“IN/PROGRESS” is an occasional WestVirginiaVille feature showcasing excerpts from longer works underway by authors with a West Virginia connection. The following is the Introduction to the memoir “The Air My Flowers Breathe: A Love Story” by The Reverend Doug Minnerly. (Unpublished © 2021 Doug Minnerly)
For Nathan
Te ubesc
always
“This is the story of how we begin to remember
This is the powerful pulsing of love in the veins.”
~ Paul Simon, “Under African Skies,” Graceland, 1986
By The Reverend Doug Minnerly
My son has autism.
Since adopting him and bringing him home from Romania in early 1999, my primary occupation has been raising him to “grow into a man,” as he says. He has done that, magnificently, with help and guidance from lots of people. It really does take a village to raise a child.
But he has made his strides in his own way, according to his own time, by his own strength of will and his desire to be independent.
Today, he lives in his own house with one housemate, a delightful young man who is also on the autism spectrum. They have 24-hour staff support, funded through West Virginia’s Title XIX, I/DD (Intellectually and Developmentally Disabled) Waiver, a part of the federal/state Medicaid program.
My son’s name is Nathan. He was born September 27, 1995, in Brasov, Romania. His given (now middle) name is Florinel, a diminutive of the common Romanian name Florin. It means “little flower.” I later learned that his family name is of Hungarian origin, related to the word for apple. So, it seems that his original name might mean something like “little apple flower.”
Before we had ever met him, we chose the name Nathan, from the Hebrew word for “gift.” After 19 years of marriage with no children, we could think of no better name for this miracle child being given over to our care.
This is the story of Nathan. And me.
Before we had ever met him, we chose the name Nathan, from the Hebrew word for “gift.”
It is a story of love between father and son, told from my point of view and drawing primarily from my memories. The flow of memory is like weather patterns or ocean currents. Memories don’t march up in single file from the depths of the unconscious in an orderly straight line.
Rather, they roil and churn and double back on themselves, creating eddies and vortexes that want to pull you in and under. Memories are like the unruly waters over which the divine Spirit-Wind hovered “in the beginning,” when the universe was tohu wabohu, formless and void, waiting for the divine voice to speak and bring order to the chaos. Like the primordial waters of creation, which needed to be contained in order to bring forth life, memories need context, definition — and order — to give up their wealth of meaning.
When Nathan was new, he, too, was waiting for his parents to find him, to bring him home, and bring order to his life. It is a life-long struggle for all of us to stave off the disruptive, destructive forces of chaos and try to maintain order. The struggle is especially grueling for a person with autism.
I am a Presbyterian minister, “Honorably Retired.” Presbyterians seek to do all things “decently and in order.” Decency and order are easier to achieve in theory than in practice, yet they are what Nathan needs daily to stay on any sort of even keel.
Therefore, as a Presbyterian minister who is the father of a son who craves order, it’s fitting that I introduce our story with a short exploration of the importance of order and dependable routine for people on the autism spectrum. I know how important these are for Nathan and I know that many symptoms and behaviors caused by autism are common among people all across the autism spectrum.
Admittedly, I am generalizing from one specific example (Nathan); but I’m not flying completely blind, either. Over 22 years, I’ve built up a good reservoir of experience, observation, and education about autism and my son to feel confident making some general assumptions.
For instance, Nathan has a strong aversion, even terror, of sudden, loud noises. Popping balloons are among the worst offenders. Comedic performer Hannah Gadsby, in her Netflix TV special “Douglas,” reveals that she, only recently diagnosed with autism, also has a similar aversion.
It is a life-long struggle for all of us to stave off the disruptive, destructive forces of chaos and try to maintain order. The struggle is especially grueling for a person with autism.
Nathan and his housemate both routinely rock back and forth, sometimes quite energetically, when they are sitting “at rest.” I would judge that they are roughly at about the same level of functionality on the spectrum — medium-high to high, depending on what life skills one considers. Neither is close enough to the very high end of the spectrum and able to live completely independently.
For instance, Nathan will never understand how money works, except that you use it to buy things. But relative value has little meaning to him, so $1 is as good as $100 as far as he is concerned.
I offer only my own thoughts on the topic of the need for order, and on any other aspects of autism I delve into, not as an expert who studies autism clinically or scientifically or academically, but as a father who has a son with autism.
