My son met criteria for involuntary treatment the moment that he stepped off the roof of a hotel and fell to his death.

That is how I started my 2-minute testimony in the state legislature in February 2020. The statement was true and the quickest way I had to make my point. The lawmakers were debating whether they would pass a bill to change how Washington State manages crisis care for individuals in severe psychiatric decline. Could someone in a decompensated state of mental disease get a hospital bed because of “unsafe behavior” resulting from grave disability, before they posed an “imminent threat”?

As a mom who watched her son disappear into a cloud of mental disarray without any coherent help, I could not imagine any reason to kill this bill. But systems of care for individuals with serious brain disorders seem to function like a Mad Hatter’s tea party, where there is little organization and hardly anyone gets any sustenance. No incoherent decision process surprises me. To my satisfaction, the bill passed, and I will be curious to observe whether treatment improves for those who are most ill.

Divisive arguments about involuntary treatment are not my focus here, but I cannot separate the politics from what happened to my son and our family. His treatment took many wrong turns because of outdated laws, confusion, discrimination, and lack of resources within the system. Everyone—providers, police, social workers, peers—told me that “the system is broken.” My son’s mind broke, and instead of helping the broken system broke him all the way.

"As someone who tends to buy glue, thread a needle, patch a hole in the wall, I was not willing to let something so broken fall further to pieces without acting. Standing by without stepping up was not my style".

For years before I spoke my mind in the legislature, I wrestled with the concept of hope. My son, Calvin, suffered with a tic disorder, Tourette’s Syndrome, from childhood. I wanted to hope that my 6-year-old would stop dropping the F-bomb every few seconds. I wanted to hope that he would stop biting his cheek until cellulitis took hold. I wanted to hope that he would not punch out his bedroom window again. Hope was not working. Our family needed help. The field of psychiatry had little to offer beyond antipsychotic medications, which led my smart, athletic, kind, little boy to scream in the night and fall dull and anxious during the day.

As a yoga practitioner, I sought counsel for myself and my son beyond the medical field. A naturopathic/chiropractic approach did sometimes help with some of his symptoms. Meanwhile I sought calming strategies for my overwhelmed mama mind.

One of my favorite authors, Pema Chodron, advises people to practice hopelessness. At first that concept irritated me. Give up hope? What else is there? I read her book, When Things Fall Apart: Heart Advice for Difficult Times.

"I started to consider that giving up hope might help me heal and continue to function. Hope is stuck in the future. Agency is right now. I decided to focus on what I could do instead of waiting with hope for things to sort themselves. I also had to give up hope that doing the right thing would get me what I wanted. Seeking right action was worth it either way".  

Chodron, a Tibetan Buddhist nun, says this, “Hopelessness is the basic ground. Otherwise, we’re going to make the journey with the hope of getting security… Begin the journey without hope of getting ground under your feet. Begin with hopelessness.”

The ability to live on unstable ground gave me the resilience I needed to survive my son’s traumatic four-year struggle with a psychotic disorder, which was first diagnosed as Bipolar 1 when he was 19. Because I gave up hope and instead focused on survival without security, I was able to live through his two incarcerations for being sick, his time living homeless because that’s where hospitals discharged him, his previous suicide attempts that included a leap from a highway bridge into a raging winter river, and his actual death.

"I knew in my heart that his illness would probably kill him; while he was alive, I loved him fiercely".

I remember talking to Calvin after sundown on a chilly fall day. He was going to bed in a grove of trees somewhere in Seattle. He had lost the poles from our little tent—one my husband and I had bought before we were married, when we journeyed halfway across the country on a lark, back in the “before” part of our lives. That night, my son told me he was wrapped in what was left of the tent. We talked about ways to mail him a new coat by using an Amazon lockbox. We talked about the moon and how we had loved to go out and look at it together when he was young. I said good night and that I loved him. Then I wept in my own bed, my heart wrung out and my head spinning with the pain of what life had become for my precious family.

How could a mother have that call and not jump into the car to go get him? He was only a few hours away. The answers are deeply complex and also simple. It was not safe, for him or for us. When his psychosis took charge of his decisions, he became a threat to me, especially to me. I had learned enough by then to understand how common that is, especially for mothers and sons. Through the phone, we could connect with love. In person, our fierce love for one another created the biggest danger of all—that he could hurt me. Neither of us would recover from that.

There were other Twilight Zone moments when he was sick. He called from San Francisco as he ran through the streets and could not locate himself in time or space or speak in coherent sentences. That night, police were kind and safely escorted him to a hospital--half naked, catatonic and without any of his personal belongings except the cell phone that had tethered him to me and, for the time being, his life.

There were good phone calls too, like when he found his way onto the property of a commune where he lived happily in the sunshine and ate lentils and brown rice for a month or two. I happily paid his stipend to stay. There was the call from Western State Hospital that he could come home in time for Christmas. There was a call about a new job that excited him.

