Millions of Stick Houses

If we learn nothing else from this pandemic, we better learn to talk about mental health.

Yesterday I was on the phone with a customer service representative at Bank of America. The account I keep for my son, Nick, had received a $40 overdraft charge because his SSI payment hadn’t auto deposited in time for his rent check. Because of the pandemic. Because he is on disability. Because he couldn’t possibly hold a job. Because he has schizophrenia. Because.

The pandemic has hurled all of into an isolated, shut-away world not dissimilar to my son’s. The other day I asked my daughter, “So, who is the example of the perfect follower of social distancing rules who hasn’t changed his life one bit?” She didn’t miss a beat, “Nick!” And we both chuckled. Nick’s particular condition includes a sprinkling of OCD. “I doubt he’s touched a doorknob in ten years!” she exclaimed, and then we laughed. This may sound terrible to you, but believe me, gallows humor is all you’ve got sometimes with serious mental illness.

I was talking to a therapist recently who told me that schizophrenia is the black sheep of mental illness. I already knew that. It isn’t understandable like bipolar. It isn’t treatable like depression. It isn’t recognizable like anxiety. In a world of strangeness, it is the strangest of all. It renders its sufferers sick by attacking the very organ that would allow them to understand and seek treatment: the mind. It is a thought disorder. Think about that (ha. yes, think) and imagine someone you love becoming another person. Receding and transforming and returning in an unrecognizable form. There is a particular irony to this disease, it has a cruel joke quality.

I am very open about the situation. I decided a long time ago that I didn’t have the energy for the tap dancing that bowing to stigma requires. This wasn’t a bold or noble move on my part. It was the need for efficiency. The stress and maintenance of this circus requires everything I’ve got. Superfluous activity and emotions are discarded to make room for problem solving.

During this awful time of Covid-19, I look at my son and am struck once again by the paradox of schizophrenia. When the whole world is reeling from the drastic change in our reality, he wanders calmly through it all, unphased. Its not that he doesn’t understand, he just lives in his own immediate world. As we all are right now. And it is driving us crazy. Ah, the irony.

I explained to the bank lady on the phone what had happened. I could have said “my son is on disability” but that is vague and sanitized. I prefer sharpening the pencil more than that. Ludwig Wittgenstein said, “words are deeds.” God, I remember that from college, it put a fine point on my attitude about art, about words, that has stayed with me throughout my life. I believe that being sloppy with words leads to calamity. Misunderstanding. Tragedy. So, I say “my son has schizophrenia.” I need this to be exactly the thing that it is.

There is a slight pause and then she kindly, politely, removes the charge from his account. At the end of the conversation, at the place where she is supposed to say is there anything else, I can help you with, she instead says you know I have a family member dealing with this, it is my father. I say something affirming, give her the verbal secret handshake, and we talk for a few more minutes. I listen to her story. We don’t care if this conversation may be recorded for quality assurance. We are in the trenches. I do everything I can to make her feel that I am with her. The isolation of the family member is acrid, biting, you are all alone in your stick house, just like Eeyore. And then I think of the pandemic and realize that we are all in stick houses now.

Later that morning, on the phone with Nick’s dental office, the same thing happens. When I tell the receptionist that they need to be aware of Nick’s condition, she tells me all about her brother with bipolar. Every time I open the door someone jumps right through it.

In the sliver of space between can I help you and thank you for calling, they want to talk about it. In the tapered silence after do you want a receipt with that, they need to tell someone their story. In the moments before you say goodnight, your own child may have something they desperately need to tell you. People are afraid to open up about mental illness, but at the same time they are dying to talk about it.

Right now, the world is comprised of millions of stick houses. It won’t stay that way forever, but my mind reels when I think of the trauma people are experiencing. That trauma won’t evaporate when Covid-19 is behind us, it will stick around and degrade our well-being like trauma always does. It will be generational, pervasive and cancerous. Talking about mental health won’t just be important, it will be a moral imperative.

The pandemic has opened a door that might make all the difference. Everybody is on Zoom, we’ve shifted to virtual meetings, doctor’s appointments, therapy. The entire culture has pivoted and learned to do something new in record time. Maybe that is the door we can jump through to begin the dialogue.

When Governor Cuomo asked mental health professionals to provide virtual mental health services, six thousand volunteered. In rural and remote areas where there is a shortage of doctors, virtual therapy has been utilized, but until now “teletherapy” has been impeded by complicated restrictions. In this time of emergency, those are being relaxed. It is my hope that this will set a precedent for a whole new way of accessing therapy. We are going to need it.

Everywhere I look, I see articles about the devastating effects this pandemic will have on the mental health of our population. We live in a culture where people don’t even want to talk about mental health. We are ashamed. We are hindered by stigma. We actually go to great lengths to hide the problem. Well, I learned this lesson when my boy was diagnosed with schizophrenia. Superfluous activity and emotions have to be discarded to make room for problem solving. We have no other choice, now.

A Place in the World

I spend a great deal of time reading and listening to other people’s stories about mental illness. I belong to several Facebook groups that support families of those with serious mental illness. Every single day I read tragic accountings of mental illness and families. One woman’s son set fire to the carpet in the living room, destroying the home. Another mother recounts the shooting of her boy by the very police who were called for help. This morning I read about a young woman who, after being incarcerated for vagrancy, slit her wrists with a piece of glass. The stories are filled with injustice, unattainable medical treatment and sad endings. They break my heart.

A few weeks ago, I turned on my computer to read that the beloved son of a tireless mental health warrior had jumped off a building to his death. The understanding of her anguish brought me to my knees. At times like that I always think: “Just be grateful. Nick is alive and safe.”

And I am grateful for that. But as I navigate the waters of our overburdened and underfunded mental health system, there is a wall I keep butting up against. It is a specific limitation which needs to be addressed: Why does the medical establishment seem to stop caring about schizophrenia once the patient is medicated and compliant?

We have been to countless providers, public and private. Nick has been hospitalized for psychosis, repeatedly. I have called, pestered, begged…doctors, case workers, counselors, mental health programs…and NO ONE is interested in continuing treatment beyond the point where he is no longer disruptive, no longer a threat. In twelve years, he has never been provided with regular therapy. I understand that the initial, primary concern with psychosis is to abate the possibility of harm to the patient or others. But why is bringing those with schizophrenia (and other serious mental illnesses) simply to a state of zombie-like compliance considered a success?

