Sheryl Johnson is a lawyer from Jacksonville, Florida. She, along with a dragonfly or two, run “Hearts4Minds” in honor of her oldest son Alex, who died after years of battling mental illness. This is her God Shot.

When Alex was around 13, he began struggling in school despite being extraordinarily bright. He was diagnosed with depression and anxiety and after some careful consideration, we chose to have him home-schooled. That curriculum, along with plenty of extracurricular activities, like swimming and motocross, seemed to work nicely for him. He appeared genuinely happy. He graduated high school on a high note and was off to attend the University of Georgia. His first two years there were amazing. He made lots of friends and thrived academically. He shared an apartment with his buddies and fully embraced college life. Then in his junior year, things began to shift. His grades began falling, he started dropping classes and most significantly, his personality began to change.

In the second semester of his junior year he asked us to come and get him. We found Alex in the throes of a mental health crisis, depressed and irrational. He temporarily withdrew from school and we worked on getting him stable. His return to college the following year was mixed. He completed some of his classes, but dropped others as he grappled with his mental health. Once home for the summer, Alex had a seizure, changing his life forever.

He had epilepsy and until we knew the severity of it, and what his level of care would be, he couldn’t drive or be left alone. He moved back home, and for a 22-year old that can feel like a death sentence. We struggled trying to figure out how to treat his physical disease, while not allowing his mental health disease to take a back seat. Though he learned how to manage his epilepsy, his depression and anxiety were off the charts. He wasn’t eating or sleeping properly and he had become painfully thin.

That spring, Alex was admitted to a program that utilized medical marijuana as a way to help wean him off the narcotics prescribed to control his epilepsy. The side effects of these medications can be severe and they tend to be magnified in people who suffer from mental illness. He desperately wanted his old life back, but his frustrations often got the best of him. He would call himself a loser and blame himself for not having finished school. The demons of shame were an everyday battle. He never wanted anyone to know what he was facing, which only added to his isolation. Our constant reassurance that outside merits, like degrees or jobs, did not define him, held little weight. He saw how people looked at him. The stigma of mental instability loomed large on our boy.

In time, he started to steadily improve and we began feeling hopeful. He was regularly drug tested and other than the medical marijuana, all of his tests were clean. He had his own apartment and was working hard to return to the life he left behind. At the end of that summer, my husband and I took our daughter to start her freshman year at the University of Alabama. When I hadn’t heard from Alex by the third day of our trip, I became frantic and asked my sister in law to check on him. Life, as we knew it, ended that day when she found his body. My first born, the child that made me a mother, was gone.

The autopsy determined that he had overdosed on fentanyl. There wasn’t a note. He had his laundry going in the washer, there was food in his fridge and he even had a cat that he loved. In my grief, I felt this overwhelming need to know that it was an accident, and that he hadn’t chosen to take his own beautiful life. But with time, I’ve come to understand that none of that matters. The end result would have been the same and we were always powerless to change the outcome.

Shortly after he died, we started going through old pictures. Alex was our little bug man. Ever since he could walk, he was in tune with nature and its critters. We found so many photos of him with butterflies, grasshoppers, worms, you name it, he loved them all. But, it was the picture of him with the dragonfly on his nose that spoke to our hearts. It captured his true essence. His eyes, his smirk, his sweetness shone through, and as a family, we used that picture as our anchor to remember him.

Ten days after we buried Alex, a swarm of dragonflies appeared in our backyard. This had never happened before or since. It was a one time beautiful and welcome visit. Our daughter had returned to school during this time and one night breathlessly called to tell me that a dragonfly followed her to class, three days in a row. I’m a lawyer by training. I am a linear, analytical thinker whose loss made her raw and emotional. Was I trying to see a sign from my son? Were the near constant dragonfly sightings just a coincidence? Too drained to question anything, I let it go.

On the one year anniversary of Alex’s death, I visited his gravesite. I took out my journal and wrote down some questions. Maybe he and I needed to change the face of mental illness? As a society, it didn’t serve us to believe that the mentally ill were all criminals that committed horrendous crimes. The mugshots plastered all over the news were by far the exception to the disease. Maybe we needed to share our story to break down the stigma? Alex was a private person and kept his demons inward for fear of being judged. How I wished there was a way I could have his blessing to speak of our journey publicly. And just as I sat there wishing, a dragonfly landed on the hydrangea flower on his grave. It sat there for 35 minutes, an unusual feat for an elusive, flitting creature. It was my answer. My son was telling me to stop thinking and start doing, to speak freely and keep on speaking.

“Hearts4Minds” focuses on treating mental illness just like any other disease. Alex could never have willed away his depression or anxiety anymore than he could have cured himself of cancer. The belief the he could, or that other sufferers can, is misplaced. We teach a different “language.” the aim is to empower the sufferers and their families. We teach how to recognize and intervene at an early stage of a mental health crisis. With understanding comes execution and ultimately change. They are not less than and never again do they need to feel accused of something beyond their control.

Recently, I spoke at the hospital were Alex was once a patient and I pitched them an idea. On behalf of our organization, I asked for the implementation of a Specialized Care Coordinator, whose sole function would be working with families and patients battling mental health disorders. I wasn’t blaming the hospital, but I was honest about the gaps in care.

None of Alex’s medical providers worked together and nobody on his team was willing to include our family in his treatment plan, citing privacy issues. But, models exist for families to be involved in the care plans of patients with other diseases. Those people are advised and encouraged to bring a loved one to their medical appointments. Why are those with mental health disorders, which are diseases of the brain, not afforded the same options? Families are not looking to be told what was said in therapy, they simply want to aide in the recovery process.

There are days where I question whether or not we can win this fight and normalize mental illness. There are days where my grief is unbearable and I wish my son was still on this earth with us. But, more often than not, I am confident that this is my calling and my motivation is unwavering. Alex is always with me and the signs are everywhere. Truly.

For a bug loving, athletic boy, Alex was oddly a lover of Chinese herbal tea. From a very young age, that boy loved his tea. Many years ago, I surprised him with his very own Chinese teacup. It was designed for small sips of tea, tall and slender, with no handles and brushstrokes of what we both always assumed was some sort of Chinese writing. He loved that cup and would always request his tea in it. Not long ago, I was going through some boxes of his things and I pulled out his beloved teacup and held it up. It was as if I were seeing it for the first time and I began to shake. I almost dropped the cup. The brushstrokes were never Chinese writing. They were dragonflies.

People can choose to believe me or not, but I never saw the dragonflies on that cup before. Since Alex’s death, my newfound clarity and insight has allowed me to see what was always there. The signs that this was my new calling have been there all along the way. I am never alone, but forever guided by the wings of the dragonfly.

 

 

The picture that helped carry Alex’s family through unimaginable grief.

 

 

  

 

 

Alex as a young man. Same smirk. Same twinkle in his eyes.

 

 

 

 

 

 

 

 

Sheryl Johnson, Alex’s mother. She runs the mental health advocacy group Hearts 4 Minds in honor of her son.

 

 

 

https://hearts4minds.org