I’ve never sought out Julia Roberts or David Wright or Jimmy Carter; never hoped that (golly gee!) Halle Berry or Brad Pitt or Ray Rice will grace me with 15 minutes for my stinkin’ blog.
I began the Quaz 100 interviews ago because I’m genuinely fascinated by people, and I prefer asking questions to answering them. I want to know how it feels to be a valet parking attendant and not get a tip. I want to know what it’s like, being a firefighter and climbing into a burning building. I’m intrigued by elation and rejection; heartbreak and overwhelming love. I always tell my students (100 times per class) that being a journalist is a gift, in that you have license to ask people almost anything you want. “That,” I shout, “is a beautiful thing!”
The first 100 Quazes have been a mishmash of people from mishmash walks of life. Guitarists like John Oates and Tommy Show and Bruce Kulick; four of Kevin Arnold’s love interests from the Wonder Years; a KKK leader, Miss Black Iowa, a childhood friend fighting through MS, a woman blogging courageously about cancer, an opera singer, a street musician, a Tea Party activist, 12 former Major Leaguers, an erotic escort, a professional skeptic, a bashful illiterate from Little House on the Prairie, the CEO of Panera, the only woman to score a point in Division I football, a dog trainer. Some have been great, some have been meh, but I like to think they all pay homage to the power of curiosity.
This week, for the historic-only-to-me 100th Quaz, I wanted someone special. I’ve fielded countless suggestions, but never one that truly moved me. Then, a few weeks ago, I thought about my boyhood on the mean streets of Mahopac, N.Y. Specifically, I thought of a man who seemed to somehow have this life thing figured out, even from the heartbreaking nest of a wheelchair.
I grew up with Mark and Chris Dessi, and consider both to be good friends. Four years ago their father, Adrian Dessi, was first hit with the idea that he might—might—have ALS. The initial symptoms of Lou Gehrig’s Disease can be vague and misleading, so it’s difficult to diagnose. Yet, ultimately, Adrian’s symptoms could not be dismissed. He was experiencing, among other things, muscle twitches and fatigue.
Indeed, it was ALS.
Now 67, Adrian Dessi is extraordinary. I visited him at his home in Camel N.Y. on a cool Thursday last month, not quite sure what I’d find. Would he be depressed? Solemn? Would he cry? Bemoan the inevitable lost years?
Two words: Hell. No.
Meet my new hero—a man who overcame an rough childhood filled with ritual beatings and dismissive parenting to turn darkness into blinding light. He is the father of two, the grandfather of five, a successful businessman, a loving husband, an ALS sufferer and, oh, yes, stronger than steel.
Adrian Dessi, I am honored to have you as the 100th Quaz.
J.P.: How did you become aware that you had ALS?
A.D.: I had a heart murmur. In the fall of ’09 I went for my physical, and the internist says, ‘You have to go see the cardiologist. Your heart murmur has gotten worse.’ And at the same time I complained to him about getting muscle twitches. He said, ‘Go see the neurologist’’ So I went two paths—neurologist, cardiologist. I wasn’t thinking ALS. Cardiologist comes back and says, ‘The heart murmur is bad. If you don’t take care of it and get valve repair or replacement, you’re going to have serious damage to your heart.’ OK, I go to the neurologist down here, he sends me down to Cornell Weill, and I come back after that. He says, ‘Well, it’s possible-to-probably ALS.’ This is the fall of 2009. So I said to him, ‘How many people have you diagnosed with ALS?’ He said, ‘You’ll be the second.’ I said, ‘OK, time for a second opinion.’ Plus, when you have an ALS diagnosis you don’t go for heart surgery. So we went down to Columbia Presbyterian, to the Lou Gehrig neurological unit, and we met their team, went through their battery of tests, which were a little more extensive than the ones I got previously. And they came back and said, ‘Gee, we don’t think you have ALS. We think you might have benign fasciculations—the muscle twitches. And two weeks later I had my heart valve repaired.
