My favorite human is a hot dude who broke his neck as a teenager.

We lived together for many years. I wrote this in the middle of the night—one of many in which I never even thought of getting a minute of sleep. He was in agony, and I was in the trenches alone.

Scared he may not make it through the night, I wrote this:

I don’t know what to do. My heart is breaking and grieving for all the people that suffer.

What do I do as I watch a person suffer so much?

Watch him writhe and sweat and cry out to God for mercy?

What do I do as I sit comfortably in my own temporal dwelling of flesh and bone?

Grimace and feel guilty?

What do I do after I pray, hold it together, champion, advocate, and cheerlead for my agonized partner in this life?

What do I do as I witness his tangible fear to keep living, intertwined with his ethereal fear of dying, fear of failure, and fear of mediocrity?

Its display is inescapable as I bear witness to it in the human I love—and feel—as much as my own being.

Where do I go to cry and screech and wail and break and beg?

Where do my dreams go?

My plans for “us?”

My fantasies of holding hands?

Sitting near each other on the same piece of furniture?

Sleeping cold butt to cold butt in the same bed? Or even the same room.

After the endless disappointing calls and pleads to doctor after doctor after doctor after doctor after doctor after doctor after doctor after doctor after doctor after doctor after doctor after doctor after administrator after therapist and parent, sister, father, best friend, lawyer, policy maker, receptionist, nurse, acupuncturist, colleague, stranger, neighbor, and fellow caregiver?

Where is the playbook? The rule book? The script? The end? The reason? The answer?

Who tells me it gets better? It gets easier? It’s temporary? That he will overcome? That there is a reason? A solution? A grand destiny? That there is help?

Why is this beautiful soul shrouded in six failing feet and two twisted inches, 87 startling pounds of physical flesh and deformed bone set on punishing him for an offense unknown? For an infinite time?

Why are there 205 doctor visits in nine years? Thousands of pills? Unimaginable side effects? Fifteen failed surgeries and procedures? Unimaginable tears and desperation? Foul stench of burst colostomy bags in the middle of the night? Ruptured gushing cardiac PICC lines on the brand new mattress? Blood pressure of 188/108 to a 30/50 dip? Why are there 25 years of crippling daily seizures of the bladder and teeterings of a stroke? Why are there ice picks of piercing pain from shoulder to finger tip? Why isn’t there movement below the nips?

This is inconvenient, but mostly why people frown.

Why did protective finger and toenails fall out? A result of shock? Why are there spasms that twist 42 years of life into a frozen fetal position every morning? Pressure sores, leg bags, catheters, snapped femurs…
cadaver bones, plates, screws, rods…
scoliosis, arthritis, osteoporosis, autonomic dysreflexia, malnourishment…
depression, tendonitis, neuropathy, colostomy…
emergency surgery, endoscopy, sonogram, KUB…
hypogastric plexus anomaly…quadriplegia of the worst degree.

Why do doctors and hospitals turn him away and look past him with down cast eyes and hurried glances? Why aren’t my shoulders capable of handling this?

How is he still smiling? How is he still loving? How is he still going? How do I take the yoke and carry the burden and remain stoic?

When does he get his chance? When will it stop? When does he get to begin again? When will we stop asking why? When do we just accept it? When will my heart quit grieving and gripping me with paralyzing emotion? When will it be worse?

New normal? Silver lining? Am I culpable? Is this dying?

Is this preparation for our true lives? Is it true we are aliens here and only prisoners of our own devices? Waiting to discover what heaven is.

I cry softly at these tipping points. I cry violently when my body warrants it.

Questions don’t matter in the midst of the splatter. He is fitfully asleep, and I ponder our mutual disaster. 9,125 days and nights without privacy. Do you know what’s been stolen…from him? Money, checks, medicine, prescriptions right from the pharmacy…
dignity, opportunity, normalcy…
child bearing and, therefore, child rearing, parking spots, girls that are hot…
always privacy…
humanity, vehicles, clothes, wheelchairs, too…
sometimes even right in front of me.

Not being able to walk? That’s inconvenient. It’s everything else that’s disabling. Cobweb-like nerves operated on. What’s left remaining is paper thin muscle tissue and a spirit treaded upon. I’m gonna remind you one more time: that handicap spot you’re illegally taking? We will let you have it, but know, it’s a terrible mistake you are making.

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I wanted to share the original voice recording I made a few years ago which inspired this piece. It may make you cry. So be prepared.

 

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Author: Gentrie Pool
Image: Flickr/Jorge Elias
Editor: Travis May
Copy Editor: Callie Rushton
Social Editor: Waylon Lewis