A nurse pushing a wheelchair popped into David’s room and asked with a thick accent, “Hallo, David. Are you hungry?”
“Yes,” he grunted, with the biggest half smile I’d seen to date. The kid hadn’t eaten for over three weeks!
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Another nurse joined her at David’s bedside. They rolled his covers back and began the arduous task of unplugging the web of wires encircling him. They carefully lifted him out of bed and set him in the wheelchair. His body started to fall forward, and they quickly shoved pillows around his rib cage to prop him up. Then they strapped a makeshift table onto the wheelchair, turning it into a rolling highchair of sorts. As they wheeled him toward the door, he had a puzzled look on his face.
I watched his eyes track from side to side as he passed through the doorway. I imagined his brain was recording the event similar to how a camera might film a scene lit by a strobe light. David was catching only part of the action. He appeared dizzy, even nauseated. The nurse pushing his chair stopped in the hallway just outside the kitchen door and spun David around so he was staring down the length of the hallway. From the corner of his eye, he saw the nurse walk into the kitchen but missed the part when she came back. Suddenly, he noticed the food the nurse had placed in front of him, but he was unaware that she was trying to get him to hold a fork. Once he grabbed the fork, he appeared to have forgotten why he was grabbing it, until the nurse redirected his attention to the food. David seemed shocked when he finally noticed his first meal in weeks. I thought they’d serve him Jell-O or a bowl of Rocky Road ice cream. Instead, they offered him a plateful of sauerkraut garnished with bratwurst!
Gripping the fork like a baby chimpanzee, he took a stab at the stringy, smelly cabbage. The fork tines jabbed the table about four inches to the right of the plate. Something’s wrong, I thought. His hand-eye coordination was way off target. He tried again with the same result and fidgeted with frustration. He stabbed frantically at the food a few more times but kept forking the table. The nurse helped him by sliding the plate over. He managed to scoop a few strands of sauerkraut onto the fork and aimed for his lips. By twisting his head, he was able to land the sour morsels into his mouth. He reacted to the taste with disgust. Nothing abnormal there!
“Is that good?” I asked him.
He wasn’t in the mood for chitchat. His stomach had a hole in it, and he couldn’t care less about what was sliding down his throat to fill the void.
Something is not right …
His arm moved back and forth like a pendulum. I could have set my watch to its rhythm. He was stabbing the plate at exactly the same spot every time. Sometimes he managed to get a few morsels of sauerkraut on the fork, and sometimes he came up empty. Even so, he kept repeating the pattern—reach, stab, lift, bite—over and over again. About the only thing we could do to help was to keep moving the pile of sauerkraut to where he found the food the last time he stabbed it.
I thought it would be fun to pull a practical joke on him. While he was putting the fork to his mouth, I moved the plate four inches out of the way. The fork stabbed the table as though he still thought the plate was in the same spot, but he didn’t stop. He moved the fork back up to his mouth and attempted to eat the air. Then he tried again to stab more food and hit the same empty target. Again, he moved the fork to his mouth as though it had food on it.
I was sickened by what I saw. I knew his coordination was off, but his sense of awareness to his surroundings was disturbingly out of whack. It was as if his world had shifted four inches since the accident, and he didn’t have a clue it had moved. I recalled the doctor telling me weeks earlier that there was a delay in the way David’s brain was processing signals, and I now understood that it might take years—or a lifetime—for him to get back to being normal, if indeed he would ever be normal.
In the coming days, David would enjoy eating more than platefuls of sauerkraut, and he didn’t care what kind of grub he was served. Somebody had to devour all the food my fellow soldiers were bringing us. Like a ravenous pig, he’d eat everything we put in front of him. As the days went by, his aim got better, but eating was still a ritual for him, requiring a great deal of concentration. Once he sat down to the task of eating, though, he was all business.
He also started laughing again. In the movie Forrest Gump, Forrest’s mother is determined that her son be treated like a normal child and getting Forrest a good education is her top priority. But the school principal doesn’t share her determination. Since Forrest’s entrance test score is below normal by five points, Forrest will have to be placed in a special school. The principal implies that Ms. Gump can persuade him not to place Forrest in a special school if she has sex with him. In the next scene, Forrest is sitting on a swing under a tree in front of the Southern mansion where he and his mother live. In the background, we hear the grunts of the principal having sex with Forrest’s mother in a second-floor bedroom. Moments later, the principal walks through the front door and Forrest is now sitting on a rocking chair on the front porch. The principal wipes his brow and tells Forrest how much his mother cares about his schooling. Forrest turns to him and grunts, “He, he, he, he, he,” mimicking the sounds he’s just overheard. That’s the sound David made when he laughed, monotonous and whispery.
Cussing like a drunk sailor
Not only would David learn how to laugh again, but more importantly, he’d find his voice. After he found his voice, he picked up a delightfully embarrassing habit. When he couldn’t find the proper terminology to make complete sentences, he’d use cuss words to get his point across. Not the tame cuss words Grandma might have used like darn and poppycock, but words better suited to enliven prison talk.
