Repairing His World

---

Karen Gornish-Wilchek

 

August 2016

Eli and I were looking for a shady spot for our grandkids to escape the Tel Aviv sun, but the marijuana brought us to a full stop.   Asphalt steaming, the summer air on fire, the sweet, pungent scent of cannabis settled into the humidity. A cold popsicle dripping on me, I reached down to wipe Alma’s little face, but all I could focus on was the smell.

It had been only six weeks since Ozi died in Dana children’s hospital, several blocks away.  The smell of his marijuana had already begun to disappear from his bedsheets and clothes, from the furniture, from our lives. It was one more thing that we would have to let go of.

“Over there,” said Eli, pointing to the man sitting by the bird fountain. We moved towards him, lingering close by and breathing it in, imagining that Ozi was standing there.

“Savti, I’m hot.”

I glanced at Eliana, flushed pink, in her hat and sunscreen. A popsicle broke and fell, Yiftachi cried.

“Let’s get them out of the sun,” Eli said.

As we walked off to find some shade, I inhaled one more time.

“It’s not Ozi,” I said.  “It will never be him anymore.”

 

That previous Passover, Eli and I stocked up on weed with our fifteen-year-old son. We drove to the medical cannabis instruction center, meeting with a nurse who taught us about THC and CBD, the main chemicals in the cannabis plant. He showed us a chart of the various strains, each with a different percentage of these chemicals, alongside the list of illnesses they were treating: Parkinson’s, Crohn’s, epilepsy, cancer.

“You see here,” he showed Ozi.  “For your type of cancer, you need both THC and CBD.”

I jotted down the names of the recommended strains, even though it was already in the pamphlet.

“You can take it with oil, chocolate, even smoke it.”

“I know,” Ozi said. “I’m already smoking.”

“Does it help?

“Less nausea, less pain.”

“And how do you feel?”

“Really good,” he smiled.

It was a beautiful spring day, Ozi happy and talkative in the back seat on the way home. I looked at the pile of reading materials on my lap.

“Tikkun Olam Medical Cannabis,” I read out loud. “What a name.”

“Yeah, I noticed that too,” Eli laughed.

“I doubt the rabbis had marijuana in mind when they thought up the concept of repairing the world,” I joked.

Ozi inhaled cannabis through his vaporizer.

“Repair the world with the kingdom of G-d,” I quoted the verse from the Aleinu prayer.  Ozi definitely needed his world repaired.

For the past few months, it had been falling apart.

 

In August 2015, Ozi was suffering from severe leg pains. Tall, athletic, with unruly dark hair, his complexion had lost color, he was sleeping all the time. After undergoing scans, blood tests and a surgical biopsy, he was diagnosed with Ewing’s Sarcoma. He had bone cancer.

Our reality had changed, but we tried to create a routine at home, some sense of normal that would help Ozi cope when he wasn’t in the hospital. His older siblings who had already left the house would visit often, Matan challenging him on the PlayStation, Hadar jamming with him on the guitars, Hila watching with him the odd YouTube videos he loved. His tenth-grade teachers gave private lessons at home, assigning homework to keep him occupied.  He was reluctant, at first, to see his friends.

“I’m afraid they’ll pity me.”

“Just give them a chance,” I tried.

“But it’s awkward.”

“What is?”

“Being sick. Losing my hair. I’m embarrassed.”

“But if they don’t come over, you’re stuck with me.”

Soon his friends began to visit after school, in the evenings, on weekends. When the house was full, I would order pizza or make pancakes while Ozi sat on the basement sofa, kidding around, as if everything was still the way it had once been.  At night, Eli and I watched TV with him, laughing with him at the silly sitcoms. But no matter how much we distracted him, trying to keep his world calm, there were days that he could not get out of bed.

“Ima, what I have is metastasized, right?” He rested his head on my lap.

I stalled.

“Yes.”

“I read about it.”

“Where?

“I googled it.” He said. “It said small chance of survival.”

