St. George, Utah, 2006
David doesn’t want your pity, but he doesn’t mind if you stare. There he sits, the left side of his face drooping slightly, the corner of his mouth suspended in a delicate, permanent frown. Today he’s sporting mix-match threads, an oversized T-shirt, a pair of filthy tennis shoes he borrowed from a friend, and camouflage pants shredded at the hems.
His arms are speckled with tattoos. Some homemade, some professional, some professionally painted to cover up the worst of the homemade ones. The tats are chaotic, prompted by the compulsivity to express his inner rebel. There’s the burning cross, a gigantic medieval dragon, two dangling skull cherries, a Celtic rose, and a Celtic dragon. There’s a large tat done in bold letters above his left elbow that shouts the name of his hero OZZY!
Seven, homemade ink letters pepper the fingers on his left hand spelling his nickname, Skooter. David has always had a hard time planning ahead. So when he ran out of fingers and had more letters, he simply dropped down a knuckle and worked his way back across his hand.
He acquired another tat this year. This one consists of the ten letters of his last name leaping three inches high in Old English lettering spanning his shoulder blades. How did he pay for this tattoo? He traded his black, shiny moped to a friend—the would-be tattoo artist—for a deal that amounts to roughly one hundred bucks a letter.
I told him, “Look at the bright side, David. When you’re sitting at home because you don’t have any wheels, you can at least look at your back in a mirror and know who you are!”
Depending on the week, David will be sporting a different haircut. This week his noggin is showing a week and a half of growth after having been sheared like a lamb down to the bristles. A month from now it will resemble a decent barbershop cut and cap him with an air of intelligence. David will then shave the sides of his head to slash out a jagged Mohawk. As the weeks progress, the lines of the Mohawk will become more irregular, because not even a normal person can hold a razor in one hand, a handheld mirror in his other hand, and then bounce his reflection off the bathroom mirror and expect to cut straight lines.
What follows will be three weeks of spiked hair in which he looks like a pineapple. His mother, Gena, and I joke with him about his unflattering hairstyles, because advice sinks in better for him after a good laugh. About the time we convince him the Mohawk must go, he promptly shaves most of it off, starting from the crown of his head and working his way forward. But he always leaves the bangs, split by a cowlick, which dangle over his forehead for a few more weeks like a pasted-on mustache until he shaves his head again and repeats the entire process. I know this will happen again and again, because he’s been repeating this obsessive cycle since his near-death experience over two decades ago.
David requires an enormous amount of time and energy, which will become evident in the telling of his story. After decades of caring for David, I’m sad to report my cache of patience is about exhausted. I’ve become much harder on the lad as the years have progressed. However, if I’m free to give myself the benefit of the doubt, maybe I became the way I am out of necessity. For when it comes to the sheer number and magnitude of the unfortunate circumstances that transpire in David’s life, I’ve learned how to decipher the real emergencies from the imaginary ones.
Just the other day, Gena and I were vacationing in Idaho where we were eager to spend a few days relaxing around a campfire by the Snake River without getting any calls from David. Why we were stupid enough to be so optimistic I don’t know, because we’d never left David alone for more than a few days without a manufactured catastrophe occurring.
Dana, my daughter, called the day after we arrived in Idaho and said, “David’s driven himself to the emergency room on his moped. He thinks he’s having another heart attack.”
This was David’s third heart attack of the month. Should we have been worried? As parents, we’re obligated to be worried, but are we duty-bound to experience the pandemonium of thinking our child is having a heart attack for what must be the twentieth time in a year?
He’s in good hands, we convinced ourselves. He’s at the hospital, and we’re a day away anyway. Thank goodness he has Medicaid. A few hours later, we got the expected call from Dana that he was okay. We drove back to St. George the following Monday. I told Gena (her being the greatest of all mothers and me playing the unsympathetic dad) that one of these days David’s going to fall asleep on his arm and it will go numb and then he’ll really think he’s having a heart attack! (David’s gotten into the habit of reading one of Gena’s old nursing diagnostic textbooks, which advised him that tingling in the arm may represent the onset of a heart attack.) Guess what happened on Tuesday? David woke up, called us from his apartment, and convinced Gena he was having yet another heart attack. Away to the emergency room they flew. I stayed home and mowed the lawn. Needless to say, the signs and symptoms miraculously disappeared by the time he was checked in to the hospital. Hours passed. (It was the emergency room.) David wanted to go home. He said, “I don’t have time for this kind of son-of-a-bitchin-fuckin- bullshit.” (His penchant for cussing will soon be revealed.) Gena forced him to wait and see the doctor, hoping the experience might deter him from crying wolf the next day.
A doctor finally had time for David and asked, “What were you doing when you noticed your arm was tingling?”
“I was sleeping, and when I woke up, my arm hurt.”
And then the doctor gave him $500.00 worth of emergency room medical advice. “That can happen when you’re sleeping, David. Your arm might fall asleep, but it doesn’t mean you’re having a heart attack.”
A few days later, he got word that the brother of his girlfriend was going to kick his butt. Bullies have been using David as a punching bag to satisfy their sadistic proclivities ever since they realized how vulnerable David can be. I wanted to tell the brute, “Why don’t you pick on someone who doesn’t have a brain injury?” but I let it drop. At David’s age, my involvement only weakens his stature among his friends. But David was hysterical, and his mind was conjuring up all kinds of ways he’d bleed. He would not go back to his apartment to sleep, or shower, or change, or eat, or brush his teeth.
