What else could go wrong??

Seriously, what else could go wrong?? Have you ever muttered those words to yourself only to regret them a few minutes later?

It’s been one of those days.

After I got home from running 5 miles at the gym, I got ready to wash a load of towels. So far, so good. I grabbed a dirty towel off the rack in the bathroom and went to turn off the light. The light switch is next to a door frame made of rough wood. As I was turning off the light my finger went down the wood frame and I got a splinter under my nail. It was extremely painful.

I got out the tweezers and tried in vain to get the splinter out. After a half an hour I sent a text to my husband to come in from his office to help. He tried a couple times, but it was so painful I started crying.

I decided to call the doctor’s office, but they were fully booked until like August or something. This is a horrible story, but I was thinking about a friend of ours that had a sliver under his fingernail that got infected. A couple months ago he ended up having to get his finger removed from that infection.

I decided to go to fast care. I didn’t want to have any more problems over the holiday. When Paul and I got there, they said that they didn’t have the tools to help me. So we walked around the store while I thought about what to do next.

In the meantime, my aunt Jan texted me saying I needed to take care of my mom. The devastating news I got was about my family. I wish I could tell you everything, but I can’t right now. Anyway, I was kind of upset about the text. Why do I need to take care of my mom? I am also going through hell.

While we were in the store, my aunt Jan called Paul. She wanted to make sure I got her message and Paul told her how he felt. He said that I have been taking care of my mother since I was a little girl. Who is taking care of Alissa? Why ask me about my mother? Why focus on my autistic brother? No one ever cared enough to ask how I was doing. I was just expected to be strong to take care of everyone else.

Paul told Jan that I have my own family now. I have 4 teenagers in the house. Alissa just needs to take care of Alissa because she is having a really hard time now too. It felt good to have someone stick up for me. But it didn’t feel good to have a personal conversation in the store while I was stressed about my finger.

Next stop, urgent care. The lady at the front desk asked me if I wanted to pay for my care. I mean, not really. Who does? But I wasn’t in the mood to make wise cracks.

Thankfully I was able to get in right away. The doctor tried in vain for a half an hour to get the splinter out. It was very painful because he had to dig in my nail bed. I was bleeding.

He said I had a couple options. First, I could do nothing. It most likely wouldn’t come out on its own, but it might. He could give me antibiotics. If it got infected or continued to be painful, I could contact a hand surgeon to have it removed. Or he could give me anesthesia and keep trying to dig deeper under my nail. Even then he gave himself a 50% chance to be able to get it out.

I just wanted it out, so I opted for the anesthesia. The anesthesia numbed my finger, but it still hurt. It was just like going to the dentist. I could feel everything even though they gave me enough anesthesia to take out my tooth. The doctor gave me a second dose of anesthesia. I could still feel pain, but it was muted a little.

I felt like I was going to pass out. I was in pain off and on for a couple hours at that point. I felt sick although I didn’t eat hardly anything all day. After another 20 minutes of poking underneath my nail, he was able to get it out.

While I was there, I heard screaming in the background. Someone else was vomiting nonstop, and another guy went into cardiac arrest. Call 9-1-1. When I got back to the reception area, it looked like a crime scene. There were several squad cars and ambulances. People were huddled together crying.

I debated whether or not Paul and I should burn our clothes after our trip to urgent care. Who wants the plague for Christmas??

Then I came home and did a head lice check on one of my kids. Thankfully, I didn’t see anything. Oh, and I almost hit a deer picking up the girls from school.

Honestly, I’m not even sure if it is safe for you to be reading this.

 

 

My pretty mask

I panic as I sit here waiting. I know I have catastrophic anxiety, but in all of my worry I never imagined this.

Waiting is terribly hard when you know something bad is going to happen. This time it really is. I hear the time bomb ticking its countdown in my chest. I want to stop it but I can’t. I just have to brace for the explosion and pick up the pieces when it is done.

The panic sets in. Maybe somehow this is my fault. Maybe I did something wrong. Maybe I could’ve stopped it. Will I get in trouble? This paranoia is making me crazy.

