purpose

What is the purpose of struggling?

I’ve felt sick like this many times before. There were times in my childhood where I was in so much pain that I didn’t eat much for several days. I was deemed a picky eater. My parents yelled at me, at times forced me to eat until I threw up, and threatened to take me to the doctor. I really wish they did. Maybe I wouldn’t be in the predicament that I’m in now.

Maybe if I was an only child things would be different. My brother had special needs so mine were ignored. It was selfish of me to take care of myself. I mean, look at my brother.

I can’t blame my parents for everything. I once told a doctor about the things I was experiencing and she told me it was all in my head. Maybe it was all in my head. Maybe it still is. I have that fear. Maybe I will go in for the colonoscopy and they will find nothing wrong with me. But if it is in my head, you better lock me up because I can’t live this way much longer.

At its greatest intensity, the stomach cramps feel like I am in labor. That being said, I didn’t really get a lot of sleep last night. I was in too much pain.

What does this mean for my life going forward? I’m thinking about giving up running. I am not well. My running really took a downhill (or uphill) turn last year. But I did finish a 50k. I achieved everything I wanted to. Oh my gosh, will my life come down to walking and yoga? Shoot me now!

I have to think this physical struggle with my health has some purpose. I have to think my childhood trauma had some purpose too. Why is purpose so meaningful to me? Without it, what is the point?

My husband has been very supportive. I want to thank him for giving me the best years of my life. I know we annoy each other and fight sometimes, but I can always count on him. I guess that is as close as I can get to trusting someone in this life.

I have been struggling because I want to write about what happened last summer with my husband. But I don’t want to hurt him because he is a good person. He did give me the green light, but I would choose him over being transparent with you any day if I felt it’s what I needed to do.

The whole purpose of having a personal blog is sharing my story. The ups and downs and the bumps along the way. Maybe I can help someone else in this journey. Or maybe it just makes me feel better.

My story is the only thing that cannot be taken away from me. Unless I end up with dementia, of course, which I am convinced will be my demise. But until then I am going to keep writing.

 

 

 

Enviable ignorance

This week my autistic brother Matt celebrated his birthday. He was rather upset he was not able to celebrate his birthday with family at the bowling alley like he has done every year for over a decade now.

His program he attends for autistic adults and children was also shut down. The group home he lives in closed its doors. They don’t have enough staff to cover the hours at the house where its residents were previously gone.

Matt was sent home disrupting his day to day routine just like the rest of us. This was rather disturbing for a population of people who don’t understand why the change is happening. But as they say ignorance is bliss. He is happy to be at home because he likes it there. He adjusted really fast to having my mom dote on him.

Matt wasn’t upset the day the police officers showed up at my parent’s house to talk to my dad. But that was the day the rest of our lives changed forever. You see, the police came on a Friday. That was the day Matt was scheduled to come home for the weekend and all was well for him.

Matt isn’t worried about the corona virus. He isn’t trying to stop touching his face. He is not worried that our parents who are in their 70’s might die. He just worries about whether his food will show up on the table when he is hungry just like a small child or household pet. He doesn’t have the responsibility of a family. He doesn’t even have to take care of himself.

In all honesty, sometimes I wish for that ignorance. Dementia doesn’t sound all that bad to me because who wouldn’t want to forget all of the bad things that happened to them. Maybe sometimes I just want someone to take care of me.

I wish I lived in a world where there weren’t so many things to worry about. I envy Matt’s ability to remain calm and worry free in times of great chaos and unpredictability.

There is something attractive about having a child like faith and sense of wonder in times of struggle. I want to be like a carefree child who dances and plays. I want my only worry to be about whether or not someone feeds me having the security that they will.

Yet I have been given the gift of reason. With this gift comes a great burden. Difficult decisions need to be made. It’s hard to break free from the stress and struggles that awareness brings.

I don’t want to be like Matt but sometimes I envy him.

questions

It’s amazing how gullible we were as children believing the things we were told.

