Art by Andy Fecile
When Mike comes home, his family is faced with a new reality and an impossible choice.
Produced by John Fecile, Steven Jackson, and Lizzie Schiffman Tufano
John and his family are collecting donations for the Brain Injury Association of America, an organization that helps all people affected by brain injury. Follow this link to a tribute page for Mike.
While visiting home for Thanksgiving, John shows his parents a draft of the documentary for the first time.
CREDITS & ACKNOWLEDGEMENTS
Additional sound recording by Patrick Tufano
Pedal steel music contributed by Curtis Heath
Thanks to the Fecile family, James, Deb, and Mike’s friends for their courage and honesty.
The producers would like to personally thank: Jennifer Brandel, Shawn Allee, Jesse Dukes, Logan Jaffe, Carmine Cervi, Aaron Wickenden, Dan Rybicky, Kyle Henry, Spencer Parsons, Curtis Heath, James Talambas, Brendan Baker, Chloe Prasinos, Alex Kotlowitz, Gordon Quinn, Emily Strong, Ryan Gleeson, Jon Radulovic, Stephanie Cohen, Mary Reitter, Marie Beattie, Dr. Giampaolo Gallo, Bryan Racine, Charlie Driscoll, Kevin O’Neill, Dave Esposito, Nick Esposito, Steve Schwartz, Luke Cloran, Mary Pat Kling, Paul and Juanita Masanek, Connor Price, Dr. Mary Lynn Fecile, Tricia Fecile-Moreland, Sean, and Sarah. Thanks also to WBEZ, Kartemquin Films, Columbia College, and everyone who attended feedback listens or listened to a rough draft.PLAYLIST
Curtis Heath – Pedal Steel 1 – NA
Curtis Heath – Pedal Steel 3 – NA
Trent REznor and Atticus Ross – Clue One – Gone Girl (Soundtrack)
Curtis Heath – Textures – NA
Curtis Heath – Pedal Steel 1 – NA
amiina – Kola – The Lighthouse Project
amiina – Glamur – Kurr
Graham Reynolds – Complete Stranger – Richard Linklater: Dream Is Destinty (Soundtrack)
Masayoshi Fujita – Swan and Morning Dew – Stories
Sylvain Chauveau – Juichi – Umarete Wa Mita Keredo
Harold Budd & Brian Eno – Against The Sky – The Pearl
Graham Reynolds (feat. Golden Arm Trio) – Pose As A Nark – A Scanner Darkly (Soundtrack)
alva noto – Grains – UTP_
Bryce Dessner and So Percussion – Section 1 – Music for Wood and Strings
Curtis Heath – Evil Wins – NA
Stars of the Lid – Articulate Silences – And Their Refinement of the Decline
Steve Reich – Electric Counterpoint I. Fast – Radio Rewrite
Curtis Heath – Pedal Steel 1 – NA
Daniel Lanois & Rocco DeLuca – Satie – Goodbye To Language
Fecile Family [repeated dial tone]
Mike: This is Mike. I’m not here right now. Leave me a message.
Can we start by doing a… Can you give me as concise an explanation as you can of what happened to Mike? I’m talking about the jump at Penn State.
Dad: Okay… The fall.
Yeah. Well, you call it a fall, but why do you call it a fall?
Dad: Because I don’t believe that he was thinking clearly at the time.
Michael fell four stories from the balcony of his apartment at State College onto a sidewalk. He had been acting strangely in the days before.
I just wanna make sure I have as much information as you guys can give me. I just wanna know what the story is so I can think about, if there is a positive way to use it, what that might be.
Friend: I remember he was addressing all of us, all of his friends as “my brothers.” It was almost like he was walking around like he should have had a cloak on, like he was…
Friend: He started showing an interest in more paranormal things, I guess, specifically aliens or UFOs
Dad: It could have been a beginning of a psychotic episode, or it could have been related to the meningitis that they found when he was in the ICU. He did not test for any illegal drugs in his system.
Mom: He did have cannabis in his system.
Dad: It wasn’t recent was the explanation that was provided.
What was after that?
