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Mental health awareness month

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Many of you are probably aware that May is mental health awareness month. Maybe you already shared the cutesy memes on social media stating you are a friend that anyone can call day or night. Maybe that is enough for you to feel good to check off your awareness month, and have moved on to planning your pride party for June. Or maybe you also live in Wisconsin and are stocking up on cheese curds for June dairy month. I know, I know…cheesy..

Or maybe you are like me and found out that mental illness is not all that cute. Maybe you or your loved one has already lost the friend that you can call anytime. Mental illness is tough. I’m sure everyone who struggles with it would remove that part of their life if they had the choice. It’s so painful and malignant, that far too many remove themselves from life altogether when it refuses to leave them.

Through NAMI, and talking with other parents whose children struggle with mental illness, I was surprised to find some striking similarities. I am not the only parent whose child attempted suicide. I am not the only parent whose child was incarcerated after a psychotic episode. I am not the only parent whose child, after making abuse allegations, moved in with another family. I am not the only parent whose child hears voices commanding them to end their life and soothing voices telling them how peaceful death is. I am not the only parent whose child has lost a lot of good friends because of their mental illness. I am not the only parent whose child was bullied because they are different.

I could make a much longer list. But the point here is awareness. Don’t blame the family. Don’t blame the mentally ill. Most would choose to change it if they could. Don’t shun them out of ignorance or fear. Treat them as if they have a potentially life threatening form of cancer. Treat them with compassion while being mindful of your own mental health as well.

Be kind to the server who has cutting scars all over her arms. For today, she has successfully battled the voices in her head. She has battled the voices outside her head sending similar messages about her worth. She has many battle wounds but is still alive fighting. That girl is also my daughter. But she could be your daughter as well. Or your son, sibling, parent, partner, neighbor, friend, or yourself.

Be aware that one in five Americans struggle with mental illness.

Life around here lately

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It seems like forever since I wrote about life as it currently is. I don’t know where to start. And now we find ourselves at the end of May. The temperature is slowly starting to climb up and today we face the first risk of severe weather. The air feels charged and I hear the rumble of distant thunder. But for a time I’ve found myself in calm waters.

This past weekend Paul and I went to a NAMI (National Alliance on Mental Illness) training seminar to prepare to teach a class for families next winter. It was an excellent educational experience, albeit exhausting. Paul is gearing up for another busy summer running our seasonal business. He had his annual physical a couple weeks back and his numbers weren’t quite where they were supposed to be. Tomorrow he is going in for a CT scan. At this point, we haven’t talked much about it to others and are trying not to worry.

Angel already finished reading the memoir I wrote. I haven’t had the opportunity to talk to her much about it, but I think she loved it. She was happy I shared it with her and if nothing else she has a small piece of her family history. I’m not sure how she did it, but she was able to upload my book onto her Kindle to read it. It was a strange experience to see my book in that format, almost as if I was already a published author. Over the weekend, Angel finished her second half-marathon. She was going to run the full marathon but suffered from an injury earlier this year so is putting the full off until the fall. Dan was going to run the half with her but he also got injured right before the race and couldn’t run. I know she will finish her goal of running a marathon.

Alex just completed his certificates in audio recording and music production. He has been given the opportunity to play in a wildly popular local band. We’ll see where he goes with it.

Arabella has been doing well. She is on a medication regime that works for her. For the first time in her life she considers me a best friend. We have been getting along better than we have ever gotten along before. I’m trying to enjoy the good times with her while they last. It’s been a very long road to get to this point for all of us. Last week Arabella turned 21. Although the doctor said she could only have one drink, the family pulled together and made it a great day for her.

I can’t complain, things are going well and I’m enjoying having a close relationship with all of my kids. That doesn’t mean everything is perfect. I enjoyed Mother’s Day with all my kids and their significant others. It turned out to be a hot and humid day which rarely occurs so early in May. I didn’t have much of an agenda, just church in the morning, yard games in the afternoon, and going out to eat that evening at the restaurant Arabella works at. My brother Matt was sick so my mother came over without him which was nice. If Matt were there, my mom would cater to him and leave early. My mom stayed to go out to eat for supper.