How could anyone believe that some fat guy in a red suit could get skinny and simultaneously go down everyone’s chimney with a bag full of presents that end up under a tree the next morning perfectly wrapped? Or that a fairy is going to sneak into your room at night to take your teeth once they fall out? Or that a bunny is going to leave a hidden basket of chocolates? But we do all believe it if that’s what we were told.

Then what about the other things we were told?

I was told that God loves me. If I prayed hard enough, he was going to send us the right doctor that would heal my violent autistic brother. Mile after mile, state after state, we trudged hoping we would find the right doctor.

I was also told my brother was violent because of the foods he ate. Or it was the east wind that blew auto fumes in through the windows of our house. Or it was the lady that was wearing too much perfume. The music was too loud. Just fill in the blank…

I was also told I was stupid, not good at anything, and that I needed to be perfect to be loved.

Why wouldn’t I believe what I was told as a child?

I’ve been cleaning out my closet and found that almost everything I’ve been told and believed as a child was not true. There is no Santa Claus. There is no tooth fairy. There is no Easter bunny.

I am not stupid. I am good at some things. I still fight the drive to be perfect. Thankfully, as an adult, I no longer believe the negative things I was told about myself as a child. It probably took a bit longer to realize that than a child who was told positive things.

But take it one step further, as an adult pursuing healing I am questioning everything I ever believed.

Do my parents love me? Is there a God out there that loves me? I want to think so, but God never healed my brother. I no longer believe God will heal him. But if I had real faith shouldn’t I believe it is possible?

I don’t believe reactions to the foods he ate or his environment caused him to be violent. He was just violent. There was no rhyme or reason. There wasn’t a way to control the unpredictable chaos in my house.

It took me longer to dismiss the beliefs of magical thinking and false hope. But isn’t false hope still hope? Didn’t even false hope help us cope?

Then is God real? Does he really love me? Our pastor spoke of God’s love being like that of a father taking his child in his arms and kissing him on the forehead. What is that like? Neither Paul or I knew. We’ve never been kissed by our fathers. Is that just more proof that a father’s love, God’s love, is meant for others, not me? Are some chosen and some not?

I still have the childhood belief that God loves me. But I’ve also built this big wall around myself that prevents his love from shining through. I can no longer accept this belief as truth, but I cannot dismiss it either as a lie. Some strange almost miraculous things happened in my life that I can only attribute to God. Yet sometimes I feel God answered my prayers with silence.

I no longer believe that parents always love their children just because they are parents. Yesterday while I was running an elderly man started to talk to me. I removed my earbuds and asked him what he said. He said I was pretty fast and pretty too. In just one sentence, a stranger said words nicer to me than my dad ever said. Sometimes the kindness of strangers hurts. Over the past 45 years, I’ve accomplished some amazing things. How hard would it be to say you are proud of me? Does a stranger have to take your place? Why would I think you care?

I want my world to be neat tidy black and white. I feel safer there. I want to be all in or all out. I seek the truth and find myself with more questions than answers.

I hate the grey areas. It causes me so much inner turmoil. I want to pick and choose what I believe. But I want that decision to be made realistically. I want to toss out the things that aren’t true. I want to fully embrace truth, not just what I want to believe is true. I hate this feeling of being in limbo. Not knowing. Not being able to distinguish truth from non-truth.

Can I even trust my own thoughts? Is truth absolute? Or can truth be different for other people, yet truth? Can some of it be truth and non-truth at the same time? Does God show me love by the blessings and good in my life? Conversely, is the opposite true too? Is God punishing me for the bad that has happened? Or does God take bad things and make them good? Why do bad things happen to good people? Why isn’t life always fair?

Aaaarrggghhh!! Here’s to overthinking!

 

 

 

 

 

I finished my book!!

Last night I finished my book, my life story. It stirred within me many mixed emotions. I felt like I was covered in a blanket of deep sorrow, yet at the same time I felt joy. It’s been a journey of remembering and releasing in words previously unexpressed.

