I arrived at this hospital yesterday. When checking in, I told them I had been feeling suicidal. Someone put me in a wheelchair and brought me up to the 4th floor: the psychiatric ward. Someone else went through my belongings and found a pair of draw-string pants and pulled out the thin, cotton strip that would cinch around my waist. Did they really think I would kill myself with that?
Then, I was shown to my room with a single bed, the only window looking out at a drab grey building. I was told someone would check in on me every fifteen minutes. Instead of this unnerving me, I felt a great sense of relief. I felt safe for the first time in what seemed a long time.
The next day, I meet the other patients. There’s Andrea, who has obviously either been here for some time, or has come here before. She shows me “the ropes”: where to do laundry, where to shower, what time meals are. She rooms with Jasmine, who appears to be about Andrea’s age and it’s clear they have formed a friendship. One time, I hear a commotion, so I poke my head out of my room. Jasmine is in a wheelchair and Andrea is pushing her hard and fast down the corridor. They are both laughing and whooping it up and I find myself smiling a much-needed smile.
Then there’s Oscar with his droopy mustache and shuffling walk, who hangs out often with the waif-looking Toby; the two of them often having private conversations.
And then there’s Henry, who is wall-eyed and Asian, whose black, untended hair stands straight up. He can’t bear to look anyone in the eye and his whole body language is apologetic. He exudes both sweetness and confusion.
Victor is the only patient I am afraid of. He exhibits that kind of behavior that you see on the street that you want to avoid. He stands in a corner and argues with someone – someone the rest of us can’t see. Sometimes his voice becomes louder, turning to rage. Because I am so very anxious, and because there often seems to be no orderlies around, my fear escalates. I wring my hands; will he become violent? Will he unleash his violence on someone here? Me, even?
The other patients and I keep our distance from him. We all, excluding Victor, gravitate to one another, forming a kind of short-term family, while he remains a loner. I don’t know about the others, but I want it to remain that way.
But on my third day here, something changes that.
We are all gathered in the community room, including Victor. We take our places – Victor in the corner arguing, the rest of us sitting around the table, loosely interacting.
The TV is on, as usual. Today, someone has put in the DVD “Ghost”, which we look up at occasionally. Then the famous scene comes on with Demi Moore at the potter’s wheel, while Patrick Swayze comes up from behind, puts his arms around her, his hand joining hers. Then the familiar song, “Unchained Melody”, by The Righteous Brothers starts up, enhancing the scene.
Suddenly, Victor stops arguing. He turns from his corner and walks towards us and looks at the screen. He listens for a second, then opens his mouth and starts singing. His voice is full. His voice is tender. His voice is full of feeling. He knows every word, and every word is pitch-perfect. His gaze, usually hard and glazed over, becomes bright and clear, his blue black face is beatific and glows with an inner light. He is angelic.
The rest of us watch him, our jaws dropping. We are transfixed. We can’t believe what is happening. We know we are experiencing some sort of miracle.
And then the song stops – and when it does, Victor’s demeanor changes, and he turns away and goes back to his corner, resuming his argument.
For a full moment, no one says anything. We are stunned into silence. For a full moment we drop our roles (and our guard) and fall into that silence.
And then the moment passes. Patrick Swayze removes his arms from Demi Moore. Andrea and Jasmine look at each other and giggle. Oscar and Toby exchange glances. I bite my nails, my nerves returning. Henry hangs his head, as if embarrassed to be alive.
∗ ∗ ∗ ∗ ∗ ∗
Now, looking back at that incident, I realize many things. The first, most obvious realization is that music has the power to heal, if only for a few minutes. Everybody knows this, to a degree. If I’m feeling funky, I can, for example, listen to Al Green’s “Belle” and my whole mood shifts. When his beautiful, soulful voice enters the room and for some time afterwards, I feel uplifted, changed.
The second realization is that for as long as “Unchained Melody” lasted, Victor was no longer “other” – someone to be feared and avoided. For those few minutes, he became a part of our weird, dysfunctional family. He became a part of us, and we were a part of him.