Friend: After that, it was Super Bowl Sunday. He came over Sunday (Super Bowl Sunday), Pittsburgh vs. Green Bay.
Dad: He didn’t appear to be interested in the game, which his roommates find to be odd.
Friend: He was like, “You picture where he’s gonna throw the ball and you make him throw that ball. You make him throw that ball.” And then he brought up 10.06, he said “There’s gonna be an atomic bomb dropped. There’s gonna be a bomb dropped tonight, 10.06. It’s gonna happen. It’s gonna happen here and we’re all gonna die.”
* * *
Dad: So it’s February in State College, it’s very cold… He ended up going for a walk on campus with a friend of his…
Friend: We were cutting through an alleyway and he was saying, “Right now we’re walking through the shadow of death.”
Dad: He did not wear a winter jacket, he went out in shorts and a T-shirt.
Friend: I remember thinking to myself, “What am I doing? What am I here for? Why am I still walking with him? We should just turn around and go back…” We continued on, we continued on.
Dad: He climbed the fence and ended up on a practice field.
Friend:He stopped and got on a knee and he’s like, “I have to pray.” He’s like, “Hold my hand and pray.”
Dad:Somewhere in that process he also lost his sneakers.
Friend: Then he stands up and starts walking down the hill, in the snow. I’m like, “Dude, your slipper’s still here.” He said, “It’s supposed to be there.”
Dad: Mike had a delusional episode, and then was Mike; then he had a delusional episode, and he was Mike. So when the boys fished him off the field and got him home, when he woke up in the morning he was a little under the weather, but he seemed like Mike. He went to work Monday.
Friend: Towards later in the night he started preaching around again.
Was that the night?
Dad: Two boys kept an eye on him, two boys went into a bedroom to try to figure out who to call, and that was when he went over the edge of the balcony.
Friend: He walked right out on me. I turned to the door, and as he pulls the door open I realize what he’s about to do and I take a step towards him, but it was like… He didn’t even think about it. It was just like one forward motion, like “I’m gonna do this”, and he hopped off the balcony.
Dad: He went over the edge, he leaped over it like it was a stone wall in a field.
* * *
I’m pretty much in the same spot where my brother used to sleep, he used to lie every day… Yeah, I’m sorry, Mike. I’m sorry… We didn’t know what we were doing.
* * *
Why did you and mom decide to start a family?
Dad: Well, I loved your mom, and we got married so we could start having children without anybody yelling at us.
Mom: We aren’t big plan-aheaders.
Dad: We had a great time with you. Things got better when Michael came along, and then things got better again when Patrick came along. It just seemed like the perfect thing to add a fourth, and then finally your mom convinced me, a fifth… Emily and Andy.
I’d like you to describe our family.
Sister: Should I start with the pugs?
No.[unwrapping Christmas presents; family scene]
Sister: We’re all strangely-humored, quirky people. Mom’s the quiet little Irish woman, dad’s a loudmouth Italian… I am the youngest, and I am weird, I don’t know…
Came out last year, changed my name to Andy – that’s why everyone’s referring to me as Andy and using thee and they pronouns now. Those are my pronouns now. I don’t know, I’m queer; that’s the best way to put it.
Then there’s Emily… I was in Pittsburgh, and she’s too smart for her own good, and…
Then there’s Patrick who lives at home, and I can hear him story through my walls. You’re the brother who went off and did the arts, and things… Now you live in Chicago, and I have no idea what your world is like.
My turn… [preparing to unwrap Christmas present]
Mom: Hold on, I wanna take a moment… So Michael would be next… I’d just like to take a minute and hold hands and have a quiet moment and send whatever thoughts you want to your brother, okay?
Alright…[the whole family, quietly] We love you, Michael.
I gotta follow that… Alright.
* * *
Mike was the golden child. He was the captain of the high-school football team, a good student, not terribly rebellious…
Well, yeah, he just had a really buoyant spirit, and he would always map out what we were gonna do that day… He would help me out with everything.
Sister: Before he left for college, Mike was kind of like the brother I always looked up to – sorry, John.
I appreciate it. Noted.