Repeatedly, I witness this protocol with my son, and others all around me. Yes, it is important to stabilize the patient so that they are not a threat to themselves or others, but this should be the STARTING POINT of treatment, not the conclusion. If taking a sick person and just medicating them to the point where they are not a problem to society is the marker for success, then we should all be ashamed of ourselves.

Again, I know that there are so many out there who would gladly exchange their problems for mine. The scenarios for schizophrenia are grim. But this is where we find ourselves right now with Nick’s treatment, and it is unacceptable. Our sons and daughters who are afflicted with serious mental illness have the right to a better life. They deserve treatment that goes beyond securing society from harm, they deserve treatment that strives to restore a quality of life and meaning to their existence. The scientific world seems content with simply “containing” the disease, medicating it away so it doesn’t bother us as a culture.

For those of us who, through some combination of good luck and relentlessness, find ourselves with a loved one who is compliant on medication the frustration is unbearable. After all the battles, after all the hard work to get him to the point where he might begin to work towards a better life, he is virtually abandoned by the medical profession. Of no more interest to them, we are left on our own. I try so hard to engage him, bring him back to our world, but the side effects of the medication make it almost impossible. He will only qualify for more treatment if he experiences decompensation, new psychosis, becomes violent. I wonder how society would react if, once a cancerous tumor was removed surgically, the patient was just sent on his way, told no more treatment was available unless the cancer returned. What an absurd idea, don’t you think?

I understand that dealing with mental illness is not a simple matter. We mothers know that better than probably just about anyone else. But we have no choice. They are our children. But they are also part of society. They have a right to a place in our world. Far too often, the gravely mentally ill are left to the streets and the prisons because our mental health system is so broken. It is our obligation to meet them where they stand and, at the very least, try to comprehend. It is the responsibility of the medical world to treat them with intent to heal and respect. Seeing to this is the responsibility of the entire human race, not just the mothers.

Dying To Talk About It

Yesterday I was on the phone with a customer service representative at Bank of America. The account I keep for my son had received a $40 overdraft charge because his SSI payment hadn’t auto-deposited in time for his rent check. Because of the government shut-down. Because he is on disability. Because he couldn’t possibly hold a job. Because he has schizophrenia. Because.

I was talking to a therapist recently who told me that schizophrenia is the black sheep of mental illness. I already knew that. It isn’t understandable like bipolar. It isn’t treatable like depression. It isn’t recognizable like anxiety. In a world of strangeness, it is the strangest of all. It renders its sufferers sick by attacking the very organ that would allow them to understand and seek treatment, the mind. It is a thought disorder. Think about that (ha. yes, think) and imagine someone you love becoming another person. Receding and transforming and returning in an unrecognizable form. There is a particular irony to this disease, it has a cruel joke quality.

I am very open about the situation. I decided a long time ago that I didn’t have the energy for the tap dancing that bowing to stigma requires. This wasn’t a bold or noble move on my part. It was the need for efficiency. The stress and maintenance of this circus requires everything I’ve got. Superfluous activity and emotions are discarded.

I explained to the bank lady what had happened. I could have said “my son is on disability” but that is vague and sanitized. I prefer sharpening the pencil more than that. Ludwig Wittgenstein said, “words are deeds.” God, I remember that from art school, it put a fine point on my attitude about art, about words, that has stayed with throughout my life. I believe that being sloppy with words leads to calamity. Misunderstanding. Tragedy. So, I say “my son has schizophrenia.” I need this to be exactly the thing that it is.

There is a slight pause and then she kindly, politely, removes the charge from his account. At the end of the conversation, at the place where she is supposed to say is there anything else I can help you with she instead says you know I have a family member dealing with this, it is my father. I say something affirming, give her the verbal secret handshake, and we talk for a few more minutes. I listen to her story. We don’t care if this conversation may be recorded for quality assurance. We are in the trenches.

Later that morning, on the phone with the dentist’s office, the same thing happens again. When I tell the receptionist that they need to be aware of Nick’s condition, she tells me all about her brother. It dawns on me: people are dying to talk about it.

In the sliver of space between can I help you and thank you for calling, they want to talk about it. In the tapered silence after do you want a receipt with that, they need to tell someone their story. Wait before you say good night, your own child may have something they desperately need to tell you.

People are afraid to open up about mental illness, but at the same time they are dying to talk about it.

Let’s start listening.

Mom and Son Doughnuts

It’s heavy. It’s so heavy and I carry it every day. The responsibility. No one else can, will, shoulder it. I suppose that is fair. He is mine after all…my cells, my blood, my history. Lying in bed at night, I wonder what will happen when I am gone. What will happen to him? Who will do the laundry, make sure the surfaces are clean, remember his appointments? I don’t ever want to die and leave him all alone, and sometimes I want to die today and be free of it all. Wow. I said it.

Schizophrenia is comprised of a million little things. An odd glance that becomes something else altogether. A twitch or involuntary kick that tells the story of medicine and bodies. A glint of recognition, maybe the remembrance of love? Voices. The voices in his head, certainly, but there are voices in mine as well. Singsong, sad, taunting, my own voices remind me that I must stay alert. I have a slight edge of fear every time a phone rings, there is a knock on the door, or a letter arrives.

“My coffee maker broke,” my son announces, matter of factly, when I answer the phone.

“How did that happen? Nick!”

“It just doesn’t work anymore.”

I drive to his apartment and we go to the store, where I convince them to exchange the broken one for a new one. I drop him at his place with his new coffee maker.

As I merge onto the fast lane of the freeway, my phone rings.

“Ma, I’m just the most unlucky guy in the world!”

Oh God. “What now?”

He tells me a long, convoluted story about how the glass pot broke when he was opening the box. After all that, he can’t make coffee! I’m a half hour away by now. I don’t want to have to go back tomorrow so I turn the car around. 

I decide to see how long and how loud I can scream in one breath. I end up coughing.

As I pull into his parking lot, I notice the light falling through the lattice of the fence, inch-size boxes of light pepper the asphalt.

