AGAINST THE ODDS Enduring Hope

from February 17, 2023

Taking Stage

By Amanda Dahl

Parents often experience a time in their child’s life when they notice massive change in their behavior, attitude or interests. This shift can occur for a variety of reasons and in different periods of life, such as when a young child develops speech skills, when they transition into adulthood or when they begin exploring romantic relationships. When your child’s personality dramatically changes, it can be difficult to differentiate between common and less common development.

When St. Louis mother Sally Desu started researching the drastic personality changes she was noticing in her son, she knew other families must be experiencing similar feelings of confusion and uncertainty. That inspired her to start the Gleam of Hope Community, a support group aimed at providing mental health resources to families – especially to minorities.

“It’s not that [parents] want to give up; they’re so frustrated, and they don’t know what to do,” Desu says. “They’re just like, ‘Forget this; I don’t know what to do anymore!’”

That’s how Desu felt when her oldest son graduated from high school and moved out of state for college. “It was like night and day,” she says. “Over the phone, he was being really rude and disrespectful – and I had never experienced that.”

After expulsion from college due to run-ins with law enforcement, Josh had become almost unrecognizable. It wasn’t until several hospital stays later, at Mercy in St. Louis, that Josh received a diagnosis of schizoaffective disorder: bipolar type.

Getting her son the help he needed proved to be challenging, and Desu recently shared the experience in a memoir titled “A Gleam of Hope.”

For Desu’s family, the biggest improvement in Josh’s care occurred when they connected with nonprofit organizations that understood their situation.

“You’re going to need a village,” she says. “So many people are living with [mental illness], and they just ignore it or think it’s their fault. They don’t want to deal with it. It’s a stigma … especially in Black communities.”

According to the National Alliance on Mental Illness, one in 20 U.S. adults experiences a serious mental illness. Desu’s experience motivated her to launch a support group aimed at assisting minority communities. She rented a community center for monthly meetups, where families could learn about available resources. A Maplewood police officer attended one such meeting to share advice on what to say during an emergency call that could offer clarity of the full situation and help keep everyone involved safe.

“There’s not a lot of people of color that embrace the idea of opening up, even with the church [communities],” Desu says. “But there’s also practicing beyond praying. There are practical things you have to do. God made doctors. psychiatrists and medication as well.”

Desu now serves on the board of the Behavioral Health Network, which aims to improve behavioral health planning and coordination through a network of community leaders. Her son, Josh, now has an apartment and receives financial support and regular medical care. The Gleam of Hope Community is on a current hiatus, but Desu aims to resume meetings in the spring.

“I just knew I’m not the only one going through this,” Desu says. “I’m telling my story to embolden others.”

Desu’s memoir, “A Gleam of Hope,” is available at the EyeSeeMe bookstore in University City and on Amazon. ln

Gleam of Hope Community, St. Louis, gleamofhopecommunity.com

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