Last night I sent my book to two test readers, a friend who is an author and a friend that is a child psychologist who works specifically with autistic children. I also sent a copy to my therapist. After I receive feedback, I will edit my book again. Then I want to send my book to my husband, my daughter Angel, my son Alex, and my brother Luke. After that, I am going to find a publisher. Then I will share it with you.

Perhaps this will start the healing process, perhaps not.

I figure if I can do some really difficult things (like running a 50k or writing a book revealing my trauma), then I probably can figure out a way to do something almost everyone can do. Relax. Heal. Let go.

I have been working with my therapist on brainspotting. I shared my first session with you and that was a very positive experience. After that session, things took a dark turn. I have been releasing all of the negative garbage I’ve been holding inside. It stinks! I’ve been working hard on trying to express my feelings. It has been painful, yet beneficial. Through this process, my lifelong struggle with insomnia and nightmares has gone away.

For a long time, I understood myself. I know what triggers my depression and anxiety. I understand the attacks of my trauma on my well being. But I’ve never known what to do about it. Visiting a therapist is taking the next step. Self-awareness is important, but it isn’t a catalyst for change.

I’m trying to give up control. It’s not like I had any in the first place. Just like being a clean freak never seems to make the dirt go away. Being a control freak doesn’t give peace and serenity to the voice that cries out for it. Worry is a waste of time. It doesn’t bring me peace.

I am trying to figure out who I really am. For most of my life I lived in survival mode. Now who am I? The person I needed to be to survive? Or who I really am? It’s hard to be myself if I don’t know who I really am. It’s a new time for self-discovery and growth. I want to fully experience my purpose in life.

I started meditating. Maybe I will try yoga. I always burned my anxiety off by hard workouts at the gym. This is how I process my anger. I am going to keep this, but add to it by including relaxation exercises.

I am going to read a Bible verse a day. This will incorporate inspiration for spiritual healing and growth. I want to trust God more. I also want to trust the people that care about me even if it means I might get hurt. I want to cultivate meaningful relationships. I want to cut off unhealthy relationships altogether, and if I can’t then I’ll set healthy boundaries.

I also started visiting a wellness clinic for physical healing of my body. My nervous system took a big hit from the long term stress. I suffered from stomach and GI issues my whole life. I’ve been working on avoiding the foods I am sensitive to and rebuilding my gut for optimal physical health.

If I can train my body for a 50k, I can train my body for growth and healing. My book is done, but I will never stop writing. The story hasn’t ended yet. The best is yet to come.

Especially special

Several weeks ago I attended my daughter Arabella’s first choir concert of the school year. It was our foreign exchange student Clara’s first choir concert ever.

I sat down in the theater only to have a teenage girl with Down Syndrome sit in front of me. In all honesty, sometimes I get triggered by people with special needs being a SN sibling. It brings up a smorgasbord of emotions.

The girl was so excited about the concert that you might think she got front row tickets to see Justin Bieber or whoever the hottest pop star is now. She waved her arms, clapped loudly, and cheered for every performer. Her family catered to her the whole show as if the show was about her. I didn’t find it too annoying, just triggering.

At this point, I thought, “Well, that figures!” because a few days before I was trying to free up some of my repressed anger related to being a SN sibling.

I personally think it is wrong to sacrifice for a SN child at the expense of the other family members. Children should be treated as equally and fairly as possible. It’s not fair to SN children to treat them like something is wrong with them either. I understand that SN children oftentimes need special care. I’m not talking about that.

I’m talking about parents that expect you to treat your sibling like every day is their birthday. It’s almost expected by everyone that you treat them like royalty because their disability royally sucks! You are supposed to be the one waiting on the sidelines to cheer them on when they participate in the Special Olympics. You are selfish for wanting to live your own life.

We went when he wanted to go. We stayed home when he didn’t. It didn’t matter how long it was planned. He was the god we were expected to worship. The life of our family revolved around him.

