Before: there were certain words and phrases that felt that they carried some weight and had some purpose beyond their direct on-the-page meaning.
They contributed towards the pervasive feeling of hope and faith that sustained us for many years and helped us to have such wonderful memories of Shani whist she was growing up.
Some of them were songs and some were prayer words - all of them made me think that there was a way ahead, that there was light to fight for.
They were words and prayers that had a lot invested in them.
They had a meaning and a healing strength that we thought might do something miraculous.
Maybe they did for a while.
After: the words changed and twisted on the page and they no longer felt the same - they no longer provided sustenance and optimism, they didn't help; they just felt full of pain, anger, failure and sad.
But in their place, other words appeared.
Some of them provided a way to articulate the pain, anger and loss.
Others attempted to find a way to address how on earth this could possibly have happened, or to stay connected to Shani in some small way.
And others just felt like they should be said.
Before
Hoshana Shoshana: on Succot we say the Hoshanot, the prayers that ask for us to be saved from a bad judgement.
We circle the synagogue holding the lulav (palm) and etrog (citrus) and chanting Hoshana, Hoshana.
The only thing that I wanted to be saved was Shani and so adding her Hebrew Name to the chant just felt right. Hoshana Shoshana, Hoshana Shoshana, over and over again until sometimes if felt that it might make a difference.
Na'aseh Nes L'Shoshanim: the daily Chanukah candle lighting at home ends with the last verse of the Mo'atzur song, the verse about the Chanukah story itself and all of the miracles that we celebrate every year.
The verse includes the words 'Na'aseh Nes L'Shoshanim', translated as 'He made a miracle for the Jews who are called shoshanim (roses)' but which I translated in my head as 'He made a miracle for the Shanis' in hope that he might.
B'chol l'vavecha, ov'chol Nafshecha, ov'chol M'odecha: The first paragraph of the Shema, the central prayer in the Jewish religion, includes these words which mean 'with all your heart, and with all your soul, and with all your might', referring to the ways in which we should love God.
For me, this became a three-fold plea for Shani, that her heart becomes physically fixed and whole again, that her life and soul is saved and complete, and that she has the strength to enjoy and experience a full and happy life.
Both a prayer that the medical team behind her would work out a way to heal and fix her, and that she herself would keep fighting and stay strong.
M'varech HaShanim: One of the 18 blessings in the Amidah, the prayer at the core of each service, is to bless this year and coming years. Except that the word for years is exactly the same as the plural form of Shani - blessing the Shanis became another chant that kept me going and believing that perhaps someone was looking out for Shani and maybe the dark clouds would continue to stay on the horizon and come no closer.
Before
Hoshana Shoshana: on Succot we say the Hoshanot, the prayers that ask for us to be saved from a bad judgement.
We circle the synagogue holding the lulav (palm) and etrog (citrus) and chanting Hoshana, Hoshana.
The only thing that I wanted to be saved was Shani and so adding her Hebrew Name to the chant just felt right. Hoshana Shoshana, Hoshana Shoshana, over and over again until sometimes if felt that it might make a difference.
Na'aseh Nes L'Shoshanim: the daily Chanukah candle lighting at home ends with the last verse of the Mo'atzur song, the verse about the Chanukah story itself and all of the miracles that we celebrate every year.
The verse includes the words 'Na'aseh Nes L'Shoshanim', translated as 'He made a miracle for the Jews who are called shoshanim (roses)' but which I translated in my head as 'He made a miracle for the Shanis' in hope that he might.
B'chol l'vavecha, ov'chol Nafshecha, ov'chol M'odecha: The first paragraph of the Shema, the central prayer in the Jewish religion, includes these words which mean 'with all your heart, and with all your soul, and with all your might', referring to the ways in which we should love God.
For me, this became a three-fold plea for Shani, that her heart becomes physically fixed and whole again, that her life and soul is saved and complete, and that she has the strength to enjoy and experience a full and happy life.
Both a prayer that the medical team behind her would work out a way to heal and fix her, and that she herself would keep fighting and stay strong.
M'varech HaShanim: One of the 18 blessings in the Amidah, the prayer at the core of each service, is to bless this year and coming years. Except that the word for years is exactly the same as the plural form of Shani - blessing the Shanis became another chant that kept me going and believing that perhaps someone was looking out for Shani and maybe the dark clouds would continue to stay on the horizon and come no closer.
Yedid Nefesh: On Friday nights we sing the beautiful song Yedid Nefesh, Beloved of the Soul, to welcome in the Sabbath. It used to give me so much hope, particularly from the second verse that talks about healing and strength. Now there is just pain and failure.