For years afterwards, I thought about that incident and wondered about Victor: How did he get that way? Why was he so angry? Was it purely a “chemical imbalance”? What was his life like before he came to the hospital? Did he live on the streets? Does he now? Did he ever fall in love, have a family?
Of course, I don’t know the answers to these questions. I only know he is my brother of sorts. I know his metamorphosis made me believe in miracles. I know I want beauty to be always a part of his life.
And, wherever he is today, I hope he is singing.
Unchained Melody by The Righteous Brothers/Produced by Philles Records (1965)
Sleep deprivation creates a kind of hunger – the body can’t help but want what it needs. I think of those who are starving for food and I think there must be a similarity there; a craving that persists, no matter how much you long for it to be different. You can’t help it – you won’t feel satisfied until you get what the body needs, whether it be sleep or food or to be pain-free.
Anxiety is like that unwanted relative that shows up on holidays. She is your Aunt Sadie or Tio Julio or your cousin Tamala or your great uncle, Malif. They tell crass jokes in front of your children or talk too loud or too long or get a little more drunk than you’d like, or they don’t help out with the dishes, or they stay too long. Or, they have breath like aged cheese and spill wine on your favorite tablecloth, or eat too much and belch loudly, or complain constantly. But somehow, you know they should be there – they are a part of your family. You know they must have special gifts, but you can’t see them. You know they have something to teach you, but you can’t figure out what. On rare occasions you notice something in them that strikes you positively, which surprises you: they can sing sweetly, or they saved an animal’s life, or they once volunteered at a hospital. And so, when the next holiday comes around and they make an appearance once again, you welcome them, because after all, they are family, whether you like them or not, and there’s no changing that. Just as there is no changing that they will always rub you the wrong way. Anxiety is like that.
One day, my caregiver drives me to Ukiah – a half hour away – to go to the Social Security office. I anticipate a long wait, as I don’t have an appointment, but we get there early and only have to wait 15 minutes. When I go to the window to talk with someone, our exchange is even more brief.
I had planned to have lunch afterwards, but it is too early for that, and I don’t feel like going home. It occurs to me that I could visit Josephine, who has dementia and lives in one of the facilities in town. I tell my caregiver my idea and off we go.
I haven’t seen Josephine in a long time. I first met her in Massachusetts when I was 13 years old, about 50 years ago. She is the mother of my first boyfriend, Mark, who, long story short, ended up living with me and my family until he graduated high school. When Mark and I broke up a few years later, I ended up renting an apartment from her back east for a short time. Our families have interacted with each other over the years: Josephine bought land in the tiny town of Elk, CA, where my parents moved to, and Elizabeth, her daughter, moved there once a house was built. Josephine continued to live back east, but she came to visit Elizabeth often, and, while there, saw my parents too, and sometimes I’d make an appearance during these visits. Mark and I stayed in contact over the years and he would occasionally call my dad, whom he had made a strong connection with while living with us.
When my caregiver and I arrive at the facility, I start having doubts: Will she remember me? Why am I doing this?
Putting these questions aside, I go up to the front desk and ask the woman behind it if I can see Josephine Mitchell. She lets me know she’s in the middle of an exercise class, but it would probably be okay if she came out for a visit.
While I am waiting, I look around: The lobby looks clean and spacious, but what about the rest of the building? Does she share a room with others, and if so, how many? I don’t think Josephine had a lot of money, so I don’t know what she can afford.
In the midst of these thoughts she shows up in the hallway that leads to the lobby. I’m surprised at how young she looks. She doesn’t appear much older than the last time I saw her – probably 15 years ago. I approach her tentatively, not knowing how this is going to go. I have never been in this situation before and I don’t know how to act.
As I get nearer, I notice that, although physically she looks the same, there is something in her manner. Josephine always seemed sure of herself, confident and outspoken. Instead, the woman before me looks a little lost, a little frightened and as awkward as I feel. She has a small, uncertain smile on her face, which makes her seem young, almost innocent.
“Do you know who I am?”, I ask.