You are expected never to fight with your SN sibling. What kind of monster are you? You are expected never to feel jealous when they get all of the attention. You can’t cry when they hit you because damn you are so lucky to be normal. It is almost expected that you become a special education teacher because having a SN sibling changed your life. How noble.

You shouldn’t feel angry because your parents couldn’t afford your swimming lessons because they had doctor bills to pay. You shouldn’t feel angry that you had to drop out of the show because your brother had to be hospitalized. Why are you upset you lost your best friend because your brother attacked her? You can make more friends. He doesn’t have any friends. Why don’t you want him in your life after he hurt your child? He is your family too.

You are so selfish to want to have your own life! Ungrateful! Look at him. Do you think he will ever have a life as nice as yours? What is wrong with you? Nothing, unfortunately, I am normal.

These things cross my mind when I see you cater to your SN child. Yes, I am selfish. Yes, I am a monster for feeling this way. I am not here to please anybody. In fact I might like you more if you hate me like I hate me. Just like everyone else and their damn expectations. Blah, blah, blah…

Blogging therapy is going well today. Yes, I can see that you are making progress processing your anger.

The show was over. Most people left the theater. After things cleared out, I stood in the aisle and took pictures of Arabella and Clara. The SN girl pushed by me and yelled at me to get the hell out of her way. Her family giggled as they passed me as if her rude comment was the cutest thing ever. Did I not notice the sparkly butterflies and rainbows that she farted out of her ass?

I would like to think that most parents would not shrug off their teenager treating a stranger rudely in public. But she is special, so she shouldn’t be corrected for her bad behavior since basic rules of etiquette apparently don’t apply. Isn’t everyone special and unique just like everyone else? I think I was taught that in school. Or is there a class of especially special specials??

My brother did things like this in public and worse. Sometimes he would physically attack strangers, children. Treating people poorly should never be acceptable. There should never be an excuse for that. That is what makes me angry. At the very least, teach your child it is not acceptable to treat people this way. Make them apologize. Apologize for them. Whatever, at least act sorry. I didn’t find it funny.

Of course, it had to be me that this happened to.

But I suppose if I was like everyone else, I would’ve brushed it off and forgotten about it already.

 

I finished my book!!!

Tonight I’m celebrating.

I finished my book today!

I know that now the hard work begins…editing…trying to find a good publisher. But tonight I will put all those worries aside.

Tomorrow the video I created will be sent out to hundreds of parents of autistic children. Then it will be posted online to be viewed by countless people. I am nervous and excited to see what will happen.

Thanks for your continued encouragement and support!! I just wanted to share the good news!

Done, done, and almost done

I am so relived that all of the difficult things over my head this month are now done.

I finished my first 50k. I wasn’t sure I could do it. Being anemic and having a rough summer health wise made me really question my ability to get it done.

Today I sent in my video to the local autism chapter about what my childhood was like being a sibling of someone who was violently autistic. I also gave tips to parents on how to support their non-autistic children. I created a new Facebook account and a support page for siblings.

Making the video was very difficult, not just emotionally either. Somewhere in my mind I expected that I would look like someone on the news. I would be smooth, polished, and look like I was 25. The joys of being a perfectionist!

I found that I couldn’t make the video when other people were home. My husband walked in the room while I was recording and I had to start over. So I decided to tell everyone when I was recording to not walk into the room. But I could still hear the bass from my son’s music. The beat of the music banged in my head distracting me. I was paranoid that everyone could hear it.

Then I waited for the small window of time where I was completely alone in the house. I was still hoping that the dog wouldn’t bark. I created 3 fifteen to twenty minute videos on my phone. After I was finished, I watched the videos. They were okay. I was very critical of myself. Man, do I look old and tired. Look at those big black rings under my eyes. It was hard talking for that long in front of a camera without a script. Plus I was never one to like hearing recordings of myself singing or speaking.

