Story: Jesus Dreaming by Joy Murray

Today is my younger brother’s birthday.  He would  have been 53 today but he passed away from complications of the flu (we think) and massive organ failure.  He had paranoid schizophrenia and refused to see a doctor about anything.  This is the third work of short fiction I’ve written trying to understand his illness and its impact on his family.  On me.  At the end of this story, I’ve posted some links to another short ghost story I wrote about him and a few essays about him.  I think I’ll continue to turn this subject around in my head often.  Perhaps eventually, I’ll have enough stories and essays for a collection.  Time will tell. Any feedback on this story would be greatly appreciated.

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collaborative art between my son, Timothy Allen, and me

Jesus Dreaming

“If a man has lost a leg or an eye, he knows he has lost a leg or an eye; but if he has lost a self – himself – he cannot know it, because he is no longer there to know it.” – Oliver Sacks.

 

I was chopping veggies for gazpacho in the quiet of the kitchen.  My husband was at work, my daughter at school.  The kitchen was in the back of house and was like a sanctuary to me.  I’d opened the windows and a spring breeze wafted in through the screens.

From the corner of my eye, I saw a bearded man pass by the window and wave.  Next thing I knew, he’d opened the back door.  He wore a brown robe tied with a rope.  “God bless you, my sister,“ he said and came straight at me.

I pointed my knife at him.  “Get the fuck out of my house!”

His laugh was like soft notes from an old lullaby.  I dropped my knife.  “Patrick?”

“Yes and no,” he said.  I ran to him and hugged him.  His robe was scratchy.  He smelled musky like freshly turned soil.  Boney, I thought, my brother is boney.  His embrace was so strong I felt as if I was being swallowed by the earth.

“Oh my God, Patrick!  Where have you been?  We’ve been so worried.”

He stiffened and stepped back.  “And who is your god, sister?” he asked softly.

“What?”

“This god you called on — Oh my God — you said.  I heard gratitude in your voice so I know you were sincere.  But I need to know, is this the great Yahweh God, Father of us all?  Who is your God?”

“Just – you know – God.”

“I do know God.  Do you know Him?  Do you know His Son, who died for our sins?”

I chewed on my lip.  I wanted to answer him correctly and not scare him away like I did last time — 10 years, 2 months and 4 days ago.  “Jesus?  Our Lord and savior?”

Patrick smiled.  “Praise be His name.  I prayed you would know me, know my Father.”

“I’m so glad you’re here.  Are you hungry?  Where have you been?  Have you called Mom?”

“My Father told me to visit only you.”

“You saw Dad?”

“Your dad is not my father.  My father is Jesus.”

“Of course.  It’s better to think that way.”

I began pulling food out of the fridge.

“It’s not what I think,” he said.  “It’s what I know.  That man who claimed to be my father knew he wasn’t.  He even said it.  Remember?  He said it all the time.”

“Sure.  Do you want a sandwich?  I’ve got some sliced turkey.”

He smiled.  “May I sit?  Is there water for a child of Jesus in this house?”

I gave him a glass of water.  He drank it quickly, set down the glass and belched.  “He used to say he found me under a rock.”

“What?  Who?”

“The man who claimed to be my father.  We thought he was just saying that.  Tormenting me.  But it’s true.  He found me.  Not under a rock, of course, but in a basket on the Wolf River.”

I sat down, light-headed and confused.

“He brought me home,” he said, “and said I was his son, but I never was.  I was sent by my Father to comfort you and your mother, who were at the mercy of that demon.  I failed, of course.  But it’s because of the lies your father told.  He took me from the basket and vowed I’d never know I was a child of Jesus.  That Jesus created me on the banks of the Wolf River.  Jesus was exhausted from walking the streets of Memphis looking for a bit of charity among the so-called Christians.  He found only evil.  Your father laughed at him.  You were a child then.  Jesus saw the evil your father planned for you.”

He talked fast and little bits of spit frothed around the edges of his mouth.  I tried hard not to cry.  He still heard voices, but he was alive.  I wanted to hug him again.  I wanted to get a word in edgewise.

Patrick wiped his mouth with the sleeve of his robe.  He took my hand.

“Don’t cry, sister.  I’m here for you.  I know you need me.  I won’t hurt you again.”

“You never hurt me.  We were all just so worried when you disappeared, Patrick.  We were only trying to help and….”

He laughed.  “Patrick isn’t my name, you know.  My true name is Jesus Dreaming — for that’s how I came to be.  Jesus slept on the banks of the Wolf River and dreamed me into being.  He has dreamed my whole life for me.  I was blinded by your father, but now I can see the truth, the light, the dream that flows through me.  Your father ridiculed me because he was jealous that I am that chosen one.  I am not flesh and blood like you.  I am Jesus Dreaming.”

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~~~

Patrick lived with us for about a year before he disappeared.  He came to us broke and homeless — his roommates had kicked him out.  It didn’t take long for us to figure out why.  He’d stay up at night late, locked in my studio turned guest room, drinking coffee, and cussing out someone who wasn’t there.  My husband, Zeke, slept hard but it even woke him up.

It only took a few nights before he pounded on Patrick’s door, and told him to knock it off.  The next day, Zeke woke Patrick at 5 a.m. and told him to get dressed, he was going to work.

Zeke ran his own construction company and he hired Patrick as a laborer.  Zeke worked him hard, too.  The noisy nights ceased.  Patrick spent his first check on groceries for the family and cooked for us that week-end.  He bought a pork shoulder and he and Zeke got up at dawn to start smoking it.  They discussed infinite ways a pork shoulder should be cooked:  the right herbal rubs, the best way to baste, what to put in the sauce.  Between them they made barbeque that melted in your mouth, gave you something to chew on, and left a smoky aftertaste.  It seemed like Patrick was finally going to be okay.

Whatever Patrick did when we were kids was wrong.  Whatever Patrick did was wrong.  If he did nothing, Dad would yell at Patrick for being lazy and call him Patty the Pussy in front of everyone.  If he tried to do something Dad told him he would fail.  But Patrick grew up tall and strong.  He made quarterback on his junior high school football team.  Whenever he had a winning season, Dad would say, “Now you think you’re hot shit.  You think you’re better than us.”  Even though by the age of 15, Patrick was taller than Dad, Patrick would whimper as soon as the insults started, roll his shoulders forward and chest inward, as if that would protect his heart.  I’d hide in my room and plug my ears, but his cries came through.  I was too scared to do anything but curl in bed and wait my turn.

Patrick was very good at hiding his bruises, but when his coach finally saw them, everything in our lives changed rapidly.  He reported Dad and he was arrested.  One of Dad’s drinking buddies paid his bail.  Mom took us to her sister Clare’s house.  Mom got so drunk, she passed out in the bedroom.

Dad came straight from jail and broke down Aunt Clare’s door.  She, Patrick and I hid in the closet.  Dad stomped through the house yelling that he was going to kill Patrick.  He found Mom and tried to shake her out of her vodka coma.  We might have stayed safe in the closet, but Patrick ran out.  He pulled Dad off of Mom and punched him in the face.