“Ozi, don’t believe Dr. Google.” I kissed his bare scalp. . “There’s statistics, and then there’s you. And you’re responding really well to the chemo.”

“I had nightmares last night.” He winced.

“Why didn’t you wake me? You shouldn’t be alone.” I rubbed his back, his body, tense.

He didn’t answer.

 

Medical cannabis was Ozi’s idea from the beginning. Several hours after the doctor told us that Ozi had a tumor, I sat alone on the sofa on Friday night, staring through the Shabbat candles, the table left unset.  When Ozi returned from synagogue, he was smiling as if the day had passed over him.

“I was thinking,” he said.  “If I have a tumor, I might qualify for medical marijuana.”

“Maybe,” I lifted my head towards him.” I don’t really know. Do they give it to kids?”

“‘Of course,” he said. “I’m sure.”

“I haven’t really been following that scene.”

I was wary of Ozi smoking pot. Thinking back to my childhood, I remembered the stoned hippies hanging out on the beach across from my grandparents’ apartment, the fellow college students dropping out after becoming “potheads.”

But this was medical cannabis. He would use it with a doctor’s supervision and I could keep track. I looked at Ozi, his eyes wide and excited as he suggested medical cannabis.

“We’ll see.”

Several days later, we met with the pediatric oncologist in Dana hospital. Dr. Levin was a tall man dressed exactly like Eli, in a light blue oxford shirt, khaki pants, and crocheted kippah on his head. He sat with us to explain the protocol, directing his focus to Ozi.

“What about you?” he asked him. “Do you have any questions?”

Ozi asked about attending school and then brought up immunotherapy.  Dr. Levin grinned. He hadn’t expected a fifteen- year- old to be up to date with the current cancer research.

“One more thing,” Ozi said. “What about medical marijuana?”

“Let’s first see how you respond to regular treatment.”

“And the pains?”

“The chemo will help. But I promise that if you need cannabis, you’ll get it.”

“I’ll give chemo a chance,” Ozi said on the way home.  “But if things don’t get better, I’m not giving up on the weed.”

 

Already on his first day of chemo, Ozi wasn’t feeling pain anymore. While he had difficulty coping with the side effects of treatment, the burning gut, hair loss, nausea, the PET-CT results showed that the cancer had regressed after two sessions of chemo. The encouraging news helped him endure the ensuing treatments. By December, his bone marrow was harvested for a future self-transplant that could have promising results. But on the day before his PET-CT in January, Ozi complained about pains in his legs and arm. Several days later, we found out that the cancer had returned.  He started a new protocol, which would continue until March, when he would undergo another scan.

On clinic days, Ozi would pull his hoody over his face before walking through the door, then curl into a seat in the corner of the waiting room and fall asleep. At home, Eli and I continued to adhere to our routine. When Ozi wasn’t with friends or siblings, I was with him, watching TV, listening to him play guitar, just talking. Eli came home early every evening, joining us. We never left him alone.

I washed his clothes late at night, throwing them into the dryer before he woke up in the morning, so that they would be fluffy and warm when he got dressed. Whenever he wanted to eat, I would prepare his favorite meals, even if it meant frying schnitzels at one in the morning. At nights, if he had trouble sleeping, he would climb into our bed, lying in between me and Eli, the two of us hugging, clinging to him. But six months since his diagnosis, he was getting weaker, still feeling pain. He was worried, frightened. It was getting harder to keep his world together anymore.

 

In March, we sat in Dr. Levin’s office, the crayoned thank you pictures on the wall behind him, the thick medical books on the shelf.

“The cancer came back.” He leaned on his desk, trying to make eye contact with Ozi. “I don’t think that’s coming as a surprise to you.”

We nodded. Ozi didn’t need a scan to know that another protocol had failed. He was awake nights from the pain, the narcotic analgesics leaving him irritable and tired. His body told him everything.

Ozi slouched, hiding his face, arms crossed.

“You’ll start a new chemo, and you’ll get more radiation to help with the pain.” Dr. Levin paused. The setback was hard for him as well. “Any questions?”

