Songs, Poems and other Art for Caregivers

Family
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Here’s a pair of songs summing up recurring threads that come and go on this forum, and probably will continue as long as the forum exists. The first represents the initial post, and the second is the reply.

I won’t comment other than mention the second song may sound familiar, because it was composed by Benny Andersson and Björn Ulvaeus of ABBA with lyrics by Tim Rice (Jesus Christ Superstar, Evita, etc.) It’s from the musical Chess which wasn’t particularly commercially successful, but revered in musical theatre circles. You may recall a hit song from the show in the Mid 80s by Murray Head, “One Night in Bangkok”. Most people had no idea the song is about a chess match in Bangkok.

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“Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That’s how the light gets in”

                           -Leonard Cohen
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“If you don’t become the ocean, you’ll be seasick everyday.”
-Leonard Cohen

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David Icke and the ‘lizard people’ were mentioned on another thread a while back. If you aren’t familiar with Icke or the lizard people, he’s a semi-popular conspiracy theorist from the U.K. who believes (among other things) that the world is controlled by shapeshifting reptilian alien lizard people who feed off negative energy created by humans. He was a sport commentator until he had this epiphany and started writing books and lecture touring on this and other wild conspiracy theories.

A video of the first lecture I saw of his ended with him repeating the lyrics of Boyzone’s ‘No Matter What’ which served as an anthem supporting his delusional thinking.

Most of you who aren’t familiar with musical theatre are unaware the song was adapted from Andrew Lloyd Webber’s musical ‘Whistle Down The Wind’ which in turn was adapted from a much revered British movie starring Halley Miles. In it a group of children mistakenly believe an escaped alleged murderer is Jesus Christ and vow to protect him from the adults who don’t understand. Here’s the original musical context:

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Back to Natalie Merchant again… sorry, there’s something about her cheerful melancholy that fits the struggles of caregiving and mental illness well.

A while back she revisited her album Tigerlily and re-recorded and commented on the songs. Wonder is one that stands out to me, because she wrote it about the gifts and struggles of a particular gifted yet challenging child. And people in various communities took the song to their hearts and elevated and personalized its meaning as an anthem for their challenging, yet much loved, children.

I feel an affinity to the song in a different way and especially the second verse:

‘Newspapers ask intimate questions, want confessions. Reach into my head to steal the glory of my story.’

To me, I think of it more as a lament to the difficulty and challenges of being the exception. Would I give up my hard won exceptional recovery? Of course not, but if it weren’t for the unhealthy attention that media might shower me with if I came out with my story, I might be better able to help more people achieve similar successes.

Because of this, I prefer the re-recorded down tempo version of the song.

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“I don’t consider myself a pessimist. I think of a pessimist as someone who is waiting for it to rain. And I feel soaked to the skin.”

                             ~Leonard Cohen
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Ha! Here’s a similar quote from me:

“I consider myself an optimistic pessimist. An optimist has nothing to look forward to but failure, but a pessimist is constantly surprised when things go right.”

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This one takes a little explanation:

Like many here, I’m overwhelmed by the state of affairs and filling the void with concrete tasks. I’m cleaning my home office, sorting, scanning and shredding papers while asking my smart speaker to play background music. She couldn’t figure out one request, and instead played an insightful playlist of favorite songs. Thankfully, I’m rarely paranoid nowadays so the Big Brother aspects of this didn’t worry me, but recalling one of the songs stopped me cold.

The song came to me while in danger of relapse. Like COVID-19, SZ/SZA is an unseen foe. And though the coronavirus in new and formidable, we know much about its cause and will have effective treatments in months to come. Less so with SZ/SZA, and the threat of relapse seems everpresent.