Dad fell back unconscious, his nose gushing blood all over Aunt Clare’s beige shag rug.  She’d called the police as soon as Patrick opened the closet.  When he heard the sirens, Patrick panicked.

“They’re coming for me.”

We told him they would arrest Dad.

“No.  He paid them to kill me.  They’re coming for me.”  And he ran.

That ended the sham of our family life.  I was 17 and refused to leave Aunt Clare’s house.  Patrick’s coach took him in for a while and tried to get Mom to get Patrick some help.  But Mom took up with a man she met in a bar, and pretended she didn’t have a family at all.

Patrick began to fight at school.  He ran away from the coach’s house, only to show up a few days later, saying Dad was chasing him.  Patrick heard Dad threatening him on the school speakers and from radios.  He saw Dad scowling at him through windows and through the television screen.

Eventually, Coach got Patrick put in a Christian halfway house, where he accepted the Lord and learned some building skills.  He got jobs as a day laborer but they never seemed to last long.

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Cracked by Joy Murray

~~~

I asked Patrick to help me chop onions.  I thought maybe the sting from the onions would stop his chatter.  I was already exhausted from trying to make sense of what he was saying.  But even as tears rolled down his cheeks, he talked about how eating roots was once considered to be eating the devil’s food, since they grew in dirt.

“But mankind was made from dirt; roots are part of God’s goodness.  The rumor was started by old Beelzebub himself to starve good people and addle the minds of the wealthy.  Same with vegetarians today, mocking the order of things, even the blood Christ himself shed so that our souls should be nourished.  Meat is essential, else we grow to be sieve-like and God’s power drains through us.  In Eden, animals understand their fate.  The lamb lies down with the lion, the lamb understands he shall nourish the lion.  The lamb is reborn again and again to fulfill his sacred duty!”  He took a deep breath and seemed surprised to be where he was, in the kitchen, with me.  “Your dad thought I was a lamb.  But who is the lion now?”

I put the gazpacho in the refrigerator.  “I need to call Zeke and let him know you’ll be here for dinner.”

Patrick regally nodded and I escaped into the bedroom and shut the door.  I called my husband and informed him that we had a schizophrenic prophet as a house guest.

“Are you okay?  Should I come home?”

“I’m fine.  Can you pick Lizzie up from school, though?  Let her know what to expect.”

“What should she expect?”

“Oh, God, Zeke.  I don’t know.  He’s different.  He seems safe.  He’s talking crazy but it’s gentle.  He’s sermonizing.  I guess you can both expect to be preached at.  I’m going to set up the air mattress in my studio.”

“Well, I guess the evening will be colorful.  Do you think he’ll go to a doctor now?”

“Maybe a Christian one.”

We were silent.  Ten years later and we still didn’t have a clue what to do about Patrick.

Back then, he’d worked with Zeke for a few months, but his paranoia and night-time episodes started up.  On the drive to work with Zeke, Patrick would mutter about how other members of the crew made fun of him.  He’d threaten to kill them.  Then he’d babble an apology and talk about how the Lord would take vengeance for him.  Zeke told him he had to be quiet when they got to work and he was.  But he’d cuss through the night, threatening the other crew members as if they were in the room with him.  Zeke could only get him to shut up for a few hours.

We were exhausted.  Lizzie was 2 then.  We didn’t feel safe.  I pleaded with Patrick to get some help.

“There’s nothing wrong with me!  They sneak in through the window and when they hear you coming to check on me, they run away.”

One night we were watching the news together and he leapt up and shouted.  “See?  You heard that!  They can go in and out of a room without a door!  They confessed right on the news!  Now you see.  They’re out to get me.”

Lizzie started to cry.  Zeke said, “That’s enough!  If you can’t control yourself, you can’t stay here.”

Patrick stormed off to his room but he was quiet through the night and went to work the next day.

I talked to a friend who had a friend who did intake for mental patients at one of the hospitals in town.  He said all you had to do was call the police and they’d take him in to the Memphis Mental Health Center.  They’d get him on medication there.

My mom agreed to come over and help us explain what was happening.  Patrick was in his room and we called the police.

Their footsteps rattled the house.

We told them what had been happening but they didn’t seem to understand.

“Is he violent?” one of them asked.

“No.  He’s never hurt anyone.  He threatens, but it’s because he’s hearing voices.

Patrick walked into the room.  “Oh Martha,” he wailed.  “I never thought you were one of them.  I trusted you.”

“We called them for your own good,” Zeke said.

“You need help,” Mom said.

“All of you,” Patrick said.  “All of you are Satan’s minions.”

“Look Buddy,” a cop said and stepped right up to him, right in his face.  “You’ve been causing a lot of trouble here.  I suggest you get your things and move on.”

“You’re going to take him to the hospital right?” I asked.

Patrick barked out a laugh and stomped into his room.

“Lady, we’re not social workers.  All we can do is get him out of the house.”

Patrick had stuffed his clothes into a pillow case, walked past us all and out the front door.  Then he started to run down the street.

“You’ve got to take him in for help,” I pleaded.  “He’s sick.  We were told you’d take him to the hospital.”

They shook their heads.  “You were told wrong.”

“If he comes back and he’s violent, or tries to break in, we can take him to jail,” said the other.

And they left.  I ran down the block in the direction Patrick had gone.  But I couldn’t find him.  It was as if he disappeared.  He did, actually.

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Philosophy by Joy Murray

~~~

After hanging up with Zeke, I went back to the kitchen, Patrick wasn’t there.  I found him sitting on the front porch, finishing off a large bowl of gazpacho.  An empty sliced turkey package – enough for the family’s lunches for the week — was on his lap.

He smiled at me.  “It’s time for me to go back to work.  I just wanted to stop by and say hello.”

“Where do you work?  Where do you live?”

“After wandering this wicked country up and down and round and round, I have finally gone back to live at the place of my birth, at the banks of the Wolf river.  From there I can walk into the city and spread the word of God.  Those who have open hearts give me alms.  Those with closed hearts shun me.  I listen to my Father’s voice.  I am his child and his scribe.”

“Will you let me drive you home?  I’d love to see your place.”

Patrick pondered his callused, filthy feet for a bit, then said.  “I’d love for you to see what God has provided me.  But Martha, you must promise, as God is our witness, you must never tell another soul, neither your husband nor children.  Not your father especially.  Not even your mother.”

“I don’t even know where Dad is.  But Mom, you know, she’s quit drinking.  She even got saved.  She’s been a member of the Christ United Bible Church for almost 5 years and sober the whole time.”

“You mean that church of bigots and misers?”

I laughed.  “Well, she needs the structure, I think.  Keeps her from drinking.”

“And you, sister, where do you worship?”