Then I had problems sending the videos to my contact person because the videos were so large. It took me 6 days to figure that one out after a day and a half of actually making the videos. I wanted to wear the same shirt, hair style, and makeup to look like the whole thing was effortless. But trust me when I say it was not. I deleted more recordings than I kept.

Right before sending them out, I had a moment of sheer panic. It’s that awful feeling that you get before doing something risky, scary, but exhilarating. Would the videos be good enough? Would my best efforts suck? What would my family think? I feared success. I feared failure. My thoughts fluctuated between what I created sucked to everyone is going to know everything I never wanted anyone to know about me. I wanted to delete all of the hard work I put into this.

It is finished now. I sent them. Whatever happens, happens.

Next week I will go back to writing my book. I finished my research. I read about 40 journals written my myself, my mom, and the schools my brother went to. I read countless letters, notes, and articles about my brother. I even went back and reread my blog searching for clues. It’s done. I have everything I need to finish the book.

I am done, done, and almost done. If I heal and help other people in the process, it is worth it!

Fortune cookie wisdom #20

Courage comes through suffering.

This fortune cookie blew away from the rest and was found the same day I found my lost ‘I am courageous’ sock. I only wore the socks once before losing one in Paul’s shirt for a couple weeks.

It seemed like a sign of some sorts. But what does it mean?

What does being courageous even mean? The dictionary defines courageous as not deterred by danger or pain; brave.

I would like to think that I am courageous. In the next couple weeks I am planning on doing courageous things.

This weekend I am running my first 50k. It takes a lot of courage for me to do this and probably will entail a lot of suffering too. There is no guarantee that I will succeed. I am very fearful that I might not be able to achieve the goals I’ve set in place for myself.

Within the next two weeks I will be submitting a 45 minute presentation for a local autism chapter about what it is like to be a sibling of someone with autism. I really need to put myself out there about the most difficult experience in my life. It is going to require a lot of courage. I am finishing my book on what life is really like with a disabled sibling. I’ve had to face my scars and demons.

As an extra test to my bravery, over the holiday weekend a filling fell out. I went to the dentist today to get it fixed. They said I could probably do it without being numbed. I would rather run a marathon with a broken leg. I was horrified and then they said I could get anesthesia just in case. But I decided to brave it despite my fear.

Then this past weekend I spoke to my dad about God. I don’t feel like he has much time left. For some reason he has softened his heart toward me lately. He told me that he loved me for the second time in my life. The first time was on my 18th birthday prompted by my mother. Then this weekend I asked him to come out and sit with us, his family, by the campfire. Surprisingly to everyone, he did.

Before this, I justified to myself that someone else should talk to my dad. My brother Luke sat down with my parents awhile back and aired out all of his grievances. It seemed like a good thing. I thought that he was getting along great with my dad. I felt like Luke is a better Christian than I am so he could carry the weight of talking to our dad. But my eyes were opened to the fact that Luke and my dad do not get along.

My mom is a devout Christian and my dad is a Christian bashing atheist. I bet you can guess how that worked. I believe that the best marriages are of those that have the same religious beliefs. Because, we the children, have to take sides. I feel the need to talk to my dad about God. I most likely wouldn’t have that burden if both my parents were Christians or atheists if I followed their beliefs. It causes a lot of disharmony and stress.

So on the way out of the cabin this weekend I said to my dad that I hope he finds God before God finds him. My dad laughed and said fat chance. I knew that my words probably did no good for him, but it released me. I did everything I could and if it is the last time I see him I will know that I did not leave a coward.

I don’t think that I am more courageous than the average person, but I am trying to be brave when there are demons to slay and fears to conquer.

 

Expectation reflections

It hasn’t been too much of an adjustment having 4 teenagers in the house.

Our foreign exchange students have been very quiet and friendly. When we told others of our plan to have 2 foreign exchange students, they cringed. Most shared horror stories of wild teen exchange students that made every effort to sneak out and party. So far there haven’t been any problems.