This was now January 10. I had the surgery in Westchester, near White Plains. So I come out, luckily they didn’t have to do a valve replacement. They were able to repair the valve. I come out of the surgery and I say to my wife, ‘I can’t cough. I can’t sneeze.’ She said, ‘Tell the doctor.’ OK. Every morning a team of doctors comes in, checks me after the heart surgery. ‘How you doing?’ I say, I can’t cough. I don’t have the diaphragm. That’s what happened. The surgery … your body goes through trauma through something like open-heart surgery. And the trauma exasperated the ALS in the diaphragm. But I didn’t know it. I did very well with the heart surgery recovery. Within a matter of three, four weeks I was going three days a week to a cardio unit for exercise. Where they monitor you. They’re tracking you as you exercise. They increase the times, the duration, the kinds of exercises. All I kept getting were accolades. ‘You’re doing great! You’re doing great!’ But I’m saying to myself, ‘If I’m doing so great, how come I have to hold onto the handrail to lift myself up the five steps to get into the place?’
J.P.: Were you thinking about ALS again?
A.D.: I wasn’t thinking about anything. All I was thinking about was my body … something’s going on. This is not right. I’m saying to people, ‘I have benign fasciculations.’ But you’ve been in the gym—you know what it is to feel your body increase. You increase your breathing capacity, your stamina, your muscle strength. You feel it. Here I am, going to cardio physical therapy three times a week, 45 minutes each time, and after three months why can’t I walk up four steps? It was like, something’s going on.
On top of all that, I have a bad disc. I had lower back pain. So my internist suggested, ‘You need physical therapy.’ So now I’m up to five days a week. Three days with the cardio, two days a week with the physical therapy. I come home, I lay down on the couch, I collapse. I’m out. My wife’s coming home from work, she’s like, ‘What the fuck is going on? You’re sleeping in the dark at 4 o’clock in the afternoon.’ I said, ‘I don’t know what it is. I’m just exhausted.’ It goes on a little bit longer. I’m complaining about my back. Doctor says, ‘Why don’t you go get an MRI?’ Alright, so I go get the MRI. Now I’m feeling weaker, and I decide I think we need to go back to the people at Columbia to see what’s going on. This is now January 2011. We go back, they check me out and they say, ‘Yup, it’s ALS.’ OK. And at the same time, I’ve got pain here, I’ve got pain here. And the message I’m getting from the neurologist is that ALS is a painless disease. I said, ‘For a painless disease, I’m going through the fucking roof here. This is a bitch. I got pains in my thoracic area, 360 degrees around my body. And I’ve got pain in my lower back. So they sent me to their pain management group at Columbia. I go there, they look at the MRI, and they know I’ve just gotten the diagnosis of ALS. And he said, ‘Well, if you didn’t have ALS I’d be talking to you about disc replacement. Your disc is gone. It’s gone.’ So we started a regiment of lower spine steroid injections and some injects for my thoracic area. So ever since then it’s been—I have ALS and that’s it.
J.P.: What does it feel like when you hear your diagnosis and it’s ALS? I don’t mean, ‘Oh, this is horrible.’ Like, how did you process it and did you accept it? Not accept it?
A.D.: When the first doctor told me and he said it’s possible to probable, I think in my gut I knew it was probable more than possible. And I accepted it. You know, it’s life. You know, how do you accept getting a D on your math exam? It is what it is. You have to deal with it. It was tough telling my wife. I went to the hospital myself, she was still working at the time. It was tough telling my sons, my daughter-in-laws; it was tough telling my brother, Joe. You know, I told my brother. We were playing golf over in Mahopac. He had come up for the weekend. We were playing and I said, ‘Something’s going on, I thought you would like to know. I have ALS’ He was like, ‘What?’
I don’t know how people react to things like that. I didn’t break down. I didn’t cry.
J.P.: No five stages of grief …
A.D.: No, no. It was another punch to the belly like any other punch to the belly you go through life with.
J.P.: That’s pretty amazing. I mean …
A.D.: You get punched enough and you stand up and keep going. You just go along with it.
J.P.: So obviously it’s a famous disease named after a famous baseball player, but how would you describe what it is like to have Lou Gehrig’s Disease?