I wanted to answer in a way that wasn’t a lie.  My family seemed to be driven in crazy circles between religious fanaticism and alcoholism.  My dad even blamed his behavior on his soul being held captive by a coven of witches.  He was born again while he was in prison.  He wrote me long letters in care of my mother.  I wouldn’t let her tell him where I lived.  He could rot in the hell he created as far as I was concerned.  When he got out, he ran off with a 17 year old girl.  I never heard from him again.

I sat down in my wicker rocker next to Patrick.   He seemed to have lost all his edges.  The beard and mustache filled out his gaunt features.  He had a few little crow’s feet wrinkles but his eyes were big and bright, with impossibly long eyelashes.

I’d always been jealous of his eyelashes, and his hair which hung in soft thick curls down to his shoulders.

“Every morning,” I said, “I sit out here and marvel at this old oak tree.  I mean, even in winter, when it’s so cold I can only bear to be out here for a few minutes, I take a minute and sit here under it.  And in the summer, it rustles in the wind and cools me.  I’m so grateful to be here.  To have this peaceful house and a sweet daughter and good husband.  Patrick, I’m sorry, it’s all I can do.  I sit in this peace on this porch and pray it never goes away.”

“In the sheltering arms of the Lord,” Patrick said.  “By His works, ye shall know Him.  It’s better to be here in God’s pure bounty than in the nest of vipers that call themselves a church.  Come now, and I will show you my home and church.”

Through a series of complicated directions, we drove to the outskirts of downtown.  We were close to where the Wolf River and the Mississippi converged.  We had to park and hike through a convoluted pathway for about half a mile.  It was getting to be the hottest part of the day and everything was steamy from recent spring rains.  Mud seeped up into my sandals.  Patrick walked with a practiced gait and I stumbled behind him.  Just as I was about to ask Patrick to stop, I needed to rest, we reached the river bank.

He’d strung up tarps over tree limbs like a bower.  Inside there was an old mattress, milk crates filled with bibles, and some pots and pans.  Several stumps surrounded a fire pit filled with ashes.

“Here is my home, my church, my destiny,” he said.  “I was kept from such beauty for too long.  Now the Lord has led me home.”  He gestured all around.  Ancient magnolias, oaks and pines stood guard — a green cathedral over his crude tent.

At the river’s edge, I saw a boat made of small logs, boards, and rope staked to the shore.  Water sloshed around inside and around it, though the river barely rippled.

“You don’t use that boat do you?”

“Patience, sister.  In the world of the Lord, things take time.  I am still gathering what I need for my boat.  Now I fish by the shore.  Soon I’ll fish in the deep water.  Who knows but I might catch enough to feed those starving on your city streets.”

I left him there and followed the trail back to my car.  I planned to go straight to a sporting goods store and buy him a proper tent.  As I tried to figure out ways of helping him, I tripped over a root, fell forward into the mud, and had the wind knocked out of me.

I writhed around, tried to stand up.  I made it to my knees and gasped and gulped for air.  The canopy of trees floated down like a green blanket, suffocating me.

Where was Patrick, God damn it!  If he was such a fucking child of Jesus, shouldn’t he hear me struggling?  Shouldn’t he help me?

I got up and staggered forward.  I’d skinned my hand.  Bright blood pooled on my palm.

Wasn’t I just in my cool sunlit kitchen?  Wasn’t I opening a window to a sweet breeze?

Mud clung to me.  I tried to rub it off but only ground it further into my clothes, my skin, my soul.  I lurched down the path, found my car, and sped home.

spirit tree
Spirit Tree by Joy Murray

Zeke waited on the porch.  I ignored his questions and rushed to bathroom to shower it all off and to be alone, but Zeke followed me.  He helped me peel off my clothes.  He stripped and got in the shower with me.  He tenderly soaped me up and I started to weep.  The water poured on us and between us, until I let myself be saturated with the illusion of cleanliness and safety.

How did I find such a good man?

He dried me tenderly and told me he’d given Lizzie the barebones story of Patrick’s return.  She already knew I had a mentally ill brother who went missing 10 years ago.

“She expected to find Jesus waiting here but instead she got the swamp monster mom.”

“Oh no!  Where is she?”

“I said she could watch anything she wanted on the VCR.  She didn’t even see you.  She won’t notice anything til her movie’s over.”

We went out for burgers.  I drank many beers when I got home while Zeke told me stories and made me laugh.  I slept in his warm embrace with no dreams at all.

