Kelli Lewis is incredibly brave. She allowed a reporter into her home to share what life is like with her 11-year-old son who was diagnosed with schizophrenia. She is putting herself out there, and in the process educating so many people who have no idea what it can be like to live with someone diagnosed with serious mental illness. It’s not something that’s talked about. There’s a huge stigma around mental illness and she’s opening herself up to all kinds of judgments and opinions from people who have no idea how difficult it can be.
However, there are millions of families – yes millions – who have a loved one suffering from serious mental illness (schizophrenia, severe depression, bipolar), and they do understand the worry, fear, stress, and anxiety that comes with this. They do understand the hopelessness of trying all the things the doctor tells you to do only to find that nothing is working. They do understand feeling that doctors don’t have the answers and in fact, you’re in unknown waters and very alone.
Imagine having someone you love with all your heart, who did nothing wrong, nothing to deserve this, and they’re scared and confused with no understanding about what is happening to them, and they’re looking to you for help. You, of course, are looking to doctors for help only to find that they don’t have the answers.
People think there are real treatments for mental illness and that people get better with treatments delivered by professionals with special expertise. That’s often not the case. The number one solution seems to be giving medication based on a theory with zero scientific evidence. The theory was that mental illness was caused by a chemical imbalance but billions in funding allocated to such research have been unable to find any specific biological marker.
It’s heartbreaking but it’s also the reality for way too many families. We need more families telling their stories so people can have a better understanding of what it’s like to live with a serious mental illness. We need more families telling their stories so others can see they are not alone. We need more families telling their stories so we can see how badly the mental health industry is failing us.
I am so inspired by the bravery of Kelli Lewis. It’s clear how much she loves Ahav and she is relentless in trying to help him.
Here’s a little bit of her story but I highly recommend you read the entire story: “She was 41 then, and she and her husband moved from downtown Atlanta because they wanted the boys, 11-year-old Ahav and 9-year-old Analiel, to attend better schools. During the week, she taught drama at a private high school. On weekends, they hosted dinner parties. Ahav was the type of child who would get lost in creative projects, and when he was still little and confided to Kelli one day that there was a man in his body, Kelli interpreted it as another expression of his active imagination. But then came tantrums, followed by his throwing and breaking things, and by the time Ahav was 8, doctors were telling Kelli that while it was rare in children, all the signs pointed toward schizophrenia.
And so Kelli put things on hold. She began working from home as a travel agent. She stopped inviting friends over because of Ahav’s meltdowns. His worsening illness put more and more strain on Kelli’s marriage, and in 2019, after she and her husband divorced, she spent down her savings and signed up for public assistance. A family of three now, they were managing, but then, in the spring, Ahav’s school closed because of the pandemic, and at the same time, the medication he’d been on seemed to stop working. By the end of the summer, he was too scared to stay in his own room and was waking up next to Kelli most mornings as she herself awoke in a house where the oven door had been ripped off its hinges, the refrigerator was pockmarked with dents the size of a child’s fist, the wall near the stairs had a few slash marks in it from the time Ahav had found the one paring knife Kelli kept hidden in her bedroom, and there were new psychiatric prescriptions on the kitchen table, five in all.”
A day in the life:
“He was gritting his teeth and pulling at his long twists of hair. “Are you hearing the voices? Tell me,” Kelli said, but instead of answering, he walked down the hallway and toward the front door, outside of which was a peaceful road in suburban Atlanta, which led to a six-lane highway, where several times this year, as his illness deepened, he had tried to throw himself in front of a moving car.
“Ahav!” she shouted, still holding Analiel and looking around for her phone. “Ahav!” she shouted again, but this time the response was the sound of the front door closing. Now she shifted Analiel off her lap, ready to tell the 911 dispatcher the words she had learned to use during past calls about a Black young man who might look out of control: “My 11-year-old son has a psychiatric diagnosis and he’s in crisis. He’s heavily combative, but he does not have any weapons.”
Kelli has tried so many things to get help for Ahav. There’s always the hope that maybe this time will be the one, and then the letdown and helpless feeling of what can I do to save my son?
- There was also a pile of medical forms on the table from Ahav’s emergency room visits this year, the first of which had been in April, after Ahav told Kelli that the man in his body was ordering him to attack his family or hurt himself. The hospital had stabilized him and then sent him home because he was no longer in crisis and Medicaid wouldn’t pay for more days.
- The second time, he had tried to jump out of a moving car. Again, he was sent home once he was stabilized.
- The third time, he had pushed Kelli over and started whipping himself with a belt. He told her to stay away or he would jump out the window. “I’ll be dead when they get here,” he said as Kelli recorded him on her phone, hoping to have something to convince the doctors that he needed more help.
- The fourth time, after the doctors had written that Ahav was being admitted for “homicidal ideation,” the hospital filed a complaint against Kelli with child protective services alleging negligence, which led to a mandatory investigation, a closed case, and a conclusion that Kelli was doing everything she could to help her son.
- The fifth time, Kelli, for a moment, thought Ahav had gotten a break. A new team of doctors recommended that he be hospitalized for several months, not just a few days, so he could meet face-to-face with therapists and also get on the right combination of medications. But then came word there would need to be a new psychiatric evaluation before Medicaid would pay for the longer stay, and the only doctor available to do one in person wanted an upfront fee of $2,500.
- The sixth time was for “self-injury” — another stabilization, another release —
- and after the seventh time, when Kelli, who was just a little taller than Ahav now, had to restrain him from throwing himself out of her bedroom window, she couldn’t bear the thought of an eighth time, so she suggested to Ahav that they work together to find another type of solution.
Every so often, Kelli allowed herself to think of the things she wanted: To live in a house undamaged by fists. To breathe in a house undamaged by mold. To be able to close her bedroom door and sleep through the night alone. To look at photos of her friends’ kids at summer camp without feeling sadness. To say yes to the men who asked if she could go out on a date sometime. To go back to teaching and earning a living. It was a list that, if she allowed it to, would go on and on, and it wouldn’t include anything about hospitals and police. – Read the full story by Hannah Dreier
Thank you, Kelli, for sharing your story, for your bravery, for your fierce love of your son. We’ll be keeping you and your family in our thoughts with the hope that you find something that helps Ahav.
I’m including the link to Resources for Serious Mental Illness. It’s a living resource that I’ll continuously add to as people send suggestions for what worked for them. Please write in the comments below or email me if you have something to add to this resource.
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