Taking Refuge in the Appearance of Life

img_4194The snow is only fluttering now. It is large as goose down and I can follow a single flake from its appearance outside my attic window as it tumbles down to the slushy street. Cat asleep on daybed. Knitting project put aside momentarily. Within this small room, my study, a picture of contentment.

For this moment I take refuge in the appearance of life. Trying to believe that I, the inhabitant of this picture, am really here, am really a human being on earth. Because my soul knows better–it understands that I am a ghost. As is my son Sean in his far-off psych hospital bed who is still puzzling over the wrinkled reality that shot him to another planet.

My life tore on the day that my son in his paranoid delusion denied me as his mother, but it didn’t disappear. I had Sean to fight for and I did so ferociously. But time is time, and when wrestling with mental illness time slows down. My fight has slowed, my hope subdued. Each milestone I yearn toward opens up new pain.

A year ago, I fought to get Sean into a shelter only to have him refuse treatment and end up on the streets worse than before. I sent his father to find him and what he discovered was so wretched it nearly cost my son’s life. The LPS state conservatorship that we won was miraculous, and yet, the ensuing months of locked care have yielded few results. Sean lives a drugged, lonely life in a suspended state of what I can only imagine is merely adequate psychiatric warehousing. While it is so, and while he refuses all contact with me, I can never come home to myself. Part of me will always be whisped around him, embodying his disjointed sense of self with my own. It’s exhausting.

In two weeks I am planning to fly out to visit his treatment team and to try to make contact with Sean. My first time in California since my intervention two and half years ago. I fear for myself, what it will do to me to come face-to-face with his shabby surroundings and the inadequacies of this care. I remind myself there are good people there: His conservator is a beautifully attuned woman with a solid spiritual wellspring; his program manager downloads music for him and talks art and books. A man from FERC, an incredible Bay-area resource for families dealing with a loved one with mental illness, will meet me for support.

And Sean has lucky invisibles: The person who helps him wash. And brings him pills. And tries to lure him to attend groups. And serves him meals. And delivers the books I send under the guise of “county donations.” I pray they are kind to him.

I pray I will find kindness too.

 

Save

Save

Conserved!

Why do I skip over the biggest events here? Not for lack of courage I don’t think. Possibly because they have so many threads that are important to write about that I’d rather not begin until I can commit myself fully.

As the writer Anthony Walton once told me, “You can’t tell any story without telling the whole story.”

But yes! and yes! and my god yes! Sean was conserved. For every time “the system” has failed him, and us, and thousands of other families begging to get even a scrap of the help they deserve in caring for a loved one with profound mental illness, they got it right one time.

Of course, it helped that Sean didn’t even get out of bed to attend his conservatorship hearing. But I don’t expect that was what could be termed an active choice, more likely the unfathomability of putting on actual clothing, leaving the hospital and going into a courtroom to defend his life.

We don’t really know what a conservatorship will look like — will it play out in years of Cuckoo’s Nest warehousing? Will his mind actually begin to quiet and find some kind of healing? Will he ever allow his family into the picture? For every problem it solves, it answers no questions.

But he will not be living on the street.

On Hearing Voices

0920OPEDnegley-popupMadman or shaman? It’s a long lived debate whether those who hear voices are tuned to another realm or just plain nuts. Where my son is concerned, I have always erred on the side of shaman. It’s been more than mere error–I have long taken pride in his sensitivity and otherworldly interests.

Since he was quite young–five even–Sean has been fascinated by what is felt and conjured and intoned. I remember a little seance he once held in my bedroom, his sweet face so earnest in the candle light as he cast his spells. One of his favorite books was a picture book on shamanism; it was dog-eared by the time he was 10. And once Harry Potter hit the scene, we were utterly lost.

I saw we because I was his companion in these yearnings. When his study of  Wicca became very serious, around 11, I took him to a celebration of Imbolc at a friend’s coven–a jolly gathering of large women who embraced him warmly. He had me as his “flock” for his own ceremony in the woods near our house–I can’t remember which Wiccan celebration it was, but a little green snake hung on a bush nearby and we both thought it a good omen.

