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.

 

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A Mother in Sheep’s Clothing

Old woman with sheep

“Mom, I need you to do something for me.”

I haven’t spoken with my son in almost two years. Since he abruptly cut off communication, prompting the Berkeley street search that begat this blog.

Actually that’s not entirely true. I have managed to slip in a couple of unwelcome phone calls when he was hospitalized after being hit by a car. Unsuspecting weekend-shift nurses who didn’t know better than to transfer the call through to his room where he was presumably pinioned and tractioned. A sitting duck.

Those calls all began with a long pause. Sean, I’m imagining, getting his mind around the person at the other end of the line. Then his strange, new schizophrenic voice. Robotic: “I’ve asked you not to call,” or “I don’t know who you are and I want you to stop harassing me.” Click.

Each time, I’ve whispered my desperate message quickly before he hangs up: “Honeyiloveyousomuch.”

These calls are for me, let’s face it. I am told he hates me, that he delusionally believes I am a child abuser and that he holds me responsible for all the negativity that has occurred in his life since he hit the streets and before. He refers to me by my first name only. My declaration of love isn’t exactly a balm for schizophrenia.

But I can’t help wanting to get the message through. I have to believe that a core of him still needs my love. Like all mothers, my tragic flaw is believing that my love can protect and bring comfort to my child. Against all odds.  When it’s probably me who needs his love.

Once I got a nurse to deliver a message to him that only he and I would understand, hoping against reason–or is that unreason?–that it would prove to him who I am. The message was part of a comical dialectic we used to have when I would sometime guess his thoughts, anticipate an action, or know just the right meal to make.

He would say, “How did you know that?” And I would ruffle his hair (before he got too bristly to touch) and counter: “Have I not been your mother for a thousand years?!” We chuckled over the idea of us tumbling through time together mothersonmotherson. Many incarnations, if you believe in such things.

But Sean’s familial enmity has been resolute since he cracked. And it’s not only reserved for me: Once, when his father called the hospital, he became so agitated they had to sedate him. He would instantly throw away any food or clothing his family sent to the shelter where he lived for several months.

It seemed hopeless, but then I had this brilliant idea. Grandma. They have always had a rapport, my mother and Sean. Not built on much of a personal relationship–my mother is much too awkward around children, especially boys–but they share a deep, common interest in metaphysical matters, Native American spirituality, art, mysticism.

My mother is an art therapist and over the years she has worked with Sean on drawings, writing poetry, working with symbol figures in sand tray therapy, and painting mandalas: “the great round,” as she would say.

So I found myself seated at her breakfast table a couple of weekends ago, just after Sean was conserved. My heart ached. The birds were beautifully, feverishly stabbing at the bird feeder. She crunched her gluten-free bagel. And I suddenly blurted out,”I need your help Mom, I need you to do something for me.” It took her almost a minute to figure out that I wasn’t reading the newspaper or having a random conversation, but was sitting there crying hard.

I asked her to send in her handwriting a short note from me to Sean in the psychiatric hospital. She would write what I dictated and sign it, Grandma. Hidden in her shaky hand, I prayed my message of love would have a chance of getting through. I feverishly stood over her supervising every word she wrote. I don’t know how she endured me except that her own mother’s heart hurts so hard for me she was probably glad to have something to do.

Here’s what (I)she wrote — and I even had her misspell his name, as she does:

Don’t give up hope, dear Shawn. Things will get better. You will find your own path again. There are many angels–in heaven and on earth–who are watching over you. I am in awe of your strength and courage. Love and hug, Grandma

The hug part was hers.

Whether Sean read it and was comforted, or read it at all, is just one more drop in the sea of not-knowing where my motherhood now floats. But it floats. And maybe my hidden message to him is really my mother’s message to me.

Losing a Child to Mental Illness

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“Our love doesn’t stop. It grows around the pain ….”

I had an idea when I started this blog nearly two years ago that I would be brave enough to take some readers on a journey with me to find my homeless son. And I did write it, I suppose courageously, up to a point. I found Sean, but encountered an utterly changed child–delusional, paranoid and ravaged by mental illness and a life on the streets.

In my last contiguous chronicle, I had succeeded in getting intervention by a mobile crisis unit and watched as Sean was shackled in People’s Park and loaded into an ambulance bound for a psychiatric hospital. There my posts ended. At the very beginning.