A.D.: (Long pause) It’s a very frustrating disease. Because it doesn’t affect your brain, it doesn’t affect your heart, it doesn’t affect your bowels, it doesn’t affect your urinary tract. But it affects everything else. So, like, you have your finger in your mouth (Jeff’s note: He’s referring to me, sitting across from him on a couch). I can’t do that anymore. I have an itch above my eye. I can’t scratch it. It’s extremely frustrating because every aspect of your life that you’re so used to doing—you can’t do. I’m at the point now where I’m losing the ability to feed myself. I have to have somebody else to feed me. So it’s just very frustrating.
J.P.: So do you still have feeling in your legs?
A.D.: You have feeling over your entire body. You can come over and tickle my toes, and I can feel it. I just can’t move it.
J.P.: Does it feel like you can move it? Like, can you feel your foot right now and feel the impulse to move it?
A.D.: Um … put your foot on the floor. Now tap your foot. Tap it more. Tap, tap, tap. I can’t do that. It’s like it weighs 5,000 pounds, trying to do that. I can lift my heel, but I can’t lift my toes. My toes—I’m straining right now with every ounce in my body. And I can’t do it. There’s no pain involved. The foot doesn’t hurt. I just can’t move it. And if I try to move it, I strain and strain. But it doesn’t move.
J.P.: And what’s your breathing like? (Jeff’s note: Adrian has a breathing tube beneath his nose)
A.D.: When I came out of the surgery, I lost about 40 percent of my diaphragm. I’m now down somewhere around 30 percent. That’s why I use this. It’s not oxygen—it’s just air. It’s what they call a BiPAP machine. What the BiPAP does is it inhales and exhales for you. And it’s set to the amount you need to expand your diaphragm. This is basically what’s keeping me alive. I could probably survive without it, but I’d have to use other muscles to try and suck in the air. So there’d be a lot of strained breathing, and what that does is it easy exhausts you. Because it’s not a natural muscle. You get heavy breathing when you’re running, you stop or slow down and take a breath. Sitting at rest, you’re OK. Well here, sitting at rest, I’m using all these surrounding muscles and that exhausts you. And one of the watch words for this illness is ‘energy conservation.’ Don’t exhaust yourself. Because it exacerbates the situation.
I don’t know how much you want to know about the disease. Wait, Jeff, do me a favor and remove this pillow from behind my neck (Jeff’s note: I do). The disease affects upper motor neurons and lower motor neurons, basically. Basically that means it’s in your brain and it’s in your spinal cord, and it affects the transmissions from your brain to the muscles, and then back from the muscles back to the brain. The transmission back being disconnected is worse than the transmission going there. And what that means is, when you exercise, the muscles send instructions to the brain, ‘Hey, I just got exerted.’ And the brain comes back and says, ‘OK,’ and it does certain things. Without that connection the muscle just lays there, and that’s what’s happening. Now it doesn’t affect every muscle in your body. But what it does affect is the mouth, and a lot of people start with symptoms of slurring words, of dribbling. And they’ll gradually lose the ability to speak, the ability to chew, the ability to swallow.
A.D.: Probably. Thankfully, knock on wood, I haven’t presented those symptoms yet. It’s interesting—last month I was out on Long Island, and I met a friend of my aunt’s who was diagnosed about a year ago with ALS. She can’t swallow, she can’t chew. But she stands, she walks, she writes. The disease doesn’t attack everybody the same way. Everybody is different. The next big area is diaphragm. That’s my big problem area. The next area is gross motor, and the fine motor, your hands. As you can see, I have trouble with my hands. I can’t make a fist or hold a pen. I can barely press the buttons on the remote.
J.P.: So does this disease come with definitive moments—Shit, I can’t make a fist any longer! Shit, I can’t press the buttons on the remote! Shit!
A.D.: Slowly. This hand looked like this hand two months ago. It’s slow, in that it wasn’t from yesterday to today. But it’s fast, in that six months ago I was able to walk with a walker. Not a lot, but I could walk 25 … 30 steps. I could stand up. You know, I could feel myself. I could stab something with a a fork. I can’t do that now. It didn’t happen yesterday, but it happens pretty quickly.
