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Kaya and his brother Jack.

Voices / Counterpoint

Kaya’s story

One family’s journey through opiate-use disorder, treatment, victory, and heartbreak

Brenda Lynn Siegel is a frequent contributor to these pages and the loving aunt of Kaya Benjamin Siegel.

Newfane

RE: “” [, Nov. 30]:

Kaya Siegel died on March 8, 2018 of a heroin overdose at the age of 25, becoming a statistic in an epidemic tearing through our youth. These statistics are children, grandchildren, sisters, brothers, and friends.

Born on March 22, 1992 at home in Brattleboro, his parents, Johnathon and Ea, were in love with their new baby. His smile was contagious and his personality joyful. He was the first baby of the next generation in our family. His mom was a lovely nursery school teacher and was extremely attentive, and he followed his papa around almost like a sidekick.

When Kaya was 4{1/2}, his papa, my brother, died.

Johnathon suffered from mental illness and PTSD. He died while using heroin at the age of 25; he was not addicted.

Following the death of his father, our family created a strong union and support system around Kaya. We came together in tough circumstances and did the best we could to create a happy, stable childhood for this boy we all loved.

Kaya was a normal kid; he loved to read, and he always had a book with him. Throughout his time at Putney Central School, he played sports in the rec league and was quite talented. He was an extraordinary writer. He was often busy “writing a novel.”

He was the funniest person I knew. We were often shushing him and then hysterically laughing. He made everyone feel at ease and welcome no matter who they were, from the time he was little until the day he died.

When Kaya was 15, he began to show the signs of mental illness. Our family was afraid — we would have done anything to help him. We sent him to a wilderness program in Utah that turned out OK. But then we were advised to send him to Vista, another facility in Utah.

There, Kaya was shamed and punished in ways that can only be called abuse. They did things like make him sleep on cement floors under fluorescent lights without a blanket for several weeks. It was a severe behavior modification approach that used shaming and downright verbal abuse.

Kaya told us many times how much the experience damaged him. He told us stories of the abuse, stories that are hard to even speak out loud. We didn’t know — we were trying to save him, to help him, not to harm him.

When Kaya came home at the age of 18, he set out to complete high school. He did graduate from Brattleboro Union High School. In that year, though still struggling, he spent time with friends and family and had some more-or-less normal times. He was extremely smart. Our hopes for his future were great.

* * *

When Kaya was 19, a monster I call Heroin enveloped him.

At times it stole him, made him a shell of a human being. In the worst moments, you could feel the dark cloud that surrounded him. Our family frequently would call one another to see if one of us had seen him or heard from him.

We knew he was getting beat up severely for not having money to pay for drugs. We knew that he did not want to be using. We knew he wanted to stop and couldn’t. We knew that he had infections in his arms that were not being treated.

His mom would drive around at times seeing if she could find him. Some days I would have coffee with him and leave town and cry all the way home thinking, “What if tonight he dies? What if I left him there and didn’t give him money and someone kills him? What if today is the day he overdoses?”

Each person in my family was all consumed by this illness.

In 2012, Kaya fell off a roof as a result of his disease, breaking 27 bones in his face. He had to have his forehead replaced with metal, he had to have both his nose and his upper palate rebuilt. He had pins in his one arm, and he broke the other. He had brain surgery.

Our family took turns sitting with him at Dartmouth-Hitchcock Medical Center. He almost died. But he didn’t.

At one point, I asked him why he did heroin in the first place.

“I wanted to see what my dad was doing when he died,” he told me.

I don’t know if that is true or if it was just an easier explanation than whatever was his truth. He had bipolar disorder, he had anxiety disorder, and both his father’s death and his time at Vista had left him with PTSD.

The cards were stacked against him in getting better, but, nonetheless he tried — and he tried hard.

He had several stays in detox at the Brattleboro Retreat and a couple of times at Maple Leaf Treatment Center and other facilities.

Following one of his inpatient stints at Maple Leaf, he left with the outpatient option. He was doing well, it seemed to be working, and then, without warning, Maple Leaf closed without placing their patients anywhere or providing them with any supports.

The treatment center just evaporated, leaving an extremely vulnerable population — one for which it was responsible — to fend for themselves.

Kaya was unable to fend for himself. He relapsed and began to use again.

* * *

One year ago, in April, Kaya was the worst I had ever seen him. He was suffering. I was begging him — we all were begging him — to get help. We told him that we loved him no matter what and that we always would.

He broke into my father’s house, and my father called the police — not because we wanted him to go to jail, but because we wanted him to be alive.

