Jane E. Babin, J.D., on reflections on being changed by disease

Living and Dying With Hope, Part II

The reaction to Jane's sharing her story in the last LongView has been very positive. At the time that Jane's friend, Bill Zeckhausen, submitted her story, he also sent some of her other writings and poetry that have come from her living and dying with hope and ALS. We hope that they will give you more insight into what it is like to live and die with this disease.

My Singing Angel

When I entered Massachusetts General Hospital last April to have a feeding tube placed in my stomach, I was very apprehensive. Don't get me wrong, I had every confidence in the surgeons and staff at this prominent facility. Also, this procedure is done routinely.

My cause for concern was my ALS, also known as Lou Gehrig's disease. At the time, I had not yet had my tracheotomy. Because ALS is a neuromuscular disease that had begun to affect my diaphragm, I was afraid of any sedation that could compromise my already weakened ability to breathe. Try as they might, the medical staff, with their confusing medical jargon, could not allay my fears. I became more and more anxious as the night approached.

It was then that a singing angel entered my life. As I lay on my bed I heard this wonderful sound fill my ears. A nursing assistant had come to make sure I was settled in for the night. A beautiful Haitian woman with large, dark eyes was singing to me. "Is that gospel I hear?" I said, smiling up at her. "Uh-huh. Do you like?" I nodded my head.

She proceeded to tell me that she sang in a church choir in Boston. I responded that her voice was beautiful and that it must be some choir! She smiled and seemed to study my face. "Are you afraid of what's going to happen to you tomorrow?" All of my fears came flooding back in that moment and a few tears trickled down my face. "Don't worry, honey," she said, "everything will be okay. Would you like me to sing another hymn?" I nodded, and she went soulfully into another song.

I'm not sure of the name of the hymn or its melody. But its refrain, "Till the storm passes by," will remain with me forever. Over and over, with increasing passion, she repeated this refrain.*

My tears subsided and when she finished, she said, "There, now, there is nothing to fear. Go to sleep." She then asked if I would like her to sing to me before my procedure the next day. I smiled and said that, yes, I would love it. She patted my hand and walked away. I soon fell fast asleep.

The next morning, true to her word, she appeared at my bedside and sang the same hymn as the night before. At once, I felt all of my anxiety melt away. A few minutes later, I was wheeled into surgery a changed woman.

Sometimes medicine is indeed the best medicine. Sometimes it is the song of an angel.

* A friend later told me the words are from Till the Storm Passes By, a Methodist hymn, music by Mosie Lister. The moving words of the refrain:

Till the storm passes over,
Till the thunder sounds no more,
Till the clouds roll forever from the sky;
Hold me fast, let me stand
In the hollow of Thy hand,
Keep me safe till the storm passes by.

Why Love Me?

A diseased body, imperfect,
at times hideous and disgusting, is not made for love;
not for wistful sighing summer days of love
or pulsing, restless, cloying kinds of love.

It is not meant to improve; this ravaging beast within me
extracts all femininity, leaving me sexless and benign.
How to wile you, a keyless door through which I dare not enter
lest my heart, rejected, burst into a hundred pieces
like broken shells scattered on the shore

So, how you can love me I do not know.
Your smile, your soft voice an oasis in this decomposing desert.
I crave it, yet feel ashamed at wanting you to waste your love on me.
Would I accept it, I fear the earth might spin off balance
casting me deep into the universe, you now a mere hologram I am forever
meant to look upon but cannot touch.
Such punishment for desiring you I could not bear.

It has been only after months of grieving this dead shell
that I have been forced to love myself, lest God abandon me.

Breath of Life

Breath of life,
I took advantage of your regularity;
not respecting every inhale
not inspired by every exhale
'til those companion winds in me were quelled.

I cling to life, dependent.
breaths in me, now paced and scored,
travel godless vinyl tubing to a hole in my throat.
This artificial being I do not recognize as me
Forever tethered to a box I test my sanity
to think I will never again breathe free.
It is the disquieting panic flowing through me like a stormy breeze I fear;
I cannot go with it. I cannot breathe through it, caring not where it will take me,
hoping it will end without the awful trauma I fear

Acceptance is a fleeting thing and sometimes not at all.

Pearls In the Pond

I dropped my words into a pond.
Slowly, quietly they swam along,
passing turtles and reeds,
seeding a message of love and hope along the way.
Soon they found a tributary and picked
a branch along the stream,
dropping their syllables on mossy rocks which
sunned themselves along the shore.
But soon the wind kicked up and
blew my words into a raging river,
-where they tossed upon the foaming rapids
And fought hard against the currents.
Bruised and splinter they finally came upon
an inlet to the sea.
Up and down they rode the cresting waves until they were out of sight;
hope and love to spread around the world.

Compassion

My doctor gave me a hug today
in his office at the end of my appointment.
He said,” You need a hug”, then wrapped
his arms around me.
I never expected the intimacy of his concern.
Alone for so many years
one becomes accustomed to the lack of touch.
Yet it felt warm and pleasant like rubbing one’s hands
over a fire on a bitter winter day.
Perhaps he saw the resignation in my eyes
and felt connected to my fear.
But there was sadness in his eyes as well.
It came to me later in the day
as I pondered his hug, his words,
that he was really talking to himself, addressing years of anguish
over his young son who, like me, is trapped in a wasting body.
For one moment, he saw his dying son in me.
And in that space, arms around each other,
comfort and pain merged and sped off to the sky.

A book of Jane's writings, titled Pearls in the Pond, will be published and available sometime in August. It will include two sermons, the talk she gave to pre-med students at Williams College, 30 poems, her legacy letter to her ten-year-old son Christian, as well as an introduction, written by her.

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