J.P.: This might sound like a dumb question, but do you wake up in the morning and think, ‘Crap!’ Or can you wake up in the morning and think, ‘This is going to be a good day”? Can you have enjoyment? Is that impossible at this point?
A.D.: The screwy thing about the disease is it doesn’t affect your brain. So I’m the same guy who was playing golf three times a week in 2009. But I just can’t do it. There is no … I’m not in a lot of pain. I’m in pain because I have disc issues. But other than that, if I’m laying in bed, I’m looking forward to the day. Then you get up and you deal with the realities. You can’t do this, you can’t do that.
J.P.: So what do you do? What are your days, generally?
A.D.: My days generally? Well, because I can’t dress myself and bathe myself and feed myself, it takes me the better part of the day just to get up and get washed and cleaned and fed. That’s done by 12 … 1 o’clock. I get up at 9.
J.P.: Do you sleep the same as you once did?
A.D.: I probably sleep a little better. Because I’m tired. There are some nights I sleep like a log. I usually get down around 10, so I sleep from 10 pm until 9 am.
My day … I watch a lot of TV. I’m a movie fanatic, so I watch a lot of movies. Last night I watched Prometheus. I like the concept of the movie, because it’s based on books I read a long time ago about aliens coming to earth. It was interesting. I probably see six, seven, eight movies in a week. I’ve seen Argo, Lincoln, Sliver Linings Playbook, Django …
I also have two other things that keep my busy. I read. If I decide today I want to get into a book, I’ll start today and I won’t stop, and I’ll read two-to-three books a week. I have to use a tablet. I can’t turn pages. Ask your buddies Mark and Chris, when we used to vacation down in Florida, I’d take two big thick books, and I’d read them in four days—1,400-page books. I’d hear, ‘You didn’t read that book!’ They’d argue with me. I like to flip through a nice, thick book—start at 8 in the morning, come in at 5 for dinner. But now I can’t turn the pages, so I use my iPad. I also have model Lionel trains downstairs. I have a 10-foot x 10-foot table I’ve been working on for years. It used to be my father in law’s set, from the 1950s and 60s. I did a lot with the trains until I started getting severe ALS symptoms. So I pretty much stopped in 2010. But I’ve been relying on Dwight (Jeff’s note: Dwight is his lovely home health aide), and my friends who come over, to be my arms and legs. I direct them. My grandkids are beside themselves with it. I just bought a lot of new equipment, and I’m trying to solicit any neighbors who might have free time to help me build. Another problem is access—the only way to get downstairs is I have to go outside and in the back, which means when there’s snow on the ground …
J.P.: Lou Gehrig gives his famous speech, and he says, ‘Today, I consider myself the luckiest man on the face of the earth.’ Do you get it? Is it possible to feel that way while having a disease like this?
A.D.: I’m gonna die. Sooner than planned. ‘You plan it, God laughs’—that’s an old saying. I went to a support group at Putnam Hospital, and there were people with neurological diseases, and they were having a guest speaker who was a pharmacist. And there’s about, maybe, a dozen people, and some guests—caregivers. And the majority of the people had Parkinson’s. And they’re bitching and morning that they shake all the time. ‘Why do I have to shake all the time?’ and ‘Isn’t there something I can take to stop the shaking?’ I’m sitting there saying to myself, ‘I’ll take shaking all the time … I’ll give you my right arm and take all the shaking. Because you guys don’t know what the fuck you’re doing.’