It’s human nature to personify illnesses. I think it can help caregivers to shift their thinking this way, to avoid the trap of blaming their loved ones for their symptoms. So their son or daughter isn’t lazy or mean or consumed with jealously or narcissism or rage, etc, but the illness makes them that way. I’ve said in the past that it was like SZ wanted me alone, to have me all to itself. Expanding on that, it’s like an abusive jealous lover— wanting to control you by tearing at your self-esteem, making you feel worthless and alone, thinking you can’t make it on your own, so much so that you can’t leave the house in fear that you might upset it and feel its wrath. And in this context, recovery feels like escaping a terrible and hurtful relationship, always in fear that your abusive lover might come back or you may not be strong enough not to go back to him/her.

And that’s how to me, this song speaks to me making what my first therapist called an ‘Ego Stand’ when I was last in serious danger of a relapse. Effectively telling the disease off, that I’d outgrown it and to never come back. I haven’t had serious symptoms since. Sure I have a few wobbles here and there, but nothing I can’t deal with. I hope the song helps you deal with your anger at the disease and the devastation it can bring.

Jar of Hearts - Christina Perri

I know I can’t take one more step towards you, ’cause all that’s waiting is regret. Don’t you know I’m not your ghost anymore, you lost the love I loved the most. I learned to live, half alive, and now you want me one more time.

Who do you think you are? Runnin’ 'round leaving scars, collecting your jar of hearts, and tearing love apart. You’re gonna catch a cold from the ice inside your soul, so don’t come back for me. Who do you think you are?

I hear you’re asking all around, if I am anywhere to be found. But I have grown too strong to ever fall back in your arms. I’ve learned to live, half alive, and now you want me one more time.

Who do you think you are? Runnin’ 'round leaving scars, collecting your jar of hearts, and tearing love apart. You’re gonna catch a cold from the ice inside your soul, so don’t come back for me. Who do you think you are?

It took so long just to feel alright. Remember how to put back the light in my eyes. I wish I had missed the first time that we kissed, ‘cause you broke all your promises. And now you’re back; you don’t get to get me back.

Who do you think you are? Runnin’ 'round leaving scars, collecting your jar of hearts, and tearing love apart. You’re gonna catch a cold from the ice inside your soul. Don’t come back for me. Don’t come back at all.

Who do you think you are? Runnin’ 'round leaving scars, collecting your jar of hearts, and tearing love apart. You’re gonna catch a cold from the ice inside your soul. Don’t come back for me. Don’t come back at all.

Who do you think you are? Who do you think you are? Who do you think you are?

As a side-note, the song and artist rose to prominence after a choreographer used it for a dance routine on a dance show in the US (So You Think You Can Dance). Viewers asked about the music and it was released to iTunes a week later and got nearly 50,000 downloads in a week. This was enough for the obscure artist to get signed with a label and build a career.

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I’ve been a bit down lately. Oh I’ll be fine, I’m sure. We’ve lost some musical greats lately and I’m sad about it.

It takes me back to a time when I was living alone in my first apartment. I’d moved out of my parents house, and it started to dawn on me that while it was nice to live my own life and control my environment, it was very lonely. I’d close the drapes and play sad songs on my stereo to keep me company, because the outside world was intimidating and frightening. It was very hard relearning how to make friends outside of work, and I was socially fragile and nearly agoraphobic after periodic attempts to venture out.

I’d sometime play this song while wallowing in my isolation and sadness, not knowing how I might find my way out. I’d thought about posting this song before, but was looking for an appropriate moment. And with Marianne Faithful hospitalized due to the coronavirus, it seems right. To me it speaks to the realization that caregiver and cared have that their lives are forever altered by SZ and the world outside doesn’t understand or seem to care.

As Tears Go By
Andrew Loog Oldham / Keith Richards / Mick Jagger

It is the evening of the day. I sit and watch the children play. Smiling faces I can see, but not for me. I sit and watch as tears go by.

My riches can’t buy everything. I want to hear the children sing. All I hear is the sound of rain falling on the ground. I sit and watch as tears go by.

It is the evening of the day. I sit and watch the children play. Doing things I used to do. They think are new. I sit and watch as tears go by.

Some notes about the song and performance:
This is credited as one of the first original songs by Richards and Jagger. Jagger supposedly wrote the majority of it. It was recorded by Faithfull as a B-side when she was 17 and became a hit in 1964. The video is a performance of her singing it on Hullabaloo. She was reportedly so nervous that her legs were shaking which explains why she stands motionless. The Rolling Stones recorded their own version the next year.

