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Headwinds
The Dead Reckoning of the Heart
By Thomas A. Reis AuthorHouse
Copyright © 2013 Thomas A. Reis
All rights reserved.
ISBN: 978-1-4918-1952-4
CHAPTER 1
The Letter
Christmas was approaching. I was in graduate school earning my MSW at the University of Georgia. My parents asked what I wanted for Christmas. I didn't want another sweater or shirt or pair of jeans. And then, after a pause, this idea came to me:
I'd like you to each write a letter to me. Write it as if it is the last letter you would ever send to me. The rule is that you can't consult each other on it. That's all I want for Christmas; each of you writes me letters as if it was the last I would ever hear from you. What would you want to say?
My mom, not surprisingly, wrote in her letter about finding Jesus and staying close to the Lord. But this is part of what my father wrote, which has stayed with me ever since:
Christmas, 1983
Dear Tom,
Well, this is a most unusual request; for your Christmas present, you wanted me to write you a letter (without talking to your mother about it) and write it as if it was the last letter I ever wrote to you. What would I say to my son if this was it? I'm 62 years old as I sit down to write this; let's hope there are many more years ahead before this truly is the case! Geez, where do I begin?
Actually, I've got to tell you that I have been pondering this for some time ever since you made the request over a month ago. Where would I start.... I've started this a dozen times and hardly get beyond "Dear Tom" before I find myself crumpling up another sheet of paper. Each time I sit down to write, I draw a blank. How do I tell you something I've never told you before? I've got so many things to say but how do I say it? Where do I begin? Maybe I'll start at the beginning ... your birth.
I know, you hear about your birth story as each one of your birthdays pass, by because your mother replays the whole ordeal in "living color" to "celebrate" the occasion in the re-telling of the tale. Since your mother is such a great story teller, I always let her take the lead as she regales us with the annual story of your birth. God knows I've never been much of a story teller! I'm not sure why I never told you my side of the story; perhaps I was always waiting for the "right time" or when you became a man. But now you are 25 years old, in graduate school, and for some reason, now seems like the right time to tell you, so here goes.
When your mother's time was due we called the ambulance and in 3 minutes flat they were at the door. Soon we were racing down the freeway toward Chicago and Little Company of Mary Hospital at 85 mph when I heard the attendant say, "Her water broke!" Minutes later, as they backed into the emergency entrance of the hospital, and peeled back the blanket that covered your mother, I heard the attendant then say, "Like hell that's water, its blood!" Apparently your mother's placenta had burst on the ride in. Soon your mother was whisked away in a stretcher as I was directed in to the Expectant Father's Room.
I paced back and forth in that room for about an hour when the doctor came in to apprise me of the situation. "Your wife was touch and go for a while but I think we can save her; I think she's going to make it. But your son is another story; I'm not sure he is going to make it." He paused and then added, "It may not be a bad idea to just let him go; he has a birth defect hand (none of the digits are fully formed) and his face is all deformed. It would not surprise me if he has extensive brain damage as well. I'm thinking it might be better for his quality of life and yours if we just let him go and concentrate on saving your wife."
I paused for a moment as the reality of his words sunk in ... "brain damaged," "birth defect," "deformity".... My head began to spin with all kinds of thoughts, and then I felt a rage well up inside of me, like I was watching a scene from a movie unfold before me; I found the words pouring out of my mouth coming from a place deep within me, a place I was not familiar with; I shouted "He has every right to live and you will do everything you can to save him. I want to see him right now!" Later I found myself looking through a glass box at you with all kinds of tubes connected to you to keep you alive and I thought how easy it would have been to turn the oxygen flow off the respirator and let you die. For some reason in that moment of standing over you, it must have been the hand of God, I all of a sudden felt great peace, I knew you would make it....
I never heard my father's side of the story until that moment almost 30 years ago when I first read those words. It shook me to the core. It dawned on me that I owe my life to the decision my father made in that moment, in that waiting room long ago. This man, who was always in the background, always a mystery to me, a man who never said much, never shared much, when it came time to step up, he did, he said yes to my life. And for that I am grateful.
I have often pondered what that moment must have been like for him. Bringing a crippled baby into the world in the 1950s was very different from today. It was not unusual at that time for parents and doctors to collude and let kids born with disabilities die rather than to live a life destined for multiple hospitalizations and institutionalization. The United States, and for that matter the world, wasn't a very accepting place for disabilities. The quality of life was not very good at all for the disabled at that time. People with disabilities were frequently segregated in institutions away from the public, and the idea of educating and employing them wasn't a part of our collective imagination back then.
