It couldn’t have been easy.
She was a young woman just beginning married life. She was 19-years-old and had her entire life ahead of her, but then one day her entire life became this fragile baby with a life-threatening birth defect who would spend the next few weeks and months in a body cast and having surgery after surgery with doctors never knowing if “this surgery” might be the last one.
It couldn’t have been easy when her priest, a good man whose words must have been well intended as trying to make some sense out of this unfathomable tragedy, suggested that perhaps it would be God’s Will if, indeed, this new life might not survive.
She wouldn’t have it. She wouldn’t have any of it. Given the choice to allow my passing, my mother instead fought like hell that I might survive and thrive and find a place in this world.
I think about this story every Memorial Day, admittedly a day that found its origin as a day honoring the Civil War dead and eventually growing to inclusively honor all those who have died in service to the United States, as I spend the day reflecting upon those whose unimaginable devotion to the miracle that is my life has allowed me to live in a way far beyond anything that anyone ever imagined.
I think of the unwavering faith of a mother whose refusal to simply give up planted in me a fierce devotion to life and to service and to perseverance that would withstand even the lowest points of a challenging life marked by lifelong health challenges, severe sexual abuse, and multiple traumatic losses.
I think of the doctors at a small county hospital who willingly received my then broken body into their facility from an even smaller rural hospital ill-equipped to save me. I think of the doctors and nurses who immersed themselves in my survival and loved me and nurtured me as if I was their own. I think of that one nurse who spied me in a parking just three years ago, a man in my 40’s having survived long past my life expectancy, who remembered me from those first days of my life and who remarked “I knew it was you by the look in your eyes.”
Man, she must’ve really fought for me.
I think of the teachers and professors who found something different in this young student who had been labeled as “disabled” and “special” and “retarded,” yet in whom they saw something transcendent and alive with potential. Mrs. Pruitt. Mrs. Zimmer. Mrs. Jefferson. Mrs. Booth. Sister Marian Ruth. Father Boniface Hardin. I think of those who fought like hell so that I would not be labeled as “special,” but would have the opportunity to experience the fullness of education even if it occasionally meant my grades didn’t go as well as we’d hoped.
I think of those teachers and professors who fostered my newly discovered creativity and helped me discovers ways to express things that had always been locked up inside my brain. Mrs. Jefferson. Mrs. Booth. J. Edgar Webb. Dorothy Webb. Clara Marshall. Father Boniface Hardin.
I think of those friends and peers in school who never let me feel abnormal and whose conscious and intentional integration of me into their lives challenged any concept of disability. Ronnie Crist. Valerie Lambert. John Albrecht. Kirk Markham. Heidi Nelson. Gary Cornett. Victor Smith. Wardean Davis. There were others.
I think of those who felt the aftermath of how experiencing sexual abuse shattered my peaceful world, yet they figured out how to love me anyway until I could reach a point, years later, of loving myself again. Lisa Stewart. Melissa Miller. Celeste. Valerie Lambert. Victor Smith. Rose Kleiman. Laura Q. Propes. Betsy Whaley. Robyn Boone. Jennifer Carpenter. Michie Rollison-Sebree. Leslie Fuller.
I think of those who fought like hell for my survival when every fiber of my being had given up. I think of the ones who listened and the ones who held. I think of the ones who nurtured and the ones who counseled. I think of the ones who took late night phone calls and, yes, I think of the ones who finally said “enough.” I think of the ones who took guns out of my hands and lighters out of my hands and who built me up even when they knew I was going to knock myself down again.
I think of the ones who refused to give up on my potential and offered me chance after chance after chance to grow and learn and prosper and work. I think of a father who didn’t hesitate to help me obtain my first job at his place of employment – oh god, how I was so horrible yet it was a start. It was a precious start. I think of Leo Stenz, who took a chance that didn’t quite pay off. I think of everyone at Winona Hospital, a small hospital in Indianapolis that took a chance on some guy who’d decided he didn’t want to live on disability anymore and who finished his degree and wanted a job. They hired me and made me something better than I ever dreamed I could be. I think of all the employers that would follow and the ways that I learned, sometimes minute by minute, how to grow into someone with a strong work ethic and a fierce sense of loyalty.
