Active Minds: Alison Malmon

The Five-O-One is joined by Active Minds Founder and Executive Director, Alison Malmon to discuss mental health on college campuses, how to reduce the stigma associated with mental illness, and how we can support those around us who may be suffering in silence. 

To learn more about the organization visit www.activeminds.org. 

Talia: So the story of Active Minds begins with your older brother Brian, can you tell us a little bit about him?

Alison: Yeah, I'd love to. So Brian, and I grew up outside of Washington, DC, in Montgomery County, Maryland. Brian's four years older than me, and so as we were growing up and going through K-12, I was always following in his footsteps going from school to school. And in high school, Brian was kind of that star high school student that we all try to be, he was the president of the debate team, he was in multiple AP classes by his senior year… announcer for our school's football games. Brian got into his top choice college, which was Columbia University. So he went off to Columbia. As I was starting my freshman year of high school. By his senior year, Brian had become president of the acapella group, he was the sports editor of The Daily Spectator, he had gotten a star role in the varsity show, singing and dancing at Columbia --  he had it all --  he was at all he was a dean list student. But he went to the school counseling services in November of his senior year at Columbia, and he showed signs of anxiety and depression…he was stressed. It was a Friday that he had his appointment and the therapist recommended that he come home for a weekend to relax. So he came home and ended up staying for quite a while --  my mom is a clinical social worker, we grew up surrounded by mental health, and she really wanted to get him to talk to somebody. And so he started seeing a clinician, and ended up taking a leave of absence from Columbia. After a number of different attempts at finding the right combination of doctors and medications and therapies and all of it and we did it all, we finally discovered that Brian's diagnosis was something called schizoaffective disorder, the combination of depression and schizophrenia; he was experiencing really low lows of depression and was not able to get out of bed for days at a time and also hearing the voices and experiencing the psychosis. He had been experiencing this schizoaffective disorder since February of his freshman year.

Talia: So he was really hiding it from everyone.

Alison: He was just hiding it-- he was a senior at the time, he was president of all these groups, he was a Dean's List student, and yet he was able to hide and mask it from everyone, including us, his family, and also his teachers. And it wasn't until Brian took this leave, and we started to really uncover and unpack everything that he had been going through that we discovered both the severity of what he was going through and how long he had been dealing with this on his own. March of my freshman year in college, which was about a year after Brian had taken his leave of absence, four years after he started experiencing his mental health struggle, Brian ended up taking his life. It was March 24th of my freshman year. I was 18 when he died, and he was he was 22. 

Talia: I can't even imagine how hard that was.

Alison: I can't describe it either. Everybody who has been through this loss, we have a kinship, but there's also no way to compare our experiences with anybody else's. And I know that this hits everybody so differently. For me, it was just me and Brian. He's my only sibling, our parents were divorced --  they had been divorced long before his illness. So I was left as not only an 18-year-old college freshman, but an 18-year-old college freshman who's an only child of divorced parents. My identity, up until that point had always been Alison of Brian and Alison – it was always the two of us bouncing back and forth between our parents houses, you know, doing what we could in school, and now it was just me. As I was experiencing, you know, every emotion possible and every emotion that suicide loss survivors feel, the one that became the most salient for me was fear. And it was a fear because I started thinking about all that time that Brian had been at school, struggling so hard with his mental health, but not feeling comfortable talking about it. How is it that he could go through so much of his life, feeling so alone and not feel comfortable getting the help that he needed? Why would that be different for anybody else? Right? There's nobody talking about this stuff right now --  that that was the impetus for me to start Active Minds, a student group on my campus that I then launched into a nonprofit after I graduated just a few years later.

Talia: So you founded Active Minds while you were a student at Penn. But were people even talking about mental health at the time?

Alison: 20 years ago, there was nothing on my campus. There were conversations and student groups around alcohol use and abuse, that was kind of the big campaign of the 90s, limiting your use of alcohol. And then there were some resources, whether they be helplines, or very specific groups for very specific struggles that students were facing, but what I didn't find was an overarching mental health education and awareness group. And as I started thinking about Brian's experiences and who he was, and who I was, what I realized was that what was needed at school was a group of students talking about mental health openly, not necessarily just hosting psychology lectures in the Psychology Hall, or hosting support groups in the Counseling Center, because Brian wouldn't have gone to either one of those, but if there was a group that had like a movie screening, or a big public display, or something that had a mental health theme, he would have been attracted to it and he would have heard the message. And that's the conversation that needs to start --  to have the whole campus talking about mental health every day, and not just when crisis occurs; to reach people who either don't know that they're struggling, or think that they're the only ones. Those were messages that I heard from Brian, before he died, was that he swore he was the only one on his campus who was struggling, because everybody else was, you know, was seemingly having the time of their lives. But we know there's so much of that hiding that's going on. One in four Americans has a mental health struggle at any given time, that means, clearly, he was not the only one on this campus. And yet, nobody was opening up about those stories. And so when I started Active Minds, I searched every mental health organization I could find, and there was nothing, there was nothing targeting young adults around mental health, and especially nothing that was mobilizing and empowering young adults. And that was the piece that was key to me. I saw from the moment that Brian died how differently my friends and his friends responded, versus how my parents friends, and their generation responded.