I didn’t especially truck with any of the stuff myself, but I could see it was important to him. It was his spiritual life and it was a place of much learning and empowerment to him. He really was impressive: He taught himself fluent Pictish–the written alphabet of the ancient Celts–and wrote pages and pages in a little notebook. He acquired all kinds of knowledge of herbs and plants, of history, of anthropology. As he got older, he became fascinated with psycholinguistics (whatever that is) and philosophy–and poetry.

But when–several months before he left for California to lead a life on the streets–he told me he was hearing voices, I began to feel uneasy. At first I wrote it off as his flare for the dramatic. Then I started to wonder if there might be some truth in it–that he really did have some psychic abilities that allowed him to tune into vibrations from “beyond.” It was possible. And such viewpoints are part of my DNA: I come from a New Agey kind of family where psychics are regularly consulted, energy healings can take place over the phone, and where we were encouraged to guzzle great quantities of green algae to preserve life and limb.

The fact is, I wanted to believe that Sean was psychic. It explained a lot of things in his childhood, which was unduly fraught with anxiety attacks, social otherness, and a pervading sense of being “unsafe” in the world. I envisioned him harnessing these powers to help himself and others, to heal and bring hope. His psychic powers would bring him a much-deserved sense of identity and belonging. He might even connect with other psychics, strengthen his skill through psychic mentors who would help him grow into the shining man I know he’s capable of becoming.

But that is not what happened.

Sean’s voices didn’t offer pearls of wisdom from beyond the grave. They chuckled and growled. They argued with each other. From what he told me (back in the day when he still spoke to me), it was a motley chorus of spirits that inhabited houses and rooms, department stores, and even natural places. At that point, I don’t think they were telling him to do anything, but sometimes their aggressiveness scared him. He reported several times that he was held down by spirits as he tried to sleep. They haunted many of the abandoned houses where he squatted in Maine, and later San Francisco, forcing him to flee.

A couple of times I casually asked him, “Do you think it might be a sign of schizophrenia?”

“I thought of that. But no.” He was definitive. Even when I pressed tenderly on the idea that it might be more than coincidence that the voices appeared just at the time he stopped taking his long-time antidepressants.

The voices began to be a casual part of conversation between us. I’d ask him as if mentioning an acquaintance of long past, “How are the voices doing?” “Oh, they’re still talking,” he’d say with a tinge of sarcasm. I asked if he had ways of controlling them, or turning them off, or protecting himself. He mumbled something I can’t remember.

In any case, I felt it was important to accept them even if I didn’t believe in or understand them, because, in a sense, we were both his companions: I have always been the one person Sean can talk to. I am the person he calls for the pep talks, the long-distance money wires and plane trips home, I am the person who will laugh with him about his bungling, swashbuckling attempts at independence. I believe I have been, most imperfectly, the voice in his head.

You can make the case that it was high time he cast me out to find his own voice. As we all do–or think we can when we are young (before we realize we are haunted forever by those we have loved). But by the time I found him sleeping in the gutter, I believe they had overcome him. His own voice didn’t have a chance.

I still send my voice out to him every night. I keep hoping it will drift through the tangle of chucklers and demons who have encausted his reason, perhaps reaching him as he sleeps. Like a whisp of smoke, so light it can enter undetected. It says to him: I’m with you Sean. Hear me, trust me, follow me. You are not alone.

I found him in the gutter

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My beautiful boy.

I know I shouldn’t be surprised by my growing aversion to write about my experiences searching the streets of Berkeley for my sweet, homeless son. Because this was the thick of it. The day I found him, literally, sleeping in the gutter–looking just as the very first street person I had encountered described him (“There’s a nice schizophrenic kid who sleeps under a blue blanket by People’s Park.”) And how I set up vigil across the street in that park, watching as a man emerged from his townhouse to stab the sidewalk around my son with a trash picking pole. And how I placed a paper bag of food by his covered head: all his favorites. Plain buttered bagels. Orangina. Smoked almonds. Even with jackhammers working the street, he did not rouse until the noontime sun had blazed the dew off the grass.

I watched him hungrily, trying to go unnoticed but unwilling to let him slip out of my sight as he had the day before. He quickly spotted me. He glowered a menacing, terrible look at me and I looked down, submissive as a dog. Furtive glances thereafter–from my knitting to him–as he slowly, mechanically ate the almonds and drank the water. He rose. He stuffed a blue blanket, his only possession, into a red plastic bag and slung it over he shoulder. Shooting me one last, forbidding look, he ambled barefoot down the sidewalk toward Telegraph Ave.

