When Pain Has No Name

The first time was in October. We thought the frantic crying was a temper tantrum until we looked at her feet. They were half vibrant red, half deep purple. The red parts where hot, the purple ice cold. We tried various strategies to cool the red parts and eventually, after much crying and screaming, Monica calmed down as her feet assumed a more normal color.

At first we chalked it up to Monica’s rhombencephalosynapsis. Her condition is rare and causes all kinds of issues, so it made sense to blame this episode on her fused cerebellum.

For a month, nothing else out of the ordinary happened. We plodded on with speech therapy and physical therapy. She was making good progress--just at the cusp of walking, and quickly adding more animal sounds to her repertoire. We forgot about that evening in October.

As Thanksgiving approached, however, the episodes of painful swelling returned. They didn’t usually last long, but they were more and more frequent. Soon, her legs turned red and hot in addition to her feet. Then she lost the bladder control she had recently gained, and could no longer go through the night without multiple diaper changes. Her episodes of pain intensified. Sometimes we were awake for two to three hours in the night, trying to soothe her pain, or at least keep her company in the midst of it.

The medical testing began in December: ultrasounds, an EKG, blood tests, an MRI, more blood tests. The results: nothing. Every test so far has shown no cause for her pain, though her symptoms are increasing. Next week, we have another MRI--this time of her spine. I want so badly for the MRI to show a cause for Monica’s pain, but part of me expects it to show nothing. Part of me sees this search going on and on while my daughter suffers.

I did not realize, until now, the horror of living with undiagnosed pain. Nor did I realize how common this predicament is. I spend hours reading medical articles, looking up terms, searching for information about different conditions. I have wearied more than one doctor with queries. We have shrunk our bank account. We have tried multiple methods of pain relief. But none of this is exclusive to us. The cause of my daughter’s pain may be rare, but the journey for a diagnosis, for a name to put on the pain so it can be treated--that path has been trod a thousand times before.

So here we are, stumbling in the dark, searching for an enemy without a name, knowing that just finding a name is the greatest challenge right now. We also know that this quest may go on for some time. Some people spend years searching for the name of their pain.

For me it is now a question of coping. How can we keep facing the dark without losing our peace? How do we find any solace in a world without answers? How do we pray when we don’t know what to pray against?

This week, I began praying a modified version of Psalm 139. It is my way of calling on heaven when I’m not even sure what to ask for my daughter:

O Lord, you have searched Monica

and you know her.

You know when she sits and when she rises;

you perceive her thoughts from afar.

You discern her going out and her lying down;

you are familiar with all her ways.

Before a word is on her tongue,

you know it completely, O Lord.

Remembering that God knows my child better than I ever will, better than I ever can—this is a balm, especially when I don't know what's wrong and cannot fix it.

You hem her in--behind and before;

You have laid your hand upon her.

Such knowledge is too wonderful for me,

too lofty for me to attain.

Where can she go from your Spirit?

Where can she flee from your presence?

If she goes up to the heavens, you are there;

if she makes her bed in the depths, you are there.

If she rises on the wings of the dawn,

if she settles on the far side of the sea,

even there your hand will guide her,

your right hand will hold her fast.

If I say, “Surely the darkness will hide her

and the light become night around her,”

even the darkness will not be dark to you;

the night will shine like the day,

for darkness is as light to you.

When I pray these words, I imagine Christ sitting on the bed we’ve placed next to Monica’s hammock. He’s always with her, and I think he smiles.

For you created her inmost being;

you knit her together in my womb.

I praise you because she is fearfully and wonderfully made;

your works are wonderful,

I know that full well.

Her frame was not hidden from you

when she was made in the secret place.

When she was woven together in the depths of the earth,

your eyes saw her unformed body.

All the days ordained for her

were written in your book

before one of them came to be.

How precious are your thoughts concerning her, O God!

How vast is the sum of them!

Were I to count them,

they would outnumber the grains of sand.

When she awakes,

she is still with you.

I do not know how long this search will last, or what difficulties we will face when we do know what’s wrong. How many more nights will my daughter lie awake in tears for hours? I simply do not know. But I do know that whenever she cries out with a pain that has no name, she is still with God. And no matter how dark our search, there is great comfort in that.