“I was almost home, Nick. I have other things I have to do,” I start ranting as I storm into his kitchen. “All I do in my life is run around doing things for you and you don’t even appreciate it…”

“I do appreciate it.” Loud and clear. He says this loud and clear.

“You do? Well, you’ve never told me that.”

I feel better.

These are my days. Impossible combinations of unlikely mishaps that happen on a regular basis. Impossible conversations with friends who ask sensible questions to which there are no satisfactory answers. Try to stay calm. Try to be nice. Try not to lose it.

Washing his dishes, I come across something really odd. One of the forks has been bent and twisted into what resembles a flower. The tines bent in actual curlicues. Has Uri Geller been here?

I hold out the disfigured spoon to Nick and say, “What the hell?”

“Oh, it bent.” An answer. A true answer. An unsatisfactory answer. 

When Nick was a teenager, he worked with me in my painting business. He was such a talented artist, there was nothing he couldn’t do. We worked side by side on murals that decorated the walls of restaurants and houses all over Los Angeles. He’d sit and calculate complicated geometric patterns and cut precise stencils. He charmed my clients with his gracious good manners and his cartoon dimples. We’d have lunch together and discuss his future plans, laugh about his sisters, poke fun at each other. One day, returning from lunch, we passed a small bakery in a strip mall. The sign read Mom and Son Donuts. This was exactly the kind of thing we both found humorous. I pointed at the sign and we laughed.

“What do you think, Nick? Will that be us one day? Mom and Son Donuts…” I smiled.

“Now that’s not funny, Ma,” he said.

“No. Probably not,” I turned the corner and we moved on to other things.

That was years ago, when the future was filled with unrestrained dreams. These days the idea of running a small donut shop with Nick doesn’t seem like such a failure. As a matter of fact, it would be nice.

MOTHERS::come here

Take some minutes and read. I know how much you need to hear from a mother who is completely honest about the missiles and darts of motherhood, mental illness; shitty, toxic teenagers, and the fact that, at night time, all that holds true is that you love them so completely, so ridiculously, you’d jump off the sharpest edge of the Grand Canyon in the hope of helping one of them. I know your need because it is mine, as well.

I had a son. A perfect, and beautiful and shiny boy. All the fingers, and all the toes, wild mouth like a rubber band, they laid him on my belly. I really didn’t believe there was an actual human being inside of me until I saw him. Serious, dark composure (like a judge) his brown eyes pummeled me with questions. Oh my god, the love. The semi-truck slamming into my soul, laden with unfathomable love. In a second, the earth pivoted on its axis and I was a mother.

Twenty years later he left me. Some kind of unknowable shift occurred in his brain and he was no longer with us. Schizophrenia. First: anxiety. Then: depression. Then: bipolar. Finally: goodbye, Nick boy, you have been swallowed by the rancid swamp water of the worst mental illness diagnosable. I’m at the shore; scrappy, wild-eyed, flailing arms. Why can’t I save you? Why am I suddenly irrelevant? I have a stick! I have a rope! I have a college degree, and yet you float away from me. I glance back over my shoulder and see your sisters, all three, glaring at me with the fury of injustice. “Save him, Mother.”

I would do anything to release him from insanity’s grip. Hey, God, take me! Please. Pour cancer all over me, it’s fine.  But there are no deals like that. You stand at the shore and wail. Into a vast and relentless wind. No one hears you.

Holy, moly, that sounds sad. And it is. But it is other things, too. It’s profound. It’s shockingly beautiful, sometimes. I know this isn’t politically correct, but it’s also really funny. Crazy is funny a lot of the time. If sorrow is the underbelly, then laughter is the smooth, glistening pelt above. 

So here I am, internet world. It took me a long time to get here. I am wiser now. I remember everything. I am battered and shaken and changed forever. But I know things. I have endured and accepted and learned. I am happy, yeah, I am.  Let me help.  Mothers, come here. 

How to Cut Carrots for Soup (or Another Night with the Schizophrenias)

I want to think he is sleeping peacefully right now. It is 11:06 and I am at my desk working on my computer. Things have been rocky these past few weeks. He might end up back in the hospital. Maybe he will trash his apartment again tonight. That would ruin everything, get him evicted from the nice, subsidized apartment we sat on the waiting list for two years to get. Maybe everything is already ruined. How much Valium can I give him to stave off the inevitable? How much Valium is there in the world?

I haven’t gotten any alarming texts from his caregivers tonight, so he must be calmer. I want to believe that with all my heart. I want to just slip into sleep and trust that all is well. Can I do that? Wait. A notification from the hospital lab dances across the screen. His test results are back. Hmmm. Lithium level not great yet, but at least it’s nudging at the therapeutic range. Okay. He must be swallowing the pills. It’s getting into his body. Given some more time he will stabilize. Maybe I can go to sleep.

What’s this? Another result? What is this test, something about CBC? It says he has GIANT PLATELETS. What the hell is that? 

I turn to Google. Giant Platelets? I can’t make sense of any of it. All I know is that I was going to actually lay my head on my pillow tonight with some sense of optimism, and now I have to ponder the implications of giant platelets. Is that a good thing? Like the way giant head of lettuce could make lots of salads? Or is this going to kill him? Perhaps the immensity of his platelets will damage him, cause his heart to stop beating.

When my son Nick was still inside of me, a tiny little tadpole boy swimming about, my husband and I heard his heart beat for the first time. Back in those days they didn’t do sonograms without a reason, so the mystery of an unborn child was a universe of questions. We sat in the doctor’s office as she placed the stethoscope on my belly, and the sound came whooshing through some sort of speaker. It was like the faraway repetitive slap on some distant ocean shore. My husband blanched and reached behind him for a chair, they had to give him a paper bag to breath into. He was overwhelmed by the sound.

 Afterwards, we went to a small Armenian restaurant to have lunch. I ordered soup. It was particularly delicious, and I tried to figure out why. Staring at the bowl, I noticed the way the carrots had been cut. They weren’t the usual uniform disks, graduating in size from the thick part of the carrot to the tip. They were random shapes, as though the cook had performed a wild cutlery dance, shiny blades flying. There were circles, half-moons, rectangles…little snippets of carrot that defied description. That was why the soup was so good. Something about the constellation of shapes enhanced the flavor, made it more interesting. When something arrives in an unexpected form it holds adventure, interest, mystery.