In the ensuing months, Sean has cycled through operatically horrific episodes of hospitalizations, incarcerations and homelessness. He walked into traffic and was hit by a car and spent 5 months in hospitals only to release himself Against Medial Advice. He is now in a wheelchair, nearly catatonic, refusing help of any kind. He is also in one of the best psychiatric hospitals in the Bay Area, where he is being “stabilized” after his recent admittance. He was picked up in an alley, sitting in his own waste, convulsing.

I couldn’t write about any of this. I just held my breath and blundered through. But I want to now. Maybe not so much the outward journey of negotiating the nefarious mental health system, but what it feels like as a mother to grieve a living child. I have discovered there are so many of us, often sitting alone in our own pain. Mothers whose children are lost to drugs. Or to husbands, or courts, or through anger. Children get lost through our own failings and for no reason at all.

Our love doesn’t stop. It grows around the pain, misshapen, and even strengthened.

Schizophrenia has stolen my son. But I will not let him go.

My small black heart

blackheartI know the goal of meditation is to find oneself suspended–if briefly–in puffs of nothingness. No words, no skittering chains of thoughts, no human entanglements. As a newcomer to regular meditation (for me, that means actually sitting 2-3 times a week when I absolutely can’t avoid myself any longer), those moments of “being” are few.

Mostly, I am waking to myself over and over to remember the tail-end of a thought stream very much like a dream. Then I focus on my breath … one, two, three …. only to wake moments later from another tangent. Many of these waking dreams include Sean. I know this because my centering breaths occur in a chest that is tight with longing and I have the sense of him having been near.

Yesterday, my meditation yielded something quite unexpected. As I settled into the gently muscled layers of consciousness, I suddenly found myself entering a small, gray chamber. It was like a tomb, with squared, windowless walls and I had the feeling of entering into a charcoal drawing–like Mary Poppins jumping into a sidewalk painting. Only this was not a jolly holiday. This was a sad room, maybe the saddest space I had ever entered.

On the ground in the center was a blackened, encausted lump that was pulsating slowly. And at the moment I saw it I had the thought: “Oh, that is my heart!” A wave of incredible sorrow and tenderness and compassion engulfed me. I suddenly understood that I had entered the very center of my human life. The reality of now.

And I cried for myself.

Later, as I mulled over this experience and its power, I realized something. Yes, I really had transcended my daily existence. I had stopped running long enough to stand with my broken heart. But there was more to it. There was an I and a Thou. The life in ruins, and the loving observer of that life.

I am both. And somewhere, in Sean’s shattered life, his soul is standing beside him too.

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.

The texture of pain

cement wallDespite the jumble of contradictory Sean sightings by the redwood encampment in People’s Park, I felt sure he had been there last night. I thought about how I had slept just blocks from him, my radar already casting its beams as I slumbered. And how he rested unknowingly nearby.

I wandered a few blocks down to Telegraph Ave., where an assortment of young street people were forming a gauntlet at sidewalk’s edge. Many had dogs sporting bandanas. A few had cloths spread on the sidewalk with odd wares: small rock and minerals samples, glass pipes, trinkets. I looked for Sean among them, hopeful in a way that he was part of this anarchist collective and not the crackheads in the park.

I stopped in front of a sweet-looking bearded man who was selling rock samples to show him my pictures of Sean. He recognized him immediately and said he passed this way daily, usually in the afternoon. And that he usually wore a straw hat, a kind of cowboy affair. I tried to imagine Sean in such a getup–he always hated hats, and cowboys for that matter. “If you just hang around here you’ll probably see him,” he said.

I pounded him with questions: How did he seem? Did he have friends? Was he okay? The young man–whose name I later learned was J.–was thoughtful in responding. “He’s a bit of a loner,” he said. “He seems a little spaced out. Sometimes he talks to himself.” My heart sank.

I was too buzzed to linger, so set off to see if I could find Sean in the streets. I stopped a vendor who was hawking a homeless newspaper. I bought one and showed him a photo of Sean. “Yeah, I just saw him at McDonald’s. He was with a girl. I think they do a bit of weed.” I asked for directions and sped off, my eyes combing the sidewalks and park benches hungrily.

As I walked past the university, I thought of my parents–who went to school there and actually met and started dating shortly after the war. Surely they had walked this sidewalk together in the ’40s, although I can’t imagine it was then full of castaways, mutterers in flip-flops, drunks sleeping it off on the sidewalk. Never in a lifetime could they have imagined their first grandchild would be among them.