Broken Open 001

~~~

Zeke came from a country where children were loved and educated and urged to be happy.  I am a refugee from a parallel country where parents beat and raped their children, then taught them to behave as if they were native to Happy-Family-Land.

Zeke had a weak heart as a child.  When he was a teenager, he started lifting weights and working hard.  He thought if the heart was a muscle, he should be able to build it up.  When I met him, his weak days were a distant memory.  He was only in his early thirties and already owned his own construction company.  He worked alongside the crew savoring the heaviest work.  He’d gotten a contract to renovate the building that housed the student studios for the City College of Art.

I’d gotten a scholarship there and was obsessed with being their most prolific student.  My art was minimalist but the canvases were big – 48 by 48 inch squares with gradations of pale colors and small animals hidden in the darkest hues.

He came in to survey the room at about 6 in the morning when no one was supposed to be there.  But I was always there when I wasn’t at work or in classes.  I’d learned to pick the lock.

Even when they started construction in the summer, I came.  I let the dust settle into the paint.  It added a mysterious texture to what I was doing.

He asked me to dinner.  Over burgers and beer, he said, “I bet you’ve got a lot more to say than that little bit of squiggle you’re putting in those paintings.”

“Those little squiggles are the reason I got my scholarship.  They said it showed depth and lacked the excess of many young artists.  My style has potential.”

“I know you’ve got potential,” he said.  “I just hope you don’t shrink it up so small you don’t get to say what you mean.”

“I didn’t think construction workers were supposed to have opinions on art.”  I sneered.  “Unless it’s pin-ups.”

He cocked his head and stared straight into my eyes.  “I think you know as well as I do there ain’t no such thing as supposed to.”

Once I fell into the deep pool of his warm, kind eyes, once I fell in love, my paintings got smaller and were filled with giant blossoms.  They didn’t get much praise from my professors, but they sold better.

Zeke accepted the challenge of having a refugee from a broken family as his wife.  He didn’t mind that I was broken.  He was a fixer.  A renovator.  He dealt with my dark times the way he did his own heart.  He built me up.  He got me out into nature.  He took me hiking, taught me to identify plants and birds.  He taught me to kayak.  We went to the ocean for our honeymoon.  We learned to snorkel.  Held by the warm salty water, I saw a world I’d been blind to.  I’d never be that blind again.

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~~~

I went to see Patrick every day.  He refused the pop-up tent I bought him. “This bower is all I need. The Lord my Father shelters me.”

I took him one of our kayaks.  Zeke offered to go with me, but I couldn’t let him.  I’d told Patrick I wouldn’t tell anyone where he lived.   I showed Zeke the general area, but I had to keep my word.  I figured if I kept the secret for the first few weeks, Patrick would relent.

I felt worried and restless all the time.  A spring storm could flood out the little bit of riverside he camped in.  He got dirtier and smellier.  His teeth were rotting.  He constantly scratched his head.  I offered to take him home and give him a lice treatment.  He only laughed at the annoyances of God’s little creatures.

I took him leftovers from dinner and sandwiches.  I couldn’t bring too much food because he had no way to store it.

Usually he was sitting in the tent, under the tree, reading one of his bibles, but one day I went to visit early.  Lizzie’s class was going to the zoo and I needed to be at the school by 9 to chaperone.

Patrick sat on the ground using a stump as a desk.  He had a dip pen and bottles of colored ink.  He was so intent on his work that he didn’t notice me approach.

He wrote – or rather drew – colorful symbols in circles around the paper, turning it as he drew.  Small birds spiraled in the center, bold letters circled them, lions and tigers and dragons circled the letters.  I say letters, but they only had the vague shape of letters, like some ancient alphabet that was still part hieroglyphs.

I watched fascinated.  Some of the work was smeared, but animated — like a swirl of color that was slowly revealing a story I could almost understand.

“What are you doing here?” Patrick suddenly shouted.

“I came early because I have to help out at the school.  Patrick, this is great.  You’re a real artist.”

Patrick hissed and spit and pulled the paper up to his chest.  “You can’t see this.  This is mine.  This my sacred work, dictated by MY Father, not yours.  Go!  Go!”

“But it’s great work.  You could sell work like that, make some money.”

He screamed words I couldn’t understand, his breath was hot and rank.  I stepped back.  He grabbed a limb and shook it at me.  I turned and ran.  He didn’t follow me but I could hear his rage as I raced back to my car.

I started the car and sped away.  It was too much.  I didn’t know what I was doing or why.  I couldn’t help that man.  That boy.  My lost little brother.

I was a wreck when I reached the school.  Lizzie’s teacher asked if I was okay.  I said I had allergy problems, that’s why my eyes were red.  I used my singsong voice, I’m fine.  She said I didn’t have to be a chaperone for the trip if I felt bad, but I had to.  I had to be somewhere besides in my head.  I had to walk along with children, to be normal.

I am a normal mother walking with her normal daughter through a zoo.  I think Lizzie sensed there was something wrong with me.  She didn’t walk alongside me, she stayed with her friends, slumping around in their 12 year old, “moms are so weird” way.  I smiled and nodded at the small talk of the other mothers, of the teachers.  In each cage I saw my brother pacing.  I saw myself throwing meat to an animal that really wanted to rip into me for dinner.

Patrick was on the front porch when I got home.  I was afraid to get out of the car, but he came out to the driveway to greet me.  He carried a bouquet of wild flowers.

I rolled down the window.

“Sister, please, forgive me.  I didn’t mean to scare you.  I was out of order.  I am so sorry, Martha.  I am still learning to do my Father’s will.”

He handed me the bouquet.  The stems were shredded from his tight grip.  “Please continue your visits.  My Father will visit me at night so you won’t disturb us.”

And he walked away.

I didn’t tell Zeke or Lizzie what had happened.

I visited Patrick the next day.  He seemed delighted to see me.

“I got the boat finished.  I caught 2 catfish out in the deep river.  I’ll feed you today.  I found bread, too.  My Father has provided loaves and fishes.”

He urged me to sit in the shade of the tent as he built a fire and heated oil a cast iron skillet over the fire pit.  As he busied himself, I noticed a bit of paper peeking out from under his mattress.  I reached for it and suddenly Patrick stood over me.  I jumped.

“It’s okay.  It’s the word of my Father,” Patrick said.  He pulled a few pages from under the mattress.  He took out a milk crate from between the mattress and tarp.  There were hundreds of pages of illuminated and chaotic spirals.  “It all brings grace to the savage chaos of our time.  I can’t tell what my Father means, but he guides my hand.  He will tell me when the time comes to share it.  Then the meaning will fly from the center of the page and into the hearts of man.  See how the doves start each page, each page starts in the center?  That’s our soul, that’s what our eyes will see, the dove of our souls flying into the hearts of the beasts.  See?”

My heart leapt as he showed me each page.  If only I could paint like that.  It was fluid and geometric at the same time.  The paper was torn newsprint he’d painted over with white acrylic.  To see the faint ghosts of news articles and ads behind the drawings added an eerie element to the composition.

“Where are you getting your supplies?”

“I spread the word of God.  People give me alms.  I buy what is needed to be my Father’s scribe.”

He left me and went back to tending the fish.  I pulled out two pages from the bottom of the pile and slipped them into my bag.

We were quiet as we ate the fish with our fingers off of newspaper.  I noticed the bread had a bit of mold on it and didn’t eat it.  “I ate before I came,” I said.

Patrick smiled.  “I guess you weren’t expecting to find such bounty here,” he said, then ate my bread.

I looked at the finished boat.  He’d nailed wooden patches over parts of it.  On each patch, he’d painted the words Jesus Dreaming.

“Please let me give you my kayak,” I said.  “Your boat is so rickety.  I’m afraid you’ll drown.”

He sighed.  “If it’s my time to join Him, my boat will make the journey as well as yours.  Besides, you know in your heart I’ve always had the power of God within me.  Remember when I brought that bird back to life?  It was after your father hurt you.  You found a dead robin in the backyard and you cried and cried.  It hadn’t been dead long.  I knelt down with you.  I held the bird to my heart.  It stretched its wings and it flew around our heads.  I told you then, every bird has a claw but not every claw has wings.  It made you laugh.  Remember?  Why sure you do!”

I nodded but I didn’t remember any such thing.  I left him and went home to wash the fish smell off of me.  Then I went to the College of Art.  Even though I dropped out, I was still good friends with my professor.  I showed him the drawings.

He was as taken by them as I was.  He called a friend of his who ran an outsider art gallery.  I went there and showed him Patrick’s art.  I told him a little of his story.  “He says he’s taking dictation from God.  I’m pretty sure he wouldn’t want to be part of a show, but I could get his works together and help write a bio.”

The gallery owner said he had a collector who would almost surely pay top dollar for Patrick’s work.

I could finally help Patrick.  I knew he would be resistant at first.  I planned to let him get angry, then take Zeke out to see him.  Zeke could calm Patrick down and tell him that showing his art was a way of getting God’s word out to people and a way of supporting himself.

When I got to Patrick’s camp the next day, he’d taken his tent and bed apart.  He squatted on the ground rifling through his art, muttering and hissing.

“Are you okay?”

“I’ve lost part of The Word.  Or Satan has stolen it.  I didn’t see him come.  I slept too much.  I can’t find it.  Without the entire stream, The Word makes no sense.”

“What are you talking about?”

“Pages are gone!  Pages are gone from my Father’s word.”

“Oh Patrick, don’t be upset.  I took them.  I showed them to a gallery owner.  They want to do a show.  It’ll make you lots of money.  You won’t have to live like this anymore.  It’ll get the word out, too.”

He lunged at me and grabbed me by the shoulder.  “Get them back.  Now!  You have to get them back!  My Father is angry!”

He shook me hard and pushed me toward the path to my car.  “Go!”

I did as he asked.  I went to the gallery got the paintings back.  The owner was upset.  I was sweating and talking fast.  He may have thought I was the one who was crazy.

Maybe I was.

I took the pages back to Patrick.  He grabbed them from me and looked over them, chanting, turning them in circles.    He loosened his robe.  The rest of his work was tied to his chest with a rope.  He stuffed the pieces I returned into the pile.

“Patrick, you’ll damage them.  These are great works of art.  They can help you live a better life.  Maybe that’s what God’s message is.  Maybe that’s why I’m here, why He sent you to me, so I could help you through the art, so you could…”

“Help me?  You think by being a thief you can help me?  You are a whore!  I am NOT Patrick and you are NOT my sister.  I trusted you but it was you all along, you were the devil in it all.  You ruin everything.”

He pushed me to the ground and strode away into the woods.

I don’t know how long I lay there.  I wanted him to come back.  I was afraid that he would.

I eventually gathered myself up and went home.

I halfway expected the next day he would show up with another bouquet but he didn’t.  Or the day after that.

Zeke wouldn’t let me go back by myself, so we went together.  Everything was gone – the bower and all his stuff.  The boat.  The only thing left were ashes in the fire pit.

I ran around looking for trails he might have made moving his stuff to another camp site.  There was nothing.  I ran along the river’s edge.  Zeke tried to keep up with me.  He was talking steady and low, but I couldn’t hear what he said.  I ran in circles.  Patrick had vanished again.  And again it was my fault.

I saw a piece of wood floating in the river.  It was almost as brown as the water itself, but there was some color to it. I waded out to get it.  On the sodden dark wood I could read the bright blue paint:  Jesus Dreaming.

The Wolf River undertow pulled at my legs, gnawed at my calves.  Was this why they called it a wolf?  I heard it growling.  No, it was Zeke calling.  He guided me out of the water.

I don’t remember much about what happened next.  We drove to the police station.  It was hard convincing them to come look at the camp.  They only wanted us to file a missing person report.

I kept insisting they needed to dredge the river, that my brother had drowned.  The desk officer asked Zeke for a description of Patrick, but Zeke had never actually seen Patrick.  I’d kept my brother’s secret too well.  The clerk eyed me wearily but he sent a cop to survey the scene with us.

That cop talked a lot to Zeke.  They walked all around the site, but the cop saw no “real evidence” that there was a camp, that there was a drowning.

There would be no dredging, no further search.  Zeke was urged to take me home.

The days after were a blur.  I had to go back into counseling.  I went back on meds so I could keep from crying in front of my daughter all of the time.  I spent a lot of time laying on the floor of my studio.  I knew I should try to recreate what Patrick had shown me, but my efforts were no more than scribbles that I tossed away.

 

About once a week, now, I take my kayak down to the Wolf River.  My oars slice through the brown waters.  I go up and down and round and round.  I peer over the edge of the kayak but instead of my own reflection I see his – like when he was a child — as if he’s sleeping in the water, his eyelids rippling with unfathomable dreams.

sean flew away (2)

***

Thanks for reading this story.  It’s a work of fiction.  Though my brother had times of deep spiritual beliefs, he never believed he was a savior.  I have known other people with schizophrenia who did, so I’ve jumbled up family stories and stories I’ve heard from others.  I’ve gotten comments from several readers of this story about not being sure of the reliability of the narrator.  What do you think?

Here are links to other posts I’ve written about coping with schizophrenia in the family and the loss of a younger sibling:

Essays:

Passages, Mourning and Halloween

The Limits of Gratitude

This short story was written out of need to make a benign ghost story, since most ghost that I’ve imagined have been much more helpful than many mortals I know 🙂

Driving Home