I feel angry. I am broken already. PLEASE STOP MESSING UP MY LIFE! Will it never end? Sometimes I secretly wish you were dead. I’m sorry, I shouldn’t have said that. I am supposed to protect you, yet you never kept me safe.

I am so sad for what I didn’t have. Everywhere I go it is rubbed into my face. Maybe my life would be better if I wasn’t in it. I can’t stand feeling this way anymore. I’m drowning, alone. I reach for your hand, but no one is there. I grab at whatever comfort I can find as I go under.

My therapist says I need to break this conditioning. But maybe somehow it is my fault. Maybe somehow I can fix things. I don’t know what to do. But I know what you will do. You will ask me to be a doctor when I’m not even a nurse. Did you forget that I am hurt too? How did I get chosen to be the bellhop for your baggage? Will you never stop ruining my life?

I want to feel joy. I long for peace. But you never set me free. I am foolish enough to think I am getting away when I stick my arm outside of my cage. I fear I will always be trapped here. How can I get out of this? Every time I think I’m out, I’m still locked inside.

The numbness is wearing off too soon, the pain isn’t gone yet. HELP ME! I want to hide in the dark empty void of my mind. But you said it is not safe in there anymore. The demons live there that ravish my soul. But can’t you see I am already in hell? I’ve gotten used to the warmth of its raging fire. Now I’m so cold.

You can’t let them win. Feel joy in your times of sorrow. I wish I could. I feel like I am going to throw up.

Is my life some sort of cosmic joke? Funny, but I’m not laughing. God, what is the purpose?

You mar me with your filth until I can’t even see the goodness in me anymore. I could wash my hands of it a million times and still see the dirt you left behind. I want nothing to do with it.

I want to be on a warm beach somewhere serene. But even there I will find no solace, no escape. Everywhere I go, you come with me.

I see your reflection every time I look at myself in the mirror. My beauty mocks the ugliness inside. It oozes out of me. I wish I was ugly on the outside so no one would notice me.

I put on a smile and say everything is fine. I wear my pretty mask with all the glitter and glitz. I’m okay. I’m good. How about you?

Why am I not happy all of the time? I seem to have it all.

It’s amazing how easily people believe the lies they want to hear.

I’m glad you like my pretty mask. But I have to ask. When will the show end? I’m getting tired of acting normal.

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.

Broken peace is

What do you want more than anything in the world?

I want to feel inner peace.

What does that look like for you? I want you to give it a color.

Peace is purple.

Now I want you to visualize releasing the painful feelings and replacing it with purple. Cover your whole body in purple. Let it radiate inside and out.

Little bubbles of red hot anger evaporate. Blue bubbles of sadness and despair evaporate. As they are released, the bubbles burst. The blue and red mix together. Purple peace rains down on my black and white world in brilliant color. My body is glowing purple.

Now I want you to embrace your inner child.

But I want her to be gone like the red and blue. I want her to take her pain, pack up her baggage, and never come back.

You must realize that cannot be done. Do not reject her like her dad did. Embrace her. Bandage her wounds. Wipe her tears. Accept her broken as she is. After all, she is you.

The path

It’s very important. That is why I got up before everyone else did, so I could tell you.

I am on a narrow path. It leads from my house to the backyard where there is a clothesline that I can hang my laundry on. There are two people on my path, a man and a woman. They walk down the path twice a day at the same time everyday. I’ve gotten used to them, their patterns.

The path is very plain. I only have the things there that I need to survive. No more, no less. One day a garden light is put a little way off my path. I think the two people put it there because they are the only ones I ever see on my path. But I didn’t see them do it. I really don’t know because they never speak to me. They just walk in silence across my path in the morning and disappear until they walk back in the evening.

Nothing happens for days after I notice the change. When I think it is safe to veer off the path to look at it, it becomes a vicious snarling dog. Every couple of days I notice another garden light is added. I am curious, but I have to get used to it first. After a while it almost belongs there and feels safe. Maybe I can look at another one just outside of the path I must not stray from. Once I do, instead of a vicious dog I see a golden retriever. I am very frightened because I can’t seem to differentiate safety from danger.

