Just Another Damn Thing to be Strong About

Category: Uncategorized

  • Joan Jett and the Class of ’19

    40502028_10212675555588552_2524792199921532928_nI remember buying my first Joan Jett cassette tape.  I was about thirteen and I had money from my paper route, so I rode my brother’s BMX to Alco and forked over a ten dollar bill. I popped the cassette in my Walkman, and then in my car stereo when I started driving, then in my house stereo when I got my first apartment. Stevie Nicks, Janice Joplin, Melissa Etheridge, Lita Ford, Joan Jett and Ann and Nancy Wilson. They were my girls. I loved the guitars, and sultry vocals.  They kept me company on long drives, all night marathon study sessions, writing my grad school thesis, and grieving bad break ups. Except for Janice, I have seen them all on stage. That was back in the day, when people stood in line for concert tickets. And I did my time, sitting all night in front of the record store in all kinds of weather to get close to the stage. Sometimes I used my grocery money to get the t-shirt at the show. I could survive on ramen and hand-outs from my cousin’s kitchen.

    Even though, I never stopped loving music, when I had kids, concerts stopped being a thing for me. First off, for years, concert tickets were a luxury I couldn’t afford. But more importantly, I never thought rock concerts were appropriate for kids–drunk, high people acting crazy.  One time when I was at Red Rocks seeing Stevie Nicks, and the couple right next to me started having sex. RIGHT NEXT TO ME.  It was traumatizing. So I never have taken my kids to a live rock show, but they had lots of other exposure to music. My son can play cello, guitar, and rock the house on the drums. My daughter plays the ukulele and guitar. Both have eclectic taste, and know the words to hundreds of songs. The radio gets way more play than our television and in the car we turn up the volume and sing along. I didn’t realize how much I missed live music though. When I was in Chicago in June, I went with my girlfriends to the Blues Festival.  We saw Mavis Staples take the stage.  She spoke about marching with King and moved the audience to tears with her rendition of “I’ll take you there.” It brought me back to the days when I loved sitting close to the stage and watching the musicians do their thing.  So when I got the chance last weekend to see Joan Jett, I broke my rules and asked Darian to go with me.  After all, she’s going to college next year and after what the girl has been through, I figured she was mature enough for a rock concert.

    It turned out to be one of the best nights of my life.  First off, we got to go to the State Fair, which I secretly love.  I went every year with my parents.  We’d eat complete junk and wander through the livestock tents and catch the rodeo.  Dad and I would look at all the horses and usually someone would let me take a short ride around the corrals.  My brother and I would play games on the midway and ride the rides and we almost always ran into some of our relatives.  D and I walked through the creative arts tent and checked out the quilt show and she walked with me through the corrals as I talked to every horse that was peering over a stall.  She didn’t want to look at the livestock, but she did agree to do the dairy exhibition and gave milking the fake cow a try.  We got to our seats early and Darian was so excited–we were in the fourth row, center stage.  Once the music started, Darian shot out of her seat to dance.  She knew all the words to almost all of the songs. The ladies in front of us kept turning around to compliment D, impressed that she was so young and rocking out with them.  After the show, we rode back home, talking about how great the music was.  Darian knew without being told that Joan Jett is an icon. She is one of the first women to start a rock band.  She is one of the first women to play lead electric guitar. She took criticism from Rolling Stone and all the boy critics who didn’t think she could make it.  She has had bottles thrown at her on stage.   But she never gave up and helped pave the way for generations of women musicians.   Joan Jett is resilient and brave, which is how I often think of my daughter.

    In August, Darian and I went on a whirlwind tour of colleges on the East Coast, with Shayne tagging along still dealing with the tail end of his psychosis.  I had this moment at Penn Station when I was trying to figure out what train to take to get to the Bronx to see Sarah Lawerence.  I looked over to check on the kids. Both looked so city; Shayne, gutter puppy city–he had on clothes that didn’t fit him because he’s so skinny and was looking down at the ground–moving quickly to pick up a rolling quarter.  And even through the crowd, I could see him talking to himself, in the way that he does since the voices came to call.  In a place like Penn Station, no one even noticed him.  Darian was leaning up against the marble wall, her bleached white hair curling around her face, tapping her Doc Marten to the beat of whatever she was listening to on her headphones.  I realized right then, that she already looks like she belongs.  I know in her mind she has already moved to the city.  It doesn’t matter how far away it is from what she knows, or how expensive, or what I say, she has already made up her mind that New York is where she is destined to be.   And I better catch up, or she will be gone before I realize it.

