A Sister's Grief and Charity

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A Sister's Grief and Charity

By Zachary Siegel 11/07/14

When my friend Alex was found dead, his sister Chelsea started an organization that turned the tragedy into something far more than a sad loss.

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In 2008, I flew home from college for winter break. That very next evening my friend Alex, whom I had known since kindergarten, was found dead, cold and blue in his room. He was only 20. 

We don’t often think of friendships in terms of finitude. In fact, we think in terms just the opposite. We cast-off into the horizon of time, where we envision ourselves living in the future, perhaps in a city somewhere, with memories and friends discussing the moments being lived out right now.

A lot of people don’t see drugs or drug addiction fitting into their world, so it is part of my job to get the attention of people who are not impacted.

The world is absurd. And the fact is, life is indifferent to your plans and expectations. When we are faced with moments—often senseless tragedies—like the death of a dear friend who had too much heroin and benzodiazepine in his bloodstream, is when life calls upon us to respond to its indifference. 

Maybe I responded with weakness. I kept living my life as if that dreary December day in Chicago’s cozy, affluent suburbs never happened. For a long time, I even tried my best to forget. But Alex had a sister, Chelsea. And since her brother's death in 2008, she has responded to life with vigor. She started an organization that turned Alex’s tragedy into something far more than a sad loss. Chelsea was years older than Alex and I, so the two of us weren’t really acquainted until recent years. Below is an interview discussing Chelsea's present-day life. We discuss her activism, overdose prevention, her thoughts on families and addiction, and how she found meaning in misfortune. 

Tell me about Live4Lali, the organization you co-founded and are now executive director of? 

We’re a labor of love, developed by my family and I after my brother Alex died from an opiod/benzodiazepine overdose in 2008. Almost six years ago, when we started this, we didn’t know what we wanted it to be, but we knew we wanted it to be awareness-focused. There was so much we didn’t know. To get off a plane and find out that your brother is dead from a disease you didn’t know he had, or had the ability to get, is traumatizing. Over time, Live4Lali became something more than having glorified picnics in Alex’s memory every summer. We felt as though it was more important to understand what is happening in the community, and when we say "community" we mean the Chicagoland community, but we also mean nationally, to understand the ins and outs of the systems that are working together.

I eventually became researcher/educator/preventionist/consoler/salesperson/explorer of this entire epidemic, which is, I guess, what we’re going to call it here in Chicago. All of that led to us building our school and community education programs for youth and parents, and hosting overdose prevention trainings. In addition to all of the advocacy stuff, we fight for people who are no longer here, or for those who don’t have the voice to do so because they have been ostracized and stigmatized. 

Fair to say you have committed your life to this cause? 

Yep. I quit my marketing job. This work is all I do now. But the marketing background has really helped me with this cause. It’s understanding human behavior and human nature, that is what we’re after here. A lot of people don’t see drugs or drug addiction fitting into their world, so it is part of my job to get the attention of people who are not impacted, or who don’t think it will ever be part of their lives. 

You once wrote “Tragedy shatters people, but over time, it became motivating for me to fight against the ignorance our country has towards drug addiction.” So where does that motivation come from? The spark, I guess, that propelled you to commit your life to this work.  

I can never see my brother again. I don’t know if I’ll ever see him again, in this life or any other life, and that is very, very painful. So, I feel like I got gipped, and i don’t want anybody, ever, to have to deal with that. If I can help just one family or one person to see that things can be very, very different with just basic education about drugs, about the brain, about mental illness, then I feel like my work for that day is complete. I have done my work. 

But the main motivation always comes back to Alex. Oddly enough, I feel like Alex would find all of this, the work that I do, way too dramatic and scary. He was uncomfortable being serious, especially in front of a lot people. I can sometimes hear him, I think, asking, “Do you really need to say that? Don’t you think you’re being a bit dramatic?” But, I am dramatic and I do say things that might be over the top. But it is not just about Alex anymore, even though for me it is always because of him. It is really for all of the people who have been left behind. It has really grown and gotten much bigger. I don’t think that Alex was any more special than you or the next person I talk to. But it’s really harrowing, to meet other people who have been through this, and know that their lives are as deeply shattered as yours. 

Have a lot of people you team up with been impacted, either by having lost a loved one to accidental overdose or friends who have lost someone this way? What it is like being a resource for these people given the nature of it being so tragic? 