~~~

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Still Processing After All These Years

It used to seem to me that processing change should take only a short time — as in a few months or a year.  In fact, one of the things I require of myself when I have a major body change is that I wait a year before I decide whether or not I can live with it.  If I can’t, if I haven’t experienced moments of delight, if my change hasn’t become my new normal, then  I can re-examine the question of whether this life is worth living or not.

loss for words
Loss for Words by Joy Murray, 2013

I’m talking about major health changes, more than economic or relationship disasters, but sometimes they feel unbearable, too.  So much of life seems unbearable at times.  But they are usually bearable, often they make us stronger, wiser, wanting to live fuller.  Sometimes, of course, experiences, changes, hurts — they’re pointless and painful and have no lesson.  But we get over them in time.  In time, we process it, get our bearings right, and find a new way of feeling happiness and contentment.

We all carry sorrows with us.  Sometimes sorrow so heavy we can hardly move under the weight.  Sometimes, we dance while bearing that same weight, sometime with another who is also carrying unbearable sorrows.

Life lately has seemed to send me one challenge after another and I’m trying to process these and get on with it.  I have paintings to paint, stories to write, a life to live.  But I still feel confused and muddled about what to do next.  I keep having complications, either from my neurological disorder, or the treatments for it, or the endless bureaucracy and screw ups with my medications.

005
by Joy Murray, 2017

I feel like I’m caught in a state of constant processing.  And I feel bad that I’m still processing things that I should have already dealt with and moved on. (Oh, the sorrow spiral of feeling bad about feeling bad.)

I found myself last month watching a mystery series that dealt with the aftermath of a rape for the 8th time.  I knew I was using it to process past trauma and to escape the present complications of my medical problems, but it seemed weird and maybe self-destructive to keep looping through this drama again and again.

I called the National Suicide Lifeline, not because I felt suicidal, but because I felt I might be self harming and I wanted to talk to someone who didn’t know me about it.  I was reassured that people process trauma all kinds of ways and that there’s NO WRONG WAY, and NO DEADLINE.  Watching a woman regain her sense of self after a terrifying event is probably a benign way of helping myself grieve things that happened in the past and that are happening now and will continue to happen possibly for the rest of my life.  Not rape or sexual abuse necessarily, but things that make me feel utterly powerless.  And worthless.

I’m dropping and breaking things.  I’m running my wheelchair into door jambs and tearing up thresh holds.

20180504_161801
Dragged in my front door thresh hold after working on the porch garden

I feel scattered.  I feel like I’m not reading enough or keeping up with the news enough or enough in general.  I’m not able to do a lot of the things I did before to make myself feel better.  (I may be romanticizing the past, though.  Because I have bi-polar disorder, I sometimes think I did things better before, but I can’t really tell you what those things are.  Toni Bernhard wrote a great article about that in Psychology Today Online:  https://www.psychologytoday.com/us/blog/turning-straw-gold/201308/good-old-days-syndrome

I’ve spent a lot of time planting things for my porch garden and now I’m spending a lot of time looking at dirt, waiting for those first few leaves to break through.  Shouldn’t I be working on my something or something else?  While I still can?