    I used to think my dad was the bravest person I knew.  He left his small town to join the Army when he didn’t even speak English. He learned to jump out of helicopters in the midst of gunfire to save downed comrades.  He survived a prisoner of war camp.  He never ever once asked for anything, but got respect anyway because of his quiet, generous nature.  I know he left his strength for me, but I think he left his courage for Darian.  She might be little, but she is tough.  So many times in the last years, I’ve seen her gather herself together and move forward.  There has been a lot of tears and pain, so to watch her dance and laugh with a musician we both love was pure joy.  It’s impossible to know what the future holds, but I’m going to treasure every moment that I have left with my brave, wild child. She wants to change the world and even though I don’t know what form that will take, I bet she will succeed.  She’s already changed my world and I am grateful for her every day.

     

  • Bike wreck

    18446646_10209329106689421_4810792243239010575_nFor quite some time, I was an avid bike rider.  I have both a mountain bike and a road bike and I’ve done some serious miles.  I’ve ridden to Rockvale, Pueblo, Cripple Creek, Florence, and Penrose many, many times.  Once, I even rode to Alamosa.  About ten years ago, I was in a pretty serious accident.  I was riding down Main Street and I jumped up on the sidewalk to avoid some construction, and my bike tire got caught between the grass and the sidewalk.  I flipped over and hit the low stone wall surrounding the canine unit on Second and Main.  The wall went through my chin and fractured my cheekbone and I damaged my kneecap, plus a million other scrapes and bruises.  I was riding before my stitches were out, but maybe not with the same fervor.  A year or so after that, I was attacked on the riverwalk while riding.  A man jumped in front of me and grabbed my handlebars.  He didn’t physically touch me, but he spit in my face.  I screamed and people on the riverwalk came running into view to help me and the creepy man ran into the woods.  Even though I was safe, riding my bike was never really quite the same for me.  I became a little skittish about riding alone.  Then the afternoon of my parents’ car accident, I didn’t answer the first phone call, because I wanted to go for a bike ride.  A million times I’ve thought–“What if I answered that call.  Maybe my dad would still be alive.  At least I might have been able to say good-bye.”  Every time I looked at my bike, I thought of my phone ringing, and I just quit putting on the miles.   One of the promises I made to myself after recovering from cancer was to take up bike riding again.

    Here’s the thing, recovering my stamina hasn’t been as easy I thought it would be.  I still get fatigued pretty easily.  And if I get overtired, I almost feel sick.  So I have been riding, but I’m definitely not as fast or strong as once was.  Yesterday, I was so hot when I came home from work, that I thought a nice ride with the breeze blowing against my skin would be just the ticket.  However, I always feel like I should spend some time with my son when I get home and then my daughter came home from school in tears because she hates school so much.  So I got kind of a late start when I started out on my evening ride.  In hindsight, I should have settled for a quick ride around the neighborhood, but instead set off on a twenty-five mile journey that was one of my old routes when I was riding consistently.  Part of the journey involves the riverwalk from Centennial Park to Mackenzie Blvd.  I realized the sun was setting when I was at the highest point of the trail, and I might have turned around, but I ran into a friend that I hadn’t seen in awhile. So I stopped to catch up because that is what you do in a small town.  And I was rested enough after our ten or fifteen minute chat, that I felt like I could handle the rest of the route, so I kept on going.

    I didn’t really notice the darkness until I reached the outskirts of town where Mackenzie meets the highway.  I paused for a moment and took a drink and unzipped my bike bag to get my cell phone and let the kids know I was okay.  That’s when I realized that I didn’t have my phone.  I knew they would be worried because I had been gone quite awhile.  So I tried to increase my speed and I decided to cut out part of journey to make the trip a little shorter, but I still had about five miles to go.  Maybe everything would have been fine, but a bug flew into my eye.  I tried to get it out with my hand, and I didn’t notice that I had steered into the soft dirt on the side of the road until my wheel skidded and I overcorrected with one hand and fell off, hitting my elbow on the asphalt of the road, hard.  My pedal knocked into my leg.  I lay for a minute on the side of the road, in the dark, with my bike on top of me.  I kind of either wanted to die or be transported into a nice bubble bath.  If I’d had my phone, I probably would have surrendered and had one of the kids come and get me.  I thought for a minute about who lived nearby and wondered if I should probably get some help, but instead I got up and took stock.  I had a tiny scrape on my elbow and my leg felt bruised, but basically I was fine, so I got back on my bike and did the long, painful last five or so miles, uphill in the dark.

