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Monday marks just 66 days since my son overdosed for the last time. He was 29 years old.
I always wanted to be a parent. Growing up, I knew I wanted to one day care for, nurture and love children of my own. I wanted to build a family. And I did. My husband and I made a home with five beautiful children in Cape May County, New Jersey. We own a construction business in town. We’re friendly with our neighbors and active in our community. But no one prepares parents for a child suffering from substance use disorder.
My son was a teenager – barely in high school – when he started taking opiates. He hid his opioid use for years, taking them to self-mediate his attention deficit hyperactivity disorder and depression. I didn’t know until he was 17 years old and substance use disorder had firmly taken control of his life.
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A week after his 18th birthday, my son was arrested for possession – an experience that subsequently impacted every aspect of his life as the criminal justice system grabbed hold of him and wouldn’t let go. The punishing stigma of the disease left us with few resources for treatment or support. I didn’t know where to turn. This is an issue that no one I knew had ever talked about publicly and, if they did, they were treated like outcasts – something we learned firsthand.
Over the years, he had so many overdoses that it was hard to keep count. I helped bring him back with Naloxone more than a few times, and I could see the disease was ripping him apart. Once, while he lay in a hospital bed after an overdose, he told me that he wished he hadn’t survived. He asked me why I didn’t just let him go. I held his hand and cried. He was arrested in the hospital – an overdose was a violation of his probation.
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From the moment I learned about my son’s struggle with substance use disorder, I committed myself to learning as much as I could about the disease. Over the past nine years, I have worked with other parents who have lost their children to overdoses. I have advocated to change legislation to support prevention, evidence-based treatment practices, recovery support programs and family support. I testified in front of the New Jersey Legislature, I chaired task forces, and I became a certified recovery coach. But substance use disorder is a powerful disease.
At my son’s funeral in July, I handed out nearly 200 overdose prevention kits, which included Narcan, and provided information on substance use disorder and harm reduction to all who came. Many of his friends and acquaintances are still struggling with the disease, and even more are likely to be doing so in secret.
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Others attended who had never met my son, but were compelled to come after hearing our story and feeling a connection with what we’ve been through. I was as open and honest about our experiences as possible, desperately hoping that maybe the story of my son’s death could help save another’s life.
Effective treatments are out there
In the past two decades, more than 900,000 people have died of substance use disorder in the United States. Last year, an estimated 93,331 people died, an all-time high. And 2021 could be even worse. I know that each of these 900,000 people struggled with this devastating disease. I know that each of them loved and was loved. And I know that each of them have families with stories like mine.
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I have comforted parents and siblings, I have been comforted by loved ones, and I have felt the depths of despair that this disease can inflict. But most of all, I feel angry that it has all gotten to this point. I am angry that we have not done more for the millions of people and families who are affected by substance use disorder. I am angry at the outdated laws that stigmatize effective treatments, the patients who receive them and the medical professionals who prescribe them. I am angry at the unnecessary restrictions that lock proven and safe medications like buprenorphine away – even as they have the potential to reduce withdrawal symptoms and save lives. And I am angry that we, as a society, do not do all that we can to help those of us suffering under the weight of this horrific disease.
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We can do more. If Congress passes the Mainstreaming Addiction Treatment (MAT) Act, that’s a start. It makes buprenorphine more available by eliminating barriers to prescribers. By removing the stigma these restrictions cause, I hope these treatments will allow more people to get the help they need and allow more of us to tell our stories.
The only way to overcome this national crisis is for each of us who are affected by substance use disorder to come forward and speak about it. It will make us all feel a little less alone and aid a lot of people in getting the help they need and the support they deserve.
My son’s life could not be saved from the destructive grasp of substance use disorder. But if we work to demand change, end stigma and support each other, I believe we can save thousands of our loved ones, together.
Tonia Ahern has been an advocate for families and individuals affected by substance use/mental health disorders since 2012.
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This article originally appeared on USA TODAY: Substance use disorder took my son. When will we treat people with this horrific disease?
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