I’m not writing this to get sympathy or reassurance.  I’m actually doing well.  Remaining productive while dealing with what feels like a rapidly deteriorating health condition in a slow, slow, slow health system.  I’ve experience such moments of bliss and joy in this past year that I could hardly keep from weeping  — even in this past month.  I feel loved and valued.  I am so grateful to everyone who supports me, those I know well, and those I only know marginally through the internet.

Still, I’m processing things and I can’t quite get my mojo working the way I want.  Does any one?  Do you?  How do you process change?

I talked to a friend, after talking to the kind person at the Suicide Prevention Hotline, and my friend said she did the same thing, watched things over and over.  She didn’t feel like she had to justify it either.  She just did it because it was what she felt like doing.  Ah, how I complicate my own life and emotions and needs.

Well, I’ll keep processing things.  And when I’m ready, I’ll do something else.

processing
Processing by Joy Murray, 2018

(The National Suicide Lifeline is a great place to find someone to talk to, even if you’re not necessarily suicidal but standing on shaky ground.  Even if you have friends and counselors and doctors.  They listen and hold up a life giving mirror to reflect life in.  Hope is their specialty.  They also have a chat line.)

~~~

If you’d like to support my art and writing, please consider becoming a donor on Patreon:

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If you prefer to make a one time donation, you can do so at paypal.com  My paypal account is set up under my email at joyzmailbox@gmail.com  If you have any questions you can email me.

You can get prints and cards of my work on Redbubble:

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Story: Blue Willow

I want to start sharing more of my fiction and stories with you this year.  I write stories, essays, vignettes, and poetry.  I’ve been blending my illustrations and stories more and more and have a few ideas for books that I”ll be working on over the next few months.

This story was published in Evening Street Review, a small literary press out of Sacramento, California,  in the Spring of 2017.

I’m not as attached to getting published so much as sharing stories.  I wanted to draw an illustration for this one before I shared it with you, so now that’s finally completed  I decided to go with a rough pen and watercolor piece rather than an elaborate series of illustrations.

I wrote this after I heard that the word elopement was used in the sense defined at the beginning of the story.  At the time, I was hearing a lot of stories from women in their 80s and 90s about their lives and fears and perspectives on aging, family and love.

I never know how reliable a story is, but I listen, and then I write.

evening street review evening street 2

 

Blue Willow

Elopement (noun) – an act or instance of leaving a safe area or safe premises, done by a person with a mental disorder or cognitive impairment.

 

In the cool of the morning, before anyone else woke up, I liked to slip out of bed and sneak into the kitchen.  I would put a small pan of water on the stove and heat it almost to boiling.  I was afraid that even the slosh of bubbling water would wake someone.  I made instant hot cocoa, sat at the table and cradled my hands around my blue willow cup.

I pretended it was my kitchen, my house, my reign once again.  It wasn’t.  Everything there belonged to the children, my grandson Aaron, his wife, and their two kids.  They were all like children to me, even the adults.  Though my Aaron and his wife were in their thirties, their faces seemed yet unformed.  Their wrinkles appeared when they laughed, but hardly enough for me to notice.  With my glasses off, they could well be teenagers.

The hot chocolate was sweet but almost flavorless.  When I was a young wife, I’d melt real chocolate, stir sugar into it, and thin it with milk.  I’d whip cream with a whisk and serve it in my grandmother’s cups, the blue willow china.  I had a whole set then.  It wasn’t fine china — the print was off register.  If you looked close, the images lost their edges and every line cast a blue shadow.

When my sight weakened in my forties, everything looked that way — blurred and off register.  Glasses cleared that up especially when I looked in the mirror, so I took them off to soften the signs of age.  Why did I long for smooth skin?  Aren’t the marks of age signs of strength and survival?  Isn’t survival the most beautiful thing?

Nobody really thinks so.

I’m not even sure I do anymore.  But I have time to ponder such things.  Youth is so brief.  Age goes on forever.

At my grandson’s house, there was only early morning and late night to think for long periods of time.  That was better.  I hate having time alone, thinking for endless hours.  Here at the home we have too much time.  My neighbors have outlived their dreams and can’t even bother to wipe their own drool.

I try to be sympathetic.  I know they give them drugs to make them not care.  They give us drugs.  It’s the only request we can be sure will be granted– drugs to make our last years serene.  I’m angry about that.  I’ve never taken drugs.  Even after Amos died.  Even after Ethan died.  When I fractured my hip, I had to take pain killers, but as soon as I could, I quit them.

I wasn’t happy when I first got to the home, so I complained a lot.  I wouldn’t take their pills, so they gave me injections.  I fought.  I still smile when I think of kicking the syringe out of that stupid nurse’s hand before the drug took effect and erased all my emotions.

They put me back on pills after a while to see how I’d react.  I took them like a good patient.  But really I hid them between my cheek and teeth, then spit them into the toilet later.  I pretend to be serene but I’m not.  I’ll have an eternity of serenity once I go.  Trouble has kept me going; fighting lets me know I’m alive.

Aaron doesn’t know they treat me this way or he would put a stop to it.  I wrote him a letter once begging him to come back and see about me.  To take me with him to France, that I’d watch the kids.  I’d learn French, I’d let his wife have her way no matter what.  I would not be a nuisance.  This home is worse than any foreign country. But I never mailed that letter.

He had enough to worry about.  He didn’t think I’d recover from my fractured hip.  So many just give up.  Did he think I would?  Did he want me to?

Maybe he just didn’t want to deal with another death, my impending demise looming over him like another dark cloud.  Better to go live in a foreign place with his wife and kids.  His kids weren’t really children anymore.  I know in my heart, though, it wasn’t easy for Aaron to leave me.  The home offered good care for astronomical amount of money, though he said it was cheap.  All the pension money from Amos, all the money from the sale of the house that I banked for Aaron, for his inheritance — this place will take all of it to imprison me in an antiseptic room with dung colored carpets.

He feels that I’m safe here.  He has inherited a lot of death, my grandson – his mother and father.  His grandfather, my Amos, too, who Aaron didn’t even remember.  It was a loss of not knowing.

I was unable to have more than one child.  Amos worked so hard and we gave our son Ethan everything we could so he would have an easy life.  And he did.  He was a good boy.  He married a good girl.  He had a good child.  Aaron was in the car when that drunk crashed into them.  He was old enough to remember, young enough to forget.  Five years old.  Sara, his mother, was pregnant.  For a while Aaron fixated on his mother taking the baby to heaven.  He thought she was selfish. Why didn’t she leave the baby?  he’d ask over and over.  What do you say to that?  That the baby was happier in heaven?  Then why did she leave Aaron here?  I had no answer.  Amos had died of a heart attack the year before, so I couldn’t turn to him for answers.

