dreams

My mom is always well in my dreams.

I am often surprised and she is not. I am often over-protective and concerned or confused - how is it that she is well?

Last night I dreamt that my older brother, who is basically estranged from her, and me, came to see her. I woke up with the language, ‘she perked up,’ but it wasn’t quite that. She was a different person. She was the mother I had as a child. She sat up in a seat with a back, her hair was much thicker and that auburn red she had my whole childhood, and she wore the subtlest red lipstick (this was out of character). My brother came in and sat behind her. They both were facing me and it was as if she had always been strong enough to sit tall in a chair, clear-eyed, and poised.

I woke up unclear about whether or not I should reach out to my brother to relay this dream. He has had no contact with her for about a year, and many years before then. He has no trust of her.

I had a dream once that I was racing around trying to grab her various resources in a kind of mad-dash and I saw her with a huge bucket filling it up with water - something I was going to do. I couldn’t understand how she could carry that water. She was strong and not sure why we were gathering all these things.

I want to believe that this subconscious persistence of her being “well” is prophecy… today, everyday, she is so unwell. I am not sure I will ever have her back but its nice to find her in my dreams.

holding patterns + punctuations

In early December we moved our mom (again). She had run through her stay at the residential treatment facility and needed to find another - more permanent - place to live. She hasn’t lived in her home since Feb 15, 2023, exactly a month off of a year. She stayed at the Residential Treatment Facility for 6 months. The average stay is 6 weeks. Her therapist there thought she might be able to continue to improve - her improvements stopped abruptly and then reversed as soon as she began to contemplate the move - in an assisted living facility. They would have group activities, meals provided, and nursing on staff. She needs all that, and much much more.

The move was terrible. She refused to accept the Mental Health team we had built for her and after 1 week had paired it all the way down to working with one psychiatrist, no companion, no case manager, no therapist. She began to worsen. We got her a caregiver against her will.

She is now about 30-35 pounds under weight. Her body is ravaged - skin dry and scabbing, bones basically visible, very feeble and shaking on her feet. She only showers when I’m there. She will go weeks refusing to shower. Is this her power play?

The first weeks following her move were terrifying- would she survive the night? How scared is she? How can we help? It consumed me and my family and some of her friends. Being with her is heart-wrenching and frustrating and being away is just as miserable.

On December 19th, I learned that a dear friend of mine died by suicide. I had no idea he was in this place. We’d been in touch recently - he was supposed to come to my birthday party and had canceled, but for good things - preparing for a museum exhibition. I knew him to be stressed but I didn’t know him to be suicidal. And then he was gone.

I spend all this time in the bardo with my mom - inside her disease, her fears, her lifeless and agonizing world - and my friend just up and did it. He hung himself in his apartment after a 2:30min call with his folks, just shy of the holidays. What!? Its like he cut a hole out of the cloth and just slipped through. His laundry was only half finished. He had food in the fridge and appointments to keep. I don’t understand. And yet, I am reminded by the certainty that it takes a fight to go out as he did. It takes a certain amount of vigor and vitality. I think he made the biggest mistake. I think if he were here to tell the tale he would be shocked and embarrased and in disbelief…and yet, I think he felt it was his only move - a move that took all his strength and courage and fear to muster. It is so heartbreaking to think about the level of pain he must have been suffering. and alone.

I didn’t talk to my mom that week.

Also in that week, I found out I was pregnant.

When I went back to see her, she was unchanged. I felt weak. I felt like a train had hit me. I was very emotional. She was not. She was frozen. She needed a shower. She needed to be forced to leave and forced to eat.

In the next week, I lost my pregnancy, on my 40th birthday.

More bardo. I did not get out of bed that day. I was barely awake.

A couple days later we went to watch the ocean. The waves were bigger than they had been all year. It was cold and the ocean was wild.

We built a little altar with shells on it for those we lost this year: Pigeon, Peter, this little pregnancy, and a rock for my mom, who for some reason is still here, stuck in the in-between,

manicure w a ghost

Was back in the Bardo over the weekend - at the nail salon w my mom.

