for that. Seriously, I work out to relax!

Or better yet, when a mom brings in a little boy that gawks at the naked ladies. They have a separate locker room for that too, mixed gender parent and child.

Seriously, I get it. I was once the mom that anxiously awaited outside the boys locker room and men’s bathroom for my son to emerge. It was scary the first few times…Is that your little guy in there? I helped him reach the paper towels. Don’t worry, he should be out soon..

It has become a pet peeve of mine when these rules are not followed. Frankly, it doesn’t bother me if teens use the women’s locker room. Of course, it may be scary for them to view a real woman’s body. I have yet to see anyone that looks like a Victoria’s Secret model stumble in. And these are the women that work out at the gym!

Not that I sit around and look or anything…

I’ve always wondered why when the locker room is totally empty except for one person that I end up having the naked lady using the locker next to mine. It happened last night. Uncanny…no, not really..lol.

Of course I always use proper locker room etiquette. I look with my eyes to navigate to my locker. If I happen to see someone naked, I drop my eyes to my feet like I am in an elevator. I may even hum elevator music softly in my head.

Sometimes I even use the locker room when the group of developmentally disabled come in from the group home. It doesn’t really bother me. Although it was a little uncomfortable when the first naked lady came up to me and complimented me on my  physical attributes or articles of clothing as I was putting it on. Hello, I don’t have any pants on and you’re naked.

Seeing the very nice group home ladies always reminds me of my brother…This is where the story gets very twisted…I’m in the locker room naked thinking of my brother! It makes me sad to think that my brother could be standing in the men’s locker room doing the same thing. It bothers me that his responses are not socially appropriate…like farting in an elevator. These ladies are probably someone’s sister…They don’t know what they are doing, but we can see..As a special needs sibling, I understand. I feel compassion and respect for them although it hurts me that they act that way. It’s a strange feeling..

It reminds me of other times…my daughter’s high school play…Matt in the bathroom using the urinal…grunting (Tourette’s) doing pelvis thrusts to dry himself (sensory issues)..a classmate freaked out…laughing…a weird man in the bathroom..hitting on me?…odd behavior…should I call the cops?…wouldn’t be the first time…my brother…no dignity…it hurts.

Sometimes the locker room is the hardest part of my work out. It elicits feeling of annoyance or sadness. I never expected that..

Going bananas

This year I signed up an 18 mile trail race, a marathon, an Olympic triathlon, and a Half Iron. This year is going to determine everything…whether I go to the next level or not…

The countdown is on…9 more days until my first race of the season…an 18 mile trail run…probably the least grueling race of the season..

Yesterday, I went for a 6 mile trail run with my friend Lisa. Frankly, I’m not sure if I would have the courage to run it alone. It seems creepy and scary out in the woods alone. I feel like I could become the victim of some twisted fairy tale villain when in reality the only thing that could be twisted besides my mind is an ankle. I fear that pedophiles lurk in the woods out to find a hapless female runner alone. I should probably be more worried about being attacked by ticks..

Lisa is just afraid of bears, black bears.. Yesterday as a woman was exiting the trail, Lisa asked her if she saw any bears…Lisa it is only a sign posted to prevent frivolous lawsuits.. We were well into the run, when we saw something black coming towards us growling through the woods..Oh my gosh..a bear! But it was only a man dressed in all black grunting as he pedaled towards us up over a hill. For a few minutes, I thought I would have to outrun Lisa…no easy task…We must have laughed a half mile about the ‘bear’ we saw in the woods.

All joking aside, we fell into a deep conversation about competing…Those are my favorite conversations…lots of laughter followed by serious conversation..

How is it that we find ourselves never satisfied with what others would consider big accomplishments??

Why am I not happy to have run a marathon if I don’t feel like I did a good job?

Instead, I always want to do better. I always want to accomplish more. More, more, more…I want better times, more difficult challenges…But will that satiate me or will I never be fulfilled?

Or maybe an even deeper question for reflection is…why am I not satisfied with the difficult things in life that I’ve already done?? Why does the big stack of medals lose its luster? Why am I driven to strive for more?? Why am I not content living an ordinary average mundane boring life??

Nevertheless, I am very excited for the start of another racing season…the struggles…the obstacles…the goals…the medals…the achievements…

Oh, and the ‘free’ banana afterwards…

That right there is the reason I do all of the crazy things I do…I’m going (for the) bananas! That is what a lot of people seem to think anyway…

Places where the past and present collide

The last few days I haven’t been feeling much like writing. I toy with the temptation of disappearing and being totally anonymous again. Strange thoughts trickle through my mind. I worry that my anonymity has been compromised when the phone rings. I get the pseudonyms crossed in my mind. Will I call someone by the wrong name in real life? Will I use their real name here? The boundaries blur…the wires cross…in my mind..

