Local NAMI volunteers go the extra mile to help people manage their mental health

The Southeastern Minnesota chapter of the National Alliance on Mental Illness has a unique ability to live up to, and even surpass, its mission. 

Just ask Terry Thul, who stopped into their offices in 1996 as he began dealing with his mental health and has remained a volunteer ever since.

Or Christina Darrington, NAMI’s 2018 volunteer of the year and a newly-minted certified peer support specialist, who feels her involvement has given her life back some of the purpose mental illness tried to take.

Or Benjamin Romberg, who, after two years of going to support meetings, now gives speeches and writes about a subject he used to keep to himself.

In each of these lives, NAMI’s mission — to improve lives affected by mental illness through education, support, and advocacy — has played a pivotal role in their recovery from mental illness. That has, in turn, helped others find their way. 

In the era of Covid-19, NAMI and volunteers like Thul, Darrington, and Romberg are working harder than ever to keep its services accessible and approachable. Whether it be in the form of socially-distanced support groups in a sunny parking lot or Zoom presentations to professionals and students, the work continues. 

“Right now, we are noticing an increase with mental health issues with the pandemic and everything, so I feel myself trying to ramp up and help more people,” says Darrington, who says the people now reaching out are struggling, isolated, and in need of help.

Providing that help requires funding and visibility, though, and on September 26, the organization’s biggest annual fundraiser, NAMIWalks, will undergo a digital transformation. The usual throngs of pedestrians who participate in NAMIWalks will take to the internet instead, with a new set of tactics to raise visibility and funds. The walk’s ability to spread NAMI’s name cannot be understated. Case in point — when Romberg set out on his mental health journey two years ago, he knew of NAMI thanks to a previous employer’s participation in the annual walk.

How NAMI helps

Romberg had struggled with anxiety and depression since childhood. After starting on a medication, he looked for support groups and ended up at NAMI’s Wednesday night group.

Romberg was struck by the diversity of the group, which featured a spectrum of mental illnesses — such as depression, anxiety, bipolar disorder, schizophrenia, and suicidal ideations — being discussed by men and women from every generation and background.  

“Whether it's someone that works at Mayo Clinic or someone that's an electrician, we're all just there for the same thing,” says Romberg, who categorizes the group setting as “laid back.”

The support groups follow simple guidelines: no politics, no religion, and no dispensing of medical advice. Participants listen, give advice, and feel connected. One of the things that helped Romberg feel connected initially was the amount of men participating.

Typically, when it comes to mental health, men feel expected to “hide out, do their own hobbies, and not talk about our mental health,” says Romberg.

Terry Thul / submitted

Though societal norms may be shifting, those expectations certainly existed back in 1996, when Thul first got involved with NAMI, thirsty for information after being diagnosed with bipolar disorder. He says that, aside from himself, he didn’t know anyone with depression, anxiety, or any other mental illness. Back then, many saw mental illness as a character flaw or a condition that could be somehow out-thought or “gotten over.”

“For me, just knowing that there are other people with mental illness problems... it was a great relief,” says Thul. 

Darrington, who arrived at NAMI nearly 20 after Thul, echoes that sentiment.

“I started having mental health issues as a child and just always felt alone with it,” she says. “I went to every therapy appointment, things like that, but finding there are other people around that are having similar situations and similar struggles; I found that to be just huge.”

The lived experience of group members meant the world to Darrington. “Having other people with lived experience near with you that get it, really get it, was huge because I always felt like, ‘okay, nobody else really gets it.’”

‘Accept that your life is different’

“My primary diagnosis is bipolar [disorder]. I have generalized anxiety too, but they're tied together,” says Thul, “And every person I have run into with bipolar disorder, it's like they've got a unique disease.” 

Two people with the same illness on the same medications may find differences in their results. Thul stresses that comparisons are not helpful in such a personal matter of progress, wisdom gained from years of life. 

“You do have to just accept that your life is different and the things that somebody else might accomplish are not necessarily the things that you should strive for,” says Thul.

That’s the kind of wisdom gained from group support meetings, and it follows participants into their lives.

“I could take those moments and remember certain conversations with people about their mental health and apply it just to my life outside of that time,” says Romberg.

When the pandemic first hit, support meetings were moved to Zoom, but that only lasted for a month. People missed the contact and reason to leave the house, so the meetings have moved outside onto the NAMI parking lot. The group sits in a circle of socially-distanced folding chairs and wears masks, but the camaraderie and support remains unchanged.

“It's a little odd looking,” says Darrington, “but it works.”

Personal support

NAMI also offers support on a more individual basis, through its peer support program. Darrington is among the highest-tier of peer volunteers — a certified peer support specialist. This position required her to complete a multi-day, intensive training process, and it allows her to partner up with someone struggling with their mental health. 

The idea is to form a kind of partnership between peers. At present, Darrington has one peer, who she connected with at the beginning of the Covid lockdown. The two have only spoken over the phone so far, but he bond they’ve forged feels as concrete as anything.

For Darrington, acting as a peer support specialist represents another step on her recovery journey, which has led her to regular exercise, healthy eating habits, and a more robust support system. The further into her recovery she got, the deeper her involvement with NAMI became. 

Christina Darrington / photo by William Forsman

“I grew so much within myself that I was able to do it a little by little. And then, finally, by 2018, I was able to really blossom more and get into more things,” says Darrington, who estimates she spends a rough average of 10 hours a week at NAMI, helping with everything from the newsletter to peer support.

“When I wasn't doing so well, I kind of lost myself and lost my purpose. And lost my connection with people and just kind of shut down,” says Darrington. “It's kind of given me all that back and my sense of independence and confidence.

Sharing their experiences

Aside from NAMIWalks, the organization’s outreach efforts include a speakers’ bureau — a cadre of NAMI volunteers who speak about mental illness to community groups of all kinds. 

Romberg joined its ranks this February, and after being furloughed in mid-March, he’s done several Zoom presentations — three so far for groups of nursing students and another to Rochester Workforce Center staff. Chipping away at the stigma of mental illness in the workplace is a primary focus for him, he says.

Thul’s primary involvement with NAMI is through the speakers program these days; he’s spoken to everyone from nursing students to seventh graders. Workplace stigma is something he can relate to; Thul was laid off from his job at IBM when his illness precluded him from working full-time. 

“The laws have improved over the years. And, you know, I think with the current laws, they never would have never would have happened at all. They would have found some way to let me work work part time,” he muses.

Still, despite significant societal progress since the 1990s, stigma around mental health remains prevalent. At church, for instance, Thul he has only ever met one priest who disclosed his depression, and he suspects that most people wouldn’t be able to name a co-worker with a mental illness, despite such a large percentage of the population having one. 

Thanks to NAMI’s efforts and the ways they touch the lives of participants, however, those problems are being addressed in ways big and small, old and new.

“Prior to NAMI, I never really talked about my mental health,” says Romberg. Now, in addition to his speaking engagements, he writes about his mental health on his website, The Upstairs Battle, where he talks openly about living with depression. He talks medication, sleep habits, and even updates about a puppy.

“You don't need to take like a giant step and have it all figured out. Or, you know, the first step you take may not be the right step for you,” says Romberg.

Bryan Lund is a Rochester writer, youth mentor and Med City Beat contributor.

Cover: Ben Romberg / photo by William Forsman