Please, O God, heal her now (אנא אל נא רפא נא לה)
by showing her the pleasantness of Your radiance (בהראות לה נעם זיוך)
then she will be strengthened and healed, (אז תתחזק ותתרפא)
and eternal gladness will be hers. (והיתה לה שמחת עולם)
Outside of the world of prayer, there were a few lyrics that really spoke to me and provided a little bit more strength and hope.
Rule The World became a special song five years ago when Shani was first very ill and hospitalized and told that she wasn't going to make it.
In particular, the final verse about lighting up the sky seemed to me to describe the amazing support we received from all over the world - people that we didn't even know singing psalms for Shani's health.
Rule The World, Take That
You light the skies, up above me
A star, so bright, you blind me, yeah
Don't close your eyes
Don't fade away, don't fade away, oh
If walls break down, I will comfort you
If angels cry, oh I'll be there for you
You've saved my soul
Don't leave me now, don't leave me now, oh
Yeah, you and me, we can ride on a star
If you stay with me, girl
We can rule the world
Yeah, you and me, we can light up the sky
If you stay by my side
We can rule the world
Oh, all the stars are coming out tonight
They're lighting up the sky tonight
For you, for you
All the stars are coming out tonight
They're lighting up the sky tonight
For you, for you, oh
And of course, Magic by Coldplay just encapsulates everything that was awesome about Shani.
Magic, Coldplay
Call it magic, call it true
I call it magic when I'm with you
And I just got broken, broken into two
Still I call it magic, when I'm next to you
And if you were to ask me
After all that we've been through
Still believe in magic?
Well yes, I do
Of course I do
After
Suddenly the magic of the words before felt like curses.
They felt wrong and dirty, words I wanted to spit out rather than drink in.
They couldn't be said anymore - they only led to tears.
In their place were other words, words of anger and despair but also of comfort.
Words that had no power to save but could at least be said.
Salachti Shoshana: The dread of Rosh Hashana and Yom Kippur combined with the prayer for salvation and now seems to cry for forgiveness from Shani herself. I won't ever know whether there was anything that we could have done differently to stop Shani from dying, any intervention that we could have made, anyone extra that we could have brought in, any question we could have asked, but if there was we didn't, and actually we know in reality that there probably wasn't.
However, that doesn't stop me from feeling regret that I didn't do anything more.
UMa'avir Yom UMai'vei Lai'lah: Just before we say the Shema in the evening, there is a prayer about God controlling the heavens, and switching from day to night, which I used to think about in astronomical terms as a confluence of religious thought and the ongoing workings of the cosmos.
Now, on closer inspection, it presents a different meaning.
The words talk about rolling away the day and bringing on the night, blessing God for the night, the dark, the time of sadness and the absence of light and cheer.
Night time is sadness and sorrow.
Pslam 6: If nothing else, at least my thoughts and feelings have a way to be defined, and there is some relief to find that others have trodden similar paths of despair.
Heal me Hashem for my bones shudder, my soul is utterly confounded.
I am wearied with my sigh, every night I drench my bed, with my tears I soak my couch.
Alongside these prayers, there are some songs that speak to similar themes.
These first two helped me to deal with Shani's last few days, the distress and uncertainty of hospital life and the continued strength and wonderfulness that she always showed.
Long, long hours sitting and walking needed some inspiration to keep the hope going or at least to help to articulate what we were feeling.
As I think I said before, and as I said to the Shani's Coroner, Magnificent sums up Shani in one word, and the song lyrics speak to how much of an impact she had on the world and how she carried on loving life throughout her short but fiery life.
Can't find my way home, Eric Clapton and Yvonne Elliman (originally by Steve Winwood)
Come down off your throne and leave your body alone - somebody must change
You are the reason I've been waiting so long - somebody holds the key
Well, I'm near the end and I just ain't got the time
And I'm wasted and I can't find my way home
Magnificent (She Says), Elbow
This is where
This is where the bottle lands
Where all the biggest questions meet
With little feet stood in the sand
And this is where
The echoes swell to nothing on the tide
And where a tiny pair of hands
Finds a sea-worn piece of glass
And sets it as a sapphire in her mind
And there she stands
Throwing both her arms around the world
The world that doesn't even know
How much it needs this little girl
It's all gonna be magnificent, she says
It's all gonna be magnificent
The echoes slow
The bottle lands
The echoes slow
And there she stands
But afterwards, those two songs were not enough. In fact it was months before I could even listen to Magnificent again. I think it was when it was used as an instrumental backing track to Wimbledon highlights that I was felt able to go back. Even now it's a difficult one to listen to.
A Long December was chosen by Sheryl Sandberg, COO of Facebook, writer of Option B a wonderful book about dealing with grief and trauma that she wrote following the tragic and sudden death of her husband, as one of her Desert Island Discs.
It also happens to be a song by one of my favorite artists.
She said that, due to the immense hope that she felt they provided, the first two lines were perhaps 'the most important line to me that was ever sung'
I'm inclined to agree.
