A Mother’s View on Substance Use Disorder: Perseverance and Unconditional Love
Tags: Substance Use Disorder, Recovery Success, Substance Abuse Treatment, Public Health, Opioid Epidemic

Substance use disorder (SUD) oftentimes takes an immeasurable toll on the family members and caretakers of the loved ones with this medical condition. Opiant talked with Michelle Ginsberg who bravely offered her firsthand experience watching her son survive and recover from his SUD. Michelle hopes to help other families and caretakers navigate the confusing addiction recovery process, including her ultimate goal of educating the public on how SUD is a lifelong, scientific disease of the brain that must not be stigmatized. She vouches for the life-saving role that NARCAN© Nasal Spray played in reviving her son from a near fatal opioid overdose and hopes to see increased funding for the innovation of new SUD treatments. Continue reading to hear Michelle’s sound advice and thoughts on how we can combat America’s evolving opioid crisis and save more lives. To protect her privacy, this interviewee appears as Michelle Ginsberg.

Opiant: Could you share a little bit about your experience with SUD?

Michelle Ginsberg: Certainly. When my son was in eighth grade, his friend phoned us to say our son was drinking himself to sleep every night and waking up sober in time to go to school. This was our first clue that we had a problem, but without this call, we would have gone a long, long time without knowing.

In those days, there weren’t a lot of addiction resources, so we did what we thought was best, which for a little while was nothing. But, addiction grows if it’s not dealt with and by the time he was a sophomore in high school, he was hospitalized because that was all we knew how to do. It turned out that the hospital knew nothing about addiction. They advised him to limit his smoking of weed to the weekends, and that we as parents should be happy he was still performing well in school. Well, someone with a substance use problem can’t just smoke weed on the weekends.

We also realized he had used a wide variety of other drugs, so we found an adolescent inpatient rehab. Unfortunately, he came out and resumed using drugs. Then, he went to a longer-term out of state rehab, because getting away from local friends was crucial. He was there for nine months; when he came home, he turned to drugs again.

Our journey for many years was in and out of rehabs and sober livings. We were just winging it, taking the advice of anybody who appeared knowledgeable.

Opiant: How were you educated about SUD? When did you start to understand it was a disease?

Michelle Ginsberg: Our life changed when the program our son was enrolled in insisted that we all go to the Betty Ford Center for Family Week. It was at the Betty Ford Center that we understood, for the first time, that addiction was a lifelong disease. We’d always heard that it was a family disease, but it never made much sense to us — because we are not addicts.

At the Betty Ford Center, I realized I was a child of an addict. I had always assumed my mother’s erratic behavior was the result of mental illness, but I learned that she was in fact an addict. I coped with my childhood by hanging on to control. So, as an adult, I think it can be easily said that I’m a control freak. Trying to control my son’s substance use disorder was getting us exactly nowhere.

My son had been in and out of rehab, jails and hospitals. He contracted a heart infection from his drug use, and during a hospitalization, my husband and I looked at him and said, “We’re out of money. We’re out of ideas. Do you have any?” He said, “Yeah, I need to go out of state.” He told us where he wanted to go and we said that if we could afford it, he could go. At that point, our son was dying, and we had no other options.

He stayed sober for six months there. He did one month in rehab and then another year in an apartment with friends. One day, he called to say he was coming home. I said, “The hell you’re coming home, you’re doing great!” Nevertheless, he came home and he stayed sober. Now he’s approaching nine years drug-free.

Opiant: Why that facility? What made it different from others?

Michelle Ginsberg: He somehow knew of a place that had a phenomenal community with tremendous support. They helped him rent an apartment and even helped him get a job. It was phenomenal.

Opiant: Your son’s story seems to reinforce the importance of community and daily engagement with those who understand or who seek to understand SUD as a disease. How crucial is this?

Michelle Ginsberg: I’m a huge believer in AA. I’ve always referred to it as the mothership. For a long time, my son keeping a hand on the mothership by going to meetings and being of service was critically important to maintaining sobriety. Now, he leads a sober life by surrounding himself with sober people, which is another key element to maintaining sobriety.

Opiant: Are you seeing isolation due to COVID-19 harming those critical connections?

Michelle Ginsberg: Isolation is a huge negative factor for someone dealing with SUD. Now, the meetings are on Zoom.

I keep in touch with many of the parents that we went through adolescent programs with. I try to make myself a resource for other parents who are going through it, too. They’re allowed to call me 24/7. I’m here for anybody who needs help, and I stay of service that way.

I’m also very active in trying to get medical research to the forefront of people’s consciousness because addiction is a disease. If it weren’t for medical research, my son would have been dead. Thanks to NARCAN© Nasal Spray, he’s alive.

Opiant: What advice would you give to someone who is seeking to help a friend or loved one when they are confronting something like this?

Michelle Ginsberg: There’s a difference between enabling and supporting; you never want to enable a person with SUD. At the same time, you also never want to stop supporting them, whether it’s an adult, a spouse or a child.