Ozi shook his head, then left the office, dragging his IV pole.  I followed, finding him back in his room, leaning against the wall.

“You know what this means,” he said.

I pulled his head to my shoulder, wrapping my arms around his bony clavicle.

“If I’m going to die,” he said, holding back tears, “at least I want weed.”

“So tell him.” I gestured with my head towards Dr. Levin’s office.

Ozi left the room, then returned, hands in the air.

“Yes!”  He smiled. “He said ‘Yes.'”

Had Dr. Levin prescribed an opioid, I would have been able to take a short walk to the hospital pharmacy and pick up the liquid oxycodone or fentanyl patches. Had he ordered a morphine drip, the nurses would have administered it within minutes. But cannabis is more regulated than narcotics.  Forms had to be filled out, hospital committees needed to convene. The approval took weeks. When the license was finally ready, we would need to drive to the Tikkun Olam dispensary in Tel Aviv, with limited opening hours, a guard outside and a long line of medical cannabis users.  I would drive around the block for twenty minutes. There was never any parking there.

 

A week before Passover, Ozi was back in the hospital with a fever, one of the signs that his cancer was resisting treatment. He was in such pain that when we showed up to the hospital, we needed to push him in a wheelchair.

His teacher came to visit, sitting with us in the park behind the Dana hospital, watching children on the swings, people rushing on their way home as night fell. Ozi’s eyes were downcast, and he didn’t say much. The April evening was clear and breezy, but as it became dark, it was too chilly for me.

“I’m going up to the room,” I said, leaving them sitting on the park bench, hoping that Pnina might be able to cheer him up.  After I returned to Ozi’s room, Eli showed up, holding his backpack in front of him, close to his chest.

“I’ve got the cannabis,” he said.

“Yay!” I jumped up and down, clapping my hands. For the first time in months, we smiled at each other.

“Let’s go down and surprise him.”

We asked around on the ward if anybody had a lighter; neither Eli nor I ever carried one.

As we approached the park bench, I could see that Ozi was hunched forward, his head facing the ground.

“Look what I have,” Eli said, pulling three bags of cannabis out of his backpack.

Ozi jumped up and his face brightened.

“Yes!” he said, slapping the bench. “Time to get high.”

“Take it easy, Ozi,” I said. “You’ve never done his before.”

“Just let him, Karen,” Eli said.

Soon Ozi was exhaling smoke from his first cigarette.

“So?” we both asked. “How is it?”

Ozi tried to blow a smoke ring, but failed

“I can’t believe that the first time I’m smoking a joint, it’s with my teacher, and my parents are taking pictures,” he answered.  But after his next puff, he smiled at the camera, posing with Pnina.

“Send me the pictures, I have to show my friends.”

Back on the ward, the night staff became his audience as he told jokes in what seemed like a standup routine from his bed.

“I’ve never seen him like this,” Maram, the head nurse told me. “He’s always been so shy.”

“You didn’t know him before,” I said, chuckling as he teased the redheaded doctor. “He was different before he got cancer.”

 

Cannabis was more than a drug that made him laugh and tell jokes. It alleviated his nausea, helped him sleep, and reduced his anxiety. After he’d lost over thirteen kilograms since his diagnosis, his appetite returned; the cans of Ensure were replaced with Ben and Jerry’s ice cream and fried mozzarella balls.

Instead of lying on the basement couch when his friends came over, Ozi went out to the park, the frozen yogurt place in town, even parties. He gave up the worn out sweatpants and pajama bottoms, wearing his jeans from ninth grade, tightened with a belt, soon taking off his hat, exposing his scalp with its light layer of fuzzy hair. I would meet him by the door, on his way to the park with his friends, cigarette and lighter in hand.

“Don’t worry, Ima,” Ozi said. “I’m not sharing my weed.

During the Shiva, when the boys sat with us, the subject of cannabis rose quickly.