I think of the people who love me “anyway.” I think of the people who somehow don’t see the disability even when it’s the only thing that I myself can see. I think of the people who’ve allowed friendship to be redefined to allow for a level of personal assistance that sure isn’t for the squeamish. I think of the friends who’ve at times in my life helped me get dressed or get showered or clip nails or wash clothes or clean the house or mow the lawn or wipe body fluids off of high ceilings while I cowered in shame and they just wondered “How did that even get there?”
I think of the people who’ve supported my biggest dreams and who’ve followed me along the roads of Indiana and beyond as I toured and shared and raised funds and processed my own demons. There are way too many of you to possibly mention all of you. You’ve driven hours to support me in all kinds of weather and I consider that completely and utterly amazing.
I think of those who’ve helped me maintain my faith in God, a relationship that is weird and exciting and authentic because in my life it couldn’t have survived any other way. Jeanne and Scott Rieger (and family). Jennifer Carpenter. Phil and Louie Rieman. Tom and Nancy Faus-Mullen. Kerry Baldwin. Father Boniface Hardin. Sister Jane Schilling. Sister Marian Ruth Johnson. Friends from Jehovah’s Witnesses, Vineyard Christian Fellowship, Eagle Alliance, Unitarian Universalist Church of Indianapolis, Church of the Brethren, Disciples of Christ and others.
I think of those who taught me that touch could be a loving experience and kept reminding me again and again and again in a myriad of different ways. Lisa Stewart. Celeste. Victoria Sack. Michie Rollison-Sebree. Melissa Miller. Robyn Boone. The nurses at Wishard Memorial Hospital. Elizabeth Aldora. Amy Beery. There were so many others who refused to allow my body to only experience the violence of my mind.
I am a pacifist, or at least I try to live my life as something resembling a peacemaker, yet I spend this Memorial Day reflecting upon those who’ve given their hearts and their souls toward helping me fight my wars, both real and imagined. I spend this Memorial Day reflecting upon those who’ve fought like hell for my happiness and my health and my prosperity and my learning how to live a life of tenderness. There were those who lost their own battles and I grieve that loss and I hold tightly to the light they so enthusiastically shared with me. There were those who continue fighting their own battles, yet like me they’ve figured out that by sharing our light somehow it makes our own light brighter.
On this Memorial Day, I’ve come to realize that serving the United States is serving each one of us and I spend this day living in a state of awe and gratitude for those whose sacrifices have allowed me to fully live a life filled with joys and sorrows and successes and failures and connections and disconnections and love and loss and love again. I am grateful, not for the wars that we’ve endured, but for those who’ve fought like hell so that I might have a better life than anyone ever imagined.
On this Memorial Day, I’m grateful for those who serve this country and its people in ways that I couldn’t or wouldn’t. On this Memorial Day, I reflect upon what it means to serve and sacrifice and fully surrender oneself to a higher cause. I may not believe in or be grateful for war, but I am grateful for those who are willing to give everything they have and everything they are to improve people’s lives, protect that in which they believe, and in serving people they don’t even know and people with which they openly disagree.
There aren’t words to adequately express my gratitude for those whose sacrifices have embraced ability over disability, victory over victimization, love instead of hate, and peace instead of conflict. You’ve given your hearts and minds and bodies and lives to me and I can only pray I’ve used your sacrifices well and in a way that honors everything you’ve given. I can only hope and pray that I’ve offered those same sacrifices of heart, mind, body and soul to others and that somehow the circle has gone unbroken.
Now then, when today is done and the celebrations are set aside and the rituals have been completed. I truly give thanks to those of you who will do it all again tomorrow.