She shakes her head.
I explain my relationship with her, mentioning her son’s name. When all I get is a blank look, I add a little more: where we met, that I know her daughter, as well. But I can tell this doesn’t trigger any memories at all.
“Well”, I say, feeling foolish, “can I give you a hug”?
She shrugs and then gives a little nod as if to say, “I don’t have any idea who you are, but you seem like a nice person, so why not”?
And so, I give her a gentle hug and then we just stand there looking at each other, both of us unsure what to do next.
“Well, I guess you might as well go back to your class. It was great to see you”, I say, lamely.
When I leave, I continue to feel foolish. What was I thinking coming here? It meant nothing to her.
But, as the day wore on, I realized it meant something to me. I gave myself the gift of respecting my own memories that are still with me, as she edges towards death, leaving hers behind. Those memories connect me to an impressionable and precious time in my life that left a positive imprint, which compelled me to reach out to Josephine.
Memories link us together. When we think of someone in some significant way, it is our memories of them and what they stand for that causes us to act or feel a particular way. Somewhere deep inside of us, we sense that this interconnection leads to interdependence for all of us. Simply said – we need each other to survive and thrive.
It was also a good lesson for me to be on the other side of things. I thought that because of my own experiences of loss of memory after seizures, I would know exactly what to say and how to act with Josephine. But I didn’t. It was humbling. And it also gave me insight into what my caregivers, friends, and family sometimes go through when they struggle with how to be with me when I am feeling seizury or extremely sleep deprived or anxious. I now know how they felt.
Love isn’t always straightforward.
Relating to others can be awkward or confusing. We will sometimes feel foolish in our interactions.
But, that doesn’t matter. What matters is that we try. What matters is that we show up in difficult times. What matters is that to the best of our ability, we say and do things that add up to “I love you and I care”. What matters is that we don’t give up on ourselves and each other. We are all fools for love at some point or another; hopefully often.
While standing in line at Rite Aid, I look over at the magazines at the counter. On the cover of People Magazine is a picture of Mariah Carey, with a caption revealing she has bipolar disorder. When I reach the counter, I take a copy and set it down with my other items to buy: a notebook and my favorite pens.
The cashier ringing me up glances down at the cover.
“Mariah Carey’s bipolar?”, she scowls.
“Seems like everybody’s bipolar these days. I think it’s just an excuse. They want attention, or they’re just weak-minded. Sometimes you just got to buck up”.
I look at her tight mouth and flashing eyes and wonder about her life. Does she just “buck up” and push through? Is that how she handles the difficulties of her life?
I must have a shocked look on my face, or maybe my mouth is tightening, because when she looks at me again, she says, modifying her tone, “or maybe she is bipolar”.
“Maybe more people are coming out about it, are being braver”, I suggest.
And with that exchange, I leave.
The conversation bothers me. It’s attitudes like hers that keep brain disorders and mental illness in the closet. All chronically ill people have to push harder to go through life. Mentally ill people have the added difficulty of having a stigma attached, making it hard to feel okay about having an illness that affects the mind.
Why is it such a stigma? The brain is part of the body, not separate from it. So why do we get so judgmental or frightened about mental illness and not as much or at all about other illnesses? Unless someone is violent, it seems no point in being afraid or protecting ourselves. Are we all just frightened of losing control, ourselves? Aren’t we all trying to keep it together on some level, at least some of the time?
Strictly speaking, bipolar disorder is a mood disorder, not a mental illness. For that matter, so is an anxiety disorder. If I’m honest, I feel a sense of relief that I am not labeled “mentally ill”, because I don’t want to be lumped with “those people”. I’m not a psychiatrist, but it seems to me that there is some sort of spectrum. You have people like me on one end, and a paranoid schizophrenic on the other. Am I a better, more respectable, likeable, deserving person because I’m more functional in the world? No.
