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.