 Nick himself arrived six months later with a perfectly beating heart and filled our world with configurations of unexpected stars, some were beautiful, some had sharp edges that cut.

A Little Wind

I went to Florida with five other old bats with whom I have been friends for decades. We went para-sailing. We smoked pot and drank vodka. We went sailing. We told off-color jokes and secret stories.

I was on the boat standing up high, high, on the wood part. My clothes were whipping in the wind. I was blissful for that minute. I can be alive, I can be happy. Then this thing is not going to ruin my life (the fact that my son has schizophrenia) the fallacy, the horrible part of it, hit me in the gut. Hard. Wow, isn’t that great?I can be happy in spite of this, I can enjoy my life, I can feel the wind whip through my hair…I can. But I am not the one who is stricken. I am not the one who’s life is broken, ruined, mitigated. I bend inward with this sudden, obvious, realization: my resolution to get the most out of life and not let it wreck me is absurd. Obscene. How fucking brave of me. I can stand on a boat flying through the waters of the Gulf of Mexico and actually enjoy myself, what a hero. Suddenly I hate myself like dirt, like an inky black stain traveling over my belly, over the surface and sinking in. I gasp, I swallow air. I can’t breathe. I howl soundlessly, helplessly. What am I doing?

Thank God for the friends. Thank God for the women. What would I do? One of the friends is right there next to me on that boat. I can’t even talk for a minute. I am stunned. Then I confess.

“But don’t you see?” she says. “Don’t you see? That is survivor guilt. There is a whole pathology that already exists to explain this. And then, gently and liltingly, to the background symphony of wind and water, my friend explains survivor’s guilt to me. Something I know all about already. It sounds good. It fits. I stop crying. I open my eyes. The vista is spectacular.

At that very moment my son is in his apartment in Washington State. It is cold out, there is snow on the ground. He is lying on his bed, a mattress on the floor (because he wouldn’t let me get him a bedframe) in his clothes. He has a baseball cap on, his dirty hoody is up over his head. He is wearing his sunglasses. His hands are clasped across his chest. Three fans are on, in different rooms, at full blast. He is fast asleep.

There is not even a little wind blowing through his hair.

The Illness with a Thousand Faces

I just got off the phone with yet another psychiatrist. I spent the good part of the weekend squirreling around the internet looking for doctors. I have piles of buck slips all over my desk with pencil written names and phone numbers. I cannot accept that there isn’t a doctor out there who can help my son. My husband says I have to accept it and I scream NO, IM NOT ACCEPTING IT. He shakes his head and says something softly that I can’t hear. Don’t want to hear.

I talked for a long time this morning with Sarah, Nick’s caregiver, who works for an agency that is contracted by DHS to care for the disabled. She seems to be the only person who gets it. She is appalled when I tell her they won’t give him therapy because it is not protocol for schizophrenia. She gasps when I tell her that they have cut his time with his case manager because he won’t talk to her (an obvious feature of the disease they are supposedly treating) so they deem it a waste of time. “I talk to him all the time, no matter what,” she says. “Sometimes he smiles and once in a while he responds.” I tell her how I chatter away to him when we do errands and I believe he enjoys it. She says, “I know!” So Sarah and I will talk to him, and we will not be discouraged.

The medical professionals all take the position that as long as he isn’t harming anyone or himself then it’s a success story. A success story where the protagonist sits on a black futon in his apartment, all day every day. Interesting concept of success.

The kind doctor who returned my call has been practicing for 48 years. He tells me that the simple truth is they don’t know how to treat schizophrenia. “We call it the disease with a thousand faces,” he says, and I feel that pressing heat behind my sinuses, bearing down on my eyes, my nose…crap, I start crying.

“How can it be that we give up on a human being at 33 years of age?” I ask, my voice cracking. “How can it be that there is nowhere for him?” The kind doctor clearly feels terrible and promises to shake some trees and get back to me at the end of the week. I am grateful to encounter a person who cares, but I know he won’t find anything. No such tree exists. I’ve shaken them all myself.

Sarah and I finish our conversation by trying to figure out a protocol for Nick where we can manage his groceries and food intake because things are out of control. The world is full of doctors, psychiatrists and social workers, but when it comes to my one son and his one schizophrenia it boils down to Sarah and me. Two moms (one the mother of the patient, one a mother with a boundless heart) who must try to cobble together a treatment plan for one of the most serious mental illnesses. 

And the snow falls outside my window hiding a thousand blemishes and softening the world into a dream.

Diaphanous Motherhood

Motherhood, in any circumstance, holds so much mystery and requires such trust. Is there really a baby in my belly? Now here, will this baby breathe through the night? Is everything okay inside his body, the things I can’t see? Will cars avoid him and will he avoid dangerous strangers? Who will he be when he’s grown? How will I ever protect him?

We go forward by trusting in the good. Often, we are blindsided. I spent so much time worrying about accidents, abductions and cancer I didn’t see the red arrow aimed straight at my son’s head.

Schizophrenia. Talk about a mystery. The doctors don’t even understand it, yet Mom is expected to fathom, treat and sustain. I do believe that the once real, now metaphoric, umbilical cord helps. It binds me to him, a channel for information, compassion. But how like an astronaut tethered in space I am: floating, turning, snapping back if I drift too far away. I cannot really get inside and know what is there. I can only read his face, his small movements, the made-up words, to try and be in his world.

I watched a video on the internet that reenacted the experience of going into a convenience store as described by a person with schizophrenia. Of course, I know about the voices, I’ve read about the voices. I understood them in a theoretical way. I watched the point of view excursion into the store and listened to the terrible, terrible soundtrack. The soundtrack that shatters my tenuous agreement with peace of mind…with acceptance. I never imagined this.

The voices: a man who is aggressive and mean and… oh don’t say that to my boy. A girl who questions everyone’s motives and encourages him to do bad things. These bastards, these voices, they tell him that he’s stupid, he’s fat, everyone hates him, he’s a loser. Dear God let me at them, let me grab them by the throat and stop them, stop it…shut them up. The unseen character in the video (I see my son) retreats to the night as the cacophony in his head reaffirms his failure. I sit in front of my computer as though a large boulder holds me down, pressing on my chest.

