When my body won’t hold me anymore – music and mortality

This post originally appeared on the Disability and Faith Forum.

When my body won’t hold me anymore
And it finally lets me free
Will I be ready?

When I hear the Avett Brothers sing these lyrics I feel it deep in my being, on multiple levels.  I long for the day my body lets me free. I love who I am now, but I still feel the fullness of who I was before my illness, constrained inside this disabled body. When the time comes will I be ready to let it all go? To move on to what’s next? 

When my feet won’t walk another mile

And my lips give their last kiss goodbye

Will my hands be steady when I lay down my fears, my hopes, and my doubts?

The rings on my fingers, and the keys to my house

With no hard feelings

I remember setting aside my rings, keys, phone, and all my personal effects as I went into the hospital for surgery.  The plan was for my thymectomy to be done through a small incision at the base of my throat.  However, I had also been marked in blue Sharpie with a long line down the centre of my chest, just in case they needed a larger opening. I wouldn’t know until I woke up whether my ribs had been cracked.  I laid in my stretcher outside the operating room listening to the metallic clink of the doctors preparing their tools and I gave my fears, hopes, and doubts over to God.  

I had made a CD for my young daughter with all the bedtime songs I sang to her each night.  Recorded on my phone, it wasn’t the best quality, but I hoped it would help if I didn’t come home. 

I had asked a friend to check in on my husband at the time when I would either be coming out of surgery, or the bad news would be delivered.  I didn’t want my husband to be alone if things went poorly.

I had connected with family and friends.  Made sure people knew I loved them.  The odds were good I would see everyone again but my health had been declining steadily for two years and I didn’t trust my body anymore. 

Jasmine, a white woman, stands in a recording studio.  She is wearing headphones and is singing into a microphone.
The year after my surgery a friend helped me record more songs as a gift for my dad. Music has always brought me solace.

When the sun hangs low in the west
And the light in my chest won’t be kept held at bay any longer
When the jealousy fades away
And it’s ash and dust for cash and lust
And it’s just hallelujah
And love in thought, love in the words
Love in the songs they sing in the church
And no hard feelings

Thanks to modern medicine my illness only has a mortality rate of 3 or 4 % so it’s unlikely that it will kill me. I have heard it described as “frequently life threatening but rarely fatal” but living a medically dependent life keeps me in a frame of mind where I am continually asking “will I be ready?”  

It may be morbid to have a file on my phone filled with funeral plans and to have already asked a pastor friend to do the service should I die unexpectedly, but being ready has uplifting aspects to it.

Lord knows, they haven’t done much good for anyone
Kept me afraid and cold
With so much to have and hold

I tell people I love them, frequently and sincerely. I try to keep the peace with others as much as I can.  I don’t want to hold grudges. I don’t want anyone to doubt my affection for them. I try to be myself and I try to love myself. I don’t always get it right, but I want to go to bed at night without regrets.  With no hard feelings. 

When my body won’t hold me anymore
And it finally lets me free
Where will I go?
Will the trade winds take me south through Georgia grain?
Or tropical rain?
Or snow from the heavens?
Will I join with the ocean blue?
Or run into a savior true?
And shake hands laughing
And walk through the night, straight to the light
Holding the love I’ve known in my life
And no hard feelings

We try to predict what comes after this life, and through faith we feel we know. No matter how sure we are, though, there’s still some mystery. “Holding the love I’ve known in my life” feels like a reasonable and reassuring expectation. In The Universal Christ, Father Richard Rohr observes that if God is love, and love is a verb, then maybe God is a verb. The idea that God is present in every loving interaction I experience has made Him feel closer and more integrated in my daily life. I will gladly hold on to that. 

Lord knows, they haven’t done much good for anyone
Kept me afraid and cold
With so much to have and hold
Under the curving sky
I’m finally learning why
It matters for me and you
To say it and mean it too
For life and its loveliness
And all of its ugliness
Good as it’s been to me
I have no enemies

On days when every breath is painful, or when I’m angry over petty things, or when all my treatments feel overwhelming, I can listen to this song as many times as necessary. It moves my heart to a place where I can recognize that whatever loveliness and ugliness I’ve experienced in this life, I truly have no enemies (not even my own body). I can rest in the knowledge that I am as ready as I can be for whatever comes next. 

Let it be

A close-up if my hands holding knitting while sitting on the couch. Beside me on the couch is a ukulele and an iPad
There’s a lot of knitting and singing going in my life right now.

This is the hardest part of the pandemic for me. It feels like a personal hour of darkness.

At the beginning, everyone slowed to the speed of the most vulnerable. The whole world stepped into my shoes for a moment and it was comfortable.

Now though they’re stepping out into the world and moving on. To them it feels like small steps but for me those steps are insurmountable.

I’m feeling left behind. As the world opens up, my world closes in. As other people have more contact points in their social circles I feel the need to withdraw from the few points of contact I had. The risk is just too high that contracting COVID-19 would seriously damage me, or worse.

I know other disabled and immunocompromised people are feeling it too.

As I withdraw I have been finding comfort in music. I’ve been playing ukulele and singing pretty much every day and I’ve been turning to some old favourites. Worship choruses that I used to sing at youth group, songs by Delirious? and the Newsboys, and hymns from my childhood.

One song, more than the rest, comforts me in this time – Let It Be by the Beatles.

As I sing it (over and over because I’m working on my finger picking) I think about the words and what they mean. 

It speaks of broken-hearted people being parted, which resonates deeply. 

Times of trouble are evident in the world at large when I check the news each night. 

My social media feed is filled with stories of hope, like a light shining through a cloudy night. 

I don’t know exactly what Paul McCartney meant when he wrote all these words; I once read he was inspired by a dream about his mother, Mary. But the lyrics make me think about the other, more famous mother Mary. 

Jesus’ mother.

When Gabriel came to her with the news that she would give birth to God’s son she gave a simple response to such a complicated task. “Here am I, the servant of the Lord; let it bewith me according to your word.” (Luke 1:38 NRSV, emphasis added)

Compared to mothering the Saviour of the world, navigating the lifting of pandemic restrictions right now seems downright simple. However, it impacts work life, home life, and relationships and there are no instructions on how to figure it out well. It certainly doesn’t feel simple and there is no end in sight. 

I pray that I would approach this complicated task with a similar heart posture to Mary’s. If I keep her words of wisdom in mind, perhaps I can just trust God and let it be.

(Crossposted to the Disability & Faith Forum.)