    When I finally got home, the porch light was one.  Darian greeted me first with, “DUDE, where have you been?  Are you okay?  Shayne is freaking out.”  Shayne came rushing in to the living room.  His eyes were big and bright.  I was scared for a minute that psychosis had taken over again, but he was coherent when he said, “You were gone for so long.  I tried to call you, but you left your phone here.  Are you okay?”  I reassured them both that I was fine.  Shayne went outside to put my bike away and Darian continued scolding me.  “You can’t do that.  He can’t handle it.  He was so freaked out and worried.  Remember he’s fragile, like a puppy.  And I thought you were dead.  I was making plans.  James would have to do the funeral, because I couldn’t handle that.  And I’d have to go to Chicago and enroll in school. I would do that over the Labor Day Weekend. And…”

    I stopped her by saying, “Darian.  I’m not dead.”  Shayne came into the house then, walked over, and hugged me, then went to bed.  Darian waited till she heard his door shut and said, “Don’t forget–like a puppy.”

    Well, that made a lot of sense, Darian would be tough and pull out her survival skills in a crises and Shayne would break down and fall into his voices.  I woke up with a bruised elbow and leg, but surprisingly little road rash.  I felt stronger, like I had broken through some kind of barrier.  Next spring, I turn fifty and I’ve always wanted to ride somewhere epic to celebrate–like to the Oregon coast, or along the Appalachian trail.   So I’m going to keep riding and building my strength.   I’ll just remember to bring my cell phone next time.  Maybe Shayne will ride with me.  We can take care of each other, so Darian won’t have to pick up the pieces.

     

  • Back to School

    IMG_1518School started this week.  For the past three years, I’ve missed the first day of school, so in a way I was excited this year that my life has settled down enough that I could do something normal, like go to work without being paralyzed with grief, or wondering if my son was dead, or rushing off to a radiation appointment.  I was ready, right?  Positive.  Cheerful.  Thinking about new projects. Ready to see my pals.   But when I got into the auditorium on the first teacher day, all my excitement drained away.

    First off, when  I looked around and it was like a flashback from twenty-three years ago when I first entered the same auditorium as a student teacher.  I remembered looking at women pushing fifty sporting new dye jobs and geometric patterned skirts and thinking, “Lord, don’t let that happen to me.”  And while I don’t dye my hair, or wear primary colors or chiffon, I realized I have become one of those women teachers who are making fans out of handouts and rolling my eyes at the new teachers rolling out their Pinterest bulletin boards.  I sat and listened to two days of educational presentations and realized new ideas are just old ones dressed up in new clothes.  I went into my classroom and colleagues came to me whining and complaining about a schedule that didn’t meet their needs.  I acquiesced to their wishes.  Even if it puts thirty rowdy nine year olds in my room at one time, it’s way easier to agree, than to argue about what’s best for kids.   I came home in tears, feeling drained and trapped.

    Hours later I was still crying.  And I wondered if maybe I was going through a mid-life crises.  Do women have those?  I mean I don’t want a convertible or a trophy wife, but I also don’t know if I can handle all the stupid shit.  All the discussions of hallway rules, and auditorium rules and bathroom rules and math scores and reading programs.  I’m so tired of acting like these things are important.  Where else in the entire world do people line up in single file to get to a destination, except for elementary school?  And dealing with the emotions of a building were half the women are having babies and the other half, hot flashes is intense.  I know I’ve been through a lot in my life, but I wondered if this might be the breaking point.  Kids hadn’t even stepped in the building and I was already dreading the year.  To cheer myself up, I went into my backyard and sat on my swing and watched the hummingbirds in the rose garden.

    Last week, the kids and I went on whirlwind tour of college campuses on the East Coast.  One day we went to the beach and took a ride on the Wonder Wheel.  The Wonder Wheel is a eccentric Ferris wheel, which means that some of the cars are built on tracks that swing up and down as the wheel rotates.  Imagine that, swinging 150 feet in the air with the skyline of Manhattan on one side, the Jersey shoreline on the other.  I told the kids that when I retire I am moving to the beach.  Darian thought that was a good idea.  Shayne didn’t respond; he was still not completely responding to his meds and spent most of the trip, lost in his own head.

    So I was sitting on my swing, thinking about all this and knowing retirement is not an option, when Shayne came out and joined me.  We just found out that his kidneys are being damaged from the antipsychotic drugs.  The drugs are fighting one war and staging another.  No wonder, little petty things about school are under my skin, I am watching my kid die a little every day.  Shayne turned to me and said, “Thanks, mom.” I said, “For what, bud?”  And he waved his arm around, indicating the yard, “For all this, thanks.”  I smiled and put my hand on top of his.  So I guess I’m not really having a mid-life crises.   I just forgot that this journey is about breathing and enjoying every moment. No matter where I am.