“Did you get enough to eat, David?” the nurse asked.
“Yeah, fucking good.”
“The nurse is going to give you a bath now, David,” Gena said to him.
“That shitty nurse there?”
“That one,” I reply.
“But the goddamn water is fucking cold!”
I asked the physician about this distasteful phenomenon.
“It’s caused by David’s frontal lobe damage. He’s more impulsive, and he’ll have less control in the future over what he’s saying.”
In the coming years, I’d learn more about the complexities of the human brain. I’d discover that various parts of the brain control certain functions, that many brain functions are carried out through neurotransmitters assisted by electrical impulses and chemicals, and that all of these components somehow mesh together to form a person’s personality. At the time, I was ignorant of these complexities, but from what the doctor was telling me, David’s brain had been affected by the accident in different ways. I assumed the accident caused temporary brain damage, which meant, given time, the damage would heal itself and David would get well. What I discovered was that David’s head injuries would not only cause parts of his body not to function, but these injuries would also cause drastic changes to his personality. In effect, as his brain was rewiring itself with new pathways, these physical changes were altering the processes and outcomes of his thoughts—in other words, his mental state of being, his very nature. It was becoming more apparent that the boy I knew from infancy to age six would not be the same boy throughout the rest of his life.
Would I love the new David as much as the old David? Of course, I would. If David’s personality changed, it would not alter the love I have for him. It’s not really an option for parents to love or not love their children. This kind of love is hardwired into our genes through tens of thousands of years of evolved human behavior. Would I like the new David? This was the pivotal question.
Is there a difference between loving and liking your child?
Did I like the new way David had learned to express himself that resembled a vulgar lunatic? Given David’s zombie-like eating habits, would I be embarrassed to take him out in public to eat? Whether David could walk again was still uncertain. Would I enjoy spending the rest of my life hand carrying him to and from his wheelchair to wherever he felt like sitting? Would I enjoy spending the rest of my life driving David to various therapies and other appointments? Would Gena and I continue to like taking care of David for the rest of our lives, given that caring for him would entail drastic changes to our lifestyle and force us to put our personal goals on hold indefinitely? After all, parents are people too. We have aspirations and dreams. We have ideas about where we see ourselves in five, twenty, and thirty years down the road. Loving David was easy, but did I like being confronted with the alternative: that I could be taking care of David for the rest of his life—my life? And I would never, ever be able to live my own life as I had planned.
When people get married and have children, they expect to make compromises. Most couples are willing to make concessions because of the obvious reason that having someone to share your life with is a source of immense joy. Even better, raising children with a life partner is a marvelous wonder of the human experience. This pleasure is so satisfying that many parents are willing to disregard their own happiness to ensure that their children succeed and enjoy life.
Reality, however, does not always measure up to the ideal. Raising children is hard work, and most people expect that at some point their responsibilities as parents will end. Like chicks and cubs in the animal kingdom, there is a natural timeline in which the young are reared to an age at which they can take care of themselves, the time when they are affectionately—and merrily—kicked out of the nest or den. What parents and couples expect to be doing in the later years of their lives is rekindling their dreams and reacquainting themselves with each other. They have suspended their personal lives for roughly two decades and now feel an inherent need to complete the cycle of their lives. There is life beyond raising and caring for children. It’s a good life just waiting to be explored, but it cannot be enjoyed until the youngest hatchling in the nest spreads its own wings and takes flight.
So, what happens when a member of the family is broken? What happens when the parents or siblings of a broken family member are required to forfeit their future in order to take care of a person with special needs?
What initially happens is that we look for ways to cope. And we sometimes do this by seeking a divine reason for why we seem to have been chosen to bear this enormous responsibility. And we do this for good reason, because it helps ease the burden. But even if we do not seek a divine reason for being derailed from our personal lives, it would make no difference, for as humans we have evolved to express compassion. Parent to child, lover to companion, family member to clan, citizen to country—we take care of our own, and we do so with natural affection.
Eventually, however, everyone except the saints among us will grow weary of the task. We can handle things for a time, a brief spell really, until we start thinking about our own lives again. And we’ll think our wishes to return to our own lives to be selfish. Imagine—the sheer audacity of it— thinking about what we want as opposed to what they need, as though we’ve lost the right to think about our own future and happiness. Then comes the guilt. Then flows the feeling that we are selfish and victims of our passions and desires. I cannot tell you that overcoming these feelings is easy, only that the anxiety these emotions cause is bearable. But this is only if a person accepts being human and knows that there is time to figure things out. That’s the ticket. Realize you are fallible, accept that you’re prone to a range of conflicting thoughts and desires, and then give yourself time to find the right balance between how much time you should spend on pursuing your own happiness and how much energy you can realistically exert helping others.
Tomorrow, Chapter 6: One Step At A Time