Sister: He was kind of the rock of the three brothers. John was the one I could go to for a movie, Mike was the cry, Pat was the laugh.
Was Mike your favorite? Being honest…
Mom: No. I mean, you can’t answer a question like that with kids, because everyone at different times is maybe your favorite.
Dad: He was a little goofy, but he was also really mature. To be honest, John, he was a lot like me.
Mom: He would just text me, “I love you, mom.” I miss that.[phone ringing]
Mom: I know when we got the call…
Dad: 12:58 AM.
Mom: … I heard the house phone ring, and then his cell phone in the bedroom rang. He got it, and then I heard you say “He’s my son”, and then you fell to your knees, and I just froze…
Sister: Well, it was one o’clock in the morning and mom woke me up. She was crying…
She said Mike’s been hurt in an accident, and I was like, “Okay… So we don’t have to go to school tomorrow”, and she was like “No.”
…and she said, “Michael fell…”
I imagine that Twilight scene where she falls down the stairs and crashes through the mirror, that kind of thing… And I was like, “Okay, he fell.” Like, “He broke his leg, no big deal.”
Dad: There was very little light in the bathroom, I remember my skin was gray.
It was just so surreal, and I remember I threw up, and my throw-up was orange. Yeah, I did… I threw up in the sink. I just threw up everything that was in my stomach.
I think I said, “Do you know what happened?” and she said, “Not really yet, just that we have to go.”
Dad: We drove immediately from our house in suburban Philadelphia to the hospital in Altoona.
How long was that drive?
Dad: I have no idea.
Dad: At least.
Mom: Yeah… It was sleeting, it was snowing, it was raining… It was really bad.
Dad: We were on the Pennsylvania Turnpike and I got a call from doctor Simon Lampard. He told me that Mike had arrived and he was being treated and evaluated, and I asked the question “Will he be alive when we get there?” and he said yes. He expected that Michael would still be alive when we got there.
There was no long-term discussion… It was just getting him through the next couple of hours, and that was pretty much how the first few days were. They were battling a fever that wouldn’t be controlled, 106-107 degrees. They had chilled blankets on him, where they’d run ice water through them to keep his core colder. He broke two ribs, one on each side, and he broke his left hip, and he had some swelling around his ankles.
Mom: And a chipped neck too or something.
Dad: Right, a chip in his spine. Considering that he fell 50 feet and landed on concrete, it was remarkable how little physical damage was apparent. But it was pretty clear that his brain injury was very severe.
Mom: I remember standing in the hallway outside his room and the doctors started to assemble; this one doctor wouldn’t look me in — like, I looked up to smile at him and he wouldn’t look me in the eyes. We’d go into this tiny room with like ten doctors…
Dad: Nurses, doctors, the whole trauma team was in there, plus some medical students.
Mom: I don’t know what the specialty was of the head doctor, but he said “The good news is his neck will heal. The bad news is you should probably let him go.”
I remember falling to the floor, and then someone asking us if we wanted water. It was just… We weren’t expecting that.
* * *
Deb: Johnny is taking you a picture, look. Smile for the camera.
Are you calmed down?[Mike moaning]
Can you see me? Blink once for yes.
Deb: Oh, you’re saying too much. You’re saying too much, too fast. Say, “Blink if you can see me, Mike.”
Blink if you can see me, Mike.
Deb: Can you see your brother? Can you see your big brother?[Mike moaning]
Deb: Say, “Hey, big brotheeeer!” Tell your big brother hi![Mike moaning]
* * *
Dad: DAI – diffuse axonal injury. Essentially, what that means is the axons that connect the neurons in the brain were broken, and it was diffuse, which meant it wasn’t in one particular spot, it was in lots of places.
Mom: Kind if like sheered all the way around his brain, the connections.
Dad: He had had bleeding on the brain, and there was also a loss of oxygen to one part of the brain; he had an anoxic injury in another part of his brain.
There was not a lot of clarity about what the long-term prognosis was actually going to be.
Because I remember you calling me on the phone, saying “One day you’ll be able to have a conversation with your brother again.”