I was glad my mother was still around to talk with him.  I don’t know what she said, but Aaron seemed to forget about the accident. Then she died.  Oh, Lord, life seemed so brief and precious.  I did everything I could to make sure Aaron had a safe and easy life.  He did.  He does.

I don’t sleep well, so I walk the halls of the home at night, pad around in my slippers.  I wish I could walk outside, but they have a guard.  I slipped by him once but the door sounded an alarm.  I told them I just wanted air and exercise, I wasn’t trying to escape.

I got a shot every day for a month after that – maybe two.  Time blurs when you’re drugged.  It was long enough that when they transitioned me to pills that I could hide in my cheek, I felt jittery and agitated.  It was withdrawal.  All I had to do to alleviate that was swallow the pills, but damn them, I didn’t want to.  I had to be very careful not to let it show that I was in withdrawal.  Luckily, no one cares about shaky hands here.  It’s part of aging.  Of course a 90 year old will shake.  As long as I’m quiet, they don’t notice me at all.

But Charlie noticed.

He joined me one night as I paced the hall.  He found me on the second night at about 1 in the morning.  The night staff is often napping then.

“Insomnia’s a bitch,” he said and took up pacing right alongside me.

I savored the word bitch.  I hear the orderlies use it and other street words when referring to difficult patients, but I never hear the residents cuss.  We’re required to be well behaved.

“I don’t swallow what they give me,” I said.  “Once I get the drugs out of my system, I’ll sleep better.  Just not like a corpse they want me to be.”

Charlie laughed.  “I heard you were a trouble maker.”

“Really?”

“That skinny nurse with the orange hair told me.  I was fussing about the 4 o’clock dinner time.  I want to eat dinner at 6, like normal people.  She said, don’t act like Ms. Dormer.  She gets all uppity and uncooperative and we have to sedate her at least 3 times a year.  I think she was threatening me.  Anyway, I go to dinner at 5:50, just as they’re ready to close up the dining hall.  They don’t like it, but I’m paying a lot of money to be here.  Seems like I should be able to eat whenever the hell I want.”

We began to walk together.  We both have a slow gait.  I’d only been off a walker for a few months (though they said I’d never walk without one.)  He walked very deliberately, thinking about each step.

He has Parkinson’s disease and had fallen one too many times for his children’s comfort.  He hadn’t broken a bone like me.  He’s only 70.  The same age as my son would have been, had he lived.  When Charlie told me his age, I felt a shiver then broke out in a sweat.  It was hard to ever think of my son as anything other than a boy.  Now it was hard to think of this man as a boy, as anything other than an old man, given to bouts of shakiness.  But he was 20 years younger than me.  He noticed me eying him warily.  “I may be 70, but I have the body of a 90 year old,” he said.  I had to laugh.

“You know I’m 90,” I said.

“No way.  You’ve got good posture, good looking bones,” he said.

“Runs in my family.  We all out live our usefulness.”  Even as I said it, I thought of Amos and Ethan.  My chosen family, gone so young.  I started crying – not sobs like I used to cry, but tears slowly leaked down my cheeks.  Charlie didn’t ask any questions.  We just kept walking.

There are plenty of women Charlie’s age in the home, but I never saw him take up with anyone else.  “They lack zest,” he said dismissively.  “They all want a man to take care of — or for a man to take care of them.  They want me to sit around snapping puzzle pieces together.  You wouldn’t believe how happy they are to have a cracked-up picture to hang on the wall.  You, on the other hand, like to walk.  And you’re mad, like me.”  I don’t know if he meant angry or crazy, but either would fit.

He asked me to join him at dinner, at 5:50.  We laughed and talked until the server came and took all our dishes away — didn’t even leave us a cup for our decaffeinated coffee.

“I’ve got some illegal hooch in my apartment if you’d like an after dinner drink.”

What could I say?  Turned out he had a lovely tawny port and cut crystal cordial glasses.  The port was rich and warm, easy to savor.  It woke up taste buds I’d forgotten I had.  He talked about food and wine.  He’d worked as a chef for years and was deeply offended by the state of our food service.  We had no way of cooking for ourselves so we had to eat what was offered.  Many residents loved the food – it was all easy to swallow.  Charlie and I ate it only to keep our strength up and dreamt of better days.  A better day came sooner than I thought.

“Mrs. Evelyn Dormer, I’d like to take you to dinner Friday.  If you agree, we shall leave this dump at a discreet 3 p.m.  My son Bob will pick us up.  We’ll take in a movie and go to dinner at the late hour of 6:30.  Make sure the gendarmes know that you’ll be out.  If they need a doctor’s note proving your fitness, I’ll have some forged for you upon request.  No, wait, I’ll tell them we’ve discovered we have the same podiatrist and Bob’s giving us a ride and then taking us to dinner.  They’ll fall for that!”

It was easier than I expected.  I wore my blue embroidered silk dress.  It was a little loose but tailored nicely.  I hadn’t worn it in years and knew I looked ridiculous with my spindly legs and orthopedic shoes.

Charlie whistled low.  “Miz Evelyn, you look a dream.”

It was a warm and muggy afternoon.  I felt the heat prickle my skin.  He wore a linen sport coat over his Hawaiian shirt.

He escorted me out of the building where Bob waited in a sedan.  He held the door for us and we slid in.  Bob didn’t ask us any questions.  Charlie talked about how one of the art theaters downtown was showing Casablanca.  And it was right across from the restaurant he’d made reservations for – Chez Claire’s in the Mimosa Arms Hotel.  When Bob dropped us off, he asked Charlie if he had his beeper and cellphone.  “Yes, Dad,” Charlie griped and they both laughed.

We walked into the half empty theater.  I sat with my hands in my lap, but before the opening credits were over, he reached over and took my hand into his.  I looked down at our long thin fingers.  Even in the dim light of the theater, I could see the blue veins protruding out from the thin skin that covered our bones.  But something familiar flashed between us as if someone had lit a gas burner, blue flame sparked up right on cue.

As we made our way out, I said, “I would have stayed with Rick.”

“Even when you were her age?” Charlie asked.

“God, I hope so.”

Charlie knew everyone at Chez Claire.  They brought out food without us even ordering.  Everything was cut into tiny pieces like at the home, but each piece seemed to burst with flavor – beef bourguignon, tiny scalloped potatoes, asparagus tips and a rich red wine.  I hadn’t had food so good since – since I couldn’t remember when.

We ate and I laughed at his stories.  It was after 8 when we finished with a small goblet of lemon gelato.

“I don’t want to go back,” he said, “we could get a room here.” His bushy eyebrows went up and down.

I laughed.  “I wish we had a choice,” I said.

“But we do,” he said rather too loudly and grabbed my hand.  “Stay with me.  Stay with me tonight in the Mimosa Arms.”

A tremor seized him and he shook all over but his eyes stared steadily into mine.  Heat blossomed on my face.  I started to panic.  “They’ll call my son.  They’ll say I’ve run off.  They’ll put me in memory care.”

“No.  I won’t let them.”

I yanked my hand back and made my dessert bowl tip over.  “You can’t stop them, Charlie.  Aaron’s my legal guardian now.  If they tell him I’ve run off, that I’ve lost my senses, he’ll want me put under tighter supervision.  He’ll want me safe.”

“As if safety should be our only reason to live,” he sighed.  “I’ll tell Bob to come get us.”  He pulled out his cell phone.