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

     

  • Blue

    IMG_1515As a child, I can never remember a time in my life when we didn’t have a dog or two.  But I grew up thinking dogs needed a place to run and play, so in my years of apartment dwelling, dogs were off the table.  But when I moved back to Canon and got my first house and had a boy and a baby, I thought a dog was in order.  We went to the shelter and looked at the puppies.  There were only five or six puppies on the day we went and they were all smallish breeds, except one–a blue heeler/lab mix little boy dog.  He had giant paws and in my mind, dogs should be big.  So we took him to the viewing room and he hid under the bench, trembling, until Shayne coaxed him out.  He was the puppy for me–shy and reserved.  We named him Blue–partly because he was a blue heeler, partly because I think animals should be named after colors (we had a gray cat named, Ash, at the time) and there was a dog named Blue in my favorite book–Where the Red Fern Grows. Plus Darian was too young to have an opinion, or the name debate would have gone on for two weeks. When my mom saw him, she rolled her eyes and said, “That’s all you need, another baby.  And look at his paws.  He is going to be huge.”  But my dad said, “Ven aca Blue-boy.” and rubbed the puppy’s ears thoroughly.

    The first morning after we got him, I went out into the living room to find several piles of poop strategically placed all over the living room.  Tears came to my eyes, and I realized that the whole puppy thing was maybe a bad idea.  Shayne came out of his room, took a look at the scene and said, “I got this,” and he started the process of cleaning it up.  After that, Blue was pretty much Shayne’s dog.  He took him for a short walk before school everyday, and then a long walk after school.  He made sure his water bowl was full, and fed him and took him to obedience school.  Our shy little puppy transformed into a rowdy trouble maker.  He chewed big holes in the carpet.  He ate choice pieces out of the laundry basket, mostly my underwear, which could be a whole separate blog on its own, and he loved shoes.  He LOVED them so much that he’d chew them into pieces.  One morning he gathered up all the shoes from the neighbor’s front door and brought them to our door.  He could open the gate, the back door, and the bedroom windows.  We had to bungee everything closed.  Every time I got frustrated with Blue’s behavior, Shayne would hug the dog tight and say he would keep working with him.

    Shayne started running seriously when he was twelve years old.  He started out training for middle school cross country and at first ran three to five miles a day.  He would take Blue with him.  The runs were great for Blue; he started getting a lot more exercise and settled down some.  As Shayne increased his miles, Blue was his constant companion.  They’d leave at four am and run for miles.  That lasted for years.  The year Shayne went away to college was hard on Blue.  He would lay around looking listless and forlorn.  His boy was gone and he didn’t really know what to do with himself.  I walked him everyday, and was surprised at well-behaved he had grown to be.  And he didn’t seem to age.

    When Shayne came back from California, he was showing symptoms of schizophrenia.  At the time, we didn’t know what was wrong with him, but Blue knew there was something wrong with Shayne.  It wasn’t his boy anymore.  And in the last three years Blue has turned his loyalty to me.  He became my dog.  He followed me, slept in my room, and greeted me with tail wags.  Yet, when Blue had a stroke last spring and his leg stopped working and he seemed to be suffering from dementia, Shayne was the one that refused to let me consider putting him down.  He said, that he would still care for Blue and we couldn’t kill him just because he was old.  He said he would help him get outside and clean up if he had an accident.  Shayne has been through so much, and Blue was still eating and able to move around on his own, so even though, Blue needed assistance getting up and down the steps and couldn’t really walk far distances, and sometimes fell, we kept caring for him.

    Last week we went on a short trip to the East coast to see a friend, get a taste of the ocean and visit college campuses.  I wasn’t sure about leaving Blue or Shayne.  Shayne is still not quite stable.  Traveling with him is worrisome, because I would hate for him to run away far from home, but leaving him alone is just as worrisome.  So I elected to take Shayne and I got care for Blue.  But it was too much for Blue.  He fell when he was outside and didn’t bounce back.  When we got home, he couldn’t get up at all and was lying in his pee.  Shayne picked him up in his arms and carried him outside and set him down on the grass.  The dog took two or three stumbling steps and fell onto his side and started crying.  Shayne swiped at his tears and told me that it was time.  He didn’t want to watch Blue suffer anymore.

    We made an appointment to put him down.  When we got home, Shayne went to his room.  I didn’t know how he was going to handle losing Blue.  Stress can and has lead Shayne into psychotic breaks.     But when I checked on him, he was asleep and Charlie was curled next to his side.  It made me feel better and at peace.  I think all of us will miss that crazy, old dog, but he had a good life with lots of runs, plenty of stolen pizza off the table, and a boy who loved him beyond measure.