“Tell me the truth now,” Eli smiled. “He can’t get in trouble anymore. Did he ever share?”

They all laughed, then shook their heads.

“He never shared. We never asked.”

 

On clinic days, Ozi would step into the waiting room with a large grin on his face. He kissed the nurses, joked with the social worker, and then gave Dr. Levin a long hug, slapping him on the back, like one of the guys.

“Ima, do you have Michal’s number?” he asked one evening after dinner.

“Who, the social worker? I cleared the plates off the table. He nodded.

“Yeah.” I paused by the sink. “It’s on my phone. Why?”

“I want to talk to her,” he said, looking away from me.

“Everything Ok?” I wiped the crumbs off the table

“Nothing’s wrong,” he said, then turned to me. “It’s just that for the first time this year I’m finally feeling alive. I need to learn how to live again.”

 

I sat on Ozi’s bed in the late morning, kissing his forehead, rolling him back and forth until he grunted.

“Get up. Your teacher’s coming.”

“Soon.”

Fifteen minutes later, he was still sleeping.

“Ozi!” I banged on his door. “I’ll send her to your room.”

“Ok.” He lay there, motionless, eyes closed.

“Just get up and smoke your weed already,” I heard myself saying. “It’s late.”

“You can’t just get up and smoke weed, Ima.” He finally sat up.

“Why not?”

“You need to chill first.”

“So chill already.”

“Ugh. You’re ruining my morning.”

I left the room to make his breakfast, which in those days consisted of a cup of Turkish coffee, floating over grainy, brown sediment.

Ozi sat outside with me, drinking black coffee, smoking marijuana. When the teacher showed up, she joined us at the table. Several minutes into his lesson, his appetite awakening, I would bring him two cheese toasts.

When Ozi first started using cannabis, I thought he shouldn’t be high during his lessons, but changed my mind.

“He expressed himself fluently today,” said the English teacher. “He was coherent and animated, I loved it.”

 

Something was glued to the bathroom mirror.

“Come here, Eli.”

“What?”

“You have a birthday surprise.”

Eli stood behind me as we read the message together:

Abba, happy birthday. Ima you’re the best. I love you both.

Taped to the scribbled heart were two joints.

We went to thank him.

“You’re sweet, Ozi,” I said. “But we can’t take them.”

“I want you to have them.”

“It’s your medicine,” Eli said.

“Just keep them.” He said. “Maybe you’ll need them some time.”

 

Eli took Ozi to the Tikkun Olam store once a week, letting him buy new accessories. We accumulated ashtrays, cannabis grinders, rolling paper, lighters, pipes, a vaporizer. “Purple Haze” and “Smoke Weed Everyday” became part of the family soundtrack. Our house was beginning to look like a cannabis paraphernalia store.

“Sometimes I’m worried that he’ll get addicted and won’t finish school,” I admitted to the social worker in June.

She stared at me in silence.

“I know.” I said. “It’s a good sign that I sometimes don’t think about his cancer. But it’s just that his whole life now is cannabis culture. All he talks about is wanting a bong.”

“There’s nothing wrong with that.  He needs it,” she said. “Last year, he lifted weights, his friends looked up to him. He can’t do that anymore.  This is what he has now.”

The next day, Eli took Ozi to purchase a bong.

The day after, the pains returned.

 

The internet repairmen walked through the front yard, passing by my fifteen-year-old in Ray Bans, smoking marijuana. Ignoring their smirks, I showed them where we were having problems connecting to WiFi, then went to wash the lunch dishes.

The phone rang.

“What’s happening, Eli?”

He was crying.

“Shit.” I whispered. “You picked up the results by yourself.”

“It’s back.” He sobbed between words.  “Everywhere. His legs and arms… ribs, spine…And  his liver… spleen as well.”

A cat stared at me from the other side of the kitchen window, hoping I had scraps for her.

“Just a second, Eli.”

The repairman had come into the kitchen to ask me something. I don’t remember what the repairman wanted, but I recall that I answered his question.