Most of the people who reach out are directly impacted, or friends who find the cause particularly important and have somehow connected with it, simply because it is a human relevancy. I think that in a way people have found a haven in this work. They have somewhere they feel like they can contribute to the eventual end of this, to the enlightenment of our community and our culture and I think that gives them a sense of accomplishment, and most of all the feeling that their loved one did not die in vain. Not everybody who is impacted does this work, but grief works in very interesting ways and looks different for everyone. 

Being part of a community, and more importantly, giving back to that community, are widespread principles within the recovery culture. It seems that no matter what ideology one subscribes to in terms of treating addiction or even maintaining a healthy life in general, community participation is essential. Can you speak to how community engagement, through your work in the organization, has changed the way you relate to yourself or  the world around you? 

I think it humbles you. No matter what you’ve been through, community efforts, whether to support you, or in a support-group setting to actually make change, whatever that is, at the end of the day, you just realize that it is not just about you. With what we know about addiction and the family disease model, we recognize that it is a selfish disease. But that has nothing to do with one’s intention, it’s in the behaviors and messages of the person suffering. But when you are put in a situation where you have to realize that this person has been through something similar to what you have been through, they’re no different than you, they may be in recovery themselves, they’re trying, they’re here. I think it brings a united effect, we’re all in this together, might sound cheesy, but that is what it is. If we don’t start to unite more, we will not be able to attack this at the level it deserves. 

I believe that the recovery environment itself is incredibly beneficial— of course, I also see some issues with it. There is a lot of discrimination within the recovery community, as far as like what route is better— medically-assisted treatment or abstinence only treatment? That is a huge one that I know we’re having issues with right now. But the fact that we can sit in a room and talk about those kinds of issues is great, and at the end of the day, as a community, we have determined that we are all suffering, maybe in a different way, and it doesn’t matter how you’re suffering from it, but that the person sitting across from you gets it, or is trying to get it. 

In that debate, between medically-assisted vs. abstinence only recovery, which side are you on? 

I am for whatever works for anyone individually, that side, if that’s a side. As I said, we cannot generalize this, just like we cannot generalize cancer, HIV/AIDS, or multiple sclerosis. The symptoms are there, but the results vary for each person.

For instance, what opioid maintenance or anti-craving medication works for Joe Shmoe down the street may not work for you. Just like how group therapy works better for some and one-on-one therapy better for others. It’s the same thing with anti-depressants, sometimes you have to try different brands to figure out what works with your chemistry. At the end of the day, drugs like those are out there to help you. I do understand the criticism and that the goal is not to be dependent on substances, but the world is imperfect, and it’s an imperfect disease, and it’s wrong for people to say that it is wrong to go that [medically-assisted] route. I guess, I’m in the middle.

The middle is a good place to be, I think. I know you take more of a harm reduction approach and do a lot of Naloxone trainings. When you train people actively using, what do you tell them? 

If you are going to use, have naloxone and use with someone else so they can save you, because you can’t save yourself. Using alone is a recipe for disaster.

Not everyone is on board with harm reduction, what do you say to back yourself up? 

Really? They’re not? I understand the mentality for being against it. If you have been through hell and back trying to get clean, especially if you have taken an abstinence-based approach, and most treatment centers are 12-step based, you’re more likely to receive the message that there is no safe way to do heroin. But my standpoint stems from science, the data and research. And the number one question I get asked is, "Chelsea, don’t you think this is giving people an excuse to use?" If we know addiction is a brain disease with a high propensity for relapse, then it's fair to say that continual use is likely. But honestly, I have to say, "Would they be better off dead? Is that what you are suggesting?" I do not believe that death is the answer for people with a brain disease. I do not believe that there is a hopeless person addicted to drugs. I hope that more people will come around to looking at it like this. 

If we are going to provide people with overdose prevention, we also have, to an extent, practice what we preach and refer people to treatment. If I am training someone who is a user, the training shouldn’t end with giving you the naloxone kit, saying bye and good luck. It should end with asking the question: "Have I been able to help you with everything that I possibly can at this moment in your life?" If I have the tools to do so, I may as well use them.

I try to at least plant the seed, or at least have a conversation about a referral to treatment, tell them what their options are. There is a way to fuse the two camps, the harm reduction and treatment approach. The latter, I think, gets missed during trainings. But there has to be a way for us to unify the idea that it doesn’t have to end with harm reduction and that treatment can be on the table. We want to cover all the bases and meet people where they’re at. I want people to live, to not only be alive, but I want them to actually live their lives. 