From the outside looking in, I felt like I was getting a manicure w an apparition of my mom. The salon employees only spoke with me, even though she was right there and is capable of answering for herself. She decided on no polish, just had her nails trimmed and buffed. Her poor figure is so frail and thin. Her clothing is nearly hanging from her frame. Her hair continues to thin and mat on her scalp, the silver pouring now down to her ears at least. Her expression is, essentially, unchanging. Lips straight, brow furrowed, eyes in a stare. She barely speaks, and when she does it is nearly inaudible and is to say something, almost certainly, is wrong.

It was heroic and brave for my mom to agree to have her nails done with me. But did she agree to it or was she coerced, convinced, swayed into going? Does it matter? I picked her up. She participated, fundamentally. As in, her body was in the seat, her hands and feet were worked on by the technicians. We went to lunch. Wordlessly, she ate her whole lunch. She apologized for being poor company. I also held silence, as there are so so many things I cannot say, will no longer fight over, or am simply too tired of hearing myself say.

I miss her so much and she is right in front of me. I miss her so much and I’m not sure I’ll ever see her again.

trading places

Another transitional passage is upon us. Mom has to leave her current residential treatment and move somewhere else. Somewhere else then somewhere else then somewhere else. In a way, this year, she’s been on her own type of diaspora - forced to move from her own home and then not finding home or rest or refuge anywhere else, moving, fleeing, over and over.

After we toured the assisted living where she may move to next, my mom and I took a walk. On the walk she described feeling that there’s nowhere for her to fit in. That she wants to be better but sees no way out of this. At the assisted living she said both, ‘what makes you think I’m gonna move in here?’ and ‘if I move to any place like this, it would be this one.”

On our drive back to the residential house, she looked out the window at the handful of pedestrians walking around the neighborhood and said, “I see them and think, I would do anything to trade places with any one of them.” She wants to be better but doesn’t want to be herself - this self.

How do we find acceptance? Both my mom and I want her old self back. And both of us are afraid we’ll never see her, know her, again. Not sure how we got here or where we are going next. I am worried about this transition too.

I’m thinking about the word refuge - a condition of feeling safe or sheltered from danger or trouble. I want this for my mom. I want this for all of us.

The persistence of being dead but also alive + High holy days 2023 marks 1 year

Over and over my mom has talked about the many things happening to her body that are happening because, in some way, her body is not still living (even though, in another way, these are all signs of life): her nails growing, the hair on her legs growing, her organs (eyes, colon) failing, and so on. She’ll say its not worth going to see this doctor or that one to try to seek help because the problems will just keep moving throughout her body - and eventually, they’ll stop. She doesn’t want to see anyone or go anywhere because she doesn’t want to be seen in the shape she is in - the shape of a dead person. She doesn’t want to wash her hair because, one more wash, and it will all fall out.

Last week I went to visit her on Rosh Hashanah with my partner. I brought her apple and honey so she could celebrate the new year with us - even if from this compromised place. She has started a new drug and in some meaningful ways, I have seen some improvements: she told me she was bored. I was stunned. For her to be bored means her mind would have to pause its endless looping of ruminations for long enough for curiosity, interest, boredom, to appear. I was very happy to hear this.

Also, she read a book. A whole book, in a weekend. She hasn’t read in a year. She has said her eyes don’t work, they’ll stop working in a few days, she can’t read headlines etc. She read a book. She doesn’t yet feel these gains though: I asked her about the book and she said that, yes, last weekend she read a book, but by next week she won’t be able to see, so it was the last one. I told her, I thought it was great and hoped her vision didn’t degrade so fast and she could read another.