I realize, now, that when he retreats, refuses to answer me, those voices are telling him that he is worthless, taunting him. He isn’t ignoring me or being rude. There is a soundtrack in his head. No wonder he screams “what!” in my face when I say “Nick. Nick. Answer me.” Poor child, there are actual demons inside of him. Could I even survive in his world?

The next time he fades away and then yells WHAT, I’ll soften my voice and tell him that I will wait until he is ready. I can wait forever.

Motherhood holds so much mystery. It is like a large diaphanous bubble moving through your life, making everything more colorful and a little bit more important.

A Careless Laugh

When he was a baby, and we lived in the loft, I used to dance around with him when he was cranky, or really anytime. We’d run (it was 3000 sq. ft.) and twirl, go so fast that sometimes the stroller was on only two wheels. There was a song that he loved, I loved, and that was what I’d play. Over and over. It was The Walk of Life by Dire Straights. You don’t hear it much anymore, but sometimes it comes on the radio and I always think of my careless laugh and his breathless joy, careening around the open space together, two birds of a feather. 

Today I am at his apartment fixing broken things. Not broken because they just stopped working. Broken because some unknowable frustration has had its way with them: refrigerator handle wrestled off, towel rack bent beyond return. I arrived, my flowered purse filled with tools, slot-head screw drivers, two sizes, Phillips head, hammer, needle-nose plyers, wrench. Just like all the ladies. He is very agitated these days. After the three-week stay in the hospital, where they changed up his meds because he had become psychotic, he hasn’t settled yet. I implored them to keep him through the transition. I mean, changing serious, anti-psychotic meds after ten years is no small thing. The medications are titrated (tapered off) over a period of many weeks as the new ones are introduced. There is a lag time before the new ones reach efficacy and you know if you’ve even done the right thing. I begged them to keep him in the hospital until it was done, but insurance does not think this is warranted. Take him home and deal with it, Mom.

As I remove the destroyed parts of his apartment and replace them with expensive new ones, he starts yelling at me. 

“Will you leave?” He says from the recliner chair I got from my friend Annie for him.

I try to explain that they are inspecting the apartment in two days and he will be evicted is they see all this.

He turns the television up really loud and bellows “What?”

Walking on eggshells, I continue my tasks. I feel like a small child who is going to get in trouble. He is the big, mean parent. The vertical blinds throw ridiculous prison stripes all over the apartment in an obvious effort at metaphor.

“Just LEAVE!” He yells. “Leave.”

I tiptoe into the bathroom. Wrestling with the metal towel rack, I knock over a pile of Ivory Soap bars. He switches the television over to the music station. The volume is still blaring.

I manage to get the new towel rod in without having to completely remove the brackets. Victory.

The Walk of Life begins to play in the living room. I fall to my knees. Really, I do. The guys are singing, choppy, hard beats… “turnin’ all the night time into the day.” Nick quiets down. Just like he used to. I wonder how long it has been since I’ve enjoyed a careless laugh.

Another Last Time

Falling Man oil on canvas by Miriam Feldman

Once again, I glue myself to a promise I cannot keep.

I picked him up today to go to the market. His turquoise t-shirt is filthy. Same brown pants, New Balance tennis shoes (like his father’s) and weirdly stretched out hoodie that is about a foot longer on the right side where he carries his cigarettes and keys. Today, his appearance makes me angry at the world.

He’s sluggish and uncommunicative. He doesn’t answer when I talk to him. He is pushing his right leg against the passenger door with a force that I fear will send it flying open as we drive.

He keeps asking to go to McDonalds. I surrender the car radio to him, put on my earbuds and try to drown out the eighties music rotation where he stays stuck, never to move forward. 

At the market he stands in front of the endless cereal aisle endlessly. “Nick, just pick one!” I bark as a fellow shopper glares at me because I sound so mean.  He decides he doesn’t want cereal and we move to the frozen entrée labyrinth where I know my head will explode. We argue about decaf verses caffeinated coffee until I give in. I put my foot down at stevia rather than the horse-feed size bag of white sugar he wants. I distract him with the promise of fresh berries and send him outside to smoke while I get in line and pretend I’m like everyone else. I see the lady from the cereal aisle and she rolls her eyes.

Walking out of the store he is nowhere to be found. I’m used to that. I schlep everything to the car and load it myself. My phone rings. “Hey, Ma, where are you?”

“I’m at the car, Nick, perfect timing as usual,” sarcastic and resentful. “Please get over here so we can go. I have things to do beside cart you all over town.”

“Well, just come pick me up at the entrance. I’ll be over here.”

The thing opens up inside me that I try so hard to keep locked up.

In the car I rant at him. I criticize him for eating unhealthy food, drinking too much coffee, needing to lose weight, manage his life, get a job (for God’s sake…what is wrong with me?). Out of the corner of my eye I see he’s pressing his arm as well as his leg against the car door. He doesn’t say a word.

By the time we arrive at his apartment I full-on hate myself. The groceries are in the back seat, in the trunk are two chairs I bought for him at the Goodwill. He opens the car door before I have come to a full stop, grabs his bags from the back seat and turns. I yell, “Hey, wait, what about the nice chairs I got you?”

He says angrily that he doesn’t want the chairs and walks away. It was a yell. He rarely raises his voice.

I pull out of the lot and park on the side of the road where I cry uncontrollably for a while. Once again, I’ve lost my composure and taken my twisted, fucked-up anger out on the person who deserves it least. I make a vow to myself that this is the last time.

Fifteen minutes later I return to his apartment. It is hard to juggle the two chairs along with the McDonalds bag and large caramel frappe. He opens his door and says “Hi, Ma, ooh you brought me McDonalds?”

“Yeah, and look, don’t you think these chairs will look great at your table?”

As he dives into the food I begin my rehearsed speech. “Nick, I owe you an apology. I really lost it, I guess I’m pretty stressed out. I didn’t mean those things. I love you very much. I’m so sorry I was mean.”

When he finishes eating I clear it up. “Really, Nickboy, you understand that sometimes I just get overwhelmed. You didn’t deserve that. I’m really so, so sorry,” I’m choking back tears now.

He smiles at me and says, “You know, Mom, I really don’t even remember what you’re talking about.”