Early on, we worked with an organization called The Autism Training Center in Huntington, WV. Our specialist from ATC said that her standard opening line to parents was, “I know a lot about autism; but you are the expert on your child.”
I am head-over-heels in love with my son and I am not ashamed or at all reluctant to say that, again and again. You’ll hear it more than once throughout this book. My wife feels the same and often says, “We’re the most disgusting parents in the world” because we will talk about Nathan at every opportunity. I apologize to every parent who, prior to 1999, I scoffed at for your nauseating, fawning solicitousness toward your child(ren). I have long since surpassed your parental idiocy.
This book is a memoir, of sorts. It does not, however, claim historical accuracy or infallibility, as a fundamentalist’s Bible does. Nor is it biography or autobiography. It is, as its subtitle simply states, a love story.
Nevertheless, in my mind anyway, this is an orderly account of the things that have transpired primarily from January 29, 1999, to the present day. But I wouldn’t be at the present day if I hadn’t also been at all my days before 1/29/99 as well, so my life “BN” (before Nathan) must also be part of the story.
I have tried to organize the material thematically, but I found early on in the process of writing that one thing leads to another leads to another and so on. Maybe it’s more like a conversation than a memoir.
I participated in a “ZOOM” workshop in memoir writing to help me get going on this project. The leader of the seminar commented that my writing was like a pleasant, meandering walk in the woods, often straying from the main path to look at something interesting, but eventually getting back to it. Maybe that was just a nice way of saying I lack focus. Anyway, I took it as a compliment.
The reader will find that I toy with the notion that, perhaps, seemingly random events were actually meant to happen or even had to happen at the precise moment they did happen.
Who knows? I guess that where you come down on this question depends on how much purpose you believe there is to the universe. The study of purpose is called “teleology,” from the Greek telos (end or purpose) + logos (word). An adjective form of telos is also translated in the New Testament as “perfect”:
“Therefore, be perfect as your heavenly Father is perfect.” (Matthew 5:48)
Therefore, throughout my narrative I ask the question: Did everything that has happened in my life (and before, the things that happened to get me to my life) happen so that I would end up right where I am? Or, did it all just happen in a random, purposeless universe and I am where I am purely by chance, like every other particle of matter and energy in existence?
I don’t know.
My life became about doing my damndest to help get Nathan as close as I can to reaching his telos—his own perfection.
I do know, however, that Nathan’s arrival in my life radically and permanently altered the trajectory and the telos of my life so that, like a divining rod, the arc of my life was drawn in a different direction, pointing towards Nathan. My life became about doing my damndest to help get Nathan as close as I can to reaching his telos—his own perfection.
You see, I don’t believe Jesus presented us with an impossible task at all when he told us to “be perfect,” as long as we accept that human perfection does not necessarily mean “without blemish,” but that it means fulfilling one’s purpose as God eternally fulfills the divine purpose. Joni Mitchell sang: “I met a friend of spirit … We laughed how our perfection would always be denied.”
The pursuit of a “good” life is largely about identifying and eliminating those things that are denying our perfection. Isn’t that what religion is supposed to be about? Any religion? Any system of ethics? Any moral code? Hell, it’s what the Ten Commandments are about — eliminating, or at least avoiding, those things (idol worship, murder, faithlessness, thievery, dishonesty) that deny perfection for individuals and for the whole community.
There is so much in the world that day-by-day, minute-by-minute, seeks to deny perfection to my son and everyone with a “disability” or a difference or a uniqueness or a spark of divine beauty that so many people just cannot bear to look at. Instead, they turn away and dismiss the person as something “less than” or even as something aberrant and, therefore, evil.
One of Nathan’s favorite movies is “Hugo,” which, in my opinion, is about the pursuit of telos. I don’t know, however, whether Nathan identifies with the boy Hugo, the hero of the story, or with the little automaton who is brought to life by a heart-shaped key and, in turn, unlocks a mystery that leads to the elimination of decades’ worth of perfection-denying impediments for just about everyone in the movie.
Nathan is the hero of my story, lest you think I’m so vain that I think this book is about me. It is, but I am the “me” writing this book because Nathan is the hero of my life, the heart-shaped key to my perfection.