I cry out in terror. Seeing the dog, any dog, triggers the panic in me from the vicious dog. The people show up at an unexpected time and laugh at me because I am afraid of a harmless tail wagging golden retriever. I feel frightened and alone.

It was safer to never veer from the path. Instead I needed to be more rigid and structured to feel safe and find comfort. I must follow the same routine, the same pattern. Everything must stay exactly the same. Nothing will change and I will be safe. I’m not sure the people are safe, but they are predictable if I stay on the path. If I try to leave it, they are not safe.

Every day there are more garden lights. I don’t even notice them anymore. I stay within the boundaries. But one day something scary happens. The wind blew my laundry off the line off my path. I was responsible to care for my laundry. It was part of the routine that must be followed. I now have a dilemma, a conundrum of sorts. I have to grab my laundry, but I am terrified to veer off the path. Maybe if I grab it as quick as I can and come right back then nothing bad would happen.

Nothing happened when I grabbed my laundry, except I began to notice the world outside. It changed me. I began to see things differently. I went back inside my mansion and noticed for the first time that I was only using a few rooms. There were garden lights outside of doors that I was afraid to even go into. There was so much more out there to see, to be, if I didn’t let fear stop me.

Anxiety has a way of trapping us in what we know. It was important to cling onto at one time in order to survive. Now I see a whole new world out there to explore. There are rooms in my house I have yet to go in. Fear always stopped me. I clung to structure and routine. But there is so much more. Maybe it will be safe now.

The dream awoke me. It all makes sense now. I must write this down.

The floodgates have finally opened and poured onto my paper. I can write again. I am back.

 

Finding the key

I had a visit with my counselor to try brainspotting as an attempt to heal from the trauma I’ve experienced in my life.

I wanted to tell you about it before I forgot. It was a strange, almost mystical experience. My counselor asked me to bring in an item that would remind me of something tragic. I talked about the experience and then she had me follow a pointer with my eyes until I felt the strongest amount of emotion. I also had to focus on a part of my body that I felt that emotion in. I picked my stomach, because when doesn’t it hurt?

I was asked to visualize the negative emotions leaving my body. I thought of my grandma, that she was with me although she has been gone over 10 years now. I imagined blue birds taking the negative emotions from the top of my head from my straw like hair. Later I imagined that all of the negative emotions and pain that I experienced were worms that spilled out of my mind to feed the birds.

There was a great outpouring that the birds carried away, then later balloons came to assist the birds. I told my counselor that it felt weird. I was very skeptical and thought it was rather stupid at first. I am a very logical person, structured and rigid. There is no room in my mind for fantasy, make believe, imagination, playfulness, and magic. My world is not sparkly, it is black and white. My counselor said that is how I dealt with the trauma in my life.

After the appointment, I felt a sense of peacefulness that I can’t remember experiencing before. I did feel some brief intense anxiety that the birds flew in and took away. I slept for threes nights in a row without insomnia or nightmares. I even slept through a storm. I can’t remember how long it has been that I slept for three nights in a row without insomnia or nightmares. It was amazing.

But then it went away. The sadness settled back into my mind. Every time the balloons wanted to carry it away, the birds popped the balloons with their sharp beaks. Then the insomnia and nightmares came back.

There were two other times after that when I felt like the birds were taking out the worms and decay, on my first run after the 50k and when I was getting a massage.

Now, several weeks later, I am on lock down. The rational and logical part of my brain took back control. It is all rules and structure. There aren’t any feelings, good nor bad. I am back home where I feel safe.

But now I know there is another world of childlike wonder locked away somewhere in my mind. There is hope that one day I will once again be able to find the key to peace and serenity.

 

 

Unrest

I don’t want to do this anymore, this whole life thing. I want to hibernate somewhere, hidden away under cover.

I don’t know how I got to this point. I’m just tired of it. I’m just tired.

I couldn’t fall asleep last night. It was after midnight before I silently fell into slumber. This happened twice this week although this type of insomnia rarely happens.