And then I think about the desperation my father surely must have felt as the sole breadwinner of our family. He was working two full-time jobs to put food on the table and pay the mortgage, living paycheck to paycheck, with three kids under 5 years old. He almost loses the mother of his children and the love of his life and then he is told that his fourth child, his youngest, is severely handicapped and may be brain damaged. I often wonder if I would have made the same choice if I were in his shoes. Would I have followed the doctor's advice and pulled the plug? Was the tougher choice to let me live?
Thus began the story of my life.
CHAPTER 2
A World of Difference
THE STARE
I've seen that look if not
a million times before.
Oh, it's changed over the years ~
people seem to hide it better as they
grow older, The Stare.
It's a stare that boxes me
into a fate
I cannot change.
A box that seems forever
to remain the same.
Please tell me if this really is
some kind of a game.
I may look different but
our hearts beat the same ~
I may need more assistance
but I'm not immune to pain.
Oh, please, once, just show me
that you care ~ I care.
My questions of why echo on
inside,
the answer seems ever distant
as I wait for a reply.
Don't get too close, don't spend too
much time.
Don't touch, don't share, no one
ever dares.
The stare comes back ~ it always
does, but seldom does
it care.
It follows me wherever I roam,
a stare that does not dare ask
me "why"?
A stare I see forever, inside.
-- Thomas A. Reis, 1982
Amazing how decisions made in the moment, decisions made with little thought of consequence, can have effects that last a lifetime.
The last words my mother heard before losing consciousness that night were, "If we can't save both of them, then we go for neither of them."
Thus ended my mother's life. My mother "died" for 3 or 4 minutes; she has never forgotten that moment. She remembers slowly leaving her body and watching nine nurses and doctors frantically trying to resuscitate her dying body. Over to the side, I was on another table surrounded by my own set of nurses and doctors trying to keep me alive as well.
She remembers moving to a great, white, penetrating light and the feeling of peace like a curtain being drawn over her, feeling a sense of warmth and connection that she had never felt before or since. She was basking in this surreal space between this world and the next, and in an instant, like someone switching on a bright light in a dark room, she remembers being back in her body. She rebelled at the thought of being back as her body convulsed in pain, but she has never forgotten those moments spent suspended out of her body. That was my mom's near death experience, and that was the start of my life.
The evening started out innocently enough. It was late at night and a rare moment of rest when my mom was watching the weekly Western series called Gunsmoke at the end of yet another evening caring for my three other siblings, all under 5 years old. That's when the first pains started. They were annoying and spaced far enough apart yet, like background noise, ever present.
My brother and sisters were all sleeping and Dad was sleeping as well, having just finished his second job, another 16+ hour day. The house was quiet with just the flickering of the black and white TV and the dim light on next to the Lazy Boy. My mom was sitting in it with her feet propped up, resting her tired legs.
The pain intensified. Flo, the neighbor behind us who was a good friend of my mother's, saw the light on through the kitchen window, as she frequently did, to visit with my mom late at night. Mom was frequently up at all hours with one child or another, taking care of innumerable ailments. It became a regular occurrence for Flo to come over and help out.
The pains now were gaining intensity. Still, Mom hesitated, not wanting to wake my father, who was tired and exhausted. Sleep was a rare commodity for my father in those days. Eventually, the pain became so great she awoke my dad.
After assurances that Flo would stay back with the kids, my mom and dad found themselves in the back of an ambulance speeding the 20+ miles to Little Company of Mary hospital on the south side of Chicago.
In order to save my life, and with my mother "dying," the doctors used forceps to pull me out of her belly quickly. In using forceps, however, they put too much pressure on my right temple region and cut off the facial nerve, leaving me with a palsy paralysis on the right side of my face, causing permanent muscle and nerve damage. The result is a permanently crooked smile and an asymmetrical face, causing unimaginable pain that would become a reservoir of personal despair. Along with a crooked smile, I would have a deformed lip, my right eye constantly drips tears from the strain of never being able to fully close, and one eye would be more open than the other.
As if my face wasn't enough of a challenge, I was also born with a birth defect left hand I have always referred to as "Nubby." When I was 3 years old, I asked my mom, "Why did I get Nubby?" She had a load of laundry in one hand and was taking out the garbage with the other, but my question stopped her in her tracks. She thought for a moment and then, looking down on me, she replied, "I just didn't have enough," and then walked out of the room.