Talia: Right. Because there's this generational shift surrounding mental health. It just wasn't something that our parent’s generation talked about openly.

Alison: Exactly. I saw that my generation wanted to talk about this, we wanted to do something about it, but nobody had ever given us the words or the platform to use. And so that was my motivation in wanting to start not only a mental health group on campus, but a mental health group that was led by and for students, so that people like Brian would be more willing to listen to those messages. And we had folks who were willing to share their stories to be able to help create this culture of understanding on campus.

 Talia: So you take it upon yourself to actually start this conversation on campus. How did you go about that?

 Alison: I started in the summer before my junior year. I attended a couple of national mental health conferences to see if I could find what I wasn't able to find online, in terms of other programs that were available. And I attended those conferences, and I was the youngest person in the room by decades when I went to these sessions, which just reinforced to me that there was a need to really have this young adult mental health organization focused on young adults. Our very first meeting was on September 24th, a year and a half anniversary of Brian's death, three people showed up --  It was myself, a roommate of mine, and one person who I didn't know, who had actually seen one of our flyers and came to the meeting. And that was really rejuvenating, because it meant that it wasn't just me, and my friends who cared enough about this to put their time into it. And we grew from there, by the end of my senior year, two academic years later, we had 40 people regularly coming to our meetings. I credit that to the cause -- somebody had to start something for the world to coalesce around it. And so if you plan the right programs, you make this a conversation that everybody is willing to have. And so folks flocked to the group and it became a much more robust entity than it was when I started the first chapter at Penn.

Talia: So the organization has grown a lot since those early days at Penn. Can you tell us a little bit about what Active Minds looks like today?

Alison: In 2020, we have grown to a national office. We have 20 staff, we are more than 800 schools across the US in all 50 states, and many of our schools have chapters that look exactly like that chapter that I had started at Penn, led by students working to promote mental health through speakers, and large-scale events and displays and trainings, working to change the culture around mental health. And we actually found through a study with the RAND Corporation in 2018, that the presence of Active Minds at a school decreases stigma and improves attitudes, and increases help seeking behaviors --  so all of the goals of Active Minds from the beginning, wanting to start a conversation so that a culture was changed so that students like Brian knew that they weren't alone and felt comfortable reaching out for help for themselves or friends, we've actually found that Active Minds has that impact. And so we have, in addition to our chapters, we have a national speaker's bureau, a suicide prevention exhibit, a send silence packing training about how to talk to people who you're worried might be in need of support... We're at these 800 schools, and we're growing and our goal is to get to 1,000 campuses by 2022. We feel really confident we're going to get there, and we're not going to stop there, every young adult deserves to have this level of open conversation about mental health in their lives. And we see that this does not stop at the campus gate, this is not just about college, this is not just about high school, this is about a generation who wants to talk about mental health differently than their parents, and grandparents’ generations did. And so as Active Minds students go through high school, and they go through college, and then they move on to whatever's next in their life, they're bringing Active Minds with them. So we're also in half a dozen workplaces right now, and finding ourselves in communities. And we have folks who are my age who have young kids now and are bringing this into their parenting style and are then you know, the next set of principles and practitioners and policymakers who are all bringing mental health into the everyday conversation in a way that we haven't seen before. And it's entirely because of the Active Minds generation.

Talia: We're fortunate to have Kelsey, join us today. She's a senior at the University of Wisconsin Whitewater, and president of her University's Active Minds chapter. Kelsey, can you share a bit about your connection to Active Minds?

Kelsey: Yeah, I had been struggling with my mental health for a long time, I had been dealing with depression and anxiety and suicidal ideation. During my freshman year of college, I got a new diagnosis of borderline personality disorder, which at the time was really, really scary – it’s an illness that's incredibly stigmatized. Everything I saw on the internet was just negative. And I didn't really know what to do with that feeling. So Active Minds helped me just be open about what I was experiencing, and it helped me the positives within my diagnosis and within myself.

Talia: Is there any memory from Active Minds programming that really stands out to you?

Kelsey: Oh, for sure, yeah. We did this really cool thing my freshman year, and I've continued it ever since called the mental health monologues. It's performance based, like conversation about mental health, where college students can perform la poem, a song, a skit, like really any type of performance art and share their story with mental health and with mental illness. That was the first time I'd really been open about my diagnosis. And the support was overwhelming and it made me feel like it was okay to talk about it.