Kaya was scared of how painful detox is. When I pointed out that he was suffering at that moment, he sent me a one-word answer: “horribly.”

A few days later, he went to detox and from there to Hazelden Betty Ford Foundation in Minnesota. His treatment was covered completely by health insurance. He was there for about three months.

He went to a strict step-down program for five months and then moved to a halfway house for several months; then, finally he was out on his own. He started a job that he loved and was proud of.

He regarded Hazelden as the best treatment center he had ever experienced. There, its staff taught him self worth, they gave him the support he needed for his mental illness, they helped him become a whole human. He also was able to stay there for the longest he had ever been.

He was succeeding.

* * *

While Kaya was in treatment, he missed some court dates. He violated conditions of release by leaving Windham County. He did so to go to treatment — which does not exist within the county or state.

The state would prefer that people ask first, wait for the answer, and if the answer is no, not leave. People suffering from opiate use disorder need to go to treatment the second a bed opens and they are willing. The best chance for them to get better lies in treatment, not jail. Is the focus of this state on punishment or restorative justice?

Which is best for our society?

* * *

My family ultimately can’t know what destabilized Kaya after a year of sobriety. We can’t know for sure if he picked up heroin while he was in Vermont or after he went back to Minneapolis.

This is what we do know.

Kaya came home for 24 hours, on Feb. 16. Prior to his return, he had been stable. He was extremely healthy when he arrived — the healthiest I had ever seen him as an adult.

He returned only after his attorney had tried to negotiate so that he would not have to do so — but to no avail. The judicial system wanted to rip a vulnerable person, one who had almost a year of sobriety, who was paying taxes and contributing to society, from his support system to go to jail. To what end?

He came back because he thought he was ready and stable enough to face it. He came with clean, weekly drug tests that spanned almost a year. He brought a stack of letters from therapists, house managers, and his boss saying how well he was doing and what a productive member of society he had become.

He came back to a prosecutor, Steve Brown, who would not let up, and Judge Michael Kainen, who remarked with sarcasm, “I mean, I am sure the Betty Ford Clinic is very nice.” As if Kaya had been trying to do anything other than stay alive and get better.

I was with Kaya the entire day in court. I watched his demeanor change. He was strong and healthy when he walked in, but he was met with animosity instead of compassion.

From what I could tell, he was the one sober person who was arraigned that day.

I remember watching the proceedings and thinking, “What is their plan here? They want to pull him from his support in the name of justice? They want to create another statistic?”

Having walked in succeeding, Kaya left the courthouse ashamed, deserving of recognition that he was doing the extremely hard work it takes to get better. He left feeling just as they wanted him to feel: like he was scum.

Some people believe that the harder you are on people, the more they will learn. We know that no one learns from that old and outdated theory. Shame is not a tool used for good.

A week after returning to Minneapolis, Kaya’s friend died of an overdose. Death has always hit him hard.

It was the perfect storm, shame and death.

* * *

This is what we know about Kaya’s last night.

On March 7, he went to Taco Bell with a friend; he was jumpy.

On March 8, around 2 a.m. he left three messages for that same friend, who reported that “you could hear him slipping away.” He made those calls, we think, knowing he was overdosing and trying to get help.

Around 6 a.m., he was found dead in the bathroom at his work.

At about 10:30 a.m. the same day, I received the call from his boss telling me that Kaya had died. I screamed and fell to the ground. I went to Everyone’s Books and then eventually to a friend’s office, where I kneeled, doubled over and pleading with the universe to make this not be true.

“How am I going to tell his mom?” I asked.

Then at 1 p.m., I did — and then I listened to her scream, too.

* * *

We have all had to live with this since. Kaya’s mom, his sister and brother, his stepfather, his friends, his grandparents, his aunts and uncles, and I — we all have to live with this forever.

As Ea, his mom, said, “Who knew I would meet forever on the other side of a phone call?” — a phone call we have to prevent for other families.

Today, a mother is waking up without her child. All my family has left to share with you is what we know. We know that we will never get to hug Kaya again. We will never get to see his smile or hear him laugh again. We know that our hearts were ripped open as we learned that our family lost our battle.

We may not all agree on what causes addiction. We may not even all agree that we should humanize people’s suffering or that everyone deserves a chance. However, we all agree that we want the collateral damage to stop.

Kaya had an amazing year — he almost made it. And then he didn’t.

He is not alone. We are not alone.

This is how his story ends. It is within our power to do better.

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Originally published in The Commons issue #457 (Wednesday, May 2, 2018). This story appeared on page E1.

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