This is a hard line for people to walk and I had to learn it the hard way. You must be creative and think through the ways you are helping and if it’s in both their and your best interests and safety. Sometimes you can’t let them back in your house if they’re not actively seeking sobriety. If they’re still using, they could hurt you and steal from you, something we’ve experienced firsthand.

Opiant: What is the first step for someone who doesn’t know where to start in getting help for a friend or a loved one who is dealing with SUD? As people look for support from a professional organization, what should people watch out for to help distinguish the good from the bad?

Michelle Ginsberg: A good place to start is by visiting The Chooper’s Guide which lists many great facilities.

A lot of resources have hidden agendas or are backed by pharmaceutical companies but without clear disclosure, which are of tremendous concern. You should always ask the person you’re getting advice from, “Who’s behind this organization and where do you get your money?” If they won’t tell you, walk away.

If someone says that your opinion on the health and welfare of the person in need of help is irrelevant because you don’t understand, you should also walk out. Tackling addiction is a team effort. As the caretaker, you have thoughts and opinions and feelings. There needs to be an open dialogue.

Opiant: Moving from your personal perspective, how do you view the evolution of the opioid epidemic as a whole? How is the increase in overdoses of synthetics affecting communities?

Michelle Ginsberg: I personally haven’t been touched by fentanyl, that I’m aware of, however, I do know that fentanyl is increasing prevalent and responsible for many deaths.

During COVID, I’m now seeing tremendous changes, and not only related to fentanyl. There’s simply just more drug use. The pandemic loneliness and isolation make it much harder to stay sober.

We need to make addiction treatment resources widely available and easily accessible. I think if I entered the addiction journey now, I would still be in the dark. It’s just not talked about enough.

In addition, rehabilitation and recovery services are extremely expensive. We went through everything we had, and we were fortunate to have things to go through because most people don’t.

Also, I really, really feel that part of our son’s sober success is due to white privilege. I’m not saying that white people don’t relapse, they do all the time, but they have so much more access to resources so they naturally have better outcomes. My son was incarcerated multiple times. He is a very handsome white male who would go before judges undoubtedly accompanied by both legal representation and a parent. This simple fact goes a long way to not being locked up in prison. It’s heartbreaking.

Opiant: What policies or actions do you think states should be prioritizing when it comes to saving lives?

Michelle Ginsberg: Well, certainly being able to buy NARCAN© Nasal Spray from a drugstore without a prescription is enormous. I remember when naloxone wasn’t legal and nasal NARCAN© wasn’t invented yet. The most wonderful underground system of training existed so that parents could inject their children and share naloxone for free. Reversal agent laws being passed in every state so that everybody has access to NARCAN© Nasal Spray is enormous.

As a whole, educating people on the science behind addiction is the only thing that is going to remove stigma. I’m old enough to remember when you couldn’t say the word breast cancer. You just did not say it out loud for reasons that to this day, I don’t understand. There was a huge stigma around breast cancer that doesn’t exist anymore. People with breast cancer are easily able to find resources, connect with people and fundraise. This same process must happen with SUD.

Opiant: If somebody asked you to describe addiction scientifically to them, how would you describe it?

Michelle Ginsberg: The first thing I would communicate is what Betty Ford taught me — imagine somebody has wrapped Saran wrap around your head. You’re obviously going to do anything you can to breathe — whatever it takes to pull that Saran wrap off your head. Well, that’s what it feels like when you have SUD. You’ll do anything to breathe, anything to attain the next high.

Once people begin to understand this uncontrollable desire, then you can take them to the next step, which is education on how the brain works.

Along with science, they must understand that addiction is a progressive disease. I have multiple sclerosis, which is also a progressive disease. If I don’t take my medication to stop it, or to slow it down, it will progress to the point where I’m nonfunctional. It’s the exact same thing with addiction. I’d love to see PSAs comparing addiction to diabetes. Society wouldn’t shame someone for having diabetes, and doctors or insurers wouldn’t deny their medication. It’s problematic it’s not treated the same way as other disorders.

Opiant: Three years from now, what progress would you like to see made in the SUD space?

Michelle Ginsberg: I want everybody to understand that addiction is a disease (without stigma) so that those who need help can easily get it. SUD treatments need to be covered by insurance. I also want to see scientific research progress into the disease backed by a large amount of federal dollars. There is progress being made on this front already with Dr. Nora Volkow at NIH, but we need it to be a bigger and faster effort.

Opiant: Lastly, what would you like to see people take away from reading about your experience?

Michelle Ginsberg: I want people to never, ever, ever give up. Never. Never turn your back. The single most important thing you can give anybody is unconditional love, no less so for someone who has a disease, no less so for anybody. You must give love and do whatever you can when that person calls for help. It can be as simple as walking them to a meeting or driving them to the Salvation Army. When they say they’re ready for help, you have to be ready, too.

To protect her privacy, this interviewee appears as Michelle Ginsberg.

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