A Long December, Counting Crows
A long December and there's reason to believe
Maybe this year will be better than the last
I can't remember the last thing that you said as you were leavin'
Now the days go by so fast
And it's one more day up in the canyons
And it's one more night in Hollywood
If you think that I could be forgiven I wish you would
The smell of hospitals in winter
And the feeling that it's all a lot of oysters, but no pearls
All at once you look across a crowded room
To see the way that light attaches to a girl
And it's one more day up in the canyons
And it's one more night in Hollywood
If you think you might come to California I think you should
Drove up to Hillside Manor sometime after two a.m.
And talked a little while about the year
I guess the winter makes you laugh a little slower,
Makes you talk a little lower about the things you could not show her
And it's been a long December and there's reason to believe
Maybe this year will be better than the last
I can't remember all the times I tried to tell my myself
To hold on to these moments as they pass
And it's one more day up in the canyon
And it's one more night in Hollywood
It's been so long since I've seen the ocean I guess I should
I stumbled across Walk The Same Line when looking for songs by Everything But The Girl beyond the album that I already had.
They sing so beautifully and this song spoke volumes about the support we get from close friends and family, and for me particularly from Juliet.
When we lose faith, others can step up and provide some for us.
When we're lost, our community is there to help start finding the way again.
Without that I'm not sure how I'd have made it through to the end of this godforsaken year.
Walk The Same Line, Everything But The Girl
If you lose your faith, babe
You can have mine
And if you're lost I'm right behind
'Cause we walk the same line
Now I don't have to tell you
How slow the night can go
I know you've watched for the light
And I bet you could tell me
How slowly four follows three
And you're most forlorn
Just before dawn
And so, if you lose your faith, babe
You can have mine
And if you're lost I'm right behind
'Cause we walk the same line
When it's dark, baby
There's a light out shinin'
And if you're lost I'm right behind
Cause we walk the same line
And I don't need remindin'
How loud the phone can ring
When you're waiting for news
And that big old moon
Lights every corner of the room
Your back aches from lying
And your head aches from crying
And so, if you lose your faith, babe
You can have mine
And if you're lost I'm right behind
'Cause we walk the same line
When it's dark, baby
There's a light out shinin'
And if you're lost I'm right behind
'Cause we walk the same line
Please, O God, heal her now (אנא אל נא רפא נא לה)
by showing her the pleasantness of Your radiance (בהראות לה נעם זיוך)
then she will be strengthened and healed, (אז תתחזק ותתרפא)
and eternal gladness will be hers. (והיתה לה שמחת עולם)
Outside of the world of prayer, there were a few lyrics that really spoke to me and provided a little bit more strength and hope.
Rule The World became a special song five years ago when Shani was first very ill and hospitalized and told that she wasn't going to make it.
In particular, the final verse about lighting up the sky seemed to me to describe the amazing support we received from all over the world - people that we didn't even know singing psalms for Shani's health.
Rule The World, Take That
You light the skies, up above me
A star, so bright, you blind me, yeah
Don't close your eyes
Don't fade away, don't fade away, oh
If walls break down, I will comfort you
If angels cry, oh I'll be there for you
You've saved my soul
Don't leave me now, don't leave me now, oh
Yeah, you and me, we can ride on a star
If you stay with me, girl
We can rule the world
Yeah, you and me, we can light up the sky
If you stay by my side
We can rule the world
Oh, all the stars are coming out tonight
They're lighting up the sky tonight
For you, for you
All the stars are coming out tonight
They're lighting up the sky tonight
For you, for you, oh
And of course, Magic by Coldplay just encapsulates everything that was awesome about Shani.
Magic, Coldplay
Call it magic, call it true
I call it magic when I'm with you
And I just got broken, broken into two
Still I call it magic, when I'm next to you
And if you were to ask me
After all that we've been through
Still believe in magic?
Well yes, I do
Of course I do
After
Suddenly the magic of the words before felt like curses.
They felt wrong and dirty, words I wanted to spit out rather than drink in.
They couldn't be said anymore - they only led to tears.
In their place were other words, words of anger and despair but also of comfort.
Words that had no power to save but could at least be said.
Salachti Shoshana: The dread of Rosh Hashana and Yom Kippur combined with the prayer for salvation and now seems to cry for forgiveness from Shani herself. I won't ever know whether there was anything that we could have done differently to stop Shani from dying, any intervention that we could have made, anyone extra that we could have brought in, any question we could have asked, but if there was we didn't, and actually we know in reality that there probably wasn't.
However, that doesn't stop me from feeling regret that I didn't do anything more.
UMa'avir Yom UMai'vei Lai'lah: Just before we say the Shema in the evening, there is a prayer about God controlling the heavens, and switching from day to night, which I used to think about in astronomical terms as a confluence of religious thought and the ongoing workings of the cosmos.