I did find myself annoyed with my mom on Mother’s Day. When we asked if she would go out to eat for Arabella’s birthday, she said she wasn’t going to go because she didn’t like tomatoes. What did that have to do with anything? She ended up changing her mind later in the week and ended up going but I was irritated. We had a long wait to get a table at the restaurant and once again I found myself irritated because there wasn’t a lot of seating in the waiting area. I was annoyed that the young people weren’t offering up their seats for the elderly patrons. It’s a big pet peeve of mine.

All in all, it was a good day. Angel and Dan came to church with us. Angel made some lemon dessert bread which she has to save the recipe for. It was excellent! Paul made us a nice lunch of grilled cheese, tomato bisque soup, and salad. We played bocce ball and jenga (which I lost at twice). We enjoyed the sunny day. Angel and Dan left before supper to visit Dan’s mom. We had a great supper with Arabella as our server. Later in the evening, Paul, Alex, Lexi, Arabella, and I were going to watch a movie. Arabella said she wasn’t feeling the best and wanted to go to bed. Next thing I heard was several big splats from the other room and a call for mom. Arabella threw up all over her bed and the floor. Lexi offered to help me clean up the mess, but I refused.

That’s what being a mom (a parent) is all about, taking the good along with the bad. And hopefully when the storms come, being able to weather them.

The sun is shining now, but I know the storms are coming soon.

Fortune cookie wisdom #53

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Let’s finish this up now, someone is waiting for you on that.

I received this fortune cookie several months ago, or who knows maybe my husband did. At the time, he said it was about finishing my memoir. Well, this past week I finished it. I thought I would feel excited, but I felt rather somber about it. Instead of relishing in the success of completing my goal, I felt like I finished my life’s grand purpose. I spent years thinking about it and working on it. I had the idea in my mind since grade school.

I know it sounds melodramatic, but what will I do next? I want to keep writing. For the first time I considered writing fiction. But at this point I’m really not sure. There is still much work to do to get my book published.

I told my daughter Angel I would let her read my book. I want my husband to read it too. This past weekend my daughter loaded my book onto a flash drive. It makes me nervous to think she will start reading it soon.

Maui, Hawaii

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On Easter morning, we left Big Island and got on a 35 minute flight to Maui.

It didn’t feel like Easter. I wondered how things were going at home. Arabella was spending Easter weekend with my parents. Dan and Angel were spending the day with his parents. But as far as I knew, Alex and Lexi didn’t have anywhere to go. It’s complicated because Angel and Alex don’t want anything to do with my dad (rightfully so) and haven’t seen him in over 4 years.

Then I saw a picture of Alex and Lexi with Angel at her in-law’s house. I was overjoyed they weren’t forgotten. Angel’s mother-in-law even made little candy baskets for my kids and invited them over for their family Easter meal. It was kind of late in the trip, but I felt like everything was going to be alright at home.

It was strange travelling over Easter. The beaches were full, but were they full of locals on holiday or tourists like me? We had 20 people in our tour group when they usually have 40. We were the youngest couple in the group. Even our tour guide was in his 70’s. It was a good trip for him to get his feet wet though. Everyone got along with each other and were pleasant for his first tour.

On Easter evening, our tour group went to a luau. They had a pig roast buffet and free drinks. We watched the hula dancers perform to live music. The dancers weren’t unhealthily thin. They looked like average people. At the end we saw a fire dancer perform. I’m just shocked he didn’t burn the place down or start himself on fire. It was still incredibly windy and we were set up outside. The show was something new and interesting to experience of the Hawaiian culture.

I have to say I absolutely fell in love with Maui. In my mind I started to plan my son’s wedding so we could go back there and enjoy it once again. I know, I know…they aren’t even engaged yet.

The hotel we stayed at was right on the ocean with a sandy beach you could feast your eyes on for miles. There were mountains in the distance. The water was a clear, clean blue. The temperature was perfect. Almost everyone on the beach was a tourist staying in a chain of hotels. We spent two full days on the beach. One day we went snorkeling with sea turtles and saw tons of beautiful tropical fish. On our last day, we even saw a whale. Another first.