It’s probably because they are not comfortable being family yet. There aren’t any fights or talking back. We are all on our best behavior, no belching or farting. My husband has been giving them special treatment. He is buying the foods they like, taking them to places they are interested in going, asking if they are too hot or too cold. It’s hard not to treat them like visitors.

This is going to sound insane, but I felt a twinge of jealousy. It triggered something inside of me that reminded me of my mom’s special treatment of my autistic brother Matt.  Everything in our house revolved around Matt and what he wanted. I honestly wasn’t expecting to feel that way.

Of course, the students paid a lot of money to have a great experience here. I want things to be wonderful for them. Things are going really well. The girls don’t seem to be too homesick. If anything, at times they seem a little bored. But I’m sure that will change once school starts and they make friends.

It’s fun because they get excited about all of the little things, like going to the grocery store. They eat differently than we do. They use their knife and fork to cut things more. They cut up grilled cheese sandwiches instead of just picking them up and plunking them in their soup like I did.

Today Clara made homemade German potato salad for our friend’s Octoberfest party tomorrow. Real German food!

I also didn’t realize how much Hitler and the nazi’s were the butt of American jokes in TV and movie comedies. Awkward! But none of us were alive when any of that happened. If anything, countries that were once at war can be friendly towards each other again.

Hopefully in the next couple weeks the girls will come out of their shell a little. As for right now, I’m really happy that things are going better than I expected.

Brainspotting

I’ve realized a few new things about myself over the past couple days. The things I once thought were normal, or at least normal to me, I am questioning. I think I just got used to some things that are just not right.

There isn’t a day that goes past that I don’t think about the childhood trauma I’ve experienced. I wish I could just get over it or at best think about these things every other day. As a result, I’ve struggled with lifelong anxiety and depression.

But that isn’t all. I constantly experience exhaustion and fatigue. My doctor wanted me to go in for a sleep study when I was in my 20’s. I did and was told that I never went into deep sleep.

I started reading the book The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Dr. Bessel Van Der Kolk. I would highly recommend the book if you have experienced or are interested in trauma in general. One of the chapters talks about EMDR. EMDR is a therapeutic process in which someone focuses on a pointer moving back and forth while thinking of traumatic experiences. It somewhat mimics REM sleep which PTSD sufferers apparently don’t get a lot of. It is supposed to be very effective in healing trauma.

When I was a little girl, my autistic brother was physically violent with me on a daily basis for years. Sometimes while I was trying to sleep at night, he would come in my room and threaten me with violence. As a child, I slept with my door open. You see, I was afraid of the monsters in my closet and the ghosts under my bed that would attack me when my door was closed. I thought like a child. I feared illogical demons instead of credible threats to my safety.

The stress hormones pumped through my veins with a steady beat day and night. My body learned to never relax. I had to be alert for danger at all times. Deep sleep wasn’t safe.

I started paying attention to my sleep patterns lately. They’ve been the same as long as I can remember. I don’t have problems falling asleep, but I can’t seem to stay asleep. I usually awake between 2 and 4 and stay awake for an hour or two. I try not to think because then I might as well get up because I won’t be able to fall back asleep. Sometimes I get up and walk around.

Usually once or twice a week, I have bad dreams. It seems when I am just about ready to go into REM sleep, my body awakens me. Even though the danger is gone, my body is still on high alert.

I can’t remember the last time I slept through the night. I can’t remember the last time I didn’t have a nightmare when I had a dream. When things are really bad, I experience insomnia and intense nightmares together on the same night. These are the nights that I wake up sobbing, can’t go back to sleep, and if I do I have nightmares again. Thankfully it doesn’t happen all that often.

I am exhausted, but can’t relax. My anemia is making things worse. I lack energy and can’t seem to think straight.

My counselor is trained in brainspotting, which is an offshoot of EMDR. Next session I am going to give it a try and see how it works. Maybe I’ll finally be able to get some sleep. Even though a pattern of insomnia and nightmares is normal to me, I don’t think that it is normal. Maybe there is nothing I can do about it, but I’m going to try.