And I’ve said this to lots of people, and please forgive the language: I’m one of the luckiest fucking guys in the world. I’m a street kid from Brooklyn. You know what that means? It means your expectation is that you’re going to end up like the guy on the corner, flipping half-dollars in the sharkskin suit. Or you’re gonna end up, if you’re lucky, working in the railroad repair facility right around the corner. I grew up—nobody in my family graduated college. In fact, my mother never graduated high school. Eighth grade—that was it. My father, he was a big shot. He got his high school diploma. So I’m a street kid from Brooklyn. I was blessed. I was 30-years old, I was the vice president of a bank. A half-dozen heartbeats away from the presidency. Making a very, very reasonable salary. And I’m sitting there thinking, ‘Where do I go from here?’ I had no … it was like, nobody in my family is the vice president of a bank. I mean, my relatives and friends would talk to a vice president of a bank like he was a god. So it was like, ‘What the hell is going on here?’ So I’ve been blessed all my life. I’ve got beautiful sons, my daughter-in-laws are gorgeous, bright young girls. My wife is the love of my life. I mean, I made more money, did more traveling, vacationed in places that I never thought possible. Jeff, we went like half a dozen times and rent a villa in the Riviera. And go for a month with the kids. We had the best freakin’ vacations. The place we rented was a friend of a friend’s, it was on an acre of land with a big in-ground pool overlooking the Mediterranean, 20 minutes from Cannes, 40 minutes from Nice, 50 minutes from Monaco. We were right there, in Provence. It was unbelievable. You thought you were in heaven. I’ve been around the world three times. I’ve done shit, as a kid growing up I would have said, ‘You’re crazy. Impossible. Will never happen.’ My brother is a former school-teacher. He taught in Long Island for 34 years. He’s also a football coach. He coaches seventh and eighth graders. We’re talking, he says, ‘What was the most amount of money you made in a year?’ I told him, I thought he was gonna faint. He couldn’t believe it. It was beyond his comprehension. Am I a multi-millionaire? No. But we did very well.
I have nothing to complain about. There’s nothing to bitch about. Am I disappointed with this disease? Yeah. What am I disappointed about? See my five grand kids? (Jeff’s note: He motions toward a nearby photograph). I’m not gonna see them grow up. That’s what’s disappointing. I have one grandson, Luke. I’m gonna give Luke my golf clubs. I have a brand new set of golf clubs that I think I used a half dozen times. But I’d love to be there when he’s graduating high school and say, ‘Here kid, these are for you.’ I don’t know if I’m gonna be there. I don’t think so. He turns 3 in July.
J.P.: Do you fear death? Does the idea of death itself make you nervous or uncomfortable?
A.D.: I don’t think about it. It’s there, but it’s … I never was the kind of guy that was in my head with my problems. I was never, ‘Oh, shit, you lost your job. What will you do? What will you do? How you gonna get a job?’ Yeah, I got shot down a lot of times. That’s life. My brother tells stories of how he would share my experiences with his friends, because he couldn’t believe it. He says, ‘You lose your job at A, you get your job at B for twice the money. How the fuck do you do that?’ You do it. ‘You lose your job with B and you get 50 percent more salary with C. How the hell do you do it?’ You do it. Those were opportunities. I didn’t set the price scale. They set the price scale. I just had the skill set. He used to crack up. I’d always say, ‘Joe, you just go do it. If you get it in your head, you start beating yourself up. That’s not the way to go.’ I had that as a kid. My parents beat the hell out of me—physically and emotionally. And I learned, you can’t go there.
A.D.: Yes. I’m from Gravesend. I was born in 1945. I went to St. John’s Prep. My father was Adrian—I’m a junior. And my mother was Marie. I have an older brother, Joe, and Carol is my younger sister. My father worked in the manufacturing business. He was a clothing cutter. They’d take the apparel, make a suit, you’d lay it out on these long tables, they would lay down on top of that a sample and he’d come along with a high-speed drill and cut out stacks of materials in the shapes needed to make an arm, a leg, etc.
J.P.: Was he a tough guy?
A.D.: A tough guy? Not really. My father worked in the clothing business, but that’s what they used to call a seasonal business. What that meant is he was out of work a lot, so he’d pick up a lot of odd jobs to supplement. And it was a family business, sort of. My grandfather was in the same business, my grandmother was in the same business, my father’s uncle was in the same business. But he worked six days a week. Saturdays he would get home, like, 5 o’clock. That was half a day. Because Monday through Friday he would work two jobs. He’d get home, like, 9 o’clock at night after leaving at 7 o’clock in the morning. So I didn’t see him much. Saturdays he would come home, he would maybe go shopping with us, then go to sleep. And he slept all day Sundays. It was his day off. So I never really had much of a relationship with him.
J.P.: So not a good dad, not a bad dad. Just a dad …
A.D.: He was … my mother was the disciplinarian. I don’t know what kind of upbringing my mother had. But my mother used to beat the shit out of us.