I couldn’t stay asleep last night. I slept restlessly. I awoke several times. At 4 AM I had to go to the bathroom. This is the type of insomnia I call home.

I had one of the most intense nightmares that I had in a long time. I was a little girl. I was brought to an empty house because there was going to be a lot of blood, my blood. I went willingly because I knew I had to be the sacrifice. I was afraid. I was going to be hurt badly, but I would live through it. Before anything happened, the owner of the house came back. She looked like a grown up me. I told her that she needed to leave because she would get killed for being there. She tried to help me, we ran away. She was killed and I hid in the closet terrified knowing I would be next. Now we both were going to die because she tried to save me.

I awoke at 5:30, less than an hour before my alarm was going to go off.

Today is the day that my video is being posted. I didn’t know it until this morning. I hate the video. I want to destroy it. I feel so anxious about it.

Why do I have this need to tell everyone about the things I’ve experienced? I just don’t want to do this anymore. I don’t want to write. I don’t want to blog. I want to disappear off the face of the earth like I never even existed.

I thought of strange things. I remembered the book my mom used to read to me about Toad and Frog. They left the door open and winter came in. They were cold, sad, and lonely. They made soup out of their tears. It was almost as if the hauntingly sad child me came for an unwanted visit. But to cast her away would destroy us both.

I struggled to find the motivation to do everything I needed to do. Some days are like that. I’ve been stirring up my demons. But I was able to make it through. It is hard to do when my body and mind doesn’t let me rest.

Maybe tonight I will sleep.

Unrest.

 

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.

More than a shot

I took a pregnancy test today.

I had to take the test before I got the MMR vaccination which contains a live virus. Back in the 1990’s, when I was pregnant, my titer showed I was not immune despite receiving the shots in the 70’s.

I decided to get a booster shot because of the recent outbreak and my love for international travel. I might want to go on a mission trip in the next couple of years which will also take me off the beaten tourist trap path.

I started to think a bit more about vaccinations, more specifically the MMR vaccination. With the measles outbreak, I saw a lot of hateful comments made towards the anti-vaccination folks. I saw babies that wore shirts in photos saying, “I’m vaccinated because my parents aren’t morons”. I found this to be offensive because I’m sure most parents that don’t vaccinate are not morons.

Perhaps my opinion is not popular, but stick with me for a moment.

I had my first baby in 1998. In 1998, an article was published in a medical journal linking the MMR shot to autism. It caused a huge scare that I believe hasn’t been fully eradicated to this day. At that time, I was more fearful that my children would be severely autistic like my brother than to get measles, a disease that I’ve never seen anyone contract in my lifetime.

Later, after the article was published, we were told that the link was a sham. Being a very logical person, I wondered what kind of medical journal would publish crap research findings. Can anybody publish any research article that they want in a supposedly reputable medical journal?

I also thought about conspiracy theories. Here you have huge pharmaceutical companies making big money off of vaccinations pitted against a small probably under funded research doctor. Of course there wouldn’t be a link. Follow the money. What were concerned parents supposed to believe? You can’t just erase something you already saw. Shame on the journal for publishing the article in the first place if there were so many issues with the study’s validity. It caused so much unnecessary fear.

It was horrifying and I struggled with making the decision to have my children get the required vaccinations. I am happy to say that my children are fully vaccinated. I thought the best way around it was to vaccinate my children with the MMR shot after they safely passed the age when most cases of autism are diagnosed.

I feel angry with people who quickly judge others for not vaccinating. They are usually not morons, they might just be fearful like I was. My babies were born at the height of the autism linked to vaccinations scare.

I think that most people who choose not to vaccinate have their reasons not to. It is not lazy parenting. Believe me, it is a lot more work to choose not to vaccinate. I did receive some criticism for doing things on my timetable. But even if there was a small iota of a chance that vaccinations caused autism, I needed to be careful. Where those people that shamed me going to come in my house and take care of my child if he/she became autistic?

I honestly don’t know if I would have the strength to live through it again this time as a parent.