She enjoyed the apples and honey. She expressed gratitude for the sweet treat, saying it made her feel like she was able to celebrate even a little. Last year Rosh Hashanah marks the start of my moms depression, from my standpoint. We went to services together but she wanted to leave early and miss some of her favorite songs - something I’ve never known her to want. We met my cousin for lunch later and she was consumed by her thoughts. She tried to tell him what was going on, and he tried to assure her it would pass…but she was already so lost in those thoughts. With a couple weeks we had learned more than anyone should have to about IOP (intensive outpatient programs), residential, and in-patient treatment facilities.

My new year prayer is that something in this recovery attaches for her, something she can hold onto, and that some light appears, that she may walk into. I pray for that for her as well as myself.

Some new delusions in the mix:

• they must be charging her for water

• all of the skin on her face has flaked off leaving her with baby skin like a chemical peel without the peel

that feeling when you are trying to coordinate a last ditch family intervention and you accidentally include your mother - she who needs the intervention - on the text thread. I wrote describing the plan for this weekend’s visit to try to get her to come around to ECT and asking family if they would write her a loving letter that I would hand deliver. About 20 texts flew between my uncle, her brother, and myself before he realized that she was on this thread.

How am I supposed to feel about this? There is nothing that she doesn’t already know. But also, now she might decide to cancel the visit. She might feel trapped, unloved, scared…I don’t really know. I know I don’t have a rewind button. This happened. It’s not a big deal. And if it is, so be it. Time to let go.

hair and nails

Two of the last three times I’ve gone to visit my mom she’s pulled up her pant leg and shown me her dry skin and the long and kind of squiggly and smushed thin dark hairs growing on her shin. She’s shown me her not-quite white and not-quite yellow unpainted nails, and said: they’re growing like hair and nails on a dead body.

I tried to say, they’re growing like hair and nails on a living body, but she rolls her eyes.

What does it mean to feel like you’re not alive? Like your body is operating without a driver. I think about this sanskrit word for heart, anahata, I learned that it translates to the “unstruck drum.” The idea that while you are living, the heart will keep beating, all on its own, without a player the rhythm of life is kept. The context in which I learned the word though, was a context of embracing the miracles of life - like, what a goddamn miracle that my heart will beat and beat and beat and all I have to do is live.

This is not how my mom understands this idea today. Today, I think a large part of her is wondering why in the world her heart keeps beating because she is not living. Her body continues to operate these biological mechanisms - heart beating, lungs pumping, food digesting (tho she actually would argue this point), sleeping, waking, and so on - but why? And who is this person?

She let me cut her nails on one of these visits. It felt like a kindness for both of us. I asked the facility staff for a nail clipper. Anytime you ask them for anything, everyone disperses and spins around like you’ve just stirred the pot and its about to boil over. They gave me the clipper. I got to hold her hands. Her hands are still so soft. My mom has always applied lotion to her hands with near OCD diligence - after every bathroom hand wash, comes lotion. And boy does it make those hands soft. Her fingers lay over my palm so gently, long, and kind of limp. Her nails have always been healthy and tough, unlike mine which are bitten and chewed, at the ends of strong and toughened hands.

I told her I wanted to be her friend through this. I didn’t want to keep fighting, arguing with, or pushing her. It gets no one nowhere. But I worry a good friend would never stop fighting or pushing. There is no map here. It feels like dead ends only for me. I decided not to visit last weekend and felt guilt and guilt and guilt instead.

At one point my partner suggested we stop over at her house to collect ourselves, rest, and clean up before the next part of the day - we were nearby. I immediately felt like I might throw up. We drove the 90 minutes to our house instead, where I put my head down at 4pm and fell asleep.

cutting the bamboo

Recently someone asked me if my mom was suicidal. I had what was kind of a flash realization about my understanding of suicidality. This realization likely does not apply to all circumstances, so if you are reading and you disagree with me, please take this as from my own experience alone.