Time zigzags between the past and present…I enjoyed having Angel home over Easter break, but it blurred the adulthood with childhood in my mind. Is she still my child after childhood fades?

We had a bowling party for Matt’s birthday and a family get together for Easter. Right before the party on Saturday morning, I started feeling depressed and a tad bit angry. I didn’t want to share anything with anybody.

I always feel edgy right before family occasions. Matt’s party went great. We had a fun time. It’s just that sometimes in my head the past blends in with the present and I start feeling or thinking the way I felt or thought back then when Matt was violent.

A group of young laughing girls walked by Matt. I remembered the old Matt…the Matt that would attack them…the Matt that would pull their hair and kick them.

Fear trickled through me.

But the new Matt paid no attention as the girls walked by.

I can’t separate the past from the present. The old triggers still flip a switch in my mind that I can’t seem to turn off.

Yesterday, I pulled out another old diary from 1990. This was something I willingly decided to do in my writing process to confront my demons.

But sometimes I fear that this may trigger memories that are darkly hidden. I am afraid sometimes that I won’t be able to handle what I find…what I remember…and the feelings those memories trigger.

It seems insurmountable to me right now. Like running a marathon right up a mountain.

But once I make it to the top of the mountain, I will see things that I have never been able to see before…new insight, new understanding, a deeper knowledge…peace.

Sometimes I need to take a step back to go forward…too see where I’ve been…to notice how far I’ve already climbed.

I want to be able to put the past behind me so it doesn’t mingle with the present anymore. I think it is going to be a long and difficult hike up the mountain, but well worth the view at the top.

Maybe at the end of my climb, I can finally put my demons to rest.

Prom…the good, the bad, and the not so ugly.

There was this 17 year old girl (Ali) that got the part of the floozy that I wanted in the musical. She pulled it off a lot better than I thought she would as someone rather inexperienced in life and love. She has the body that many would envy with long gazelle like legs and curves in all of the right places. She also has a kind and compassionate heart…truly beautiful inside and out. She almost seemed to feel bad that I didn’t get her part although it wasn’t a big deal.

After the show one night, Ali told me that she was missing her junior prom. She bought a dress, had a date, and couldn’t go because it was the same night as the show.

She spoke with regret…lamenting a missed prom…while at a theater full of beautiful costumes, wigs, and makeup…including a stage with music, lighting, and speakers. It seemed like a no brainer to me…I decided to throw Ali a prom. We picked out lovely dresses and had a dance party with most of the people that were lingering about. Almost everyone got into glamorous costumes and danced the night away.

Afterwards, people started treating me like I was Mother Theresa. I became (gulp) almost popular. People told me how wonderful I was for throwing Ali a prom. Ali was even crowned the prom queen. I really felt uncomfortable with all of the praise. Maybe because I had more fun at her prom then I ever did at mine.

I missed my first two high school proms because I was home schooled. My autistic brother was too violent to be in school, so we had a retired school teacher come out to our house to educate him. My mom pulled us all out of school during this time. We weren’t treated well at school because Matt was the first violent autistic child in the school district. Apparently, it was the family’s fault he acted the way he did. For 3 years, I was not in school.

When I was a sophomore, there was a boy I wanted to go to prom with. I finally got up enough courage to call his house. He wasn’t home, so I ended up talking to his mother under the guise of some church fundraiser we were having at the time. I don’t think he ever knew I called for him. I didn’t have a prom date and didn’t attend the school.

So no luck for prom!

I went to my junior prom with my boyfriend at the time, Timmy. My mom picked out a dress for me and brought it home one day. It was ugly and I hated it. But I wore it anyway. We got our pictures taken at Timmy’s house. His step-dad grabbed my ass. Timmy was angry when I told him. At prom, another girl told me that someone wore the same dress that I was wearing the previous year. She also said that Timmy was planning on breaking up with me after prom.

After prom, Timmy and I got into a huge fight on our way to an after prom party about him wanting to break up with me. We sat outside the party in his car on the road. It was pouring. Several people stopped asking if we had car trouble, but the screaming and tears suggested otherwise.

Not a good prom.

Then senior prom came along…my long term boyfriend Bobby and I just broke up. I was heartbroken…so I started dating Bobby’s next door neighbor and friend. Nothing exciting happened beyond a few hickeys on my neck to get back at Bobby. Boy did that show him! Lol…But, I was planning on going to prom with Bobby’s friend. He didn’t have his license. When I went to pick him up, his sister said that he left for the weekend to go on a fishing trip with his dad.

So, I went to prom alone in a cheap thrift store dress with hickeys on my neck. At prom, a low status guy asked me out… I thought to myself…Sure, why not?? I didn’t like the guy, but I was feeling miserable and alone at the time. The other kids found out about it and laughed. Someone had the DJ announce ‘congrats Alissa and Donny for making a love connection’. We broke up the next day.

