“They would not listen, they did not know how
Perhaps they'll listen now”
I’ve referred to my pain as a thief, a monster. I’ve also called it beautiful. Perhaps you have your own words to describe the thing that assaults your dead man, bleeds your spirit, a parasite unforgivingly sucking your mental and physical capacities little by little. Aloe for my soul, tonic for my senses are the ways my life is surrounded by poetry, art and haunting movement of note and line and brush and earth and oil. The seasons of my pain onset and journey so far plays into such refrain. Life is beautiful, if we mere mortals could only see it enough.
“Starry, starry night
Paint your palette blue and gray
Look out on a summer's day
With eyes that know the darkness in my soul”
2005-2009 was a naive, youthful summer. Pain appeared and I laughed with it. I tried to friend it. Joe and I had just moved here from Indiana and I was searching for friends. I joined ranks as a volunteer firefighter. I worked long hours at various lab-tech jobs before landing, in the summer of 2007, the one I thought would lend itself as my career, designing softgoods (aerospace materials) for robotics projects onsite NASA. By 2009, in a span of only four allotted months, a job that several other companies had No-Bid as it was predicted to take a minimum of 18 months, I had designed the flight suit and gloves that the humanoid Robonaut 2 would wear in orbit on the International Space Station. All while trying to friend my pain. When I realized we weren’t compatible, I did what someone who is immature and can’t find common ground does - I ignored it.
“Colors changing hue
Morning fields of amber grain
Weathered faces lined in pain
Are soothed beneath the artist's loving hand”
2009-2013 was a drafty autumn. Leaves fell but the air was off. The colors, normally so intense, so bold in their last inhale of carbon dioxide before their exhale of our precious oxygen and release in brilliant blaze accepting death, were off. My rhythms were off. I couldn’t put my finger on it, no one could. The doctor count and bills stacked, out-of-pocket maxes hit each year by June. The testing, physical therapy, injections, procedures, surgeries all became a fixture in my every week to work around on top of everything else. Our hopes frequently raised and instantly dashed. There was the smell of rot, pungent and biting, but where was it coming from? We welcomed our JuneBug, he made us happy and terrified parents. I threw myself into building a department and growing a team. We gained real-estate and juggled prototype work. I forged ahead, stomping confidently in high-heeled boots that my now pain-emy despised. It wasn’t going to control me.
“Shadows on the hills
Sketch the trees and the daffodils
Catch the breeze and the winter chills
In colors on the snowy linen land”
2013-2016 was a bitter and ruthless winter. I could never get warm. I underwent my first fusion, though my fourth surgery, in May 2013, when sweet Sam was a teeny ten-week old. She was a difficult carry and after she was born, the exponential descent of deterioration from back and leg pain drove me to utter madness. But I was going to have to lose mobility of my wrist to regain strength and function. As someone who writes as breathing and designed for a living, losing my dominate hand was a challenge to my very core identity. I learned to write left-handed, I taught Dragon how to cuss. It would be a year and a half before I regained full abilities. As the manager, I could delegate my ideas and lean on the amazing team that surrounded me. They were ingenious, driven and so talented, truth is they didn’t need me. Then came the sequester from a 16-day government shutdown and the loss of our project funds. My entire team of thirteen, save for myself and the beating heart of our project and sage design technician, Xuan, were let go. Folks from all surrounding projects were let go. It took about six months to see the full effects of a forced mass exodus, but the empty desks and echoless halls daily reminded us of the cruel ways folks thousands of miles away can’t see real-time, real-life impacts of whim and politic. During that year and a half, I wavered between regret and hope - had I done the right thing - things were progressing slower than I thought they would. And then one day, I knew it had all been worth it. That day I wanted to do the very cartwheels my doctor told me were off-limits. (Like I could do a cartwheel even if totally healthy!) I also knew I needed to stop, just stop everything, and focus full-time on my health. I had to learn to live with this thing sharing my soul while upon this earth. My bruised heart, my body even more battered, had long stopped caring about my role or contributions at NASA. In a move long overdue, I left my job. If I could regain abilities in my hand, how else could the quality of my life improve? Depression, even as a byproduct of constant pain, is raging storm, macabre screams carried by a relentless cyclone. I was suicidal, with a plan and ready. Friday on the phone with my therapist. Monday in his office with Joe. We formed an action plan of immediate next steps. It was time of watching, no sudden movements. Tuesday night at midnight, May 12th 2015, our home flooded. That hadn’t been a part of the immediate next steps. But it did save my life. Surviving that special hell was something quite extraordinary. In February of 2016, we moved back home in time for Sam to turn toddler-three. By June, I would undergo my second fusion, this time my right sacroiliac-joint. Three months post-surgery, the first outing we ventured was to have our family photos taken by a recommended brilliant and beautiful soul and who, little did I know, was about to become a big part of my life. Our second family outing that year was to the Houston Zoo Lights at Christmas, six-months post-surgery. I walked a good hour before I had to stop and rest, this was epic process and the signs of hope still to come.