One morning, many years ago, I dropped Nathan off at elementary school (there was always a classroom aide waiting) and, as I watched him walking towards the building, I thought of Pinocchio when Geppetto sent him off to school, alone and woefully unprepared to be “a real boy.”
Nathan will be a real boy, I vowed that morning.
So, I began fulfilling my telos by becoming, as a friend calls me, “Warrior Dad.” Believe me, you do not want to cross me where my son is concerned.
As for why things happen, I also know that nothing happens in a vacuum (except, of course, things like science experiments or space walks that do happen in a vacuum; but we don’t really have to worry about that too much). “For every action there is an equal and opposite reaction,” says Newton’s Third Law of Motion.
Nothing happens that does not, in some great or small way, affect something else—maybe everything else (you know: chaos theory, the butterfly effect, Jurassic Park, etc.).
Like everything that led to my wife and me going, like Jonathan Harker, to the Carpathian Mountains of Romania in the middle of winter in 1999 to bring our son home.
My hope is that my story, told as I have told it, might reach into the heart of someone who is struggling to find hope in what feels like a hopeless situation.
I always dreamed of having a son. Now I do and here are my memories of why and how that dream came true. They are my memories and, so, for me they are 100% accurate, except where I have embellished or altered them for my own reasons. Let’s just say that everything I have written here is, at the very least, almost true.
Memory is a tricky thing. The quality of a memory is, I think, a function of what we need the memory to do when it is dredged up from wherever memories reside. Nor do we necessarily remember our “past” in straight lines.
Even if I wanted to I don’t think I could describe events, as I remember them, in the order in which they really happened (what is “really” anyway?). My life as a string of events is not very interesting. I would be bored reading about it. Why would I expect anyone I don’t even know to be interested?
Rather, I narrate my memory of certain events from my life, particularly those having to do with my relationship with my own father, from my present state of being as Nathan’s father. My goal is to find meaning in the memories and purpose in the events and to explore how those events formed me into who I am right now and how they forged the unique bond I have with my son.
My hope is that my story, told as I have told it, might reach into the heart of someone who is struggling to find hope in what feels like a hopeless situation. I’ve been there more than once and I cherish those people and things that lifted my eyes enough to begin to see an alternative to the way things are.
Maybe, in a rare instance, some piece of my story might be the heart-shaped key someone has been missing.
At least, I hope my story might be helpful and instructive.
I am also deeply interested in exploring how all the events of my life, not only those few related here, came together (conspired?) to bring Nathan into my life, giving me in an instant not only a whole new understanding of the nature of fatherhood, but effecting in me an existential change of being and infusing me with a new and compelling sense of purpose.
This is the story of my love for Nathan and my determination to do everything I can in the time on earth allotted to me to set the stage for Nathan to live a full, productive, independent, and happy life in the time allotted to him.
The day will come in the not-distant future when I am no longer here to shepherd my son through the dark, shadowy valleys, always with the desire to lead him towards green pastures beside still waters.
That looming reality is my great dread of fatherhood, my “father’s hell.”
But that dread is, for now, far less powerful than the joy I experience day-by-day just being my son’s father.
“The Air My Flowers Breathe: A Love Story” by The Reverend Doug Minnerly. (Unpublished © 2021 Doug Minnerly)
AUTHOR BIO
The Rev. Doug Minnerly is an Honorably Retired Minister of Word and Sacrament with the Presbyterian Church (USA). He served as pastor of three West Virginia churches from 1997 to 2019 and interim pastor of two others. Prior to entering ministry, Doug was a theater professor at Queens College (now University) in Charlotte, NC, where he designed and directed numerous student productions. He recently revived his theatrical skills, directing Shakespeare’s “The Comedy of Errors” in 2016 and a disturbingly graphic production of Shakespeare’s “Titus Andronicus,” performed on Charleston WV’s West Side in March 2020. “Titus” was, as far as he knows, the last fully staged theater piece in the Kanawha Valley before COVID shut down society. Doug and Nathan have taken up camping in their “Go” camper, The Brouha, so named by Nathan. (They call themselves “The Brouha Boys.”) Doug is fond of good cigars, especially in the company of good friends (like the publisher of this journal). But mostly, Doug is head-over-heels in love with his wife, Susan, and their son Nathan who are, as Doug will soon have tattooed on his left forearm, “…the air my flowers breathe.”
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