Again, the food was mediocre. Spam is a big thing in Hawaii, but you won’t find it on restaurant menus. In a convenience/souvenir shop, Paul found Spam sushi which was basically warm Spam on rice. I tried it and it was great. They didn’t have a lot of specialty drinks either. I did have a guava daiquiri. The flavor was good but it was more like a watery slushy instead of a refreshing cool drink. I did like the Lemongrass Luau beer, very flavorful.

One day we had lunch at the Maui Brewery. Although it was next to the beach, it was very separate from it. You couldn’t just slide in wearing beachwear. I bought a pint glass to bring home as a souvenir.

I saw some seriously disabled people at our hotel. People who had to be pushed around in wheelchairs. I thought it quite unusual until our tour guide said some of the displaced people were staying at hotels. The Maui fires really did a number on a large population of people. After the fire last August, the citizens have not been allowed to go back to their property. The clean up has been stalled and people are very upset about it. We saw encampments along the beach of displaced people living in tents. There was also a community of displaced people living in small construction type trailers so they could be close to work. I’m hoping the people who couldn’t stay in tents got first dibs on the hotel.

As we were leaving, the hotel manager gave us beaded leis and did a good-bye ceremony with us. She told us that not only did many people lose their homes, many lost their lives. She said the island was usually a cheerful place before the fires. But everyone on Maui was collectively mourning the loss of their loved ones or their homes along with everything they had in some way. She said since tourism is how they make a living, a lot of people had to go to work with a smile on their face when they were still mourning. Everything looks beautiful on the outside, but on the inside there is a lot of suffering there.

The people of Maui are strong and will get through this. They have had a tight knit sense of family and community for many generations. They have something special there from living in an isolated area geographically. It’s not as easy to pack everything up and leave.

Visiting Maui was the highlight of our trip to Hawaii.

Oahu, Hawaii

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Waikiki Beach

Paul and I flew into Honolulu directly from Chicago on a nine and a half hour flight. Surprisingly, the flights were all uneventful. Over the course of our trip, we had a total of seven flights. We were meeting with our tour group at a hotel in Honolulu a block from Waikiki Beach. We arrived late on a Tuesday afternoon tired from our travels. We grabbed a quick supper, met up with our tour guide, and took a short stroll on the beach. Waikiki Beach was busy and bustling with people. Skyscrapers lined the streets along the beach. We learned that all beaches in Hawaii are public. There weren’t any places along the beach you could walk up to and grab a drink. Alcohol was not permitted on the beach.

We went to bed around 9PM that first night which was 2 AM at home. Around midnight we were awoken by the sound of alarms going off and a booming voice over the loudspeaker to evacuate the hotel. We were half asleep as we grabbed something presentable to wear and groggily left the room. We were on the 12th floor and the stairwell was packed with hotel guests. The line moved slowly. If there was a fire, we would really be in trouble. In about 20 minutes, we made it down only five flights. No one took anything with them more than a phone. After we made it down to the 7th floor, someone yelled out that the alarm was cancelled. The alarms were still going off and people were getting upset and panicking. Someone yelled down and asked by whose authority was the alarm cancelled. Some people were still trying to get out of the building while others were trying to go back up to their rooms. It wasn’t until the alarms stopped ringing and a voice said over the loudspeaker that the alarm had been cancelled did everyone slowly make their way upstairs to their rooms.

We would’ve been really screwed if there was an actual emergency. There was no way everyone would’ve been able to get out because we were on a middle floor. Not to mention no one seemed to grab their id’s, medications, or extra clothing. Being a country girl, I was feeling a little trapped on the higher floors. But I was too tired to worry much about it.

The next morning we left the hotel early to do some sightseeing on the tour bus. Our main stop for the day was Pearl Harbor. There were a lot of exhibits to see. Paul had to check everything out, but I wasn’t feeling well. At home, I felt like my medications were finally right. But flying seemed to throw everything out of whack. I wasn’t sure I was going to take the ferry ride to the memorial site, but I’m glad I did.

The atmosphere at Pearl Harbor was quite somber. The guide said we should treat the memorial site respectfully like we were at a cemetery. We were to be quiet on the ferry and not use our phones except to take pictures. Afterwards we watched a short film about Pearl Harbor. I never really understood the magnitude of the destruction until I was there to see it. And I still cannot imagine what they went through.