Now, on closer inspection, it presents a different meaning.
The words talk about rolling away the day and bringing on the night, blessing God for the night, the dark, the time of sadness and the absence of light and cheer.
Night time is sadness and sorrow.
Pslam 6: If nothing else, at least my thoughts and feelings have a way to be defined, and there is some relief to find that others have trodden similar paths of despair.
Heal me Hashem for my bones shudder, my soul is utterly confounded.
I am wearied with my sigh, every night I drench my bed, with my tears I soak my couch.
Alongside these prayers, there are some songs that speak to similar themes.
These first two helped me to deal with Shani's last few days, the distress and uncertainty of hospital life and the continued strength and wonderfulness that she always showed.
Long, long hours sitting and walking needed some inspiration to keep the hope going or at least to help to articulate what we were feeling.
As I think I said before, and as I said to the Shani's Coroner, Magnificent sums up Shani in one word, and the song lyrics speak to how much of an impact she had on the world and how she carried on loving life throughout her short but fiery life.
Can't find my way home, Eric Clapton and Yvonne Elliman (originally by Steve Winwood)
Come down off your throne and leave your body alone - somebody must change
You are the reason I've been waiting so long - somebody holds the key
Well, I'm near the end and I just ain't got the time
And I'm wasted and I can't find my way home
Magnificent (She Says), Elbow
This is where
This is where the bottle lands
Where all the biggest questions meet
With little feet stood in the sand
And this is where
The echoes swell to nothing on the tide
And where a tiny pair of hands
Finds a sea-worn piece of glass
And sets it as a sapphire in her mind
And there she stands
Throwing both her arms around the world
The world that doesn't even know
How much it needs this little girl
It's all gonna be magnificent, she says
It's all gonna be magnificent
The echoes slow
The bottle lands
The echoes slow
And there she stands
But afterwards, those two songs were not enough. In fact it was months before I could even listen to Magnificent again. I think it was when it was used as an instrumental backing track to Wimbledon highlights that I was felt able to go back. Even now it's a difficult one to listen to.
A Long December was chosen by Sheryl Sandberg, COO of Facebook, writer of Option B a wonderful book about dealing with grief and trauma that she wrote following the tragic and sudden death of her husband, as one of her Desert Island Discs.
It also happens to be a song by one of my favorite artists.
She said that, due to the immense hope that she felt they provided, the first two lines were perhaps 'the most important line to me that was ever sung'
I'm inclined to agree.
A Long December, Counting Crows
A long December and there's reason to believe
Maybe this year will be better than the last
I can't remember the last thing that you said as you were leavin'
Now the days go by so fast
And it's one more day up in the canyons
And it's one more night in Hollywood
If you think that I could be forgiven I wish you would
The smell of hospitals in winter
And the feeling that it's all a lot of oysters, but no pearls
All at once you look across a crowded room
To see the way that light attaches to a girl
And it's one more day up in the canyons
And it's one more night in Hollywood
If you think you might come to California I think you should
Drove up to Hillside Manor sometime after two a.m.
And talked a little while about the year
I guess the winter makes you laugh a little slower,
Makes you talk a little lower about the things you could not show her
And it's been a long December and there's reason to believe
Maybe this year will be better than the last
I can't remember all the times I tried to tell my myself
To hold on to these moments as they pass
And it's one more day up in the canyon
And it's one more night in Hollywood
It's been so long since I've seen the ocean I guess I should
I stumbled across Walk The Same Line when looking for songs by Everything But The Girl beyond the album that I already had.
They sing so beautifully and this song spoke volumes about the support we get from close friends and family, and for me particularly from Juliet.
When we lose faith, others can step up and provide some for us.
When we're lost, our community is there to help start finding the way again.
Without that I'm not sure how I'd have made it through to the end of this godforsaken year.
Walk The Same Line, Everything But The Girl
If you lose your faith, babe
You can have mine
And if you're lost I'm right behind
'Cause we walk the same line
Now I don't have to tell you
How slow the night can go
I know you've watched for the light
And I bet you could tell me
How slowly four follows three
And you're most forlorn
Just before dawn
And so, if you lose your faith, babe
You can have mine
And if you're lost I'm right behind
'Cause we walk the same line
When it's dark, baby
There's a light out shinin'
And if you're lost I'm right behind
Cause we walk the same line
And I don't need remindin'
How loud the phone can ring
When you're waiting for news
And that big old moon
Lights every corner of the room
Your back aches from lying
And your head aches from crying
And so, if you lose your faith, babe
You can have mine
And if you're lost I'm right behind
'Cause we walk the same line
When it's dark, baby
There's a light out shinin'
And if you're lost I'm right behind
'Cause we walk the same line
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