“Life is designed, with unfinished lines, that another sings.
Each story unfolds, like it was gold, upon a ragged wing.
The bold and the fair, suffer their share, he whispered to his kin.
All of my debts, left with regrets. I'm sorry for everything. “
– Patti Smith, Trespasses
It’s natural that Steve’s death would flow into my thoughts on those moments when I am alone. It’s been only 14 months. At times I need to steep in the grief, hoping to connect with him. My musical moments with him since his death have begun to heal some of my judgments about him, about me, our family struggles, and my own fears of being incapacitated. My connection to him through music is palpable, and this morning Patti Smith’s beautiful verse brings me to tears, weaving the stories of my brother and my son, Zane.
I’ve been carrying some of Steve’s psychological weight, or perhaps my own fears, since I was 17 and he “broke.” He was 19. The episode was bizarre and frightening and I’ve told very few people about it. It took my sisters and I over 30 years to talk with each other about our particular perspectives of the event. He was hospitalized. It would not be the only time, and it was the beginning of a series of disturbing events that would define his observable life, alongside the everyday experiences that accompanied them.
I was present for some of his incidents when I was younger. Others I learned from Steve himself, or my parents, or my sisters. They required interventions by a family member, a hospitalization, or both. My connection with Steve over the years was in sporadic phone calls.
Since Steve’s death in 2021, my sisters and I have used laughter to open our wounds. Steve’s behaviors on the surface were outrageous and frightening. Considered too closely, they will paralyze you, so we laugh instead. Unexpected behavior from a person can challenge the depths of your compassion.
Beneath my own surface is an undercurrent of seeking understanding in order to heal. Visiting Steve through music inspires me to consider the regret, doubt, and shame about our relationship. It has helped me to reframe my perspective. I’m only now realizing how Steve has defined who I am as a parent, something so obvious in retrospect.
When I was younger, I carried a fear that the same would happen to me. I couldn’t tell anyone about it, for fear that saying it out loud might conjure it. In my twenties, I often wondered if I was old enough to be past the risk of a break. But at the same time, there was a hardening of sorts. I had to be strong for my parents, for myself, for my future. I didn’t know how to hold space for Steve. I see now that it was self protection. If I did not face Steve’s struggles, perhaps I would be protected from the periodic terror of his experiences.
In my twenties and thirties, I said I would not have a child. There was no plan to start a family in my first marriage. Deep down, that might have been part of my choice to marry a man who was clear he had no interest in creating our own family. He was someone who would not challenge my fears of my own genetics and how they might play out with our own child.
When I fell in love with Wrayal, and we decided to get married, we talked about children. I explained that I had never planned to do it. I was ambivalent at best. But he was optimistic about the story of our imaginary child. Our child would be Daddy’s little girl, or perhaps a boy he would play catch with. I was swept away and we decided to let nature decide on our course. When Zane was born, a part of me was unlocked. It’s a trite statement, but it’s true. But throughout the joys of raising an infant and a toddler, I held onto a nagging fear about what would happen when Zane turned 17. Or 18. Or 19. One thing I knew was that I would embrace any of Zane’s challenges and break my cycle of discomfort around any unexpected or bizarre behaviors.
Zane’s unusual behaviors didn’t seem strange to me at first, but I had few reference points. When a neighbor suggested that Zane was late in talking, I was surprised. I sat down and googled “late talking.” Most pages were about autism. I was floored and frightened. I kept searching and found a “late talking” discussion group where parents were discussing all the other reasons their child might not talk. Their resentment for the association of late talking with an autism diagnosis was palpable. This was just before the boom of social media, so it was not as easy to find discussions among parents about a child’s development for speech or autism. The group, which first comforted me, began to feel like a community that allowed me to deny my worries. I dropped out of the discussion.
When Zane was three, it became clear to Wrayal and I that when Zane talked, he sounded different than most kids. And he talked about the most unusual things. He didn't participate in the social things that were going on around us. He seemed to speak mostly to himself, describing thoughts that seemed somewhat random and unrelated to our experiences. His words were a window into his internal world. We slowly accepted that Zane was autistic. Or had autism. Or was a person with autism. Regardless of the words to describe him, the realization was both alarming and cathartic. Our experience raising Zane would be quite different than the fantasy. I suppose that’s true for all parents when the reality of parenting looks nothing like the dream.
As much as the news was challenging, and somewhat devastating, I had a secret relief. Perhaps the fates would excuse Zane from a psychotic break if he had autism. Wasn’t there some kind of unseen fairness equation in the universe? Or could science prove that one flip of a gene might produce autism instead of psychosis and depression? Over the years, I’ve learned that this is not true. There are many connections between autism and depression and anxiety. In the end, I decided that the best I could do was simply throw as much love at Zane as I could, while also learning about autism. I advocated, and still do, for him at schools and other places in society that expect him to behave neurotypically, or “normal,” if there is such a thing.