I looked in vain at McDonalds, cruised Shattuck Ave.–the major commercial drag that connects Berkeley and Oakland. He was nowhere. So I circled back to Telegraph and delivered a couple of slices of banana bread I had bought for J. I chatted him up about his life on the streets and looked at some of his rocks, when he suddenly pointed and said, “Look, here he comes.”

I scanned the crowd in search of Sean and saw no one I recognized. And then I noticed him: Tall, bearded, ambling in a daze at the far end of the sidewalk. It was Sean. We looked at each other and I could feel his surprise registering slowly, grainily.

I gave him a smile, raising my hand like a TV Indian saying “How.” I walked slowly to meet him. “Hey, hi, it’s me,” I said. “You’re probably surprised to see me.” He said nothing. He looked at me coldly and his eyes were very red. “I hadn’t heard from you in a while and I missed you,” I said gently.

“Get away from me. I don’t want to talk to you,” he said and brushed past me.

Not time even to register effrontery. I caught up behind him, walking one step behind like an old-time Japanese wife. I said nothing for a moment, then began again: “I know this must be surprising, honey,” I said. “I just wanted to see you. I love you, sweetheart.” He ignored me completely, though I could feel his alertness.

He suddenly stopped short and looked me directly in the eyes. “You are harassing me,” he said evenly, “and if you don’t stop I will call the police.” He turned a corner and was gone.

This stopped me dead in my tracks. I heard a sound I’d heard before, a kind of animal noise, a howling. And then I remembered: It was a sound I’d heard during my long labor with Sean, like a wolf somewhere. It was me. Only I was so submerged in pain that I wasn’t connected to self anymore.

I howled and turned my body into the building I stood before. I could feel my forehead and fingers scratching against the roughness of the concrete. I sobbed and sobbed and sobbed.

J. came up and touched my shoulder. “Oh man,” he said, “that’s so rough.”

“Go after him,” I pleaded.

J. took off around the corner and I covered my face with my hands and cried some more, leaning against the building for support. These were tears you had to stop for and I remember wondering what people passing by were thinking, and if this were maybe commonplace amid such misery.

He jogged back around the corner and said, “I’m sorry. He gave me the same. I tried to talk to him but he was very hostile.” I fell into J. and he wrapped his arms around me while I cried. “Oh God oh God oh God.”

Preparing to search

CandlesHow do you prepare to hit the streets of an unknown city in search of a lost son? I have taken care of the practical aspects–rented another Airbnb flop (this one close off Telegraph Ave. where the panhandlers purportedly roost), rented a car, developed a Missing flyer to post on poles and bulletin boards, called the police for advice, printed off homeless resource centers and soup kitchens.

The psychic preparation is lest distinct. Once I decided I actually was going to fly to Berkeley to try to locate Sean, I noticed a new spaciness in my approach to life. It’s as if my mental CPU is very busy running some background software, leaving little free space for running the rest of my thinking. I’m probably dreaming deeply, epically, because I wake up groggy. But I am oddly calm. I wonder if this is the calmness before the storm or if I actually have entered a realm of blessed serenity.

I have a couple of mentors in my life who have been incredibly kind and smart in helping me think this through. Both have asked me to call them daily while I’m out there, which will be a good touchstone. One friend made what I thought was a brilliant point: “Make sure to make some happy memories when you’re out there. Do something wonderful for yourself.” That had not occurred to me, and I now see it as essential for keeping me from sliding into a manic mode or donning a martyr’s robe–both are habits I’m working hard to shed.

I recently wrote two prayers: one for my son, one for me. Tomorrow, I will go to a nearby chapel to light candles and dedicate those prayers. This is the deepest preparation I can invent, because whatever I may find on those streets–son, no son, drug-addicted son, loving son, angry son, mentally ill son, other peoples’ sons–I will need God’s soft mercy.

Here is my prayer for myself:

From all the souls,
in all the stars
across universes known and imagined,
I find my own self.
May I raise my voice to sing out the Lord.
May I use my hands to lift up others.
God, help me keen my mind to the truth
and soften my heart toward my humanness.
Lighten my mother’s pain,
and erase the marks of my mistakes.
Help me to trust this eternal bond:
the mother
the child
the universe unfolding
As it was, as it always shall be.
                — SF