The memorial stood over the place in the water where the U.S.S. Arizona sunk entombing hundreds of men.

The day after the Pearl Harbor tour, we had one more full day left in Oahu which we spent on Waikiki Beach. I had imagined it would be full of surfers riding huge waves, but it wasn’t like that. There were a few surfers but nothing like the 10 foot waves I was thinking I would see. Honolulu was a huge city. Its waters were filled with sailboats and cruise ships.

Waikiki beach at night

One thing we saw right away was a rainbow. We found out that Hawaii is the rainbow state. They have a rainbow on their license plate. We don’t see rainbows that often at home, but while we were in Hawaii we saw at least one rainbow every day.

Being a large city, one thing I found odd about Honolulu was that there were chickens running around everywhere. You could see them running wild on the side of the highway. They have a rather large population of wild chickens in the city. They also have wild boar on the island, but we certainly didn’t see any roaming around the city. Surprisingly the menus in most restaurants were very limited to burgers, pizza, and pork dishes.

Aloha!

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Paul and I just got back from our trip to Hawaii. Over the next several days I will be posting about our travels. I’m glad we were able to go. It was looking iffy about whether or not we would be able to go. Arabella was in crisis mode right before we left experiencing mania and psychosis. I felt like it would totally crush my spirit not being able to go. But I also felt guilty about leaving her. Some time there is not such a thing as good timing.

Paul and I worked hard to make the trip possible. We set up a meeting with a social worker who is working on getting Arabella a case manager. We had Alex and Lexi set up to watch over Arabella and our pets with Angel and Dan being the backup for them. Then we also had our best friends being backup for our adult children.

We were gone over Easter which was a different experience altogether. I felt a little bad for leaving over the holiday because I didn’t want Alex and Lexi to have nowhere to go. Arabella was spending the holiday weekend with my mom. Thankfully Angel’s in-laws invited Alex and Lexi over for dinner and even got them little baskets of candy. It warmed my heart to see them having a nice time without me.

I was worried about how things would go at home. But like most of my fears, the bad things I worried about didn’t end up happening. And the things that actually did happen were not expected. Such is life.

We ended up having a snowstorm at home while we were gone and the power was out for over a day. The power came back on in the wee hours of the morning right before we got home. Thankfully the refrigerator was pretty empty so we didn’t lose a lot of food. There are still some people without power from the storm. The yard is full of sticks and small branches from the strong winds which is really making the dogs happy.

Overall, though, everything went as good as it could. The medication is finally working and Arabella is no longer psychotic. She is doing so much better which is a great relief for us. We are slowly digging out of the pile of laundry, emails, and cleaning. The house is still standing.

We had a wonderful getaway.

Green light, red light 7

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It has been a whole month now since the mania and delusions started. Arabella is gradually getting better, but these kinds of medications take time to kick in fully.

The endless pacing back and forth has gotten slower but she can’t sit down. When she talks her voice isn’t as loud as if she is yelling. She no longer talks non-stop but she is still constantly interrupting conversations. Having a conversation in the room she is in is next to impossible. If we go in a different room, she might knock on the door.

She has become like that of a young girl, around 6 or 7. She has given up smoking. I’m not sure if it is because she now thinks she is too young or even if it will stick after all this is over. If it ever ends.

The voices in her head are quieting. I didn’t know she heard voices. She told us she thought everyone heard voices. Sometimes the voices told her to do awful things like cut or kill herself. Sometimes the voices she hears are like my voice. It can almost make sense to me why she thought I was tormenting her.

It’s exhausting. At times the suffering and grief is unbearable. Sometimes I think this is going to kill me. Sometimes I don’t even care if it does.

I am envious of people who in times like these can lean on their faith to bring them peace, comfort, and hope. As a seeker, I never can seem to find what I’m chasing after.

Why has this been what is chosen for me, my daughter, my family.

Green light, red light 6

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Several times during her hospital stay, Arabella put in requests to come back home. On day 10, we picked her up and brought her back home. She was doing better, a lot better than when we took her in. But she was still manic and delusional. Maybe our expectations were too high. Or maybe we picked her up too early.