Two week old Nick

Holding a Chair

So, I am in the community mental health center again. Waiting room. Nick is outside, smoking, I am holding a chair to make sure he isn’t overlooked. It’s the story of my life, these days. Across the room in a corner, a father and teenage girl huddle, speaking quietly to each other. A large pile of aging fruit is by the door with a sign above: help yourself. I wonder if that refers to the fruit or the patients. A middle-aged man with a half-hearted beard sits down next to me (in Nick’s chair) but here at the mental hospital you don’t dare disrupt anyone. I can feel the glare emanating off my body imploring him to move…I’m holding a place! I have to hold a place! Nick comes in from outside, looks for a moment at me and my companion, then walks to the far end and sits near father and teenager. Beard Guy gets up to ask the lady at the window about the holiday party flyer, which for some reason has last year’s date on it. I catch Nick’s eye and say, quickly, come sit here.

Beard Guy relocates across from us. He takes off his dirty tennis shoe to expose an unsocked, scary looking foot. “My foot hurts,” he announces to the room. A guy nearby asks what happened.

“Oh, I hung myself four years ago. When they cut me down I smashed my foot,” he says, matter of factly.

Two or three people in the waiting room nod as though this happens to everyone.

“You should get a wheelchair. I’d get an electric one, with a V8 engine!” one of the nodders says, chuckling.

“Do you think my doctor would let me get one?’ Beard Guy asks as though another mental patient would have the definitive word.

“Yes, he will.”

“Okay, then, I’ll get one.”

They call Nick’s name and in we go to see the medication doctor.

How are you feeling?

Are you sleeping?

How is your appetite?

Are you thinking about harming yourself?

How about others?

Are you hearing or seeing things right now that I don’t see?

Just the usual stuff our doctors ask all of us.

“Nick,” she says, “can you do something for me? I’d like you to count backwards from one hundred by sevens. Can you do that?” 

He stares at her and then, almost unperceptively, shakes his head no.

“How about by fives?”

He resolutely counts from one hundred to seventy-five and then she stops him.

“Good. Now could you just try to do the sevens for me?”

Very slowly, with about the same effort it would take me, he starts, ‘100, 93, 86, 79, 72, 65…”

I sit watching him out of the corner of my eye, a lump in my throat, my brain aching. He is a little boy in the school auditorium reciting his lines in the play. There is a faint furrow between his brows from concentrating. I am a young mother in a cotton dress with the future all over my smooth face.

This is on the Ganges River in Varanasi, India as we set out to send prayer candles into the sea.

Unlocked Ward

Eight days later they transfer him to the unlocked ward, he has improved. They put him on liquid lithium because he has been cheeking his pills. I can’t believe it. I check his mouth every time. The nurses chuckle softly and tell me how clever, how adept, the patients are at this. My son, the mental patient.

 So when you enter a psychiatric hospital, at the desk where your sign in, there is a bowl filled with padlocks and keys. You get your own lock and key so that you can put your purse, phone, anything of value or potential harm into your own, high school style, locker. I enter the facility holding only a tiny key to go see the person that I grew in my own body, all by myself, with all my cells and love. Walking down the super bright, clean hallway the hard metal dances in my palm, making me sweat. Walking with only a key, the thing that opens other things and secures those of value, I am a breathing, blood pumping metaphor.

 My craydar goes into overdrive as soon as I enter the Community Room, in the unlocked ward they are allowed to congregate. Good looking Latino guy making large, unwieldy origami birds out of heavy construction paper. For God’s sake, everyone knows there is special paper for origami. Those birds will never fly. Several women sit at a long table coloring in coloring books. One of them looks really normal. This cheers me up. A small man with only one eye (really?) is talking to the wall in an adjacent room. Origami Guy is now circling the room twirling the broom like a baton. My son sits, like Buddha in a Barcalounger, off to the side. He is doing nothing. 

 “Hey, Nickboy, how are you doing?” I ask.

 We have an impossible conversation in which I attempt to address the medication issue. He strongly denies any cheeking. I tell him what the doctor told me: the blood doesn’t lie. He smiles broadly as he informs me that he likes the liquid lithium, “It tastes like Tang!”

 As I open my metal locker I consider the histories of the mentally ill. So often they are artists, with a sensitivity to see beauty and connectedness in the world that the rest of us don’t have. Perhaps that heightened sensitivity makes them more susceptible to these illnesses. Their gentle brains are easy targets, like little bunnies, so vulnerable. As I walk out into the rain, I imagine the stone building behind me as a warren of rabbits, safe from the cold uncaring world.

Locked Ward

This is not a psychiatric hospital but it would be nice if it was.

I’m going to visit him in the locked ward. It’s the weekend and reception is closed, so I have to enter through the emergency room door. I can see myself in a sort of silhouette reflection with a few details. I look like I did thirty years ago: blue jeans, striped shirt, the same haircut. The undulating glass doesn’t show the lines on my face, or the fissures etched by the acid of fear in my bones. I look little.

Jeff, the handsome ward clerk walks me in to the Quiet Room, opening hallways with a plastic card he wears on a Seahawks chain around his neck. He’s from Texas but he likes the local teams as well. The hallway door clicks locked just as the ward door opens and Nick shuffles in. That door clicks locked in echo to the first.

 “Look I brought you the sushi you wanted,” I say, eager to please. His face is dark, far away. 

 “You know what? I don’t want it, I ‘m going to go back to my room now.” He says softly.

 It feels like the meanest thing anyone has ever said to me. 

As Jeff walks me out he says, “I think he’s just tired today.” I suppose breaking up all your furniture and body slamming the walls until the entire right side of your body is purple is exhausting. 

In the parking lot I sit, cemented, in my car. I consider the scrawny woman I saw in the emergency room door. That can’t be right. I’m not little, I’m big. I can twirl babies over my head, I hoisted a 6’ x 6’ beam up twelve feet with my husband because I was the only one there. Once, in a dream, I lifted a car off a small child. Why is everyone telling me I am little these days? I imagine a jagged stone flying across the asphalt and nicking the corner of the door, shattering it into a million little rocks of glass and pain and shit. The woman in the striped shirt disappears.