Zane met Steve only twice. The first time was at a park bench in Austin. Wrayal and I were visiting Austin in 2012 and arranged a meet up with Steve. I’m not sure it would have happened without Wrayal. Though I knew it was important for Zane and Steve to know each other, there was always a part of me that wanted to keep a separation between Steve and my own life. A protective barrier. But Zane was wide open, meeting Uncle Steve with his own unique warmth and charm. He made Steve laugh and Steve made him laugh. They seemed to regard each other with curious interest. Perhaps they were, and are, kindred spirits.
They met again in November of 2017. One of my sisters flew with Steve from Austin to Portland, Oregon for Thanksgiving. It was a huge effort on both of their parts. I never imagined Steve would get on an airplane. My father had long passed and Steve had been able to attend services for him in Austin. But my mother had dementia and a heart condition; we knew she only had a year or two left and it was important for Steve to see her in Oregon while she was still both alive and present. Steve stayed at a hotel with my sister. He visited my home and my mom’s assisted living apartment. We celebrated Thanksgiving at my house along with Wrayal’s family. We also sat at a huge restaurant table celebrating Zane’s birthday. Steve excused himself when it was too much. The visit was healing for me.
Now, at age 15, Zane often pauses and says, “I love my life.” Sometimes he’ll say, “Hey Mom, is it okay to say that I love myself?” Of course! I often tell him that it can take adults their whole lives to love themselves and that some never do. I tell him he is pretty wise to appreciate the things he loves in his life. And I’ve come to view Zane’s autism as a protective coating for some of the cruelty and disappointments that are part of the human experience.
Steve died in early 2021. It was unclear whether he had taken his own life. I was shocked and sad, but I also felt his peace. Steve was a sensitive soul. I think he was internally crushed by the everyday expectations and disappointments in life. He didn’t have that protective coating. He was vulnerable and he worried about people’s perception of him. He judged himself harshly for things he had done that might have hurt or disappointed someone. He spoke often about disappointing our parents. I find no coincidence that he passed away after both were gone.
Zane is also keenly sensitive, but his brain is wired toward sensory perceptions and not necessarily social ones. He notices when I’m concerned or frustrated; not through observation of my demeanor, but by perceiving the visual changes in my brow, mouth, or eyes. Sometimes he observes my feelings before I’ve tuned into them myself. Zane is just coming to realize that he is different, but so far he loves himself.
Each year, I release a few more of my fears that Zane will break. And as I release them, I realize Steve was never broken. Zane is sensitive to bright lights and sounds. Something so gentle in Steve made him sensitized to the everyday comings and goings of life in our times, and especially to the assumptions that people make about success and independence.
Being a parent has softened me, and I understand better the tenderness of my brother. In the last year or so of his life, I had moments where I could be there for Steve. But my support for Steve was inconsistent. He was forgiving nonetheless. He called on my birthday every year. I answered, or called back, when I had the emotional strength to listen to Steve without overshadowing his words with my own concerns or guilt about not staying in touch. Other times I chose not to answer when I saw he was calling. And then I’d get busy and not return the call. If he resented the times that I didn’t call back, I never heard that in his voice. He wanted to remind me that he was simply trying. Trying to connect.
Steve is with me now more than ever. I hear it when I listen to music, which was a substantial part of our relationship when he was alive. I don’t presume to tell, or even know, his story. But I woke up this morning with the need to tell the story of Steve and I. And Zane. With a little help from Patti Smith.
Postscript, 19 July 2022.
I’m adding some quotes a few weeks after publishing this piece after watching the film “Dream of Life,” which follows Patti over the course of many years. I transcribed this quote. The ellipses are not pauses, but are places where I removed some of the dialog.
"When one loses someone who is extremely important, it does alter one, but not necessarily for the bad. For example, losing my brother, for instance ... when he died, after the initial shock which was terrible, because it was sudden, I actually since then have felt like I'm a better person because my heart really was filled with my brother after he died ... all of his finest qualities somehow entered me as a human being when he died."
In the same film, she relays something that Allen Ginsberg said to her.
"Let go of the spirit of the departed and continue your life's celebration."
Susan, this is beautiful. I’ve always held the same fears about the break but also guilt that it happened to him and not me. I felt that as the oldest I should have been able to protect him. I know that’s not rational but I still held onto that guilt for years. Finally I had to let it go. This is such a beautiful tribute to Steve.❤️
awwhhhh..... Susan. Thank you for your vulnerability in sharing such an intimate piece of yourself <3 Ingrid