  • August 2–Oncology Report

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    On August 2, my radiation oncologist said that if I promised to go to my yearly mammograms and kept following up with my medical oncologist, he would fade into the shadows unless I needed him.  It made me think of Batman, but I didn’t tell him that, instead I promised I would keep up with my care.  Believe it or not, I have learned a few things on this journey.

    1.  First off, some doctors actually DO know what they are doing and can be trusted.
    2. Cancer is not created equal.  Some kinds are worse than others.  I was fortunate enough to get the kind with a high cure rate.
    3. Despite my fortune, cancer still has jacked with me.  Any little thing can cause paralyzing fear–a headache, a cough, an upset stomach.  It is back?  How do I know? How can I be sure I am okay?
    4. Cancer has brought me in touch with a certain amount of rage that I didn’t know I was capable of.  Everyone knows the words to respond to a cancer warrior.  There are catchy slogans and T-shirts and greeting cards.  Friends and family bring dinners, and give gifts, send cards and ask about my health.  But I promise this is nothing like what schizophrenia has brought to my life.  Cancer is nothing compared to that.  Nothing.  Don’t tell me you don’t know what to say or what to do for me.  You did when I had cancer.
    5. I care about my breasts more than I knew.  It was hard for me to imagine them cut.  And the glimpse of the bruising and scars was one of the hardest moments I’ve ever faced.  I wondered if I’d ever be able to take my shirt off again.
    6. That being said, plastic surgery has gone way up on my list of appreciative items in life.  And I totally understand dropping a few G’s at Victoria’s Secret now.
    7. Radiation is deceptive.  First off, you take off your shirt, lie on a flat surface with your arms over your head.  My feet got tied up and I was instructed to lie perfectly still.  Usually I closed my eyes while the machine passed over me.  It’s painless and over in about a minute.  I’ve heard that sex is like that for some women;). But the thing about radiation, is that it’s cumulative.  It builds up in your body and causes burns and bone crushing fatigue. In my case, it has damaged some of my muscles forever.  But that’s a small price to pay for my life.
    8. My dad was strong.  He was in two wars and never, ever complained about pain.  I feel him inside me every day, telling me, “Come on, chica.  Get up.  You face the day.  It’s a good morning.  Don’t miss it. Bueno.”  I am glad he wasn’t hear to see my pain.  I am glad he left me his strength.
    9. My friends call me Wonder Woman.  They gave me tons of Wonder Woman Swag–cups, shirts, socks, belts, wallets, pens.  I love it all, because she is a bad ass.  But I don’t think of myself like that at all.  She’s trying to save the world.  I’m just trying to find a little peace.
    10. There was a never really a lot of doubt that I wouldn’t be okay.  I have the best friends.  The best family.  The best man.  And a pretty great cat.  They saw me through.  Every step of the way.

    So, yeah, I’ll go to my appointments and do the damn mammograms, if that’s what I have to do.  Life is short and I want to live and love every minute.

  • Driving

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    My daughter got her driver’s license last week.  Even though I will acknowledge that the village has helped raise Darian, I taught her how to drive all by myself.  I cannot stand waiting for her in the morning.  I like to get to work at 6:30 when the building is dark and quiet and get my first classes ready to roll and sip my tea and check my email.  Darian HATES mornings and most days manages to get into the school building just as the bell rings.  I feel like I’m always driving her to her social events, lessons, appointments and there is nothing worse than sitting in a cold car late at night waiting for her musical theater director to finish notes.  So I guess there was a lot of motivation for me to help Darian get her license.  She was sure she wasn’t going to pass the driving test, and was a wreck.  I told her that she was going to pass because she was better than me and I passed the first time.  She said something like, “Of course you passed.  You got your license in the eighties.  No one cared about living in the eighties.  You all smoked cigarettes, had unprotected sex, and drank wine coolers like monsters.”  Ah there it is–savage sixteen.

    But she did pass, on her first time.  And when we drove home, I made a comment on her speed or something and she said, “You can’t tell me what do anymore, I have my license now.”  I laughed, but I didn’t realize until the next day when she got in the car, waved to me and drove away without even telling me where she was going, that I hadn’t thought through the “after the license” part very well.  After lying awake one night, imagining  curvy mountain roads, deer and Darian lying in a ditch, I wondered why I was in such a hurry for the whole license thing.  I just wanted her home safe. It made me remember the night I got the call that my parents had been in the accident.  I just couldn’t handle that scenario again.