J.P.: With a belt? Stick?
A.D.: More sophisticated. My mother was a thrower, so she threw anything around at you. I got stuck with a fork in my arm from across the table. She threw a steel pot of food at my brother, and luckily he ducked quick enough it went through the regular window and the storm window, down three flights. Because we lived on the third floor. She would use broom sticks on us, but then she’d complain to my father that the stick broke. So my father would tell her to get a thicker stick. And one of my father’s odd jobs was he finagled himself to become a barber instructor. He never worked as a barber, but he got himself employed where he could get a cushy job teaching people to become barbers. That was his night job. So he worked at the factory cutting material all day, and then in the evenings he would work from 5 until 9, helping people to learn a skill. So what he did is he brought my mother a barber strap. Which is actually like three straps of leather. And my mother used to wear it on her apron. So she’d have it readily available. She would take us into the bathroom. She wore it on her apron, and she also had a hook on the door behind the bathroom and she’d hang it there. She would bring us into the bathroom.
It was interesting, as adults, talking to my brother and my sister about our treatment. They both agreed I got the worst of it because I wasn’t the daughter and I wasn’t the first son and I was a little bit of an antagonist. I pushed the envelope. Anyhow, that’s the bad side. The good side is it made me tough. I have a pretty high tolerance for bullshit.
J.P.: I wrote a book about Walter Payton. His parents would have him go out back and get a stick, then beat him with it. Yet he loved his parents. Can a mother be that way and also be a good mother? Or no?
A.D.: (long pause) I don’t know what a good mother is. I had a mother. I know what she was. She wasn’t a doting, loving person. My father developed a nickname for me when I was a teenager. The nickname was, ‘The bum.’ That’s how he introduced me. When I was in high school I went to preparatory school, so you had to wear a suit every day; gotta wear a shirt and tie. So I needed clothes, and he was in the clothing business. He’d say to me, ‘Tomorrow, come meet me in the office. We’ll measure you up for a suit.’ So I’d go, I’m at his work, and I’m meeting all the people he works with. And how was I introduced? ‘This is my son—the bum.’
J.P.: At that age, did it sting? Or only in hindsight?
A.D.: At that age it was sort of like, ‘What, is this a joke? Is this not a joke?’ It was kind of water off my back. But you asked about my mother. Move forward. I’m 30-something-years old. Married. Two children. Responsible job at a bank. A 3,000-foot colonial home. Brand new car in the driveway. And my mother says to me, ‘Well, maybe you’re not such a bum.’ And I said to her, ‘You S.O.B.—you meant it all those years. And Dad meant it.’ It wasn’t a joke.
My father and my father-in-law were at a family event, and the grandkids were all these, in college. And my father said, ‘Boy, we did good.’ And I said to myself, ‘What the fuck did you do?’ Get the hell out of my house. But I didn’t say that.
There was a situation [later on] where I sat down with him with my sister, and we read him the riot act. He said, ‘I’m flesh, too! I’m flesh, too!’ He was stupid. My mother was also stupid.
J.P.: Did you ever forgive your parents? Or now, that they’re not here, are you able to sort of, I don’t know …
A.D.: You know, it’s so tough. I want to forgive them. Because you need to forgive to move on. At the same time, uh, I did well. I did well. From where I came from, from my family. I remember going to a dance with my aunt and my uncle, my aunt says to my uncle at the time, ‘No one makes $100,000 a year.’ I was in my 30s. I was going, ‘Holy shit, she doesn’t realize I make that kind of money.’ I’ve done extremely well. Part of that is because I got my ass kicked; because I got my lip broken when my mother threw a metal dish at me three months before I got married. It made me tough, and because I’m tough I’m able to do things.
So on the one hand, yes, I should forgive them …
J.P.: But you don’t want to give credit for unintended consequences …
A.D.: Exactly! On the other hand, you say, ‘It would have been nice to have had been told when I was growing up that I was a responsible person, that I was a good person.’ I tell my granddaughters—one’s gonna be 7, I have two 5-year olds, and I have two littles who are 2 ½ a piece. But I tell the older girls, because they can understand. I tell them, ‘Tell me what you see when you look in the mirror?’ And they say, ‘I’m kind, I’m pretty and I’m smart.’ And my answer is, ‘That’s right. And don’t you forget it every time you look in the mirror.’ I remember as a kid, 8 … 9-years old, looking in the mirror and thinking, ‘Who am I? What am I? Except a punching bag.’