All these years later, it made sense that she "didn't have enough." After all, she had four kids in 4½ years, I was the last born, and she was all of 5' 2" and under 109 pounds when she gave birth to me, on top of which she smoked—facts that I'm sure went a lot further in explaining why I live with Nubby today. I never have brought any of this knowledge to her attention, since I'm sure on some level she blames herself for the way I look. Why place even more of a burden on her conscience?
I always liked the term Nubby. I always thought it was kind of cute. About 20 years ago, when I was first married to my former wife, out of concern that Nubby might be genetic, we went through genetic counseling. I found out Nubby's scientific name was terminal transfer defect; I liked Nubby a whole lot better. Terminal transfer defect sounded like a disease—way too scientific sounding! I did find out it occurs early in fetal development and it is predominant in males. Frequently over the years, people would ask me if I was a thalidomide baby. A drug frequently prescribed for pregnant mothers in the 1950s, outside of showing up at U.S. military bases overseas and in Canada, thalidomide was never an approved drug in the U.S. So my answer was always, "No, I am not a thalidomide baby."
And so my entry in to the world was anything but normal. I was not only born with a birth defect hand and a paralysis of the right side of my face, but I was also born with asthma. My mother would start out every morning in my life during that first year washing down all the dust from the ceiling, the floor, and all four walls of my bedroom in order to help my struggling breathing.
On three different occasions during my first year, I was given the last rites, and my parents along with the nurses stood around my bed waiting for me to take my last breath. But for some reason, I didn't die. (When I used to recall this story later on in my life, I would tell people that I was like a roach; no matter what happened, I just wouldn't die). My mother's constant prayer was, "Please, God, if my son is going to be a bad person, if he is going to do harm to the world, please take him now. But if he is going to be a good person, if he is going to make a difference in this world, then please, let him live." I often think back at that little prayer and wonder, that's one hell of a thought to fulfill!
I often wondered over the years how things could have been different. What if my mom did have proper prenatal nutrition and hadn't weighed less than 109 pounds at my birth? What if she hadn't smoked during her pregnancy? What if she hadn't waited so long to tell my father? What if they had stopped at one of the seven hospitals they passed on their way to their doctor's hospital over 20 miles away? Of course, I never bring up any of these questions with them; what's the use? It doesn't change anything. The questions never come up with them either, or least they don't voice them in my presence. Still, the questions linger.
It is like I tell my students at the college where I teach: Life is like a card game. Sometimes you are dealt a great hand, and other times you don't like the cards. You can moan and groan and yell that it isn't fair, but in the end, no matter how crummy the hand that you are holding, it becomes your responsibility to play out that hand as best you can. No one else can play the hand for you. When it is your life, there is not a lot of room for bluffing.
When I was 4 years old, I came down with pneumonia and was hospitalized for 2 weeks in an oxygen tent. My first time away from home, I was scared and lonely. It didn't help that at night, when visiting hours were over, I would be awakened and wheeled away by nurses and doctors to a back room on another floor. They would attach electrodes on my face and then experiment on me by sending various levels of shock to my face. I would then indicate if I could feel a shock or if it was greater than before. They would keep shocking me with electrical current running through my face, continually asking, "Do you feel that? Do you feel that?" I kept wondering, "Why are they doing this to me? Where are my parents?" It is 54 years later as I write these words, and I'm still very averse to any overhead, bright, halogen lights shining in my presence today, like they did all those nights when hospital personnel experimented on me. Only after I told my parents, about 7 days into my stay there, did the experiments stop. This happened in 1962. Before the Americans with Disability Act took effect in 1975, it was not unusual for people with disabilities to be experimented on without parental or patient consent.
I always liked Halloween as a kid. It had to be one of the best days of the year. On Halloween, I could put on a mask and, for one day a year, I could fit in like everyone else. In my costume I didn't stick out anymore. No one could see I was different. No one stared back at me. For one day in the year, I could just blend in and be normal. No one would be whispering to a friend. I wasn't poked fun at, taunted, or laughed at. I could just be Casper the Ghost--almost invisible.
(Continues...)
Excerpted from Headwinds by Thomas A. Reis. Copyright © 2013 Thomas A. Reis. Excerpted by permission of AuthorHouse.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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