Personally, I’m happy Mariah Carey is on the cover of People, telling her story. Kanye West gives no apologies for his bipolar disorder. I’m happy Howie Mandell is honest about his plethora of anxieties, even making us laugh about them. When well-known people are outspoken about their mood disorders and mental illness, I think it encourages others to do the same. Maybe by doing so, the stigma of mental illness can slowly slough off because of their willingness and courage; to be vocal about it and be themselves.
We have a long way to go. There needs to be a lot more education about all kinds of brain disorders, until shame is ditched and replaced with compassionate understanding. Everyone can come out of the closet and not fear condemnation. We all deserve to be respected, accepted and treated well by our doctors, friends, and community. We are all part of a greater whole and deserve to be recognized as such. Otherwise, there will remain a fracture in our humanity and we will all suffer from it. And I don’t want that. Do you?
“We’re one but we’re not the same. We need to carry each other”. ~ Mary J. Blige
Dieuwke comes into my bedroom and gives me a hug when she enters. It’s always like this, every night she’s here. It’s been about 10 years since she’s been working for me as a caregiver and we have our set routines, just like any long-term relationship. After hugs, she goes on the other side of my bed, where I’m lying, and sits in the rocker by the sliding door. We catch up on our week, but our conversations are never light or superficial. When we ask each other how we are, we tell the truth. We get down and dirty. This soothes me, even when the truth is hard to take. Speaking my truth and listening to hers, releases something inside me and calms me down.
Tonight, she tells me she realizes she’s depressed. “About what?”, I ask, sitting up. I really want to hear this.
“It’s taken me awhile to figure out what I’m feeling. It’s this searching thing…”: She looks off into space as if whatever she is searching for is out there somewhere. “Nothing is fulfilling”. I furrow my brow, trying to understand. “We look for the next thing to make us feel satisfied, you know(?) We want to fall in love, or, in our restlessness, we want to move somewhere… or…” – she drifts off for a second – “but any real satisfaction we get doesn’t last long”.
This interests me. I understand what she is talking about. She’s talking about the human condition, I realize, and this I can wrap my mind around. Buddhists are often talking about this sort of thing.
“To me”, I say gingerly, testing out my thoughts and words, “this realization is actually good news, even when it doesn’t feel like it”. We both laugh, understanding.
“Yeah”, she says, her blue eyes brightening. “We’re supposed to be happy about this. When we get it that we can’t be truly fulfilled by outer experiences, we stop searching so much and go inward”.
“Yup”, I say, watching her.
“But I’m fed up with these spiritual teachings and reading books on spirituality”. She sticks out her tongue, then laughs.
“Yeah – fuck them!”, I say gleefully and laugh along with her.
The truth in not always easy. It’s kind of depressing when we remember we “can’t get no satisfaction”, at least long-lasting, in worldly pleasures. I mean I love my Rice Dream bars, and going to my book group & hanging out with my friends when I can, but when the ice cream’s done, or I come home from a gathering, there can be a subtle sort of emptiness or let-down that can come with it. That’s the kind of depression Dieuwke is talking about. Everybody feels it; just maybe not aware of it.
This doesn’t mean we need to become nuns and monks and close ourselves off from the world; like going to gatherings or doing things that give us pleasure – those of us who have chronic illness often feel cut off from the world as it is. Understanding that these things come to an end at some point, we can, for example, more-fully appreciate and enjoy the soft sweetness of ice cream or a lively conversation with a friend. In this regard, life becomes more poignant. While we are engaged in such activities, we begin to understand that there is something else that is continuous, that holds these passing experiences, that lies within them, and is not separate from them that we can depend on.
This type of awareness comes slowly and is something all of us (able-bodied or not) must go through repeatedly. We need reminding to wake up out of our reverie. And this requires patience. And it requires conscious practice. And it requires kindness.
“… the most special gift you have to offer is the living quality of your presence, the indescribable spark that makes you you. Each soul has its own multifaceted, jewel-like character, its own ‘suchness’. Even though no one can exactly pin down this ‘special something’, it’s what people love when they love you. Suchness means ‘just so’. You are just so in your way I am just so in mine. We are all just what we are, and cannot be other than what we are in the end. This is cause for celebration”.