She didn’t sleep the first night we brought her home. The hospital changed all her medications. Then when she got home, she took her old nightly medications. It was a jumbled up mess so we decided to call her psychiatrist’s office in the morning to figure it all out. The process of figuring everything out took the whole day. By that afternoon, things got progressively worse. Arabella was very manic and kept interrupting us every few minutes to tell us a bunch of nonsense. By late afternoon, Arabella told us she took a couple of gummies and smoked weed. She was stoned out of her mind, and totally freaking out.

My mom stopped by for a random visit right around that time. She wanted to go for a walk, but I was in the middle of a million things. It’s nearly impossible to get all the things done I wanted to get done when I’m constantly interrupted and in crisis mode. That is when we received a call back from the doctor’s office. Paul and I took the call in Paul’s office on speaker phone while both my mom and Arabella came in and talked to us while we were having a serious discussion with the nurse. We were beyond annoyed, frustrated, and stressed.

The nurse said the doctor wanted to discontinue some of the new meds from the hospital while adding back some of the old meds and discontinuing some others. They were going to call the prescriptions into the pharmacy and would be available two hours before the pharmacy closed. She was going to need to start the new medications that evening. I was going to need to figure it all out before she went to bed. I took a bag full of her medications on hand and went through everything while waiting for the pharmacy.

I needed to go through the meds, fold laundry, and make supper before picking up the meds. My mom tried calling several times while I was getting everything together to make supper. I figured she wanted to talk about Arabella since she left while we were on the phone with the doctor’s office. I ignored her call because I was in a real hurry and didn’t want to take the time to explain everything yet again.

Then Paul came into the room while talking on the phone. He asked whoever it was if they were going to be arrested. I knew he wasn’t talking to Arabella since she was in her room. It was my mom. He said that while she was on the way home she hit a guy on a motorcycle with her car. He said that I needed to go pick her up from the scene of the accident. He said my mom was okay. The guy on the motorcycle was alive but injured.

While in a crisis, we got hit with yet another crisis. I abandoned supper to get ready to pick up my mom. Paul said he would pick up the medication before the pharmacy closed. He wanted me to do it originally because it was my strong suit. On the way out the door, I called my best friend Cindy on the phone. She lived a couple blocks from the accident. She told me I should come over to her house and she would drive me because I was way too shook up myself.

Cindy and I picked up my mom from the place where they towed her car and the motorcycle. Good thing Paul picked up the medication because the pharmacy closed before I got home. The pharmacy screwed up the medication. But at least they gave her a prescription for something she was no longer using. The hospital also gave her an injectable medicine the day she left and I got a prescription bottle with a vial of the injection in it.

While all of that was happening, I received a call from Alex’s friend. It was his 21st birthday that evening and they wanted me to come out celebrating with them. It was a sweet gesture that my kid’s friends also think of me as their friend as well. Paul was just meeting with this young man and helping him set goals to get his GED which he just finished. I will always think of my kid’s friends as children even when they are in their 20’s and able to go out to the bars. If anything, I was worried that they would all make it home safely. Especially after the kind of day I was having.

They weren’t the only ones on the road. Dan and Angel were just getting home from a vacation in Japan. The flight back home was a rough one, then they had to drive another 4 hours to get back home. I was anxious all around. My nerves were shot and I didn’t know how much longer I could handle the stress. Bad news doesn’t seem to shock me anymore.

Now I find it shocking when good things happen.

Green light, red light 5

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Another crisis was averted when Arabella rescinded the release order she signed the day after her voluntary commitment. Paul and I decided it was time for us to visit Arabella.

We arrived during adult visiting hours in the evening. Once again we had to lock up all of our belongings including our cell phones and sat in the waiting room with a sad lot of people. Like in an elevator, no one looked long at each other. We all got swept by the metal detector screening us for weapons. Then with a buzz the outside door unlocked and we silently walked down the long hallway into the cafeteria where we waited for our loved ones to arrive.

It seemed like we waited a long time for Arabella to arrive. Everyone else arrived before her. We watched while the others embraced with a smile and sat down as if in a regular restaurant to have normal conversations. Arabella arrived in disarray clutching a notebook with the word password written on it. She said password was the password and if we could read it, we could look inside. She cautioned us that the hospital was bugged. First we had to bug the system to debug the system. It was strange because they were having issues with their phone system which Arabella slid comfortably into a delusion that everything was bugged so we had to go to a different algorithm.

