Each morning, without fail, I endure its vengeful return.
Neither drug nor breath can keep it away.
Each day, without remorse, it haunts my every moment.
Neither work nor play can keep it at bay.
Each night, without rest, I suffer its wrath.
Neither food nor drink can stop it for just one day.
Nowhere I go,
Nothing I do,
Whatever I try,
This fact remains true:
Born without pars, I can never be whole.
My spine is shattering, one vertebrae at a time.
Living with it in me, I can never be free.
My body is crumbling.
Pain is my partner.
Pain is my friend.
I love the touch and feel of things.
Whenever I am walking on the street, I need to rub my hands on the sides of buildings, plants, metal posts, anything that I can find to feel.
I love to gently probe and rub things that are soft and squishy.
I love spongy foods.
My favorite kind of food is Sticky Rice, because it surrenders to my fingers.
The bread at Ethiopian restaurants comes in a close second, for when you hold it up and shake it, the rolled up crust wiggles as if it is alive.
I love anything with the texture of a rubber eraser.
Oooohhh, Erasures! I constantly need to feel them, squeeze them, play with them, push, pull, do something with them.
You can't leave me in the room alone with an erasure or else only I will come out, the erasure having been manipulated to the point of failure.
Whenever I am in the meat section of a grocery store, I'm constantly feeling the meat in the packages. The give of the meat against my hand, the sense that this was a living thing, the feeling of life within it.
If I do not have something to hold, touch, or play with, I use my own fingers; rubbing, picking at, destroying them to the point of bleeding, in order to feel something.
I need to feel something at all times!
I need touch; to sense softness, warmth, life; in order to be secure.
I crave. . . No, REQUIRE, these things.
There is not enough to touch in the world.
This lack of feeling creates a sense that I am alone.
And, as a lone little boy, I am scared:
Me – I don't want you to go
Mom – I don't want to go either, honey
Me – Then why are you leaving?
Mom – I am not leaving. I am just going away for a while because I need help
Me – I will help you
Smiling at me through the tears, my mom wraps her skinny arms around my five year old body
I am crying
Mom – You do help me so much
Her usually pale skin is blotchy, the wetness of her tears feels cool against my cheek.
She is kneeling down to hug me at my level as I stand in front of my elementary school.
My education interrupted by a court order from the State of California that she enter a mental institution.
My mom had been my savior up to this point in life; defending me with broken arms and bruises from the angry blows of my father.
She had found ways of finding food for me despite the abject poverty of a family of four straining to live off of her meager income.
When I needed surgery, she was by my side every hour that I was away from home.
When I shattered my skull, she sat next to me, holding my hand in the emergency room while she told me Winnie-The-Pooh stories, as doctors stitched my forehead back together.
Two strangers, in blue, loiter in front of a van a short distance from us. One is a woman, about my mom's age. The other, an older man.
The man calls out in a soft voice: We should get going.
My mom's hug does not loosen as she stands up.
For a moment, despite her frail frame, she lifts my little body off of the ground.
My toes grasp for the security of the earth, but instead flail lightly in the air below my feet.
Then, my mom notices that she is holding me up.
She kneels down again, returning me to one mother who will not let go.
Her arms slowly unwind from my body.
She looks me in the eyes before slipping away; her right hand left dangling in mine for an instant until the warmth of her skin slides away from my senses.
I am alone, motherless, in front of my school.
My mom was my protector, and now, she is gone.
The void left when her shield of me disappears is replaced by the stoicism of a child to never be abandoned again.
Yet, as an adult, I am not alone.
She did not abandon me.
As a matter of fact, she is with me every day of my life.
She left me with a piece of her.
I woke up this morning, as I do each morning, with two knives stabbing into me.
One is in my neck, just above my right shoulder.
The other, in my lower back, where my spine meets my hips on the right side.
No matter how I sleep, in whatever position, I cannot avoid this pain.
The eventual failure of my cervical spine will match the ongoing shattering of vertebrae up my Lumbar spine.
The structure of my body is failing
My mother’s spine failed her in life, leading to two surgeries.
One in her neck, the other in her lower back.
My pain, if you will, is a remnant that my mother left me of her existence.
As I endure surgery after surgery, the hell of paralysis, and the ever present feeling of blades in my body, I remember fondly the mother who protected me until she had to leave.
She left me in pain.
For a period of several months, back in 2005, it was so debilitating that my existence consisted of a sack of flesh curled up in a fetal position crying in a bathtub.
Shattered vertebrae cut off my Sciatic nerve, paralyzing me in my home.
My inability to move my legs and the shear agony such existence caused, ledme to cry out to my wife and to my mother.
My wife’s hand reaches out for mine.
I feel the warmth of her body.
My pain diminishes just a little bit.
I am safe.
Eleven years ago I underwent a Laminectomy and Spinal Fusion of L5-S1 in an effort to be able to walk again. Three years before that event I was in a mountain biking accident which shattered my spine, shifting my whole right side up. A birth defect I had never known existed, until the accident, Pars Defect, allowed my vertebrae to move and shift from the accident, leading to the eventual paralysis of my sciatic nerves. The surgeries were a success, and I was able to walk again.
Boy do I walk! I love to walk. It's now one of my favorite things to do. I push myself walking at a brisk pace to cover the distance from Ballston to Tyson's Corner, Tyson's to Merrifield, and Tyson's to Fall's Church, and all back again. I walk to be healthy. I want to prove I can. I walk for the pain.
I say for the pain because about a year ago the pain returned. It's now higher up my spine as the Fusion worked great. The problem is, the fusion worked so well the vertebrae of L4-L5 are shattering above the fused mass, and the disc between them has disappeared, forcing them to rub together, inflame, and shatter faster.
I walk to the spine doctor to talk about my surgical options.
I walk home to ice and contemplate another invasive operation.
I walk to the fridge and pantry in search of some food to fill the shattering.
How do I get COMFY with personal pain? How do I take what my mother gave me, mixed with my own accident, and make it ok?
Through her learning, I reconnect with the earth by being out in it. I share my pain with the earth, with the world around me, with everything. If I let the pain escape my body then I do not need to manage it. If I let the pain flow out of me, into a much wider world, a greater universe, then I do not have to handle it alone.
I cannot rid myself of the pain this way, but at least I can get it out of my head.
As we prepare to August in France and Spain, this solution may not hold up against the challenges of travel. Therefore, I am accepting that I'll need a steroid shot in my spine to numb the pain to carry me through. I would not be doing this if we were not travelling. I simply don't want to be stuck abroad seeking out pain remedies I can get here before we go.
In the longer term, I am talking with two surgeons about surgical options. We'll see what makes sense for me. Chances are, I'll likely have a new spine surgery in the Fall.
This post has no quick and easy solution to rid yourself of pain. What I do offer is meditation, connection, and medical intervention. These three together help me experience, dilute, then hopefully eliminate the cause of the pain. This may work for me. Other paths will work for other problems. This is how I'm getting COMFY with an uncomfortable life component. The COMFY life sometimes requires an outside influence, as well as internal strength, at least for me it does.
How do you experience pain?
What ways have worked for you to live in discomfort?