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The two musical greats that were lost that I’m sad about are Bill Withers and John Prine. Bill Withers died of a heart attack, while Prine died of complications due to COVID-19. Prine had been in poor health for years, so when I heard he’d been put on a ventilator, I realized it was likely a matter of time, yet I hoped for a miracle.

Both rose to prominence in the early 70’s. It was tough to escape Withers’ songs on the radio, whereas I was introduced to the brilliant but slightly obscure Prine through a set of brothers who were always doing something offbeat and crazily creative like publishing underground newspapers or shooting quirky movies or odd photo essays. Prine had a melancholy yet cheerful and humorous style to his folk/country/Americana style music that seems to fit my aesthetic. Prine had a much broader body of work, but both had songs that will continue to inspire and comfort me.

Here’s a couple of songs I think are appropriate for this forum:

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Well, I can’t say I’m down anymore. After wallowing around YouTube listening to songs and videos about John Prine, I came across a few tidbits I didn’t know. Prine was ‘discovered’ by various people including Roger Ebert and Kris Kristofferson when he was playing the Fifth Peg in Chicago. I’d heard all that, but what I didn’t know was across the street was the Second City Improv Troupe with John Belushi, Bill Murray and Harold Ramis as members. They’d visit each others’ shows from time to time.

Although Bill Murray’s cultivated an easy-going persona, he has a history of being prickly and depressed at times. I’d heard of his long-standing animosity with Harold Ramis, but I didn’t know about the Prine connection. Apparently Bill was in a deep funk and nothing seemed to make him laugh until he listened to the following song, and he credits it with bringing him out of his depression.

I’d heard it the day before in passing while skipping through playlists of Prine songs, but didn’t give it a full listen. After hearing this story, I played it again and immediately thought of @GSSP, his wife and this forum. Like Prine, @GSSP‘s humor, audaciousness and aplomb are an acquired taste, yet he can tell truths about his life no one can.

Humor is a salve we all need and it’s something I miss in depictions of SMI, aside from anxiety and depression, nowadays. You don’t see people joking about delusional people as they did on Barney Miller, or characters like Burt on Soap or Exidor on Mork and Mindy. People think we’re all too PC and wounded to take a joke, and it breeds stigma and people with SMI appear more dangerous by portraying worst case scenarios and fearful and humorless caregivers.

Linda Goes to Mars

I just found out yesterday that Linda goes to Mars, every time I sit and look at pictures of used cars. She’ll turn on her radio and sit down in her chair, and look at me across the room as if I wasn’t there.

Oh, my stars, my Linda’s gone to Mars. Well, I wish she wouldn’t leave me here alone. Oh, my stars, my Linda’s gone to Mars. Well, I wonder if she’d bring me something home.

Something, somewhere, somehow took my Linda by the hand, and secretly decoded our sacred wedding band. For when the moon shines down upon our happy humble home, her inner space gets tortured by some outer space unknown.

Oh, my stars, my Linda’s gone to Mars. Well, I wish she wouldn’t leave me here alone. Oh, my stars, my Linda’s gone to Mars. Well, I wonder if she’d bring me something home.

Now I ain’t seen no saucers 'cept the ones upon the shelf, and if I ever seen one I’d keep it to myself. For if there’s life out there somewhere beyond this life on earth, then Linda must have gone out there and got her money’s worth.

Oh, my stars, my Linda’s gone to Mars. Well, I wish she wouldn’t leave me here alone. Oh, my stars, my Linda’s gone to Mars. Well, I wonder if she’d bring me something home.

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I’m changing things up with a book/author recommendation, and a story about how the book relates to my SZ.

In my first year with SZ, I was in a noisy restaurant with some old friends from high school and I was listening intently trying to follow four or five conversations at once.

