56. Pain

Pain is the ultimate nemesis. You can do all of your work, cleanse yourself of judgment and embrace your personality. Live. Love. Be the entirety of life’s calling. And still pain will bring you to the edge, test you, then test you again.

Pain is the ultimate nemesis.  You can do all of your work, cleanse yourself of judgment and embrace your personality.  Live.  Love.  Be the entirety of life’s calling.  And still pain will bring you to the edge, test you, then test you again.

I actually don’t have any real restrictions, any drug limits.  That comes with the title Stage 4, Inoperable, Terminal, But the world doesn’t comprehend the shadow walkers.  The fully living have a very hard time embracing the “dying”.  We are capable of walking the veil, living in neither world more than living in both.

The Wednesday after emergency surgery, there was pain.  A lot of pain.  I believe the theory of the hospital may have been that I MUST come off the IV narcotics for my transition to home.  And that the process was quick and brutal.  (And unnecessary.  Sigh.  In retrospect, I did not contact the Palliative Care Team to advocate for me.  An extra day or two in the hospital, less drama and more chemical relief, was probably a phone call away.  Hindsight, 20/20.)

I did not lash out, yell, or act socially unrecognizable.  I sat still and helpless, gray, unmoving, looking out through eyes that had no kindness left to give. No walking, no mental compensation. My voice was gone.  My words were gone.

People live like this.  People in this state are not alive.

30. Pain

A Palliative Care Team is a doctor, nurse, and social worker who follow the overall medical case of a patient.  They offer support.  Pain medication adjustment (I currently have no pain beyond the Tylenol level).  Listening.  Direction toward people or programs (we spoke of programs like Death with Dignity and Hospice, and the team directs the right specialists to call me).  They are advocates, a cheer squad.

Yesterday Helen, the nurse in Palliative care, and I were speaking of neuropathy and pain.  I explained my experience.  There is a difference between noting an experience in the body and perceiving it as pain. I looked closely to figure out how to explain it.

We have an incredible, intricate body system.  It sends sensations and messages constantly.  If I tell you to speak to me about what is occurring in your foot, you can focus there.  In my foot, I can feel pressure from where it touches the bar stool.  I can actually hear a thrum sound, weird.  The inside of the heal is cold.

Other people describe neuropathy as pain.  When I described it to Helen, I saw different levels of sensations.  There can be numbness, or tingling.  It can come as energy that is like needles sticking out from the body, going beyond the edges.  To me, that is not pain.

In the example of neuropathy, pain appears when there is an excess or a shock.  If I accidently grab something that is frozen, the body screams in pain.  Or really, the sensations that I can usually interpret, come in such a rapid and abundant way that I am overwhelmed.  Pain.  Pain is physical urgency.  Run from the tiger.  Pull your hand off of that stove!

Slow it down.  Shift the focus.  Or, look deeply into the pain.  All of these move me to awareness and perception.