    When Darian did come home safe, we talked about rules and boundaries for the car. I told her how scary it was for me to not know exactly where she was and to think of her on dark, curvy roads.  She asked if I felt that way about Shayne.  Fair question.  I guess not.  First off, when Shayne started driving, I had never experienced the trauma of losing people I love in a car accident.  And Shayne mostly just drove to school and work, the car was never a great escape for him.  Plus Shayne has brushed death so many times since his diagnosis with schizophrenia, that I’ve accepted that he could die violently.  In some ways, I even expect it.

    Darian is a different person.  It won’t hurt her to have boundaries and rules around the car and recognize the responsibility that comes with a license.  But for her sake, I’ll try to keep my PTSD over my parents trauma under control.  I remember when I got my license.  I had a little red Mustang and I drove around with the windows down listening to the radio a little too loud.  I remember the air in my hair, and feeling like I could drive anywhere I wanted.  It was freedom and magic and my first taste of being an adult.  I want Darian to have that joy, even if I know it leads her away from me.

  • Broken System?

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    My son is still psychotic.  He locked himself in the bathroom yesterday, so that he would feel safe.  He ranted on about not really being schizophrenic. The drugs were poisoning him.  EVERYBODY from his ninth grade math teacher to Donald Trump was trying to frame him for murder, even our dog.  Somewhere in all his garble he decided that if he worked for DEA, all the problems of the world would be resolved.  I know better than to engage in his ramblings, but sometimes I can’t help myself.  So when he said the thing about the DEA, I said something like, “Shayne, you can’t work for the DEA, you can’t even put on pants.”  He unlocked the bathroom door and went to his room and put on a pair of sweat pants.  The pants belonged to my father.  My mom bought them in the 70’s when velour was a thing and my dad weighed like 200 lbs.  When Shayne wears them he looks like he is playing dress up.  So he stood in my doorway, in the ridiculous pants, his eyes wild and glitttery to prove he could put on pants.  Then he decided I was going to kill him, so he left.  That’s when I called the doctor at Denver Medical.  I told her he wasn’t ready to be released and she should have listened to me and it was on her if something bad happened to him or someone else.

    I realize that makes me about as irrational as Shayne.  But I am so TIRED of being told the system is broken.  I know it’s broken.  I have dealt with every broken part of it in the past five years.  I know emergency rooms are holding tanks when there are no beds.  Patients can be held in stripped down rooms with security gurads watching, with no treatment for days.  We’ve done that.  I know community mental health centers have high turn over and are staffed with young people who have limited experience and usually have no idea how to handle someone as critical as Shayne.  Doctors in those centers are overworked, and underpaid, and leave often.  We’ve done all that too.  Doctors in private practice are hard to get in to and then are med pushers.  Shayne was on four different drugs at one time.  Even if I am not a doctor, I know that drugs interact with each other, and if something isn’t working, adding another drug to the mix isn’t going to fix the problem.  You can’t just fire a doctor and go to another, because you can’t run the risk of running out of drugs, because even if the drugs aren’t working right, having no drugs is very, very bad.  I have been told to call the police.  The police know Shayne.  They’ve brought him home in the middle of the night.  They’ve returned his stuff when he has abandoned it on the side of the road.    They’ve bought him sandwiches out of their own pockets.   But unless a patient is suicidal or homicidal, or doing something illegal, the police won’t intervene.  It is not illegal to be psychotic.  And sometimes being psychotic isn’t even enough for hospital staff.  Shayne’s been turned away from clinics time after time because he isn’t a danger to himself or others.  I have been in every scenario possible and know how its going to go down every time.  I know if I want Shayne to get the help he needs, I have to demand it.  And this time, I’m not letting the doctor off the hook for releasing him when he wasn’t ready.  How many school shootings and homicides and suicides have to happen before the system changes?  That’s not happening to my son, if I have anything to say about it.

    The doctor was a big girl.  First of all, she talked to me herself.  She didn’t communicate through the layers of medical assistants and nurses and office staff.  I’ve come to hate the layers of medical communication.  She didn’t tell me anything, I didn’t already know, but  she said I could call her to let her know what was going on and she would keep my number and call me herself.  Maybe if Shayne ends up back there, she will work harder to do what needs to be done.   In the meantime, I’ve taken over being in charge of Shayne again.  He threw his meds away on trash day, but I have an extra bottle from the doctor that prescribed drug after drug after drug.  I have them locked up and I’m treating my twenty-four year old like a toddler again.  I have learned enough about how the drugs work to know what I’m doing.  I think I can get him back on track myself.

