CHAPTER 1
The Letter
Christmas was approaching. I was in graduate school earning myMSW at the University of Georgia. My parents asked what I wantedfor 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 isthe last letter you would ever send to me. The rule is thatyou can't consult each other on it. That's all I want forChristmas; each of you writes me letters as if it was the lastI would ever hear from you. What would you want to say?
My mom, not surprisingly, wrote in her letter about finding Jesusand staying close to the Lord. But this is part of what my fatherwrote, which has stayed with me ever since:
Christmas, 1983
Dear Tom,
Well, this is a most unusual request; for your Christmaspresent, you wanted me to write you a letter (withouttalking to your mother about it) and write it as if it wasthe last letter I ever wrote to you. What would I say to myson if this was it? I'm 62 years old as I sit down to writethis; let's hope there are many more years ahead before thistruly is the case! Geez, where do I begin?
Actually, I've got to tell you that I have been ponderingthis for some time ever since you made the request overa month ago. Where would I start.... I've started thisa dozen times and hardly get beyond "Dear Tom" beforeI find myself crumpling up another sheet of paper. Eachtime I sit down to write, I draw a blank. How do I tellyou something I've never told you before? I've got so manythings to say but how do I say it? Where do I begin? MaybeI'll start at the beginning ... your birth.
I know, you hear about your birth story as each oneof your birthdays pass, by because your mother replays thewhole ordeal in "living color" to "celebrate" the occasion inthe re-telling of the tale. Since your mother is such a greatstory teller, I always let her take the lead as she regales uswith the annual story of your birth. God knows I've neverbeen much of a story teller! I'm not sure why I never toldyou my side of the story; perhaps I was always waiting forthe "right time" or when you became a man. But now youare 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 ambulanceand in 3 minutes flat they were at the door. Soon wewere racing down the freeway toward Chicago and LittleCompany of Mary Hospital at 85 mph when I heard theattendant say, "Her water broke!" Minutes later, as theybacked into the emergency entrance of the hospital, andpeeled back the blanket that covered your mother, I heardthe attendant then say, "Like hell that's water, its blood!"Apparently your mother's placenta had burst on the ridein. Soon your mother was whisked away in a stretcher asI was directed in to the Expectant Father's Room.
I paced back and forth in that room for about an hourwhen the doctor came in to apprise me of the situation."Your wife was touch and go for a while but I think wecan save her; I think she's going to make it. But your sonis another story; I'm not sure he is going to make it." Hepaused and then added, "It may not be a bad idea to justlet him go; he has a birth defect hand (none of the digitsare fully formed) and his face is all deformed. It would notsurprise me if he has extensive brain damage as well. I'mthinking it might be better for his quality of life and yoursif we just let him go and concentrate on saving your wife."
I paused for a moment as the reality of his words sunkin ... "brain damaged," "birth defect," "deformity"....My head began to spin with all kinds of thoughts, and thenI felt a rage well up inside of me, like I was watching ascene from a movie unfold before me; I found the wordspouring out of my mouth coming from a place deep withinme, a place I was not familiar with; I shouted "He hasevery right to live and you will do everything you can tosave him. I want to see him right now!" Later I foundmyself looking through a glass box at you with all kindsof tubes connected to you to keep you alive and I thoughthow easy it would have been to turn the oxygen flow offthe respirator and let you die. For some reason in thatmoment of standing over you, it must have been the handof God, I all of a sudden felt great peace, I knew you wouldmake it....
I never heard my father's side of the story until that momentalmost 30 years ago when I first read those words. It shook me to thecore. It dawned on me that I owe my life to the decision my fathermade in that moment, in that waiting room long ago. This man, whowas always in the background, always a mystery to me, a man whonever 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 forhim. Bringing a crippled baby into the world in the 1950s was verydifferent from today. It was not unusual at that time for parents anddoctors to collude and let kids born with disabilities die rather than tolive a life destined for multiple hospitalizations and institutionalization.The United States, and for that matter the world, wasn't a veryaccepting place for disabilities. The quality of life was not very goodat all for the disabled at that time. People with disabilities werefrequently segregated in institutions away from the public, and theidea of educating and employing them wasn't a part of our collectiveimagination back then.
And then I think about the desperation my father surely musthave felt as the sole breadwinner of our family. He was working twofull-time jobs to put food on the table and pay the mortgage, livingpaycheck to paycheck, with three kids under 5 years old. He almostloses the mother of his children and the love of his life and then heis told that his fourth child, his youngest, is severely handicappedand may be brain damaged. I often wonder if I would have made thesame choice if I were in his shoes. Would I have followed the doctor'sadvice 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 withlittle thought of consequence, can have effects that last a lifetime.
The last words my mother heard before losing consciousness thatnight were, "If we can't save both of them, then we go for neitherof them."
Thus ended my mother's life. My mother "died" for 3 or 4 minutes;she has never forgotten that moment. She remembers slowly leavingher body and watching nine nurses and doctors frantically trying toresuscitate her dying body. Over to the side, I was on another tablesurrounded by my own set of nurses and doctors trying to keep mealive as well.
She remembers moving to a great, white, penetrating light andthe feeling of peace like a curtain being drawn over her, feeling asense of warmth and connection that she had never felt before orsince. She was basking in this surreal space between this world andthe next, and in an instant, like someone switching on a bright lightin a dark room, she remembers being back in her body. She rebelledat the thought of being back as her body convulsed in pain, but shehas never forgotten those moments spent suspended out of her body.That was my mom's near death experience, and that was the start ofmy life.