When he received the call and first learned of the bully’s intentions, he rode his moped over to his grandma’s apartment wearing my old army jacket I’d given him and his pajama bottoms. During the next four days, he hid out in her living room and slept on her couch, no doubt parting the curtains every time he heard the neighbors passing by. Not until day five did he manage to gather enough guts to sleep in his own bed. Monetary incentive might have boosted his courage. We told him that he would not get his allowance until he went back to his apartment.
Now, for reasons that profoundly disturbed me, the police in St. George had him pegged as a druggie or a drunk. Officers would stop him for merely stumbling down the sidewalk. I’d log the random checks down on paper, anticipating that I’d need to present documentation of the infractions to a lawyer one day. My log grew to four pages in length, even though I skipped writing all the superfluous details. On average, the police “interviewed” him once a month over a three-year period. The interviews were part of a new policing trend in which the force was trying to better know the members of the community (I was matter-of-factly informed one day). Funny, the officers never took the time to introduce themselves to me, probably because I didn’t stumble along the sidewalk with a bad limp. Or maybe they were just getting to know certain kinds of people whom they planned to one day be ferrying over to the jailhouse.
I can’t really blame the police can I?
I really can’t blame the police, can I? David is on prescription drugs and walks like a drunk. Who wouldn’t, if one leg was shorter than the other, having been snapped at the thigh and pinned with steel bolts? David walks on his tiptoes to compensate for one leg being shorter than the other. His equilibrium will never recover since his head bounced off the hood of that car, hurling him down the street into another parked car where he collapsed lifeless in the middle of the road.
David possesses a prehistoric concept of the value of money. Ten dollars is a hundred dollars is a thousand dollars. What he knows is that money is the most sought- after commodity and spoils like milk if he doesn’t spend it all in one day. Give him any amount of cash, and as long as there’s a store or restaurant open, he won’t stop buying or eating until his pockets are empty. On a good day—on an exceptionally rare day—he’ll keep a few bucks to buy cigarettes for the following day.
We’ve tried everything to teach him to be responsible with his allowance. If we give him all his cash at the beginning of the month, we’ll be paying his way through the next twenty-nine days. Give him money twice a month and it only spares us a day or two of him begging for more. Once a week works okay, but a few bucks every day works best. The trouble is, it’s not fun or convenient handing out a tiny allowance to a grown man every morning, especially since he lives across town.
We used to buy David electronics—televisions, stereos, game consoles, CDs, DVDs, and the like. Each year at Christmas and on his birthday, we vow never to buy him electronics again. We’ve yet to keep this vow. What David has hawked at pawnshops could pay for his college education—if he could focus long enough to earn a degree. After three failed attempts at college, I’m convinced a higher education is not in his deck of cards.
The nice individuals at the vocational rehabilitation center in Utah tried their best to move David forward in life, but David let them down too many times for them to take him seriously again. Their latest attempt to better David was to set him up in an electronics apprenticeship. I thought about giving David a reality check and telling him how difficult this program would be, but I couldn’t find it in my heart to dash his hopes. The program takes years to complete and requires oodles of mathematical skills. I wondered why the guidance counselor thought he could tackle the program in the first place. As I’d guessed, David lost interest in the program a week later, which spared him from experiencing yet another failed attempt at life.
David knows tomorrow will come, but planning for this obvious inevitability is slightly beyond his mental prowess. One thinks he would mourn the dawn and dread the approaching dusk as the sun creeps around the world bringing yet another day of challenges, yet this isn’t the case. David’s thrilled to be alive, and he’s so excited for every fresh new start that it’s almost impossible for him to get a good night’s sleep. His sleeping habits are more like that of a typical house cat. In general, a twenty-four-hour period for him is divided among moments of alertness, occasional napping and spacing out throughout the day, and then staying up to the wee hours of the night.
Dealing with David’s disability income, subsidized housing benefits, and food stamps is a horrendous nightmare. All three benefits are run by different governmental agencies requiring fantastical amounts of paperwork. Even a minute fluctuation in David’s income by way of a job—or possibly the cash found in his birthday cards—could cause his benefits to decrease or be eliminated altogether. Most recently, he got a seasonal job that lasted just a few months, and this caused a substantial drop in his disability income. After the job ended, his compensation was so screwed up that he suffered a significant loss of income. Gena spent a full year and countless hours trying to recoup his losses but finally gave up. Lesson learned. It is far less stressful for Gena and me to encourage David not to be a productive member of society and, consequently, far less productive for society not to have wonderful people like David contributing to it.
Playing phone roulette
When the government has questions or needs facts, there are threats made to cut benefits for not getting an agency a few bits of information within a specific deadline. Normally, these requests come by way of a form letter, dated late in the process, and delivered just days before the response is due. Pity the person who needs questions answered to meet these deadlines. Just try calling one of these help lines and listening to a recording with seven different options, which fails to mention option eight—the option you need!
If and when you do get through to a real voice on the phone, expect a two-month delay from the date you thought the problem would be solved. Next, plan to take a day off when you realize nothing was solved and you have to start all over. Take names, write detailed notes, document, and then push, push, push for the rights of your child, because few will.
And it’s not like David’s trying to bleed the welfare system dry. David likes to work and wants to work, but his injuries prevent him from consistently working. He can’t do long hours by the day, and he can’t maintain the focus required of him to hold a job for more than a few weeks. His pattern has been to start a full-time job and in a week or so he’s usually down to part time, because he can’t handle the workload. Often, this process is not entirely his fault. In the real world most bosses lack the patience or experience to deal with a person who has suffered a brain injury.
No, David doesn’t want your pity, despite the fact that I’ve offered a smattering of reasons as to why you should take pity on him. Here I have erred and beg your pardon. David is my son—my firstborn and only son. If you are a parent, perhaps you can understand my disappointment that David was robbed of a normal life at such a tender age.