Not a good prom.

So this past weekend…I threw Ali a junior prom…Maybe I feel guilty for having so much fun. It was like I was redoing my prom all over again.

Sure, it was a nice thing to do…but I am not a saint for doing it.

I just wanted her to have happy memories. If nothing else, she will have a lot of interesting stories..

It was a great prom!

Stranger then family

We had our final show this past weekend…What started out as trepidation ended with exhilaration..

I have been thinking again the last couple of days…Community theater is not that much different from running a marathon. I know that some of you may think my comment is a bit of a stretch, especially if you have done one or the other or neither..

There are commonalities… The months of training that nobody really sees… Special clothing… Anticipation…Dread…Goal setting… Setbacks…Worries… Until the months of training culminates with one big ending…the show or race with a lot of spectators.

Our common goal forces us to reach out to people that we wouldn’t talk to in our everyday ordinary lives..that person is the one we hold hands with as we limp across the finish line…It doesn’t matter if we voted for different candidates. All of the things that divide us melt away as we walk hand in hand towards a common goal.

It becomes a place where strangers become family.

It doesn’t matter if I really liked my part or not, although being cast in a great role that really fits adds so much to the experience. I can’t say my lines if no one replies with theirs. We have to work together.

It doesn’t matter if I run fast or slow. Maybe it is a good thing that I am not the fastest runner. It forces me to reach out for the hand of another running down the same road.

Long distance racing and working as a team to make a community theater show great are some of the biggest natural highs that I have experienced in life.

All of the long hours memorizing lines, practicing songs, and running long distances makes it all the more rewarding.

The more you put into it, the more you get out of it.

Why can’t life be like that all of the time? Why can’t we grab the hand of a fellow stranger struggling along the path? Why must we get so hung up on squabbling about our differences??

 

Suppertime sadness

The tool box clanks on the floor…It’s 6 PM…Dad gets home from work…Supper is on the table…Matt and Luke are tied to their chairs with my mom’s apron…otherwise they don’t stay…

Dad bangs his fist on the table…This dog shit you call supper…He roars as he walks away…The TV is turned on in the next room…laughter on the screen…laughter from my dad…my mom cries…The boys struggle against their restraints…

My stomach hurts…I don’t want to eat…But I have to stay until all of my food is gone..

Some harmless, some hidden

Memories swirl around in my mind. Some harmless, some hidden..

…laughter of teenage girls…the lighter flicks…not to smoke…melting the tip of the eye liner so it glides on easier…

I put on eye liner for the show. It goes on easy. It almost smears, unlike the sharp pencil of my younger years…Does anyone use a lighter anymore to soften their eye liner pencils?

…I see a younger face in the mirror, then she is gone..

A harmless memory..

An interview for the show…

Were you ever involved in theater before you came to this theater?

…My dad dropped me off at the theater before work…I was the little girl with a small part in the show…I was dropped off early before everyone else…I walked the trails alone in the woods surrounding the theater, sometimes afraid…but it was only a deer…alone…fun on stage…the big kids…the costumes, the makeup…

…The only time alone with my dad…his boss taking him for lunch…maybe I can go too since I ride with him…laughter…why would I take you??

The next summer, I got a part in another play. I was a princess.

…Reading my lines out loud with the other princesses on the grass in a circle in the summer sun…gone…have to drop out…Matt is sick…my mom left for the summer to go to a hospital out of state with Matt…selfish…how could you still want to be in the show…your brother is sick…so lucky that you are not sick…so lucky…anger and tears…some things are more important…crying…no ride…alone…loneliness…missing my mom…fragments of memories reflect off the surface of the dark murkiness in my mind…

Were you ever involved in theater before you came to this theater?

Just one innocent question scratched the surface…I don’t answer…

It has happened before over the years…innocent questions avoided…the explanations too personal…too painful…they shouldn’t be, but are.

Over 20 years later, I walked through the doors of another theater…in another town…and left all those old hidden painful memories behind me..

Or did I?

The thickness of water

Last week I ran into my aunt at the gym..I can almost hear you whisper to yourself…who cares?…Maybe if I told you that my aunt and uncle are going through a nasty divorce after being married over 30 years…my uncle is blood, my aunt is the water…that is the thick and thin of it..

When I saw my aunt at the gym, I gave her a big hug…I am the person that shies away from hugs, not the person that seeks out people in sweaty gym clothes to hug.

I didn’t even take her side…she wanted to leave…he wanted her to stay.

I am not sure why at the moment I hugged her after all of the hurt she caused.

I miss the times I visited them when I was a child…Nostalgia for the moments past…And, yes, I miss her.

When I was a child, there weren’t many happy moments at home. But there were many happy moments at my aunt and uncle’s home.