    My big question is this–Is this always going to be my life?  I don’t know if I can sustain this level of care by myself for thirty or forty more years.   The last five have taken its toil.  I can’t ensure that my other child is safe.  And she wants to get as far away from her brother as possible.  Sometimes I wonder if fighting for him is the right thing.  I just don’t know how to stop.  He is my son.  My responsibility.  I can’t just turn that off.  I can’t fix the broken system by myself, but I am done accepting “the system is broken” as an answer for inadequate care.

  • On the Street

    1233148_10200461525805441_1757740866_oI told the doctor in Denver that Shayne wasn’t ready to be released, but he was sent home anyway.  On Friday, Shayne walked out of the house wearing a baseball shirt inside out, shorts, and a red terry cloth bathrobe.  Darian and I told him not to go, but he said he couldn’t stay.

    He has disappeared before.  Once he jumped out of the car at a stoplight because he thought I was kidnapping him.  Another time he ran away from me in Pueblo because he didn’t want to go to the hospital.  A lot of time he leaves because he doesn’t want to do something I want him to do–like he doesn’t want to see a counselor, or take his medicine, or else I catch him smoking pot.  Pot might be legal, but it reacts badly with his medicine and makes his symptoms worse.  Usually when he leaves, there is a period when I am happy to see him go.  His behavior can be exhausting and frustrating.  My anger doesn’t last long.  And I start to wonder where he is and if he is okay.  A week of that and I might as well be crazy too.

    In the beginning days of this illness, I would look for him.  I would put up flyers.  I’d post it on Facebook.  I’d spend all day combing places he might be.  I wouldn’t sleep.  After a year of several disappearances, I decided that when Shayne left, I wasn’t going to look for him. He can survive on the streets, but he doesn’t do it well.  Usually, he is in some phase of psychosis that makes him suspicious of others.  He won’t seek out help, instead he will hide out alone.  He might decide to walk to another city because he’s meeting someone there, like Steven King maybe.  He eats by walking into lobbies of motels and eating the fruit and cookies put out for guests, or the free continental breakfasts.  Sometimes he steals a sandwich from Walmart.  To date, he always comes home, eventually.  When he does turn up, he is dirty, hungry, dehydrated, and sunburned.  And usually ready for help.

    Today, Darian and I went to the grocery store for some milk.  On the way home, I asked Darian to turn into a neighborhood that is off our usual route.  It’s a neighborhood that I used to ride my bike through when I was a kid and I’ve always liked it.  She drove through it and missed the exit I wanted her to take and took the next.  Shayne was walking down the sidewalk.  Darian pulled over and I told Shayne to get in the car.  He did.  He looked okay.  Not too sunburned.  He wasn’t wearing his robe anymore.  He said he lost it.  He probably abandoned it somewhere.  He told me that he’d been taking his meds.  I’d been thinking he could take all the meds at once, and end it all.  Or maybe throw the pills in the river.  Both are real possibilities.

    When we got home, I asked him if he wanted me to cook him something and he said that he was okay and he took a shower and went to bed.  He is still sleeping.  I am not sure what comes next.  Maybe I should take a nap too, because honestly, I am emotionally drained.  I feel like I should be coming up with a game plan, but I’m out of ideas.  I’d like some help, but I don’t even know what to ask for anymore.

     

  • OMG

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    Photo by Public Domain Pictures on Pexels.com

    I hope this is my last post for quite some time about dealing with inadequate mental health care.  Shayne was released earlier this week, even though he really wasn’t completely ready.  He is still having problems filtering out his hallucinations, is a tad bit paranoid, and still really freaked out about freaking out so badly–sort of like PTSD actually.  But whatever, treat ’em and street ’em is the motto.

    So most times a release from the hospital comes with scheduled appointments to outpatient providers within a few days.  Shayne had appointments at the place in town where he goes for therapy.  He hasn’t been going there very long, but his counselor is solid.  She’s been around the block a little and at least is a little knowledgeable about his diagnosis.  She also made it possible for an actual psychiatrist to work with Shayne, so he can get his medicine at the same facility–that’s good care–professionals working together to provide wrap around service.  So I thought.