Dad: So we met the young man that had been in Michael’s room before him, with the serious DAI injury, and he was going back to school. He’d lost a year. So yeah, at the time I expected to spend time teaching Michael how to speak and how to walk again. Those were the dreams that I was having – that we were in for a fight, but we were fighters.
Deb: Michael spent most of his time after the injury in our basement in a hospital bed. He couldn’t move, his body was very rigid. One of his legs was bent inward and his arms were bent at the elbows towards his chest. His toes were curled, his hands were constantly clenched. He was fed and given water and his medicine through a tube that was connected to his stomach.
Dad: The first day he came home, the hospital bed was set up in the back of the kitchen. He was brought in through the front door, up the steps, around the curve…
Mom: We carried him up the steps…
In the chair?
Mom: Yes. It was very harrowing.
Dad: Over time, the care that Mike got evolved and we got a lot of nursing care through a state grant program, and he had 19 hours of care, seven days a week.
Mom: …which was good, but interesting, because you have different characters.
* * *
Deb: Katie! Hiiiiiii! How are you!
That made me feel real welcome when I came. I felt at home here.
From the very beginning, I wasn’t afraid to ask questions when I didn’t know… And your mom and dad, they talked to me. They were all in…[Mom: Deb kind of took on the role of second mother to Michael.]
Deb: I don’t know, I just… I kind of like fell in love with Michael, so it went from there. When your mom couldn’t be there, I could give Mike that love he needed. Then I would go home and then James would come…[James: I’d leave at six thirty…]
Deb: …then James would go home, I would come…[James: I’d catch the six thirty bus down the corner.]
Deb: We were good with it.[James: It would take me to the subway.]
Mom: James was one of the first aids we had.[James: I’d get to L to 69th street, I’d take the — I forgot the bus… The 109, that takes me…]
Mom: He quickly grew to be kind of part of our family system.[James: To y’all to pick up your dad at the corner. I’d take four or five buses. I gotta leave at 6:30 to get there on time at 11.]
Deb: A good day was when we came at night, we worked from nine o’clock at night to five o’clock the next afternoon. We came in at night, we got stuff down, we’d watch Conan O’Brien, and Mike with me making a bunch of noise… Then I’d be like, “12 o’clock, TV off. Then we wait for your dad to go to bed, then we turn the TV back on…” Then we kept the TV on until like four o’clock in the morning, and then I’m like, “Yo, you gotta get some sleep.” Nine o’clock: “You wanna watch TV all night? You gotta get up. That’s the price you pay.”
James: My piece of mind came there taking care of your brother. I would go there at 11, shift him, feed him, he’d get his 12 o’clock feed, right? If we had to empty his bed, give him water, joke with him – I know he wishes it was a beer, things like that to him… Put something on TV…
He always had a movie; every time I was here he’d have a new movie.
James: Even he’d see something on TV and he liked it, I’d get it. I had a hard time finding some of that crazy white stuff y’all watch, because the bootleggers won’t sell that on the subways, or whatever.
Can you remember some of the titles?
James: Zombie Strippers… Night of the Living Dead…. Zombie Apocalypse… Man, anything that came out, we got. A couple times I dozed off and he was watching Cinemax, but I didn’t have the heart to turn it off. I closed the door and turned the sound all the way down, but he had a grin from ear to ear.
Oh, you mean like the softcore stuff?
James: Yeah… [laughs]
Deb: He a man, whatcha gonna do? C’mon. And at the end of the day when all is said and done, he’s still a man, okay? He’s a man.
So can you talk about his level of awareness? What did you think?
James: What do you mean “level of awareness”?
Was he conscious? Do you think he had something like dementia?
James: You could talk to him about anything. I could talk to Mike about anything. More so to y’all, because… See, to y’all he was your sick big brother; y’all couldn’t get that out of your head. I think we got along because I wouldn’t make a thing of his, “Oh, you poor baby”, like the nurses do. “You poor baby…” “Man, quit faking and stop that shit there!” I mean, you know… I didn’t think of him as an
* * *
Sister: Me and Michael played this game – it was great, because you could do it both in person and over the phone – where he moaned a lot…[Deb: He had a sound for everything…]
Sister: …and then I would mimic his moan, or do it at the same time as him.[Deb: His dull sounds, his high-pitch sounds… He made sounds.]