In ancient civilizations the people who behaved like those we now label schizophrenic were regarded as visionaries. Shamans. A circle was drawn around them in which they could live, respected, within the existing society to which they weren’t suited. A circle. Nick has a red diamond on his right wrist, covering his suicide scar. A tattoo over a scar. But isn’t the white line of the scar really just a tattoo as well? 

 Circle. Diamond. Line.

Hard Rain

Hard Rain

I’m at the end of a week in Los Angeles. I painted with my daughter, Rose, who came here from the forests of Virginia to work with me. Perfect.

I met a young man with schizophrenia who manages his own company, and founded an organization that helps the mentally ill.

I met a woman I have read about for years. She is a brilliant professor at a prestigious college, and also has schizophrenia.

How do I keep the demons at bay? They howl “why not Nick” into the branches at night. 

I had dinner with a friend whose son was hit by lightning and killed. Hit by lightning. Every time I see her, I want to rock her in my arms like a baby. Rose tells me that when a person is struck by lightning, their shoes fly into the air. 

I had cocktails with four women writers who knocked my socks off (they flew into the air).

And each day, I painted with Rose, side by side, the colors washing the white out of the walls.

I saw my family, nephews going on into the world, baby girl about to put on one foot ahead of the other and walk.

I sat with my life-long friends, laughing until our muscles hurt, tears washing the white of our eyes to pink. 

Rose told me about a friend who does silkscreen prints on tortillas. He couldn't keep them flat, so he laminates them onto old record albums. He sells them from a storefront in Silverlake that has a Craps game in the back room.

I had animated discussions about the present and the future of mental health care, about savants, society and the possibility that the voices really are God speaking.

If that is so, if it is God, what do I howl into the branches at night? What, now, is the accurate song?

Smashing

My husband and I are driving to Canada. I sit in the passenger seat, writing a story about my crazy son on a napkin.

I am the self-appointed conservator of his legacy. I have no poem, painting or song to present. Scraps of a life, one piled up on the other, form the work of art that is his story. I will continue to document it and put it into the world as long as I am here. Perhaps he is stricken, but perhaps he was just too magnificent for this world, a blazing light they didn’t have eyes to see. But I see. A mother's eyes can see. Super tough, I can look directly at an eclipse without damage. Blindness is not an option.

Driving a grey serpent of highway, we descended into a valley. Immediately, I could see the blue and red lights. It is the blue that catches your eye. We are all used to seeing red, yellow and green, but like the black and white of a police car, blue calls out: calamity. “What is going on down there?” I said, sitting taller, straightest spine. The traffic slowed as we drove, and I could see people on the median, an upside-down van, personal belongings strewn everywhere. 

"Pull over, I need to go there," I said. My husband knows me well enough not to argue. There would be no way for me to pass and not go see what I could do. It is how I am wired, I am addicted to trying to help. I need to know I tried. I want to be a hero but I never am. Nonetheless, I will jump into a river any old time. I read about a woman who was electrocuted running into water to help a man stranded in a storm, ignoring the downed power lines lapping creepily at the edges. I thought: “I would have done that.”

I grab a water bottle and open the door before we have even come to a halt. My husband admonishes: “be careful crossing…” but I am gone.

I can’t decipher the situation at first, it takes time. First, I see two women attending to...what? Oh, a little dog. “He was thrown from the vehicle,” one says, as she pours water on his head. “I’m trying to cool him off.” 

“Do you need more water?” I ask. No, they don’t.

The van is about a hundred yards further, several people lean in, wearing blue latex gloves. Where did they get gloves? The ambulance hasn’t arrived yet. The air has a very still, artificial feeling as I walk over, through the debris. Artifacts of a trip, a life. My foot smashes on a package of mushrooms. I see shoes, papers, a book, an open box of spaghetti that landed like pick-up sticks. A young woman bends over and retrieves a wallet, “Here is his wallet, now we know his name.” I wish I had found it. As I approach the car, sound reduces to a muted decibel, wind moves slowly, and I see the two people in the vehicle, roof ripped off. I think of an Edward Kienholz installation I saw at the museum in L.A., the whole world in the corner of a room. 

Kienholz left detailed instructions when he died in 1994. He was buried, sitting in the front seat of his brown 1940 Packard Coupe, a dollar bill and a deck of cards in his shirt pocket, and the ashes of his dog, Smash, on the seat beside him.

The couple in the van look pale, not just their skin, but the entirety of them is a shade lighter than the rest of the world. Arms and legs splayed out stiffly, they look a bit like big dolls. Blue gloves steadily hold a red-soaked towel against the old man’s head. “Hang on, hang on,” someone says. It sounds to me like they are all under water. The girl with the wallet says, ”His name is Fred.” The woman in the car moans that it is her shoulder which hurts.

There is nothing I can do. There is nothing for me to contribute. My fingers moving as if I could feel the air at my sides, I just stand there for a minute. The man and woman, holiday careened off-course (mushroom sauce for the pasta no longer relevant), are tended to by other drivers until the professionals get there. I consider the stillness of the tableau in front of me, and realize that I am just using up important oxygen. I return to my car.

As we drive away we pass a fire truck, siren cutting the day, on the way up to help Fred and his wife. The radio is playing one of Chopin's 24 Preludes, piano fills the car. My fingers continue to caress the air.

What We Keep

We moved Nick up to Washington two years ago. It was a forensic revelation to empty the apartment he'd occupied in L.A. for eight years. Most of it was trash, actual trash. He had surprisingly few possessions. So much has been lost, literally and figuratively, over the years. Much of it is scattered along the pacific coast, from Los Angeles to Olympia, where he attended college for a week. His paintings are safe with me. He has six pairs of Old Navy khakis and a dozen black t-shirts. Whenever we give Nick a gift, he thanks us and then hands it to me: "keep it up at the house for me, please." He lives an ascetic life.

This is why the things he has chosen to keep carry such weight. They are imbued with messages and signals. I was moved as I discovered what was still important to him, so I made an album.

Larchmont Guy (friends would take pictures and send them to me so I'd see he was well)

He owns three books.

One of his linoleum cut prints, wrapped carefully and placed in a kitchen drawer.

GANGboys

"I hope you have a better year." Rose was about fifteen.

