Updated: Jan 17
No one ever really talks about what it's like to grieve the loss of someone living--not when the diagnosis is of someone's mental state--compound that with being Black. And how when they do pass away, it becomes this dual, still uncharted loss. Maybe when there is addiction, and definitely when someone is terminally ill. But when someone you love is chronically mentally ill, the conversation is all but a soft whisper, if audible at all, and support is scarce.
When an illness is without physical affliction, it's easy to ignore or hide behind supposed ignorance. You were born whole. You have a body, a mind, a spirit, a soul. At any given time, one or some parts of you may not be doing well. If it is physical and impacting your overall functioning, you seek out medical attention and care. When it is emotional, or mental, you need the same: attention and care. No one is exempt from mental health, because we all have it.
Mental illness remains taboo. We are beginning to open ourselves up and educate ourselves on the basics of mental health. It's not uncommon to hear about or talk about depression and anxiety. Too often people throw around terms like “bipolar” and “ADHD” to label behaviors and symptoms even the experts don't completely understand. To ridicule. To make light of something so heavy. Would you, in the same way, throw out a label such as Down Syndrome, or cancer? Try it in a sentence. I think not, right? The depth of these conversations are certainly greatly lacking, nonetheless, present. What about other debilitating mental illnesses? Something like Schizophrenia.
That was my brother's diagnosis. Schizophrenia. Paranoid type.
There's a big age gap in my family, with my oldest sister being a bit shy of 20 years older than me, my only brother was just under her, then, my sister who is 10 years older than me......me, and then, my baby sister. Essentially, my little sister and I grew up together in a completely different time than our three older siblings grew up in together. From my earliest memories, my brother always lived with us, except for when we were homeless. My older sisters were on their own. The eldest had a family of her own, and my other sister was making a life of her own.
Why my adult brother lived with us never really occurred to me as a young child. It was when our dad passed away and his mental health deteriorated rapidly, or was triggered, that his presence in my life became palpable, and well, inescapable. Taking medication was an ongoing, losing battle. He didn't like how they made him feel, and frankly, it's understandable. Medication made him a shell of himself. I think we all felt trapped to some extent. I'm sure he did, too. He began experiencing auditory hallucinations, and what they had to say was dangerous. They disturbed him, and he believed them, and it caused emotional chaos in our family.
After our dad passed away, my immediate family, we all moved in together. With my brother's delusions, the tension was too high. What seemed like a good idea spiraled down. We went our separate ways, but my brother stayed with us--with mom, baby sis, and me. He had his own room. Us gals shared a room and a bed. Much of the time, we lived in a heightened state. We slept with our doors locked because there was a possibility we would wake up to a knife he had placed on the kitchen counter. He was rarely physically violent, but he had escalated before. He'd mumble to himself. Laugh at us as we walked by. He'd pace. He'd peak out the blinds to find the neighbors hiding in the bushes. He was in his own world, and we were protecting ourselves from it. As a pre-teen, there were times when I called the police on him myself because we were terrified, and our mom would not reach out for help. The police would arrive, he'd be transported to a mental health facility, and she would allow him back home almost immediately.
During my high school years, I remember being out with family friends when I received news that my brother hit our mom over the face with a two-by-four. Even then, she did not want to call the police or receive medical treatment. Thank God she did. She had two black eyes for weeks. I cannot remember clearly--I want to say I recall stitches across her nose. I couldn't bear to look at her without my heart breaking. Breaking because my mom was hurt. Breaking because I felt it could have been prevented. Breaking because she still wanted to rescue him after what he'd done?! Breaking because now my brother was in jail. Breaking because, what was next? As a teenager, based on our experiences to that point, I knew there was no effective system in place for people with a chronic mental illness. I was scared of my brother, and then again, I was scared for his long-term safety and well-being. The system at large is scared of Black men. What with mental illness additionally, what would become of him?
Not sure how we obtained the information--in his psychiatric evaluation after that incident, he reported he did not hit my mom; he hit a skinny Black man in a shiny robot suit. The line between reality and delusion, paper thin, blurry. Something about my mom triggered him in general for as long as I could remember; he went through long phases when he would only call her by her first name instead of mom. She'd also recently kicked him out, so while he was hallucinating, it felt intentional too.
He never returned home with us after that. He was incarcerated, then transferred to a half-way house, and finally, transferred to the facility in Downtown Los Angeles where, after many years on his own, he took his last breath. Before our oldest sister assisted him with his SSI application, he would reach out to me for food. I'd take him groceries to make sandwiches, and each time, he'd ask who Nnenna was; Schizophrenia can shape orientation (person, place, time situation). He missed out on so much of our lives. We missed out on his. But the arrangement was for the best. It was our normal.