I have a lot of respect for people that grew up with a special needs sibling that end up becoming a special needs parent. I don’t think I have the courage to fight that battle twice.

I get angry about talk of forced vaccinations. Shouldn’t parents have the right to make that choice for their child?

I think pro-vaccine people would be more successful listening and being empathetic to the concerns of parents who don’t want to vaccinate. Don’t treat them like they are a bunch of morons because that won’t get you anywhere. Morons blindly follow. But educated people question and try to make the best decisions they can.

I am pro-vaccination, but I strongly believe that the parents should make the decision and be treated respectfully whatever they decide.

 

 

forgotten

One of the hardest parts about being a special needs sibling is being forgotten. It’s like I don’t even exist. Forgotten, no one would miss me if I was gone. It’s hard to get over the voice in my head that is on repeat saying that no one really cares about me.

Yesterday I went out to eat with my mom. At the restaurant, my mom noticed our previous dentist sitting near us. He lost his license to practice dentistry over a decade ago. He wasn’t the first provider that we had lose his license either. Let’s just say when traditional medicine didn’t heal my autistic brother, my mom went the alternative medicine route and some of those doctors were quacks.

My mom went over to talk to our dentist about Matt. She showed him all of Matt’s most recent pictures. On the way out, we said good-bye. I told my mother that the dentist probably remembered me. After all, I was the patient with the small mouth that no dentist could numb for fillings. My mom talked to the dentist some more about Matt, then asked the dentist if he remembered me.

The dentist said that he did not remember me. He had a very large practice and wasn’t expected to remember every patient. I was in his office so often that I still remember his secretary’s name. It was like a kick to the teeth. The polite thing to do would’ve been to lie. Yes, I remember you. How are you doing now? Instead he asked for my mom’s phone number because he would like to schedule a time to come out and visit Matt.

I told my husband about the interaction and he was rather appalled. But I told Paul this was the typical response.

As a teenager, the rare time I was with family friends or family, they would pepper me with questions about Matt. They asked how my brother Matt was doing with the same sympathetic frown on their faces. I was barely holding it together, but no one ever asked how I was doing or how my other brothers were doing. Yeah, just trying not to swallow a whole bottle full of pills here. But who cares?

As a child, I wanted something to be wrong with me so that I would be loved too. My babysitter told me if I wore her thick glasses and looked in the mirror, I would need glasses too. I wore her glasses looking in the mirror with a metallic gum wrapper covering my top teeth with a paper clip. I wanted to be special too.

I had a lot of stomachaches as a child. I could barely eat I felt so sick. But I wasn’t as sick as Matt. I didn’t need to go to the doctor. Matt’s valve between his stomach and intestines closed, and he almost died. What was I bellyaching about? I just wanted attention.

But as I am currently facing health issues, I wonder if I am just being paranoid. Maybe it’s just me wanting attention. Maybe it’s nothing and I am just crazy. I am probably just being selfish to focus so much on myself. Look at Matt.

It was always that way. It will probably always be that way. Seriously, who cares anyway? My thoughts and feeling don’t matter. I don’t know why I even bother.

I remember a special occasion with family several years back. We were supposed to go around the room and share something special that happened in our family over the past year. My mom spent 20 minutes in tears talking about all of Matt’s medical needs. She did not once mention that my brother Luke, who wasn’t there, got a HUGE promotion at work that year.

We are the forgotten ones. It makes me feel both sad and angry, hurt. But it was always like that. I should be used to it by now.

I didn’t feel that way about my dad. He pretty much checked out altogether. But in my mom’s life, the sun will around revolve around her special son Matt. Our accomplishments don’t matter. It doesn’t matter that Matt hurt us or our children. We should all work together to worship our god Matt because his life sucks.

My mother is a great person, a martyr perhaps. I feel guilty for my disloyalty. But the one thing that grieves me deeply, far beyond the memories of the physical pain of being attacked by Matt, is being forgotten. It’s hard to get over feeling like no one cares about me. Sometimes it’s hard to be caring towards myself. I feel selfish for sharing my wants and needs.

Forgotten.