Arabella said she was a genetic freak. She was born of one woman and two men. She had an extra chromosome. She said she was colorblind, men can only see primary colors and women can only see secondary colors. She said she liked apple juice because she ate from the tree of knowledge of good and evil. When she ate she knew all the answers to all the problems of the world.

She said she needed Bryan to come to the hospital because he was her soulmate, her other half. Her bloodwork wouldn’t be complete without him coming in the have his blood drawn. They were storm chasers and she could leave now because it wasn’t storming. She spoke of science, DNA, physics, time travel, and biology. The things she was saying had an iota of truth but was jumbled and didn’t make a lot of sense. She was unable to hold a conversation with us.

But the most troubling thing was that she was slurring her words off and on. We noticed that when we were talking on the phone several times but thought maybe it was from being sedated. She held her mouth funny at random times and words almost seemed to whistle through her teeth. She said she couldn’t talk because no one ever showed her how to talk right. She also said no one ever showed her how to brush her teeth and she had gingivitis.

We were very concerned about her new symptoms. Then she started singing. They said sometimes she would sing loudly in her room. When visiting time was over, the patients had to line up on one side and the visitors on the other. Arabella went her own way and started to take one of the signs off the wall. We told her she couldn’t take the signs off the wall.

We left in shock. Our daughter was still gone. Would she ever be the same again?

Green light, red light 4

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The aftermath after our daughter was committed was like that of a bomb going off. We were left with shattered lives and broken pieces of rubble. Shards impossible to put back together even as it was a few weeks before everything crumbled.

I can’t find the way back.

We both walked around like zombies afterwards. It’s even hard to focus enough to tell this story adequately. But that’s all a part of being in crisis mode. In utter despair our tears fell to the ground. Arabella was doing so well for the first six months after jail living at home. She found a job. We gave her a stable environment and that gave us a false sense of hope and control. The stress of her tonsillectomy was enough to send her into a relapse worse than we ever saw her in before. She was seeing things and talking to people who weren’t there.

I can’t find the road she is on.

The prognosis bleak, the illness severe. But it’s not the kind of illness where anyone brought her flowers and sent her cards to get well soon. There will be no speedy recovery. Schizophrenia, people shudder in fear and stay away as if it’s contagious. It’s not the mental illness offering up cutesy meme’s of awareness and support. It’s scary and shameful without go fund me and caring bridge pages.

I can’t find anyone who really cares.

I don’t want to talk about it over and over again to people who don’t understand. It’s exhausting in every possible way. I feel tired when I wake up. Bipolar mania, she needs support day and night. She needs support when I need to sleep. No, you can’t buy a snake. You talk too long and too loud. I need a break just to get the things done I need to get done.

I don’t have the strength to do this anymore.

Borderline personality disorder, sometimes you love me and other times you hate me. Which will it be today? It’s too much trapped inside of one body. Finally the doctors were seeing in the hospital what we were seeing at home. Right away, she signed an AMA (against medical advice) to come back home. They had 24 hours to evaluate her before she was going to come back home. Could we even take her back home? She had nowhere else to go.

I don’t know how to help her.

Sunday morning I tried to hide my swollen eyes as I went to church. I felt bitterness enter my heart. I didn’t want to see the happy healthy families. I don’t want to hear about kids going into the ministry. My daughter thinks she is God, does that count? It’s painful to see the normalcy all around me, like being impoverished while everyone is feasting on their riches. I don’t feel the joy or God’s blessings. I think I’ve been cursed since the day I was born. I don’t want to see suffering anymore. Sometimes I even get bored with my feelings of anger towards a God who is supposed to be loving.

Yet I can’t find the way.

What were we going to do? Where are the answers? What if she comes home too early in an agitated psychotic state? Do I call the police? Do I send her back to jail? Do I have her face her felonies or go to prison for an illness she didn’t choose and doesn’t have control over? How was I going to make hard decisions when I couldn’t even think? Decisions that could affect the rest of her life.

Yet I can’t find the way.

We had to find a way to get her to stay as if our very lives depended on it.

Where is the way?