My family got the call on September 25th, 2017, though we later learned he was unrecognizable against his ID when personnel found him. Stages of decomposition indicate an estimated length of time after death. He'd built relationships within the complex because when a couple neighbors noticed they had not seen him going in and out his room as usual, and when a foul odor surfaced, they notified the staff.
I've been grieving the loss of my brother for longer than just this past year. So much so that when he passed away, someone did not know I had a brother. Awkward? Yes. Real? Also yes. My Palmdale High School BFF called me "crazy" early in our friendship, and good Lord, it sent me over the edge. Am I crazy? Will I be? Will my kids be? I was offended. I was upset with her. I was afraid she may be right. We processed it and have never had a disagreement since then. Come to find out, her mother also has Schizophrenia; she was raised by her grandmother. In retrospect, I was grieving then too.
My brother made the best Top Ramen ever, was hilarious, had beautiful handwriting. He carried my mother's thoughtfulness in his heart, and in his times of clarity, it shined through. When I was in middle school, because he didn't finish grade school, he'd ask for my help spelling things. When I was in high school, he'd request my cabbage with bacon. Fondness and fear both present.
There's a loneliness and isolation for people living with a chronic mental illness, both for him and for us as his family. I've been grieving the loss of that relationship since he was diagnosed many years ago; I was 9 years old. Now, I am 32. December 21st, I’ll be 33, and on December 19th, my fellow December baby, he would be turning 47.
His condition posed a challenge for him that he lived out with strength. At the same time, his condition challenged us as his family and to all who encountered him, as to how we cared for and treated him in spite of it. That he lived his life out with strength is not a sentiment I would have shared when I was 12 years old. Recognize that this dance is learned.
My brother died alone. His mental illness may have cut him off from connection in the sense that you and I crave it and maintain it. He lived a humble, simple life in this demanding, complex world. He was free from the bondage of cable TV, cell phones, money and social media--his choice. He wrote us letters when he was up to it, and bought us personal gifts when he could; he always remembered my love for butterflies. He didn't always keep in touch, but our contact with him was meaningful.
Since last year, people have asked questions such as, Was he diagnosed after our dad passed away, with no prior history of mental illness? My answer is: Yes, his passing triggered certain symptoms; his mental health deteriorated unexpectedly, severely. However, based on stories my sisters and my mom have shared, there was a prior trauma history, and there were behaviors present throughout his life that seemingly went unaddressed. Multi-generational trauma. Multi-generational mental illness. Layers.
That begs another question. Why not get him help sooner? I asked that for many years out of feelings of disappointment and hurt that our mom didn’t “do more.” The best way I can conceptualize it is this: If you are a parent or an aunt, uncle, caregiver of any kind, imagine cradling your newborn baby. All your fears, yet more so, all of your hopes and dreams for this life God has given you. Close your eyes and really connect with those feelings, the beauty and innocence of life before you, the sounds and scents, the deep love. Having given birth to my son this January, the love I have for him is indescribable, and I don't want to imagine him suffering from mental illness. I don't want to imagine what that would mean for him, for us. And I can truly begin to understand how devastating and paralyzing that would be for a mother. How you love this human so much and you believe you are shielding them, saving them, even when you start to see things that just don't seem right. I get it. If we can imagine every person--especially those who are difficult to care for--as a newborn baby, someone's son, someone's daughter, someone who was held and rocked and loved by a parent or caregiver in their first moments, months and years of life, then we can begin to develop compassion for those who likely need it most--the particularly vulnerable ones.
There is a flip side to all of this, as with most life experiences--
No one ever really talks about how we can all learn from and be inspired by the life of our loved ones living with mental illness. And how our lives and our world is a richer place because of the courage and compassion it takes to care for people who we find difficult to connect with. I didn't become an LMFT by happenstance. And the precise events that birthed Silent Hearts Heal Here and my call to address shame and stigma are no coincidence. My personal history, the family system I was raised in, including my brother's mental illness, his life and death, significantly filter how I show up with others. All of it exhorts me to raise my voice for the people in the back. It compels me to be a support for someone else who is similarly grieving and loving someone living with a mental health diagnosis.
Let's talk about it. All of it.
Rest in peace, Michael. You have always been loved.
Shush Your Shame
Jennifer J. Jones