A.D.: I remember, vividly, I was about 11, and I ran away. I had no money. But I took off. I just ran away. If I had had some money, I would have gotten on the bus and gone somewhere. But I ran away and during that time we lived, literally, by a train yard. It was a depot for the subway system. It’s one of the largest ones, down by Coney Island. And I walked that entire facility. I was gone for the better part of eight, 10 hours. And during that period of time I said to myself, ‘I’m out of here. I’m intellectually, emotionally out of here. I don’t care what they do to me, I don’t care how much they beat me. I’m out of here.’ And I realized the only way to get out was I had to develop skills and I had to educate myself. But to do that was very tough for me. I had no foundation of support to say, ‘You’re smart, keep going.’ What I had was beatings. So it was like, ‘Why should I get a 90 or 100? I’m going to get my ass handed to me anyway.’ So there wasn’t much motivation. I had to become self-motivated for the education. It was not easy because I was an emotional basket case. I went to a Catholic prep school, which you had to pay for. My brother went to Brooklyn Tech, so that was free. For me, I went to Brooklyn Prep and I thought a little, ‘Gee, wow, my parents have supported me.’ But it didn’t dawn on me until years later that they didn’t do that for me. They did it for themselves.
J.P.: Why? Status?
A.D.: Yeah. They always said, ‘You have to go to college. You have to go to college.’ I was an emotional basket case. I got out of high school, I graduated on June 9, 1963. On June 10, I started work. I worked at Steeplechase. It was an amusement park on Coney Island. The Brooklyn Cyclones’ stadium is where Steeplechase was. I started working, and I worked Friday nights from 6-to-1, Saturdays from 12-to-12 and Sundays from 12-to-10. And on Mondays I worked at my brother’s old job, in the mail room of a not-for-profit called 40 Wall Street. He got a better job for the summer, so I took over for him for the summer. So I worked Monday through Friday, 9-to-5 on Wall Street. So I proceeded to work 20-straight weeks, seven days a week, working something in the neighborhood of 90-some hours. Why? To save money for college. Because when I got into college, what I got was a handshake from my father. ‘Congratulations, I’ll sign whatever you need me to sign.’ That was it. So I had to do it on my own. I needed money. Well, think about yourself when you graduated high school. That summer, you celebrated, rejoiced, rejuvenated, then went on to school. I didn’t have that opportunity.
So what did I do? I got to school—St. John’s University—and I did terribly. I got kicked out in my first year for academics. So my father was there, reinforcing ‘My son the bum.’ So I had to get a job, and I got one working in a bank as a teller. Lincoln Savings Bank—the branch on Flatbush and North Street. And I lived at home. And I did that for two, three years. Bought a brand new 1965 Volkswagen Beetle for $1,865. My car payment was $50 per month. I was working as a teller, so I was only making $65 a week. It was tight, but I could do it and I could get to work. And I enrolled in Pace as a non-matriculated student, and I started taking business courses at night. Until I got my grades up sufficiently, and then I quit work, I went to school full-time and I started working part-time because I still had to pay my tuition. I graduated in 1969. My brother went to college before me, so I was the second in my family to graduate.
A.D.: It was extremely meaningful to me, because it was the sense of accomplishment. It motivated me to go off for my graduate degree. I have an MBA from St. John’s. I went back to St. John’s to prove to myself I could get it through there.
J.P.: Do you think your parents were impressed when …
A.D.: I didn’t give a shit. I wasn’t doing it for them. I was doing it for me.
J.P.: Lemme ask this—I always think there are two ways people who are raised by bad parents can go themselves. They can either follow that path or say, ‘Fuck that, I’m going to be absolutely nothing like that.’ It seems like you took the second path. Were you motivated by bad parenting?