The evening started out innocently enough. It was late at nightand a rare moment of rest when my mom was watching the weeklyWestern series called Gunsmoke at the end of yet another eveningcaring for my three other siblings, all under 5 years old. That's whenthe first pains started. They were annoying and spaced far enoughapart yet, like background noise, ever present.
My brother and sisters were all sleeping and Dad was sleeping aswell, having just finished his second job, another 16+ hour day. Thehouse was quiet with just the flickering of the black and white TVand the dim light on next to the Lazy Boy. My mom was sitting init with her feet propped up, resting her tired legs.
The pain intensified. Flo, the neighbor behind us who was a goodfriend 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 wasfrequently up at all hours with one child or another, taking care ofinnumerable ailments. It became a regular occurrence for Flo to comeover and help out.
The pains now were gaining intensity. Still, Mom hesitated, notwanting to wake my father, who was tired and exhausted. Sleep wasa rare commodity for my father in those days. Eventually, the painbecame so great she awoke my dad.
After assurances that Flo would stay back with the kids, my momand dad found themselves in the back of an ambulance speeding the20+ miles to Little Company of Mary hospital on the south side ofChicago.
In order to save my life, and with my mother "dying," the doctorsused forceps to pull me out of her belly quickly. In using forceps,however, they put too much pressure on my right temple regionand cut off the facial nerve, leaving me with a palsy paralysis on theright 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 personaldespair. Along with a crooked smile, I would have a deformed lip, myright eye constantly drips tears from the strain of never being able tofully 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 witha birth defect left hand I have always referred to as "Nubby." WhenI was 3 years old, I asked my mom, "Why did I get Nubby?" She hada load of laundry in one hand and was taking out the garbage withthe other, but my question stopped her in her tracks. She thought fora moment and then, looking down on me, she replied, "I just didn'thave 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 shewas 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 furtherin explaining why I live with Nubby today. I never have brought anyof this knowledge to her attention, since I'm sure on some level sheblames herself for the way I look. Why place even more of a burdenon her conscience?
I always liked the term Nubby. I always thought it was kind ofcute. About 20 years ago, when I was first married to my formerwife, out of concern that Nubby might be genetic, we went throughgenetic counseling. I found out Nubby's scientific name was terminaltransfer defect; I liked Nubby a whole lot better. Terminal transferdefect sounded like a disease—way too scientific sounding! I didfind out it occurs early in fetal development and it is predominantin males. Frequently over the years, people would ask me if I was athalidomide baby. A drug frequently prescribed for pregnant mothersin the 1950s, outside of showing up at U.S. military bases overseasand 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 wasnot only born with a birth defect hand and a paralysis of the right sideof my face, but I was also born with asthma. My mother would startout every morning in my life during that first year washing down allthe dust from the ceiling, the floor, and all four walls of my bedroomin order to help my struggling breathing.
On three different occasions during my first year, I was giventhe last rites, and my parents along with the nurses stood aroundmy 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, Iwould 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 theworld, 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 himlive." I often think back at that little prayer and wonder, that's onehell of a thought to fulfill!
I often wondered over the years how things could have beendifferent. What if my mom did have proper prenatal nutrition andhadn't weighed less than 109 pounds at my birth? What if she hadn'tsmoked during her pregnancy? What if she hadn't waited so long totell my father? What if they had stopped at one of the seven hospitalsthey 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'sthe use? It doesn't change anything. The questions never come upwith 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 islike a card game. Sometimes you are dealt a great hand, and othertimes you don't like the cards. You can moan and groan and yell thatit isn't fair, but in the end, no matter how crummy the hand that youare holding, it becomes your responsibility to play out that hand asbest you can. No one else can play the hand for you. When it is yourlife, there is not a lot of room for bluffing.
When I was 4 years old, I came down with pneumonia and washospitalized for 2 weeks in an oxygen tent. My first time away fromhome, I was scared and lonely. It didn't help that at night, whenvisiting hours were over, I would be awakened and wheeled awayby nurses and doctors to a back room on another floor. They wouldattach electrodes on my face and then experiment on me by sendingvarious levels of shock to my face. I would then indicate if I could feela shock or if it was greater than before. They would keep shocking mewith electrical current running through my face, continually asking,"Do you feel that? Do you feel that?" I kept wondering, "Why arethey doing this to me? Where are my parents?" It is 54 years later asI write these words, and I'm still very averse to any overhead, bright,halogen lights shining in my presence today, like they did all thosenights when hospital personnel experimented on me. Only after I toldmy parents, about 7 days into my stay there, did the experiments stop.This happened in 1962. Before the Americans with Disability Acttook effect in 1975, it was not unusual for people with disabilities tobe experimented on without parental or patient consent.
I always liked Halloween as a kid. It had to be one of the bestdays of the year. On Halloween, I could put on a mask and, for oneday a year, I could fit in like everyone else. In my costume I didn'tstick out anymore. No one could see I was different. No one staredback at me. For one day in the year, I could just blend in and benormal. No one would be whispering to a friend. I wasn't poked funat, taunted, or laughed at. I could just be Casper the Ghost--almostinvisible.