    When I took Shayne into his appointment yesterday, the staff didn’t realize that Shayne had an appointment.  I pulled up my phone and showed them my confirmation text.  They looked at each other, puzzled, then got on the computer.  Then the receptionist got on the phone, right in front of us and called someone and asked about a name I’ve never heard of before.  So I said, “That’s not who Shayne usually sees.”  The receptionist told me that he would meet with a case manager since it’s an after care appointment.  A few minutes later, two women who are barely old enough to be adults ambled in with their Sonic cups and stood in the receptionist area, shooting the breeze with each other.  The receptionist nudged one of them and told her that her appointment was there.  The girl literally said, “I have an appointment?”  She proceeded to sit down at the computer screen to read about the appointment.  She looked up and said in my direction, “What kind of after care?”  It was all I could do to not say, “Are you freaking kidding me?”  Instead I employed my deep breathing and spelling Pittsburgh three times method of calming myself.  I don’t want to get into the whole back story in the lobby with an audience, so I just said, “Shayne can tell you what he needs.”  I wasn’t really sure that he could, but he isn’t six either, and I could sense his agitation and frustration.   So she asked him to come back to her office and I asked how long the appointment would last and was told an hour.  An hour reassured me because he was hyper anxious and needed to talk to someone who could help him.  Not that I had a ton of faith in the case manager or whatever she was.  So when Shayne went back, I said to the secretary.  “That can’t happen again.  The person that helps him needs to know what she is doing, or at least pretend to, or he is just going to walk out of here.  He is not going to trust anyone who acts incompetent. He is schizophrenic, not stupid.”  I guess I shouldn’t have expected a response.  But they just stared at me.  No one said a word.

    So I left to take Darian to turn in a job application across town.  The phone rang before we even got a mile away.  Shayne was finished.  I glanced at the clock.  He hadn’t even been there ten minutes.  They have rescheduled him with his normal therapist for next week.  It was on the tip of my tongue to ask why that wasn’t done to begin with, but what is the point?  He sees the doctor today.  This is his first appointment with her.  Please, God, let her know what she is doing.

    In the meantime, I am duck sitting again.  James collects bugs for her.  I gave her some wasps yesterday that I found floating in the rain barrel.  She’s kind of a brat though, so I didn’t go out of my way.  Maybe I will have Shayne gather grasshoppers for her.  It would be ironic if the duck turned out to be a better treatment plan than what modern medicine is offering.

     

  • Frustrated….or the other F word.

    Shayne was committed, which basically means Shayne is unfit to make medical decisions and the hospital makes decisions about his medical care for up to 90 days. I don’t disagree with the decision. I would like Shayne transported to a closer hospital, but insurance won’t transport unless the hospital he goes to offers a different program or feature. Transport costs 5-10 thousand dollars. So he is staying in Denver.

    Yesterday his doctor told me that he is doing better and she is releasing him. I was confused. A week ago, he didn’t recognize me. Three days ago, he thought the hospital staff was trying to frame him for murder. Last night, he told me that Dr. Ross (his doctor) is operating under a false name. She isn’t really a doctor, she just stole that name from the a television trivia game and he can’t really take her seriously. He is looking better, but he is still having delusions and I know he is still struggling with hallucinations. It took him eleven minutes to play a hand of rummy. He is good at masking his symptoms, but he doesn’t fool me.

    So I asked the doctor if he was going to be released with an injection. She explained to me that it takes a transition time to go from oral medication to a shot and he would need about two weeks for that to happen. I asked why he couldn’t stay in the hospital through the transition. She said that if he was doing better then ethically he shouldn’t be kept in the hospital even with a short term commitment. Isn’t the commitment supposed to be in his best interest? One minute forcing him to stay in the hospital is ethical for him, the next it’s not? At this point I wanted to growl in frustration. But animal noises aren’t very mature or very helpful.

    So I took a silent deep breath and spelled Pittsburgh in my head three times and then said, “If you release him without an injection, he will stop taking his meds again. So in two days, two weeks, two months, two years, he will end up in this same place again.” She said, “You are probably right.” Too bad shaking is frowned upon, because that is what I felt like doing to her. Instead I said, “You have an opportunity to change his life. Keep him here, transition him to the injection. You could be the doctor that saves him, instead of the doctor that sends him back to the streets.” She just said, “I don’t think we will be able to hold him.” But at least she had tears in her eyes.

    So I read somewhere that the definition of insanity is when you do the same thing over and over and expect different results. I keep taking Shayne to the hospital during psychosis, expecting help. Doctors keep half stabilizing him and releasing him to the wind.

    We have been lucky. Shayne is not inherently violent. When psychosis hits he is more of a danger to himself, not others. He has no criminal record and has shown no propensity toward weapons. I am realistic enough to know though, that when he is paranoid and devoid of reasoning that anything can happen. One day our luck might run out. I might not be able to get him the help he needs on time. Something bad could happen. I am the only person, Shayne truly trusts. I worry every day what would happen if I could no longer fight for him. I wish I could make the doctors listen to me. I am tired of this system of slapping cheap band-aids on gaping wounds.