Severe pain can lead one to places that are uncharted, unfamiliar, and unknown. Whether the paths are physical, emotional, or existential, the devastation is life-changing and undeniable. These unwelcome and unrelenting feelings often permeate every aspect of daily life and can deeply affect relationships with loved ones, friends, and caregivers. The feeling that, in a way, you have been betrayed by your own body, can be profound and lasting.
Approximately nine years ago I experienced some unexpected career disappointments, as well as the onset of an uncommon disease that was missed or misdiagnosed for more than three years by multiple physicians who were caring for me. They all thought that the increasingly debilitating process represented manifestations of my congenital arthritis and it was treated as such, locally effective on occasion, but ultimately not addressing the systemic process, which remained resistant.
A state of deep despair and feelings of worthlessness blocked by my strong internal resilience and will to survive produced the feelings that are captured in the two below poems, “Almost There” and “It’s the Pain Talking”.
Fortunately, a colleague who I had not seen in some time took one look at me, listened to my story, and immediately concluded that I needed to see a neuromuscular clinician. Fortunately, one of my former mentees, who became a prominent leader in the Department of Neurology, referred me to someone who turned out to be the appropriate specialist. Finally, the correct diagnosis of the rare disease myasthenia gravis was made. An ancient oncolytic drug and systemic immunotherapy were started. I was quickly on the mend and, with periodic treatments, remain in remission to this day, even though an unexpected and urgent cardiac bypass occurred along the way.
I can’t get started.
How could you love me
knowing the fate
sealed in my genes.
But I want
your kindness, your smile in my life.
I need your loving so that I can
break the surface of the waters.
And breathe air again.
Choices I have made
have left me alone,
afraid to reach out
and to be hurt again.
Release me from these dark places
in my mind.
a prisoner in this dungeon of despair
to which I have been jailed.
How can I get started
knowing the road my life will follow
leading to a future,
Homeless in my mind and alone.
I need your kindness, your smile,
I need your touch, your loving,
Your hand to guide me through the darkness,
You, a passage to light and life.
I must be brave and
embrace the light
You, a deep breath of life
that I can inhale and deeply breathe
the fragrance of your being.
10/5/2015, completed 2/21/2016, revised 3/4/2016.
It’s the Pain Talking
Five years ago the rocket exhausted its fuel,
nearly disintegrating, crashing hard.
Healing these past few years, ready to go again.
But it was not to be.
Sacrificing your time to gently care for me
as my long-hidden illness overwhelmed.
Becoming public by a collar,
rigid around my neck.
A beautiful date the evening before.
Dinner by firelight, a briskness in the air,
Your smile shining in the darkness.
All go, even with challenges in the way,
I anticipated meaning restored to my life.
Productivity, love, and courage within sight,
yearning for my heart restored.
But it was not to be.
Awakening early with nine-plus pain
in the neck, the back, everywhere.
My response to your morning greeting
I hold my breath, suppressing words
I should never say.
The promise of redemption put on hold,
your kindness quashed.
The Pain talks, overriding my deep love for you,
producing more regrets.
Adding to the burden of existence in a changing world
that I try to accommodate, but no longer recognize.
I pull back once again from the temptations of the Golden Gate.
Ripping off the collar, screaming in the enveloping darkness
for the damage to us that I have done.
I open my eyes and You are still there.