"My son’s narrative is thick with paradox. He had bipolar disorder, after all. He was in one moment brilliant—a former state champion in extemporaneous debate—and in another moment lost on a city bus, terrified by green paint".

He reached out to me as his most trusted caregiver and later lashed out with vicious accusations that I was a witch, an agent of the devil, someone he would never speak to again. When his mind misled him, he lost himself. His close connection to me got severed then also.

Calvin was doing better before he died. His final incarceration had made him eligible for an apartment with subsidized rent and a team of helpers through the Program of Assertive Community Treatment (PACT). At Seattle Clubhouse, affiliated with Clubhouse International, he organized game nights, wrote a newsletter, helped make lunch.

On the day Calvin died, I was busy with my job as a resource coordinator for a non-profit state agency (Washington PAVE) that helps families impacted by disability. PAVE was organizing a conference, and Calvin and I were going to present a session together. In a wonderful and rare mother-son collaboration, Calvin had helped me write an article about Achieving a Better Life Experience (ABLE) accounts, which are an option for people on social security income to save money. The article would form the basis for our presentation.

Calvin sent an email that morning: “Hi Mom, I will no longer be able to present with you on the 26th. Sorry for any inconvenience. Let me know if there's anything I can do for you in preparing, assuming you will still be giving the talk. Love you, Calvin”

I replied right away, letting him know that it was no problem and that I loved him and hoped we could talk soon. I knew he was not doing very well. He had slipped into prodromal psychosis and was teetering on an edge. He was far from home, but people around him knew and shared tidbits with me. Given the treatment laws, Calvin’s lack of insight, and nowhere to get help, there was nothing to be done but to wait.

When he slipped into his deepest levels of his illness, my son was unable to recover without outside intervention. He had anosognosia, a symptom of illness that renders a person unable to recognize the illness in the brain. It always got ugly before there was relief.

When the doctor called, I was at a Starbucks for a meeting to talk about funding for my grassroots advocacy group, Mothers of the Mentally Ill (MOMI). My son had supported that work, and even attended a forum I hosted in Seattle. He agreed that involuntary treatment needed to be more available: “My civil rights weren’t protected, mom. Instead they made sure I would lose all my rights by going to jail.”

Because I knew my son was not doing well, I was not surprised to get a call from a doctor. I anticipated hearing that he would be detained and there would be a court hearing to determine the course of his treatment. I would probably need to gather his long history, submit testimony, explain what medications worked and what my son was like when he was doing well. I would hope that the hospital would encourage a Release of Information so I could support my son, especially through discharge planning.

When the doctor said something about a hotel roof and how the doctors could not save him, I did not understand. Wait, what? “I’m sorry,” the doctor told me. “He died.” The ground shifted, my stomach revolted, and the sunny day went blurry. “My baby boy!” I screamed into the phone. “No!”

I had practice with groundlessness. Still, how does a mother catch herself? I believe that because hope and happiness were never the point, this pain was eventually survivable.

It was never about the hope that he would recover. My focus was not the future, where he would bounce his own baby boy on his knee one day while we talked about “those hard times.” Sure, I wanted that fantasy to come true. If I had focused my energy there, I would have collapsed under the weight of my loss.

I did not just lose my 23-year-old son. I did not just lose the young man who surfed, loved taco night, and usually won Magic the Gathering games. I did not just lose the little boy who cried for comfort in the night—the same little boy who called from the grove of trees, when danger was very real and close. I also lost my son’s future self, and that hurts beyond belief.

Still, life did not promise me anything. I got to know a mother’s love. I get to feel a mother’s pain. I have the gift of a journey that did not come with any guarantee of security. There was never truly solid ground. My tumble through being human was in a tumultuous moment, but I knew how to tumble. I would go on.

"While my husband and I were cleaning out our son’s apartment, a journalist interviewed us. I spoke about happiness and why it is the wrong life goal. My point was rooted in my belief that hopelessness makes me stronger than hope ever could".  

“Accepting that happiness is a momentary and fleeting aspect of life and not the goal leaves room for grief, struggle, and confusion,” I said. “Those equally important experiences cannot be disregarded as bad, wrong or something to avoid. Families impacted by mental illness can seek comfort in accepting that happiness is not the only experience worth feeling.”

Have I thought about suicide myself? I have! Escape from big feelings is always a temptation. I’m a fragile human just like everyone else. I have decided to live. Feeling hurt is rich with complexity. It interests me. I also think that the shadow of deep grief creates a contrast for experiencing love’s richness and color.

I loved my son fiercely. I put my available agency into trying to help his legacy improve the world. I pair that agency with the hope that we can emerge as a society with better treatment options for those whose lives are impacted by serious brain disorders. And I let myself fall into the groundlessness that not every chapter in this story will be written by me.

When Calvin was a baby, I whispered to him in his crib, “You are so important.” I was right. His bedtime story did not turn out like I wanted, but I am still writing.