Talia: Wait, do you still have a copy of your performance?

Kelsey: Probably somewhere in my Google Drive… I think so. It's loading. So just one second. I did find it though…

 It's called Tug of War.

I remember my dad noticing my scars. I had a concerned friend who had tried to help. But instead of receiving that help, I was grounded and got my phone taken away. I thought to the world, don't you see, self-harm isn’t a phase, tt's a sign of someone's pain. I was sick of the lies, the games, and the yelling surrounding me. Burying me. The demons crept in slowly and also so fast without a breath. I was screaming and yet no one could hear me. What's wrong with me? I have flashbacks. The darkness only grew inside me. I remember sitting in that waiting room after my sixth suicide attempt, this game of tug of war between my depression and anxiety only became more difficult. There are days when I felt glued to my bed, any food but my mouth I felt I should be punished for. Some days my anxiety would be so strong that I would hide away from any social interaction. The psychiatrists asked me question after question in the bright white room. My palms continued to sweat. The world was spinning around me and I did not care one bit. She looked up at me and said, you have borderline personality disorder. My brain played the tug of war between the words personality and disorder. I felt so alone and so ashamed, the depression could not leave me. I felt so sick every single day. I hated who I was. The second I reached for someone's hand was the best decision I ever made. I coped and learned. But the thing with tug of war is that you can't stay up forever. Recovery is always two steps forward and one step back, the evil game of tug of war making me spin and fall and walk the tightrope again. I had fallen  -- eight suicide attempts, there was no hope. The fourth hospitalization, I was worried it was going to be a waste of time. I felt the beam of light find me again. I took the time to learn more about myself, my likes, dislikes and my dreams. I had finally found the correct medication and therapy. I was in the middle; I was no longer jumping from highs and lows. I can't change the past nor the future. I am here now. I am present. I am strong, brave and capable in this game of tug of war. I found my support system, it grows and changes but it's there. I asked them to pull on my side in this game of tug of war. And I fell in the mud but much less than I used to. But it's okay not to be okay. I can do this. Even on my hardest days, recovery is ongoing.

Talia: Kelsey, that was beautiful. How did you feel reading that again?

Kelsey: It’s scary for sure. Because I’m at an even better place than I was then. So it's, yeah, it fills my heart to know that I went from like that and all those thoughts to where I am today.

Talia: Alison, back to you. I want to talk briefly about the pandemic. I know its impacted people's mental health, particularly college students. What does Active Minds do to support those students, some of whom are no longer on campus and are taking their courses remotely.

Alison: One of the things that we saw really early on in March was that we had both an opportunity and a responsibility to support young adult’s mental health as a whole during the pandemic. We have grown since 2003 to be the largest and the leading mental health organization for young adults. Our focus has gone in many different parallels  -- one has been live free webinars that we've held about how to talk to parents in quarantine, how to deal with the grief and the loss of losing your senior year or your graduation or your semester abroad, to doing some surveys of students really wanting to hear from students and young adults about their mental health during the pandemic. And again, not getting reported data from parents about their kids, but actually hearing it from young adults and students themselves. We then took this moment as an opportunity to start a texting service. This is not a crisis texting service, but a texting service for students just to remind them what the resources are when they need it. So every couple of weeks, if you've signed up for an Active Minds texts, you get a heads up from us either about programs that you can participate in, or a reminder of the text line number, the Suicide Prevention Lifeline number – we fill your phone box with information about mental health and positive mental health messages. We also opened up a slack network that used to be limited just to the president of Active Minds chapters and is now open to students at large, just to talk about what the pandemic has done and meant for them. We are really meeting students where they are right now and giving them the talking points they need for the moment to get through day by day so that we can get to the other side and give people a reason to continue to have this this level of hope.

Talia: Alison reflecting on where we are today, and where we were 20 years ago, in terms of conversation surrounding mental health, is there any last thought you want to leave with our listeners?

Alison: I never could have dreamed 20 years ago when Brian died, or you know 17 years ago when I started the nonprofit that we would get to where we are in mental health. I always hoped it  -- I never could understand why there was no conversation about mental health out there and why Brian truly thought he was the only one struggling, and that caused him to ultimately lose his life. What makes me so hopeful is how extraordinary the young adults are who have taken this on as their cause -- the next generation who sees mental health as a social justice issue, and are tired of being silent about it, and are spending every waking moment changing policies at their schools, talking to their parents about things their parents won't even talk to them about, and creating cultures where people like Brian don't think that they're alone. You know, my goal is that mental health is as openly discussed every day, as all other health issues. We're not trying to sensationalize anything. We're not trying to overcome anything else. We just want equity. I just want mental health to be an everyday conversation. And I feel really hopeful and motivated by the fact that I really think it's getting there, and it's getting there because of the folks who are coming up in the Active Minds generation.