My mom would take my brothers and I to their house on a hot summer night and we would swim until dark. Afterwards, we would stay up late watching scary movies like Poltergeist.

I love swimming and scary movies. It reminds me of the happiest days of my childhood.

Sometimes I wonder if we like certain things just because they remind us of a good feeling…and perhaps the opposite could be true too…dislike for things that are reminders of bad times..

Then I wonder…what if certain periods of our life are so difficult that even good ‘things’ remind us of bad times…Can that trigger feelings of sadness?

Can we like things that we wouldn’t otherwise like just because of memories of doing those things with loved ones, like fishing for example…Or do we simply like what we like irregardless of relationships, memories, and emotions…

Here I go off on a thinking tangent again

Maybe one of the reasons I saw my aunt at the gym was because of my love of swimming. We joined the gym again so I could practice swimming for the half Iron, something I probably won’t have even thought of trying if I was afraid of water.

Sometimes I love being on water more than land.

I certainly did not learn that from my parents..

My mother doesn’t swim and is afraid of water.

The only time my dad went swimming he terrorized me by pulling me under, throwing weeds or death stuff at me, or dragging me out into the weeds and forcing me to stand there even though I was afraid.

One of my most traumatic childhood memories is of being in charge of watching my younger brothers in the water when I was 6. I stood speechless in terror unable to call for help while my youngest brother struggled for air, choked on water, and almost drowned…My mom left me in charge for only a few minutes…Minutes that could’ve lasted forever…

I should be terrified of water.

Instead I love the feel of water around me. I love the bubbles that flow through my fingers. For some reason, I associate water with happiness instead of fear..

I have to wonder if my love for swimming sprouted from those hot summer nights at my aunt and uncle’s years ago.

It is sad to see their marriage come to an end. I have always known them to be together..But maybe, just maybe, there will be more stolen sweaty hugs at the gym. For a few moments, it can take me back to those warm (sweaty) happy summer nights when they were still together…back to some of the happiest days of my childhood.

 

 

Mile 20 of the show

The last time we talked, I was feeling apprehension about the opening weekend of the musical. It wasn’t about stage fright or worrying about whether or not I knew my songs or lines. It seemed to go a lot deeper than that.

The last show that I was in was back in 2011. I was in my mid-30’s and I had some really awesome parts. I built up a rather large fan base. I wore some really beautiful dresses.

As luck would have it, I was the oldest female that auditioned for this show. The part that I wanted was given to a 17 year old. Feeling old bites, especially after being given the old lady parts. In my mind but not in the mirror, I am still young and beautiful. Don’t they see me as I do?

I have been teased endlessly for my costumes. At first I was angry. One of the costumes I wear was owned by a woman before she had bariatric surgery. I was not kidding when I said that I had to wrap the belt around me twice. Over the weekend, I learned to laugh at myself too. Although it is one of my least favorite shows, the cast and director have been phenomenal.

Over the weekend, I had a few moments for self-examination. Paul and I have the same problem, we tend to be the type that takes on too much. Then we get overwhelmed with the choices that we make. I realized that if I ever train for a full Ironman, there are going to be a lot of things that I am going to have to give up or say no to.

Being in a show is a tremendous time commitment. Many people do not know what it is like until they have done it. Not only are there many hours spent on stage at the theater, there are many hours spent at home memorizing lines and songs. Time that cuts into other time commitments.

Stepping back into community theater after a long hiatus hasn’t been particularly easy. I lost all of my fan base. I am not remembered anymore. The director and most of the cast have never seen me on stage before. The ‘good jobs’ people threw at me as they were passing by on their way out the door don’t mean as much…you should’ve seen me in my hay day…It’s almost like qualifying for the Boston marathon…taking a break from the running scene for years…then being complimented on running a 5k.

This show has forced me to face that I am not young anymore…my looks are fading. I know this sounds incredibly shallow. But it has been difficult for me. To be honest with you, most of the positive attention I received as a child had to do with my looks. It met a lot of emotional needs for attention that went unfulfilled at home. I am learning to live with it like a genius slipping into dementia.

Maybe that is why I slowly switched from beauty to brawn over the past couple of years. It is something I feel I have more control over. It is something that I earned versus a genetic lucky roll of the dice. I feel great. I am starting to see a big separation between those who are active and those who are not. There are people my age who are out of breath climbing the stairs. I get a little winded at about mile 18 in a marathon.

People say that I am lucky. But this has nothing to do with luck. I earned it.

I don’t expect to live forever or even longer than everyone else my age. I probably won’t be running marathons at 80. But I do expect to live a full and active life until my last days. I expect to have enough endurance to make memories with my grandchildren someday.

Will I ever do another show again?? Yes, perhaps I will if the timing and part is right for me. But if you ever ask me if I plan to run another marathon at mile 20, the answer will always be no.