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Reflections on Loss to Substance Use

Every time I hear of a loss to substance use, my heart breaks a little more. Another family shattered. Forever grieving the loss of dreams and celebrations.

It brings me back to that moment in the ICU and still in shock, I looked at the social worker with a little indignation, “Did I want thumb prints of son?” “Thumbprints to bring to family events in the future “ she said.  NO …I mean “Yes I’ll take the thumbprints” but, NO!! I want my son to be there at these “Graduations and Weddings” of the future. What the h** is a set of ceramics going to do for me, no..thank you. I want Sean there, happy, sober and healthy. Happy, joyous and free-just what the I thought rehab promised (and it does happen for many people).

Families suffer not just the loss of their child but, the stigma surrounding substance use compounds the loss. For many of us, the loss comes after suffering in silence for many years.

Sadly, that is the reality that I experienced, just 5 years ago. We haven’t made much progress. It’s not like a cancer death.

Don’t misunderstand, I know if someone with cancer were told they could survive if they didn’t drink alcohol or take oxy they would absolutely stick to the prescribed regimen. I have every wish for people to live cancer free.  Substance use messes with your brain. It’s the brain disease that wants you to die, to fight everyday against your own self.  “You don’t deserve to live” “You’re just a bad egg” all words Sean told me about himself.

People with substance use fight every day to get healthy, it’s a momentous battle. Sean cried just days before he died “It’s just so hard, Mom” with tears streaming down his face. I tried to take him to treatment that Thursday. He didn’t want to miss work, he didn’t want to let his coworkers down. He was dead 5 days later. Fighting a battle no one could see.

There is family help available. I recommend Team Sharing, if you have lost a child who struggled with substance use.

If you have a child struggling, think about Magnolia Addiction Support.

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Gratitude

This Thanksgiving has been different. It is the first Thanksgiving I have spent away from my son Ned. I had a COVID test pending due to an exposure and didn’t feel it was safe for him to come home. Luckily, the test came back negative a few days later. So, I was left to with time to reflect on some years in the past.

There was the Thanksgiving, I spent the day on the phone with Sean, unable to get him into treatment and he spent the holiday in jail. I spent the day before all day with the insurance company and couldn’t get approval for treatment in time to get him out. Then, there was the year we spent away from him as he was in treatment, only to have him get into trouble and get kicked out the very next day.

Interestingly, my favorite was year was at a treatment center that felt more like home to me. Ned, Tim and I flew out to be with Sean. We all gathered at the men’s house and had an amazing dinner with other kids and their families. What was astounded to me was the laughter. People enjoying the company of their loved ones. Most family visits I remember had tears and drama, we had just a few hours to have very tough conversations.  This time we had a joyful event to share and no hard decision talk. We could just be a family. Of course, we were all confident of the bright future our children had on the road to lasting recovery. The magical thinking that overcomes every parent when their child enters treatment, this will be the time. Surely, they have reached their bottom. They will succeed and we will all live happily after. Sometimes the dream comes true. Don’t give up hope.

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for_kindness

This site is devoted to improving treatment of mental health in honor of Sean Blake.  He was a young man who loved kindness.  A poet, writer and chef. He gave gifts of stories, letters and recipes.  Sean showed his love by cooking for family, friends and strangers alike.  You may have seen him reading palms on Church St. in Burlington, VT.  He touched many lives with his wit, charisma and love of life.

The site is maintained by Sean’ s family. We hope to show that Sean was more than his disease. We share our stories and many stories of families affected by substance use disorder. We hope there will be less stigma and shame with mental illness and substance use disorder. We hope to raise awareness of the dangers of opiates and risk of death from their use. We advocate for compassionate treatment and harm reduction. We hope to show healing and growth in our recovery from his death.

As anyone reading this can understand, Sean wanted to live, he wanted sobriety. It takes only one moment of  weakness with an opiate to cause serious consequences.

Sean died at age 27 from an overdose of alcohol and fentanyl, combined with marijuana.

We will miss him forever.

Overdose Prevention

How can we move forward and eliminate the continuing death tolls?

There are some immediate steps we can take to help now.

One, we need overdose prevention sites. While we are dealing with fentanyl we need to act now to ensure people can use without the risk of death. Sean had fentanyl in his system, 100% fentanyl, no heroin. This is the case with many deaths. Overdose prevention sites are needed as part of a harmreduction approach. Harm reduction is allowing people to use substances by lessening the risk of harm (death and disease). We have many people who desperately want recovery. They will never have the opportunity to find sobriety if they die.

We need to ensure access to treatment. Treatment facilities are lacking in Vermont. There is little availability of long term residential ie. 90 days or more. Especially treatment for co-occuring mental health conditions, like the bi-polar disorder Sean suffered from. Sean needed to go out of state for treatment. It was heart wrenching to not be able to support him, or be with him at holidays.

We need to decriminalize substance use disorder. Portugal has done this and the response has been overwhelmingly positive. Oregon has just begun this process. Mass incarceration is not going to solve this issue. Especially incarceration without treatment or rehabilitation. Forced treatment is harmful. The harm reduction services need to support people while they are considering. Drug and mental health courts that don’t support people through a relapse just, end up incarcerating them. This happened with Sean. Going to jail for misdemeanor charges (nonviolent charges) is not helping anyone.

We need to retain folks in treatment. When I was at Howard Center from 2018 to 2020 (until the OBGYN office needed me back fulltime), I had a 90% retention in treatment, very few of my patients didn’t make it (thankfully). Many are engaged in treatment and sober today. Many are now at Affiliates (currently a spoke in the hub and spoke) Why? we used a harm reduction approach. Warm, encouraging, reinforcing any positive change. You didn’t lose your medication for a relapse. Appointments were flexible and supportive. Judgement free treatment.

We need better access to medication assisted treatment. Vermont has long been lax with prescribing for opiates for pain but, tough on buprenorphine providers. It should be the opposite. My husband received over 200 pills for a fractured ankle in 2012, he used 2 tabs and we had a hard time getting rid of the rest. However, the Vermont guidelines for buprenorphine prescribing are rigid and harsh. Obviously, diversion is a concern with any controlled substance. However, less than 2 % of overdose deaths have buprenorphine in their bloodstream. People are not dying of buprenorphine use, nor is it a gate way drug. Buprenorphine protects against overdose deaths. With many people on fentanyl, the suboxone film (buprenorphine-naloxone) is difficult to transition to. It is easier to transition to subutex (buprenorphine only). However, the prior authorization process is cumbersome and time consuming. We need to eliminate prior authorization for buprenorphine. We need better coverage for medication assisted treatment. Medication should be free. Getting people coverage was a barrier to treatment.

Finally, we need prevention strategies. We need to need to address bullying in schools. We need a culture that supports healthy mental health. Sean endured bullying and the stress to fit in was a big factor in his substance use. I have been dismayed at the amount of shame people with substance use disorder endure. No other health condition, which is so deadly, produces so much counterproductive shame. Mental health should be promoted as health. Iceland has done an amazing job promoting health amongst it’s youth, we can do the same here. As evidence that overdose deaths and suicide are leading causes of death for our young people, we need a massive public health response.

HOW CAN YOU HELP?

Write your legislators!! We need a massive response yesterday!! We need Overdose Prevention Sites and decriminalization ASAP. This can be accomplished at the state level, with national response to follow.

Need to read more?

I recommend “Fentanyl, Inc” by Ben Westoff. “Dopesick” by Beth Macy. “Dreamland” by Sam Quinones.

“She Spent more than 110,000 on drug rehab. Her son still died” by German

Lopez, Vox September 3, 2019