A.D.: Yes. My brother and I both agreed we were not going to parent the way we were parented. We both agreed we were not going to have a home life the way we had a home life.
J.P.: So was it easy to be a different kind of parent? Did it come more naturally to you than you thought?
A.D.: It was a hard job. A very conscious job. I have to give credit to my wife. My wife is a sweetheart; came from a 180-degree different type of environment. Very loving person, very giving person. It took a lot of her help to help me to see things.
My brother has three kids—his oldest son, Joseph, has his own ad agency. His daughter, Stephanie, has her own occupational therapy business in Manhattan. She specializes in breast cancer victims. His son Matthew is a geologist, but he works for an environmental company and he’s the head marketing guy. And you know my sons. Not too shabby. And they are—all five of them—are aggressive, they’re tough business people and they’re loving parents. They all have beautiful kids, great partners. That makes me and my brother and my sister feel so good.
J.P.: Like you made it?
A.D.: Yeah. We … we changed the cycle.
A.D.: It’s beyond words. Beyond feelings. I don’t know where to begin. It just chokes me up. I mean, for the majority of my life nobody did shit for me. From when I was born, nobody did shit for me. All I got was a 2×4 upside the head and a kick in the ass. To see my son do something for me—I can’t put words to it. I’m not used to it. Don’t know how to react. You know—never had it.
This disease has a plus side.
J.P.: How do you mean?
A.D.: It’s made us all closer. One of the biggest problems I’ve had in my life is accepting love. I didn’t know how to do that. Because what I got as a child certainly wasn’t. I got discipline. I was ‘My son the bum’ to my father and my mother’s words were, ‘Children are to be seen and not heard.’ And she lived by that. ‘Sit there and shut up. You have no point of view. You have no decisions. You have nothing to say.’ So it was difficult. And I had to deal with lots of crazy emotions. I was a pipe smoker for more than 40 years. I loved to go out and smoke. But it was also a crutch. Family would be in the house having a good time, I’d go outside and look in. I couldn’t go back in. I didn’t feel I was worthy to be inside, because I didn’t know how to deal with those kinds of emotions. It’s taken me a long time. This disease kicked me in the ass in that regard. So it’s helped me in that regard. I’m much more open and accepting and understanding.
Intellectually, I don’t understand it. But emotionally I’m learning how to take it.
• Five reasons for someone to make Mahopac, N.Y. his/her next vacation destination: The people, the beautiful lake, the people. I don’t know what else.
• Do you feel like you abandoned Mahopac by moving to Carmel, N.Y., it’s arch-rival town?: Uh, no. We don’t feel we have because we haven’t. We go to Mahopac for everything. I’m a Mahopac guy. When I was 12, my father’s cousins used to summer right near Lake McGregor. One summer my father decided to bring us up, and I fell in love with Mahopac. Years later when we were married and looking for a place to live, Mahopac came up and I said, ‘That’s the place!’
• Best advice you ever received?: Be true to yourself.
• How did you propose to your wife, Patricia?: We were sitting on the beach on the south bay on Long Island during a sunset.
• How did you meet your wife?: In college, at a dance at a hotel in Manhattan. I was a super senior at Pace, she was a freshman.
• What is the greatest moment of your life?: There are two—when my sons were born.
• Best movie you’ve ever seen?: Jesus, that’s a toughie. I like the movie, what the hell is it, the black-and-white movie … It’s a Wonderful Life.
• Do you feel like people approach you in a different way now that you have ALS?: Yes, they do. And it’s very uncomfortable. I would like people to approach me like I’m standing up 6-feet tall, 210 pounds, kick your ass, shake my hand with a nice tight grip. I don’t want to be perceived as that sickly old guy sitting in a chair. You know how you get like that, I think? When you start letting this situation take over your life. That’s when that happens?
• Do you never have ‘Why is this happening to me?’ moments?: Fleeting. Short. Brief. Kick their ass, get them out of my head. It’s really good, because if I let it take hold—and I know this, because I’m smart enough to know this—that will be the end. That will be the end of my relationship with my family, it’ll be the end of me. And you know what? I’m not dying today and I’m not dying tomorrow. So fuck you. I don’t have time for this shit.