“No wait,” I said.  “Let me use your phone.”

He seemed a little alarmed that I kept pressing buttons, but I finally got through them all, only to get the answering service.  Aaron’s wife had left a long greeting in French that I didn’t understand, but when it finally beeped, I said, “This is Nana.  I know you’re going to be surprised but I’m out on a date and it’s going well.  I’m not going back to that home tonight.  I’ll leave them a message, too.  I just want you to know, no matter what they tell you, I’m fine.  I’m…I’m…” I looked into Charlie’s milky brown eyes, “I’m happy.”  I hung up.

Charlie looked as if he might cry.  I gave him back the phone and he grasped my hands so hard I was afraid I might break.  “Thank you.  Thank you.  I’ll be a perfect gentleman.”

“I hope not,“ I said.  We actually giggled.

He phoned the home, pretended he was his son and explained that the elders were too tired to go back and he would return us both in a day or so.  Then he called Bob.  They argued for a minute, but Charlie hung up on him.

Later that night, as he snored in my ear, I wiggled out from our spoon embrace.  The room was well stocked with all kinds of drinks, even hot chocolate.  I ran tap water in the bathroom until it was hot enough.  I didn’t want the sound of the microwave to wake Charlie.  I sat on chair across from him in the dark.

I felt tender but alive.  Is touch the difference between survival and living?  My pains weren’t gone so much as shifted to the back of my mind.  I still felt decrepit in many ways, but also delicate, all the fight taken out of me, replaced with something I couldn’t quite name.  Fear was there, too, buzzing around in my head like a mosquito I had to keep shooing away.

I sipped the insipid chocolate from the heavy hotel mug, and pined for that thin blue willow cup that was sold along with my other things.  Who sipped from it now?  Had it been broken?  If so, I hoped someone took the trouble to glue it back together.  It was never worth much, but sometimes I miss it dearly.

###

IMG_20180424_0001

If you’d like to support my art and writing, please consider becoming a patron on Patreon:

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If you prefer to make a one time donation, you can do so at paypal.  My paypal account is set up under my email at joyzmailbox@gmail.com  If you have any questions you can email me.

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Nothing Can be Done

She never knew

In the neurosurgeon’s waiting room, there were few patients looking a bit more fragile than me.  One group was obviously a family. 3 men and 2 women, one woman quite old and quiet, who I assumed was the patient.  They spoke Spanish, but as we waited, one of the men asked in perfect English, “What happened to you?”

are we there yet 2

I felt wobbly, and walked slowly, leaning heavily on my walker when I arrived.  My dear friend who took me to the appointment went back and forth to the reception desk to take care of the paperwork and IDs and other botherations.

I explained I had a rare disorder, Hereditary Spastic Paraparalysis, which is a degenerative condition.

“I’m sorry to hear this,” he said.

“It could be worse,” I said, which is a good neutral response to almost any inquiries about health and happiness.

A woman beside me, who was playing a game on her Ipad, who used a walker and was probably 15 years younger than me, laughed and said, “Sure enough.”

What followed was a light and polite conversation on people we’ve known who’ve had it worse.  One man in the family of Spanish speakers said his wife has fallen down the stairs — only two stairs — and broke her neck.  She had total quadriplegia and couldn’t get out of bed at all, no fancy wheelchairs to help her move.  Movement was impossible.  She’d been bed bound for 2 years now.  Last year he got cancer (he pointed at his stomach), but he is okay now.

Doctor’s waiting rooms, to me, are always humbling places.

We all expressed sympathy and murmured about how yes it could be worse, we must count our blessings every day.

I felt strangely discombobulated.  I could feel myself trying to float into some story in my head, which how I usually deal with stress.  I was there to find out if I’d have surgery on my lumbar spine.  I wasn’t sure I wanted it.  But there was a possibility of relieving pain, and I’d allowed myself to think they maybe able to help me walk better, stop my leg twitching, and give me a break from the degeneration I’ve felt so keenly this past year.

When they called my name, I was given a loving look and nod by the man who originally asked about my condition.

Another thing I was nervous about was my weight.  In the stress leading up to this visit I’d been very indulgent in eating for relief.  I’d also had a lot of insomnia, so eating was a great way to pass the time.  As the digital scale rose past my last weigh in, the nurse hiccuped and apologized.  We both started laughing.  She told me she thought she’d outgrown hiccups.

“Do you outgrow them?” I asked.

“I was always told that when I was a kid.”

She looked to be in her late 20s.  She took my statistics and we discussed hiccup cures and laughed.  By the time she had me parked in the examination room, I’d forgotten all about my weight — the humor of the body made clear to me again.

The neurosurgeon, who looked to be about 18, was very friendly, but after looking at my MRI slides, he felt the structure of my spine, though damaged, didn’t warrant surgery.

YAY! I thought immediately.  Followed by a pooling of tears of disappointment.

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“Most of what you’re experiencing has to do with your nervous system.  I can’t really fix that with surgery.”  He recommended epidurals if I have another pinched sciatic nerve.  He called my neurologist and discussed why he didn’t think surgery was necessary and made suggestions about future care.

I focused on his nurses shoes, which were rainbow colored clogs.

The neurosurgeon said I was complex.  I told him my first diagnosis, when I was a teenager, was “abnormal.”  I still stand by that label.

He gave me my MRI disk and wished me well.

I tried to get into a good mood, but I had a headache, and felt exhausted.

My friend took me to lunch and we talked about our lives, stories we’d heard since our last visit, what is a good diagnosis, what is a bad one.

It was the first day that’s been really warm in April.  She drove me around, just talking. The sun lit all the buds and trees as we drove around, the windows down, the air sweet, urging growth.

When I got home, I tried to nap, but I couldn’t relax.  The warm wind blew through my screen window.  I got in my power wheelchair, and rolled around the neighborhood.  I stopped at the store and bought a geranium.

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I sat on the porch and watched people go by.  Every once out there was a shout or hoot from someone,  like a happy primate, enjoying the sun.

Part of me was irritated that I’d spent all these month taking tests, going to doctor’s appointments, trying new medicines — all to be exactly back in the same place.

Nothing can be done.

And yet, now I can schedule things, not worry about surgeries and recoveries.  Not have the level of blessed hope or the dismal pessimism that I was experiencing as I waited and waited to find out about the surgery.

I am handed my life back, such as it is

Such as it is, the sun is out.  All in all,  I love my life.  Geraniums smile at me, people take care of me, listen to my wild meandering thoughts, help me in and out of cars.  People support my art and writing.  The little help and the big help  has made me understand the beauty of interdependence.

Every day the full range of what life can and can’t be, what mysteries it can hold, passes by me and through me.

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And, lucky for me, nothing can be done about that either.  Sometimes, it makes my soul sing.

~~~

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