Of everything we've given him and he's lost, ruined or given back, this is the single thing Nick kept safe and in perfect condition. It is the vintage bowling ball and shoes Craig gave him for his sixteenth birthday. He insisted on carrying them on the plane.

The train that he used to play with at his Amah's (my mother) when he was a toddler. I asked him why, out of everything, he kept this. He said: "you know, AMAH."

The "subversive" underground newspaper he started in high school that almost got him expelled. I'm not part of the herd, mister trendy man.

He kept souvenirs from every concert he and his dad went to. He stole the photo of Craig from home and kept it in his night table drawer.

I am the self-appointed conservator of his legacy. I have no poem, painting or song to present. Scraps of a life, one piled upon the other, form the work of art that is his story. I will continue to document it, and put it into the world. Perhaps he is stricken, but perhaps he was just too magnificent for this world, a blazing light we didn't have eyes to see. But I can see. A mother's eyes can see. Super tough, I can look directly at an eclipse without damage. Blindness is not an option.

Cycle World

“Text me as soon as you know what’s going on,” was the last thing Craig said as I peeled out. The caregiver had called and informed me that something was really wrong with Nick. I had to drive the twenty miles into town from our farm, for the second time that day. Goddammit. Goddammit.Goddammit. It never ends, I was thinking. Most of the time it is nothing, but you never know. I had to go.

So. It was something. Nick appeared to be totally psychotic. He couldn’t answer a simple question, and he was stumbling around. He had the crazy eyes: the gone-astray gaze that could make you believe he was listening to God’s voice. I took one look and called 911. There is no PET (psychiatric evaluation team) division of the police department out here in the country, just cops and paramedics. The police beat the ambulance there. That was not good. With the police comes the possibility of misunderstandings, conflicts, tragedy. The big shot, small town, cop was guardedly moving in on my son, hand on his thigh, near his gun. I walked directly between them.

“Officer, my son has schizophrenia and seems to have taken too much medication. He is not violent, or dangerous. He has never hurt anyone. He needs to go to the hospital.”

“Tell it to the paramedics, lady.” He looks past me.

“Well, you are the guy with the gun, and that is why I’m telling you,” I say. “He is not a threat to anyone and needs medical care.” I stand in mountain pose. I don’t look past him, I look him right in the face. He looks down.

The ambulance arrives. The paramedics talk kindly to Nick and persuade him to get on the gurney. The woman takes his vitals and then calls the guy over to the side and they whisper. A slow line of sweat moves down my back to the top of my jeans, moistening the entire edge.

They tell me his heart rate is dangerously high. He could die. How many times in a short lifetime will I hear these words? They slap an IV into the crook of his arm, slam the door, and take off into the wail of their own siren. I follow in my car, as I have learned to do. I remember Nick on our front porch when he was a boy, crouching in front of the red, red door, looking at his sisters.

At the hospital I text Craig that we are in the psych ward. I see that the phone has auto corrected psych ward to cycle world just as I push send.

I’m sorry, but standing in the dim hallway, I can’t help but chuckle. I mean, it is funny.

Cycle world: funny. Psych ward: not so funny.

The World from Above (Or Very, Very Close)

Eskimo Girl

Nick and I had a secret relationship with Rose when she was little. Most of the time she was stand-offish, and people would tire of cajoling her. She didn’t smile and twirl, didn't care about getting attention. She sauntered around in sweat pants, no shirt (if the boys didn’t have to, then why did she?), and a backwards baseball cap. Nick and I understood her. She was actually the funniest thing on two legs, you just had to give her some space. The hat she wore was his.

When she was about three and a half years old, she decided that she wanted to learn how to whistle. She’d sit at the bottom of our stairway, the epicenter of the house, pursing her lips, blowing, blowing, blowing, every day after nursery school. I’d hear that hollow, breathy sound, daily. She was really too young to whistle. I encouraged her, but it was her own determination that kept her at it.  As the light darkened into dinner time, she'd join us at the table, but for her this was little more than an intermission. She returned to practice as soon as chores were done.

"You know you’re adopted, Rose,” Nick would tease. “You are really an Eskimo. Look at your brown skin and tilted eyes.” When I asked him where in the world he got this idea, he told me she didn't look like the rest of us, a cagey smile on his face. "It's fun to tease her because she never shows that it bothers her. I'm just trying to get a reaction." I told him that wasn't nice. He told me he knew she liked it, or he wouldn't do it.

New Zealand from 24 inches above

Well, one fine day she started whistling. It had taken three weeks. Pretty soon she could whistle anything, from Beethoven to rock and roll. She could whistle like the wind.

“Hey, come here, Eskimo Girl, and whistle for these guys,” Nick would beckon. He’d bet his friends a dollar she could do any song. He was still the leader of the pack, back then, and they all fell for it. He shared the money with Rose.

She would look alternately at the ground, and then solemnly up at her charming brother, never smiling. She was happy just to be part of it, but she never let on.

Greta Garbo in a backwards baseball hat, whistling 'In A Gadda Da Vida."

When Nick was sixteen he stood, toes at the brink of a high, high cliff, full of endless potential.. Below him the landscape a verdant, mossy, rocky mystery waiting for him to figure out. He was just beginning. Inside his head: another mystery, waiting to reveal itself.

Sometimes when I am in an airplane, I see the earth configured in shapes that look startlingly like illustrations of the human brain. From high above the land resembles patterns seen also under microscopes.

Paint Stigmata

This is the story of my future. I found it in the heel of my palm, just before the wrist starts, in a place I’d never noticed before. A small line of flesh that informs my whole hand, and at the same time resists the actions of my forearm.

I am standing with my bare feet planted in dirt, and from that brown I rise, feeling taller than I really am. My arms are turned slightly outward, my shoulders are still, like a hanger hitched to the base of my skull. 

Nothing can touch me, and everything can touch me. I’m ready.

I know how to be quiet. I know how to rest.

I have dead people’s bones in my neck from corrective surgery, and a hole in my skull where a tumor was sucked out. My body is decorated in the hieroglyphics of scars, small white moons, angry chicken scratches. I’ve carried babies, lost babies, nursed babies, and cried. Paint runs through my veins, not blood. Cobalt blue, when inside, alizarin crimson as it meets the air. Yellow ochre fills my head.

I move forward from here.