When you have SZ, often your auditory filtering breaks down and you have trouble focusing on conversations when there’s background noise. It can be hard to sort out who is talking and follow things, because it all sounds the same to you and everything seems loud and jumbled together, add in hallucinations like voices and it can be intolerable. With a lot of concentration I could follow things, but it was exhausting and confusing. Think trying to follow a foreign movie or opera when you have trouble reading the subtitles, parts of later Beatles tunes like The Walrus or Strawberry Fields Forever, the first 10 minutes of a Shakespeare play as your mind gets used to the language and iambic pentameter, or overlapping dialogue in movies like Robert Altman’s MAS*H or David O. Russel’s Silver Linings Playbook.

So in this restaurant, I appeared lost in thought to my friend and he said, “Time traveling again?” To which I replied, “Just call me Billy Pilgrim”. These were references to Kurt Vonnegut’s Slaughter House Five. I can’t recall discussing the book or being in a Literature class with my friend, so I guess he assumed I’d read the book or seen the movie. I’d been a Vonnegut fan since junior high and had read most of his books, but rarely discussed them.

Billy Pilgrim is a character who becomes ‘unstuck in time’, because he encounters space aliens from Tralfamadore and learns to perceive time in a different way, ‘time traveling’ back and forth within his life, and when a companion realizes he’s ‘elsewhere’, she asks/states “time traveling again?”

The book was made into a movie. Here’s a trailer for it:

Vonnegut’s books and short stories are often humorous, satirical and poignant with Science Fiction and narrative elements where he injects himself and crude drawings into the story. He also discusses and portrays mental illnesses in a similar light hearted yet serious light, as his son Mark had been diagnosed with SZ and later Bipolar Disorder. They tend to be short, yet thought provoking. My favorites are Cat’s Cradle, Slaughter House Five and Breakfast of Champions.

Along with Vonnegut, at times I’ve enjoyed novels by Tim Robbins, John Irving and Phillip Roth. I’m not a huge reader, but I have a habit of reading the same books over and over to help me sleep. The Lord of the Rings trilogy, The Harry Potter series, the Dune novels, the Foundation Series and Ordinary People are my go to’s for that. And for some reason, my female companions always seem to be dedicated readers— not sure why.

Any books, fiction or non fiction you particularly enjoy or are helpful to you as a caregiver?

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I really like your “go to” reading list, @Maggotbrane - probably because it overlaps a lot with mine.

In terms of my “particularly enjoy” category, I’d add Ursula LeGuin (anything but especially the Earthsea trilogy and The Dispossessed).

For “particularly enjoy” and also “potentially helpful to caregiving”, I’d say Peter S. Beagle’s “A Fine and Private Place”. The title comes from a line from Andrew Marvell’s “To His Coy Mistress”, reading “The grave’s a fine and private place but none, I think, do there embrace”. I read this book in my 20s when I was young and struggling and I have reread it periodically since then. I find the book a good one for helping me stay focused on what’s important in life.

Also in the category of a favorite from that same period of time but also relevant to me now in terms of caregiving: Barbara Kingsolver’s “Animal Dreams”. The story is told from the perspective of a father who has Alzheimer’s and his adult daughter, who has returned home to care for him. Although it is dementia rather than schizophrenia, I really love the way the father and daughter struggle and succeed to somehow mend their estranged relationship across the divide of the daughter’s long held resentments and the father’s increasing cognitive confusion (which leads him to live simultaneously in multiple periods of time across his own life span). I find it beautiful and powerful.

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@maggothead Thank you for your vulnerability and open hearted sharing about your journey. Your writing is so uplifting. Such wonderful music… Thank you.

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I haven’t read much of her work, but was introduced to her when I read “The Lathe of Heaven” when I was a teenager. Considering my years of Jungian Analysis, maybe I should dig it up and read it again :slightly_smiling_face: It was harshly critical of behaviorism and the philosophy of utilitarianism, and might be interesting to read again after studying Psychology and Philosophy in college. I recently binge-watched “The Good Place” which miraculously made the Philosophy of Ethics interesting when it was the only Philosophy class I actively hated.