In that moment, I thought, you have to be in some kind of relationship with life in order to have the strength, vision, capacity, to end your own. I had the thought, that in some way, a suicide is a declaration of the self not letting the depression win. Yes, its awful, its devastating, its the wrong way. But in that moment I realized that my mom was not suicidal because the depression had killed her a different way - it had kind of subsumed her and taken over her body, like a demon. The longer it could thrive in her, the bigger it would grow and the smaller she would become. At that point, she was barely recognizable to me. She didn’t care enough about life to end hers. Does that make sense?

She stares straight out. She doesn’t maintain basic hygiene, she wasn’t eating. Her body was beginning to deteriorate in other small ways - an old damaged nerve had gone haywire and her left hand was left basically useless, and so on.

I don’t think of this person I describe as my mom. My mom is my hero. She is an activist, an athlete, a driven, witty, loving, courageous woman. The person in front of me is not a person, it is a disease wearing my mothers skin, looking out from behind her eyes. Its something I’ve never experienced before and wish on no one.

The bamboo.

The bamboo is the density of it. I cut and cut and cut this damn plant and it is literally growing up from beneath my feet faster than I can take it down. I can’t see through it. I can’t cut through it. It keeps coming back.

paint the fence

Things I can do:

• paint the fence

• walk the dogs

• drink tea

Things I can’t do:

• sleep

• be social

• make “art”

I’m worried about when the fence is finally done.

ungodly hours

When I was in high school, my best friend used to attend a lot of raves. I think I went to one, maybe two. I have a vague memory of someone declaring that the hours between 2-4am where the “ungodly hours.” I find myself inhabiting these hours now, and understanding with new clarity, the term.

Firstly, I don’t want to be there. I don’t want to be awake. I feel far from my body and I feel far from my mind. I feel far from any type of loving god.

In recent years I have prided myself on having nimble facility and control - for lack of a better word - over my mind. I’ve been a meditator for years and overcame my own chronic pain with deep connection to my mind and my ability to redirect it away from danger, panic, or pain. At times I’ve felt like my own personal superhero - able to navigate stormy waters by holding steady to the wheel of the mind.

These days though, in the ungodly hours, I’m up against it all and I am powerless. It’s like watching an IMAX presentation of all my greatest anxieties, frustrations, fears, and angers. Though more than IMAX, it pours into my body, filling my limbs with the heat and restlessness of anxiety - did I check the front door? has my old dog had an accident? do I need to pee? and so on.

Mostly I am playing out a conversation with my mother. Lately, it’s all blame. Lately, I wonder if the tool I have used least to motivate change in her, the tool of blame and shame, might actually work. In the ungodly hours, I tell her she / her disease is ruining my life. I tell her I feel lost, I feel far from my friends, I feel further even from my work. I tell her I’ve lost my best friend to this disease. I tell her I miss her and I miss my life. I tell her this disease is not just happening to her. She is not as isolated as she thinks.

And then the ruminating continues, and suddenly I am mad only at myself: how could I let her disease affect me so harshly? Why can’t I separate us? I have to pull myself together. I have to hold better boundaries, I have to exercise, I have to get back to work. Another type of shame cycle.

All the while, in the front of my mind I am counting breaths. I am trying to follow a body scan to relax myself into sleep. I am hoping my partner will throw an arm over me for its comfort and its weight. But I don’t want to drag his deeply sleeping self into this storm with me. And I just want to cry. I want to kick and scream and cry because I feel so weak against this that comes for me in the ungodly hours.

now that im here

there are some things I want (and don’t want) to remember:

• that thing Dr Max said about the survival brain vs the creative brain - that when the survival brain is active the creative brain is suppressed, impossible to access. That you need space and safety to feel creativity flourish.

• the fact that my moms signature still looks the same. when she writes it now, although she says she can’t read or write anymore.