The research does show that communities that have successful naloxone access have seen huge decreases in fatal overdoses. It’s science in that naloxone is solely meant to do one thing - reverse respiratory suppression AKA the overdose. And we know that it works because that's what it is medically made to do. That is why we continue to push for it. Because at the end of the day, overdose is reversible and we don't want people to die from it. 

Besides drug users, who comes to you for training? 

Everybody comes in for training! Especially, loved ones. Family members of drug users, and drug users themselves, are the trainings I get the most out of. It’s those people who are on the direct line. I know that those are the individuals who need training the most. They have the opportunity to literally save a life. When I train medical professionals and law enforcement, I love that, too. Our endeavor into police trainings has been rewarding. People in law enforcement are saying, “I know I’m going to get to this overdose scene quicker than my friends at the fire department, or the EMTs, so I’m just going to take care of it.” They don’t want to watch people die. It is the role of law enforcement officers to protect and this is a simple and quick way to do that—and they get it! People from all walks of life and varying demographics want to be trained and it seems like more and more people know someone who has been impacted. 

In other parts of the world addiction is treated as a health issue where drug addicts are not criminalized, how do we get to that place? 

In Portugal, it’s a health issue. Same thing in Costa Rica. They treat people suffering from addiction as sick people and offer them help. We don’t do that here very well and the system is not set up for that model. How much easier would it be for people to openly talk about addiction in an environment where you’re accepted? Like to say, “Oh, I’m in recovery,” as if it is a normal part of conversation. People would feel way less ashamed. They’d be empowered. 

I rarely talk about it openly, especially professionally or with people I don’t know well. 

Well, you’re you. Let me ask you something, Why don’t you talk about it?

I think that I’m wary about getting the alcoholic or addict identity. I don’t want to be that or associate with all the presumptions that are attached to that identity. I just want to live my life. 

I think that’s the message. When you no longer become a person and you become defined by your disease, that is when we have this problem of shame and of stigma, by not treating this as a health issue. I hope people can start to recognize that this is not a "one-size fits all" thing and that not everyone who does drugs needs 30 days of inpatient treatment.

But again, it comes back to stigma, the model that I hate: drugs are bad so people who use drugs are bad, which makes them deserve a fate by which they do not get care for their disease, or not their disease, their "lifestyle," which I don’t like, that word: lifestyle. 

In September you were in Washington D.C., what for?

The FED UP rally was happening in Washington. We asked for a federal response to the opioid epidemic. There was a reception and a rally at the White House. The rally is meant to ask for all of the things that we need: regulations on prescription pain pills, funding for education and research programs, naloxone, with a national naloxone act, and Good Samaritan Overdose Laws. A critical issue that I’m really passionate about is promoting a more responsible prescription monitoring program which offers opioid dependent individuals access to appropriate care and diverts them from turning to heroin. The link from pills to heroin is causing an increase in overdoses. I was honored to speak to the crowd.

Hope so, too. What is your philosophy of life? For everyday living? 

Nothing is worth doing if it doesn’t make you happy. Go big or go home — I don’t believe in doing anything half-assed, if you’re going to do something, go all the way.

What else do you want to say? 

I think I just want people to know how important it is to advocate and come out for this issue. The overall message is that it will continue to get worse if our numbers don’t get stronger and if there isn't a bigger push. No matter what we do or how we slice it, data tells us that people will continue to die from overdose, which may be unavoidable, but we need small wins, and maybe 25 years from now we can put a program in place that acknowledges susceptibility to drug use. 

It will not happen without general public awareness and knowledge. I’d also really like to see more evidence-based and empirical approaches to education. Lastly, though, I don’t think this is a lost cause. I just think people need to be more realistic on turnover times, that significant shifts will take a number of years, but the lead ups to that happen with small wins.

I just think people need to be more realistic on turnover times, that things won’t change for a number of years, but will change in baby steps. In the meantime, we can work on de-stigmatization through re-education. We need to be more culturally competent, as well.  

Would you say that you have created meaning for your life, out of Alex’s death? That all the young men and women who have died from accidental overdose wasn’t for nothing? 

I have definitely made a meaning for my life. I cannot speak for my brother and I cannot speak for anybody else. But I hope that these people who have died will not be looked at as just examples, but as people who were real, had real lives and real families, emotions, all that we know exists in us. I want people to know that they were no different. That’s what I want people to remember about Alex. And I think they do. I don’t think people believe his death was intentional or that he wanted to die. I think he just didn’t quite figure out how to live, but I can’t speak for him. 

Zachary Siegel is a regular contributor to The Fix. He last wrote about college sober and how AA works.

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