Sister: …and he couldn’t help but like smile, and we would go louder and longer each time, and we would change it up. He really understood what was happening and we both go on for as long as we could going aaaaaaaaaaaahhhhh.[Deb: You could say hi and he’d go “Hawwwwy…”]
Sister: …until he just started laughing, and that was just something really special we could do together, and it was nice that even over the phone — he knew it was me, because I kept “Uuuuggghhhhh…”[Deb: We knew when he wanted his mom, because he’d be like “Mawwwwww… Mawwwww…” We knew that was his mom, we knew that.]
Mom: One of my favorite moments was when I felt like he was trying to say “I love you”, because he made a three-syllable noise while he was looking at me, and I told him I loved him, too.
* * *
Mom: As the years went on, we formed a little language filled with nods and blinks and me kind of guessing until he smiled that I had done the right thing.
Dad: He did thumbs up… That was huge, because now we could have some type of yes/no conversation with him. When he could control his blinking… You know, one long blink for no, two quick blinks for yes.
Deb: In the beginning, we tried one blink for yes, two blinks for no. That was too much, it was overwhelming for Mike. That’s when I made the suggestion that we ask question like, “Are you in pain? Blink if you’re in pain, Mike.” We had to make the questions to the simplest form. That’s how we made it. And he’d be smiling to us.
James: Imma tell you when I really first started liking your brother – when he was upstairs and we’s gettin tight. I said, “Mike, I bet you never thought a middle-aged black man to be your best friend, huh?” He started laughing, we both did.
Sister: Oh my god, the first time he laughed was very strange… Mom had him on the back deck…[Mom: I need you to smile…]
Sister: …and I was doing homework in the living room. I wasn’t really paying attention to anything. Mom was just cracking up, and I looked back and she’s dancing in front of him. She’s doing like this weird ritual-looking thing, and I see his hand is shaking. So I went out back and was like, “Mom, what the hell are you doing?” and I just saw Michael had this huge smile on his face; he was laughing to the point where like his entire body was shaking. I thought he was having a seizure.
Mom: Oh my god, it was amazing… Because he had spent so many months with no expression. It’s like a small part of him came back to us.
He went through so much pain… For him to be able to laugh and smile at a silly TV show and understand what they were saying, and listen to you read to him and get so excited listening to your voice and laughing… There were moments of beauty downstairs, you know?
He’d get infections, fevers… These terrible muscle spasms would wreck his whole body, and later down the road he started getting seizures. But he had good days, too.
Dad: The one memory that I’ll have forever was when we first had the elevator put in, and we took him down on the elevator. He had a big smile on his face. Then we took the motorized chair down around the corner of the townhouse building, and the grass isn’t smooth, so he’s bouncing with the terrain, and we’re going downhill, and we’re going too fast, and he’s just cracking up. The chair is bouncing and we’re lurching from side to side in the different ruts in the grass, and he felt marginally out of control… He just thought that whole thing was hysterical. He had a huge smile, and he thought we were nuts.
Mom: I found that when I was with Michael outside – and sometimes, believe it or not, I’d have the electric wheelchair, Michael and the three pugs, and we’d just go for a walk, and I’d try not to run over a pug, but they stayed to the left side and we walked… People don’t see you when you’re in Michael’s condition and you have a brain injury; they avert their eyes…
I remember this one day this mother was going into her house with the little boy who must have been about five, and he turned around and we were six feet away, and he said “Oh, no…”, and he just… He was so sincere, and he was looking at Michael and he was just like, “Oh, no…” It was just so honest, you know? Because he saw that he was broken.
Brother: I just… I don’t know… I just didn’t wanna be around him. It made me sad.
Do you have any questions for me?
Brother: What do you expect to do with all this footage?
I don’t know… If I wasn’t trying to do something with this, I’d be thinking about doing something with this.
Brother: What do you want me to talk about?
I don’t know.