• how many charities send her mail for a next donation

• how the word HOPE on the HOPE Unit sign was missing on the placard outside my mom’s unit

• the peeling wallpaper in the hospital meeting rooms

• what her eyes look like filled w pink eye'

• anxiety as restlessness

• her matted hair, grey growing in marking this time like a strange lengthening band of her depression

• her crooked and small body the first to walk onto the plane after being wheeled to the gate

• how when I write a postcard I still feel a little like I can speak to her as I did before

• dreams and journal entries

• drink her up and fill my body

• mother daughter mirror - future/past mirror

bottom of a page of notes from my moms kitchen, 10/4/22

a car crash

had a dream my mom was behind the wheel of a car, looked directly into my eyes, and drove straight into her house.

what is the bardo?

(in Tibetan Buddhism) a state of existence between death and rebirth, varying in length according to a person's conduct in life and manner of, or age at, death. - Oxford Dictionary

I had begun reading Pema Chodran’s book, How We Live Is How We Die, last winter. It describes this beautiful and sacred space of limbo between death and rebirth.

In the year before, I read Lincoln In The Bardo, by George Saunders, which tells the story of Lincoln from the point of view - in a way - from the ghost of his son, after his death, as well as other ghosts in a cemetery.

Most recently, I read Unlikely Animals by Annie Hartnett, which also tells a story of life, love, and death, told from the voices of ghosts in the cemetary.

Why, how, are we in the Bardo now?

This is hard to explain. I feel like my mom has died and is in this strange precipice between a forever death - of body and soul - and rebirth into a new life, new form. This limbo, for her though, is full of pain and insecurity, fear, and isolation. I know that there is a world wherein she is reborn and can become free. What I don’t know of course, is if she will find her way there - through the cemetery, through the anguish, shame, fear. Like so many wise souls who came before her, she has to stand with her darkness, her greatest fears, and know peace - like the Buddha and the demons of Mara. Can she? Will she? Where is she now?

From Inside The Bardo

Hi,

This is an image of the teeny tiny back brace my mom wore last month after recovering from emergency back surgery after falling walking from her bathroom to her bed, while a resident in a mental hospital in Texas. I had to take this picture in order to have a record of it as we were getting into the car leaving this facility, only to bring her to the next facility, back in Los Angeles.

I am a natural born communicator and I’ve felt the poison of secrecy spreading through me in the last year, as my mom has been sick, and as both she and my family members have insisted on hiding much of the severity of her illness. I feel like I’m going to burst, though. I feel like a soda bottle thats been shaken and the cap just screwed more tightly on. I feel isolated in nearly every way - family, work, social world. I’ve barely shown up to events or followed through on social commitments all year. I am always tired. I am often angry. I am desperately sad about my inability to make “art.” I am trying to exercise, to talk with those closest to me, to go to my own recovery program, and to not completely fall apart…all the time.

I am starting this blog - I can’t believe I just wrote that sentence - in order to have an outlet for my experience. I have no idea who will see this. And I am terrified of upsetting my family members with anything that I write. I’ve been told, this is not your story - this is her story. And yet, this has become my life. Everyday, I receive messages from my mom’s friends and family, doctors, social workers, admissions people, and so on, needing something from me. Nearly every night I have nightmares. When I am with her, I become strong, clear, her protector and when I leave I feel adrift and angry. She has refused to communicate with anyone but myself and my brother for nearly 6 months.

Last October, my mom fell into a deep depression. Her second major depression in her life. The first one was when I was 8 years old. She was hospitalized for 6 weeks and recovered with the help of SSRIs. She had a stable and rich life for the subsequent 30 years. As lockdown restrictions began to lift in 2021/2022, she began to slip. The metaphor I’ve been using lately is of a basketball that she was dribbling. She lost control of the ball and it began to roll down the street, and off a cliff. She couldn’t recover herself - and neither could we.

In some ways, I feel I went down with her - but in others I don’t think so. I know that what did happen was, my brother and I became her parents. As best we could - without being legal guardians - we took over her finances and her healthcare. We have had to work together like never before. We have fought more than I knew we ever could. And I have felt his strength and hopefulness through it all.

I hope that this “blog” will find its legs as my own creative expression - not for anyone specifically - or maybe for caretakers and the adult children of parents with mental illness.

thank you

Cara