I kept space between us but I dogged him. At first I stayed on the sidewalk behind him half a block. But after he turned and blazed hostilely a few times, I began hiding behind things. I was ridiculous, like a Road Runner cartoon: I drew myself up skinny behind telephone poles. I slunk between car bumpers and slipped into door wells. He wasn’t fooled by any of it–not even my brilliant strategy of ducking into a bus stop with smoked-glass windows to view him unseen. That same thing that had told me where to find him — across 3,000 miles — let him know exactly where I was.

Sean picked cigarette butts off the sidewalk and smoked them. Once he sat for a long while on a wall and ate his bagel. I used that time to jump into a suitcase store on Shattuck Ave and hurriedly buy him a backpack. When he crossed the street, I did so too, and dipped into Walgreens to buy him some Marlboros. I don’t remember how I got the courage to approach him … or if I just got lucky and he started walking toward my bus stop “duck blind,” but I suddenly found myself beside him.

“I got you a backpack honey,” I said, handing it out to him. He stared into the street as if I weren’t there. “And some cigarettes,” I said hopefully. “I don’t want them,” he said, “and if you continue to harass me I’m calling the police.” There was a woman waiting for the bus who was standing between us and I could feel her unease.

“But it’s a backpack honey,” I said, not knowing what else to say.

“I don’t know who you are,” he said, “but if you don’t stop harassing me I’m calling the police.”

“I’m your mother, Sean. I love you sweetheart,” I said. “Please. Please.”

He turned to the lady at the bus stop and said very politely: “Excuse me miss, do you think I could borrow your phone to call the police. This lady is bothering me.”

She mumbled something and moved away quickly.

“You can use my phone,” I said almost cheerfully. I held it out to him. He turned again to the street, with that stony, stoic look. He was against the wall, I knew, and didn’t know how to save face. Eventually, he just walked away.

During all of this–even before he woke up–I had been on the phone trying desperately to make contact with the Berkeley Mobile Crisis Unit and Berkeley Police for backup. I had learned the previous day that this mobile unit was designed for just these kinds of situations and had mental health workers who could evaluate him, and if needed, connect him to treatment and services. They kept promising me a unit would be there, but as the morning wore into afternoon they didn’t show up and I became more hysterical.

I began to realize the difficulty of coordinating this capture of my beloved quarry. It would require Sean to stay put for a while, which he eventually did. There’s an afternoon “feeding” in People’s Park every day by a homeless support group and Sean made his way there. I found a really fat tree to hide behind and started making another round of calls. “He’s here! He’s in People’s Park. This is what he looks like. Please please please come help me.”

First the Mobile Crisis lady showed up. She and I talked behind the tree and I pointed out Sean, describing his dazed and hostile condition, his destitution, how unrecognizable he was from the son I had left not three months earlier. Then the cops showed up. I stood in a tight knot behind the tree–the crisis lady had instructed me to stay as invisible as possible–terrified that Sean would spot the fuzz and make a run for it.

They converged on him and led him to a bench to talk. It all looked so civilized. I became terrified that they would be fooled by his politesse and do nothing. Please take him. Please take him. Please take him. My face was on the tree bark; I rocked my forehead back and forth as I cried and prayed.

The longer they were at it the more I feared the outcome. So I inched my way out to join the conversation if I could. I walked sideways in a crablike, unctuous manner–as if that would somehow make me less obtrusive. I pressed my hands together in actual prayer and mouthed the words please please to his interrogators. The mobile crisis lady stopped me as she saw me coming and motioned me to return to my tree.

A while later she came to me and reported that Sean seemed to be paranoid and delusional. She also said he claimed I was a child abuser. At that point, I only cared about one thing: Are you going to take him?

“Yes,”she said. “We’ll transport him to John George Psychiatric Pavilion and they will do a psychiatric assessment. I have to tell you, though,” she added. “You shouldn’t expect too much. He’s a sweet kid but I’ve seen a lot of this. He may have to cycle in and out for a long time. Even years. But he may come out of it okay eventually.”

What kind of fucking help was that supposed to be?

And so I hid behind my tree watching as my son, in handcuffs, climbed into an ambulance and sped away.