“Ima, can you make me some coffee?” Ozi then called from the yard, over Wiz Khalifa’s music.

“Sure.” I turned on the kettle, then stood over the kitchen sink, water running, phone pressed to my ear, while I washed the same bowl over and over, listening to Eli cry.

“Dr. Levin wrote a new prescription for 60 grams of cannabis a month. Ozi should take as much as he wants, whenever he needs.”

 

We were waiting for Ozi to come out of the CT. His systems were failing, he had little time left. He screamed when they moved him on to the stretcher. The orderly rolled him out of the room, the young resident holding his IV line up to make sure the fentanyl continued to drip.  We began the walk back to the department.

“Wait,” Eli said to the staff. “Maybe we should take him out to smoke.”

“What?”  The orderly shook his head. “Oh no, I’ve got to get back to my station. My boss is yelling that this took too long.”

The resident agreed.

“Anyway, he can’t smoke with oxygen on his bed.”

I texted Dr. Levin.

“Ozi wants to smoke now.”

“I’m in favor.”

“Can you pass that message on?”

“I already did.”

The resident’s phone pinged. She looked at her screen.

“We’re taking you outside,” she told Ozi.

They pushed the stretcher through the tunnels of Ichilov, under the streets of Tel Aviv, into the elevator, up to the lobby and out to the park behind Dana.

“We don’t have any joints,” I said to Eli.

“Don’t worry.”  He said, taking an envelope from his pocket. Inside were the two cigarettes Ozi gave us on Eli’s birthday.

This was Ozi’s last time outside. He drank some cola, felt the hot summer air, and smoked his weed.

Back on the ward, he began to mutter.

“What?”

He repeated himself, but I couldn’t make it out.

“What does he want?” I asked my daughters.

They sat on his bed, leaning close, then began laughing.

“He’s singing a South Park song,” Hila explained, then joined Hadar in singing along.

Over the next few hours, he told jokes, sang more silly songs, laughing together with us until he fell asleep.

 

In October 2016, Tikkun Olam updated their website and Facebook page, announcing a new strain of cannabis. It had only been three months since Ozi had died, and he already had a brand of marijuana named after him. The post received hundreds of likes and replies. “Ozijuana,” one friend commented. “Do his friends get samples?” another asked.  “I can’t think of a better way to honor his memory,” Pnina wrote to us. “He would have loved that people would be smoking Oz.”

Maybe Ozi would also have been happy that we could take a short break from our mourning. He would also probably have been pleased that the “Oz” strain received five stars on Cannapedia.

Once the post went up, people began to contact me with their cannabis stories. One woman, not allowed to travel with medical cannabis due to restrictions in other countries, returned from vacation nauseous and irritable. A mother of an autistic boy was fighting to get him into a study on cannabis and autism after her son had been on psychotropic drugs for over a year. A friend whose daughter was diagnosed with cancer told me that her doctor refused to prescribe marijuana.

“At least we didn’t have to fight for it,” I said to Eli.  “I can’t imagine what we would have done if Ozi hadn’t been allowed to have his weed.”

“I know,” he said. “It was the only thing that worked out for him.”

 

April, 2018

Eli and I are on the way home from Friday night dinner. The evening is pleasant, the crescent moon, bright. We walk at a slow pace, listening to the rhythm of our shoes tapping on the red brick pavement, enjoying the crispness of the air. And then we come to a full stop. The smell from the corner house descends on us, we drift into our memories. A bench in a hospital playground, two joints glued to my mirror, making coffee on a summer morning, singing songs from South Park. Ozi is present and absent and tangible and missing. It might never be him anymore, but it will always be about him.

We hear young men laughing in the yard. Eli and I quietly approach the gate, careful not to be seen.  I ease my head into a bush near the house. A twig scratches my forehead and I push it out of the way, leaning my cheek on a cluster of leaves. I close my eyes, inhaling deeply, filling the hollowed space inside with the scent that is him, the sweet, pungent cannabis that repaired his world.

 

---