“Starry, starry night
Flaming flowers that brightly blaze
Swirling clouds in violet haze
Reflect in Vincent's eyes of china blue”
2017-2019 blooms a wistful, hopeful spring. January 1st 2017, New Year’s Day, we walked through the doors of 218 for the first time. Our friend who invited us, John, stood on the stage, the stunningly beautiful wooden signs he had made saying Love, Hope, Peace, Joy, hung behind him. He strummed his guitar and lifted his voice with Ecclesia. The air had a quality, fragrant and warm. Could my winter be in thaw? The amazing recommended photographer was there too…what?!! She said, “we’re going to be great friends.” And yes, we laugh. One year post-surgery, the summer of 2017, I participated in my first homeless meal service. I began to accept cases as a Standardized Patient for UTMB in Galveston. I was again using my body and felt unbelievably free. Yes there is pain, but less. Yes, there are restrictions, but semantics. My mind remains as free as Fantasia, NeverEnding Story fans?, and I could see the buds of spring everywhere. Hurricane Harvey was awful, for our city and our community. Trauma together knits tighter bonds. The poetry of the people in motion to help friends, neighbors, strangers, everyone and anyone with needs, such mighty needs, astounds me still. We flooded a second time, but it was not devastating nor anything close to our first flood, nor close to the decimation and destruction that so so many others experienced. We didn’t have to move out during repairs. I began to volunteer as donations coordinator with the local homeless nonprofit and have met so many loving and compassionate souls in so many ministry and community service organizations. I finished a book I had started in 2012. One of my dear, sweet, amazing friends, someone of phenomenal talents, illustrated the book and I self-published. No matter its fate, this endeavor was another life-saving journey step along my path. Uncorking a gauntlet and helping me to believe in myself that I could write the others. Then my pain increased. Okay, that does happen, is expected at times. I can over-do it. But the flares and frequency were increasing and it was apparent it wasn’t just a lack of my efforts to strike a balance. The seeds I thought were long dormant had found flames of germination. I had gone almost two solids years where I hadn’t met my deductible, let alone saw my doctor for anything other than a cold.
“For they could not love you
But still your love was true”
And this is where today finds me. As I journey, as I lay stone steps along my path, there are more questions resulting in more tests and doctor visits. Is another fusion on my horizon? I know what that means and it scares me. Are there medications? I’ve been down that road and it scares me. I can face these fears. I can fish well. There are more mental check-ins and more coming to terms with a friend turned foe turned accepted soul-sharer for a time and that is just a part of this season. Spring is still sweetly surrounding me. Birds sing and everywhere I look, I see life.
Today I’m learning to be content with less definition. My current mantra is ‘I’m okay and I will be okay.’ Because I will be. Rearview watching can allow us to parse, to connect dots, to sometimes see the point of a thing. It can be so beneficial. But this is still Spring, I need to stay in this moment, THIS ONE, to keep me grounded with my toes in moist earth, ripe and ready for new shoots. Let me see the beautiful hues of blue and gray and amber and linen and violet.
“And when no hope was left inside on that starry, starry night
You took your life as lovers often do
And I could have told you, Vincent
This world was never meant for one as beautiful as you
Starry, starry night
Portraits hung in empty halls
Frame-less heads on nameless walls
With eyes that watch the world and can't forget
Like the strangers that you've met
The ragged men in ragged clothes
The silver thorn of bloody rose
Lie crushed and broken on the virgin snow
Now I think I know
What you tried to say to me
And how you suffered for your sanity
And how you tried to set them free
They would not listen, they're not listening still
Perhaps they never will”