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Here’s a simple song I brought into therapy at a I time when I was concerned I might slip into relapse. It’s from the musical “Rent” which prominently featured our last major pandemic, HIV/AIDS. The context is a self-help support group session.

The song consists of three questions, and my therapist said the answer to each of them relative to SZ/SZA was “Yes”, and that I’d have to be okay with this reality:

Will I

Jonathan Larson

Will I lose my dignity?
Will someone care?
Will I wake tomorrow from this nightmare?

To me it takes caregiving/self-care down to its bare essentials:

We recognise the suffering
We care about those who suffer
And we hope for a better tomorrow

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Ordinary World - Duran Duran
Came in from a rainy Thursday on the avenue
Thought I heard you talking softly
I turned on the lights, the TV, and the radio
Still I can’t escape the ghost of you

What has happened to it all?
Crazy, some’d say
Where is the life that I recognize?
Gone away

But I won’t cry for yesterday
There’s an ordinary world
Somehow I have to find
And as I try to make my way
To the ordinary world
I will learn to survive

Passion or coincidence
Once prompted you to say
“Pride will tear us both apart”
Well, now pride’s gone out the window
Cross the rooftops
Run away
Left me in the vacuum of my heart

What is happening to me?
Crazy, some’d say
Where is my friend when I need you most?
Gone away

But I won’t cry for yesterday
There’s an ordinary world
Somehow I have to find
And as I try to make my way
To the ordinary world
I will learn to survive

Papers in the roadside
Tell of suffering and greed
Fear today, forgot tomorrow
Ooh, here besides the news
Of holy war and holy need
Ours is just a little sorrowed talk

And I don’t cry for yesterday
There’s an ordinary world
Somehow I have to find
And as I try to make my way
To the ordinary world
I will learn to survive

Every world
Is my world
(I will learn to survive)
Any world
Is my world
(I will learn to survive)
Any world
Is my world

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You’re Somebody Else. By Flora Cash

I saw the part of you
That only when you’re older you will see too
You will see too
I held the better cards
But every stroke of luck has got a bleed through
It’s got a bleed through
You held the balance of the time
That only blindly I could read you
But I could read you
It’s like you told me
Go forward slowly
It’s not a race to the end

Well you look like yourself
But you’re somebody else
Only it ain’t on the surface
Well you talk like yourself
No, I hear someone else though
Now you’re making me nervous

You were the better part
Of every bit of beating heart that I had
Whatever I had
I finally sat alone
Pitch black flesh and bone
Couldn’t believe that you were gone

Well you look like yourself
But you’re somebody else
Only it ain’t on the surface
Well you talk like yourself
No, I hear someone else though
Now you’re making me nervous

Well you look like yourself
But you’re somebody else
Only it ain’t on the surface
Well you talk like yourself
No, I hear someone else though
Now you’re making me nervous

Well you look like yourself
But you’re somebody else
Only it ain’t on the surface
Well you talk like yourself
No, I hear someone else though
Now you’re making me nervous

Well you look like yourself
But you’re somebody else
Only it ain’t on the surface
Well you talk like yourself
No, I hear someone else though
Now you’re making me nervous

I saw the part of you that only when you’re older
You will see too, you will see too

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I’m going to mix it up with a clip from the show “Mad Men”.

Peggy recalls a visit from Don at a Psych Ward and he offers some good advice. I both agree and disagree with his final assessment: “It will shock you how much it never happened.” To the rest of the world maybe, but to me and to a lesser degree my family, it’s a fresh and vivid memory.

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This came up in my YouTube feed and for a while, I tried to decide how I felt about it. Should I be offended, or concerned that it wasn’t realistic etc?

In the end, I decided the only thing “wrong” about it was Ross was alone and didn’t have any true “Friends” or caregivers. I miss lighter-hearted depictions of people with SMI as harmless or eccentric that I remember from sitcoms of the 60’s and 70’s. What we’ve gained in “realism” is mostly added stigma and “heaviness”. There are all types of people with SMI, yet violence and debilitation are central themes.