Brother: I don’t really know what to say. It’s been pretty awful. After a while I guess I just started wishing that he would die, so I wouldn’t have to see him like that anymore. Because he would have seizures, and I would just hope that one of them would finally kill him.
Can you describe a seizure for me?
Mom: Oh, god… It starts with — his eyes would go to one point in the room and they would stay there.
James: You could tell Mike had a seizure, he started acting funny and his eyes got bulgy.
Sister: …and then sometimes he would start smiling and part of his face would start to tremor, and then the body would just convulse and he would start shaking. One of his seizures – thankfully, I was upstairs for this – was so violent that he just vomited all over.
Mom: Then he aspirated.
You mean vomit got in his lungs.
James: It was really messed up, man… I really… Let’s go on to something else.
Dad: I don’t know what the research is… A grand mal seizure lasts minutes – single-digit minutes, okay? Michael was having grand mal seizures that lasted two and three hours.
Deb: The seizures were starting to come, they was coming a little bit more. They were just coming more and they were staying longer, and they couldn’t really be controlled.
The only way they would stop in less than two hours was if they shut him up with so many meds that he was in danger of dying and he needed to be ventilated.
Mom: You have to understand, every time he went into the hospital – which, by then, had been numerous times – all the interventions were very painful for Mike.
Deb: They had to do that thing to his leg…
Mom: They used this inner ostial thing where they drilled a hole into his leg bone…
Deb: …and that was hurting him
Mom: …and then shot an IV in there. He had that several times.
Dad: We did that every 4-5 weeks – call the ambulance, drill the hole in the leg, go to the ER… But the seizures didn’t stop, and we’d go in and we’d wreck a day; wreck a day, wreck a night, be a mess… Mike would take 3-4 days to recover, and then we’d catch our breath for four weeks and we’d go through it again.
Deb: After every seizure, he was just tired. He got more and more tired.
James: And more and more — I was doing more talking and he wouldn’t respond.
Deb: He started sleeping a lot…
James: He would go into periods where he would just watch TV or stare listlessly over the TV, or just stare like that, like he wasn’t even there.
Deb: When Michael came home, I thought that I could do this myself, and I also thought that if I took care of him, he would get better. I guess on some level I recognized that wasn’t happening. Plus, I was exhausted and I wasn’t admitting it. I realized that I couldn’t get Michael better. I couldn’t do it. There was no amount of love and care that was going to fix him, and it was very depressing.
Were you relapsing more, other than the one time?
Mom: I relapsed like a couple times, but always just like one day, and then I’d pull myself together, I’d talk to my sponsor, I’d just try to make a couple meetings, and… You know, being depressed and being tired, and then adding alcohol is a really bad idea… Which, you know, I found out.
Sister: I haven’t talked about this in a while… Oh, god… I hate this.
Sister: Because it sucks, you know? It sucks to have to say that I was there when my mother attempted to kill herself.
That day I came home from school and mom seemed in a particularly bad mood… So I’d go upstairs and I’d see mom and she is by the counter, and she has some Coca-Cola in a glass and she is sipping it and she’s crying, and I was like “This is not right…”
Deb: I didn’t even pick up on it…
Sister: She should not be home, she should have been at work…
Deb: You know, she came in…
Sister: This was the first time, for some odd reason I remember, specifically she was wiping her nose and walking backwards…
She just was really short and snippy…
Deb: She was like scattered…
Sister: She was just kind of like clumsy and all over the place.
And she was drunk?
Deb: No… I didn’t smell her. I didn’t smell alcohol.
Well, you saw the bottle…
Deb: Oh, I did see — I don’t know… I didn’t smell, I wasn’t there close to her. She was just back and forth, up and down.
Sister: And I think dad said something like…
Deb: “Kate, why don’t you just go lay down…? She said, “I wanna take a nap for a little while…”
Sister: And then she went upstairs… She was so upset that I actually said to Andy, “Would you go check on her?” and she went up and she said, “Mom’s in the bathroom.”
Little did we know that while she was actually in the bathroom she was taking medication to overdose and writing a note.
Deb: And your dad came in. I said, “John, Kate must sleep a long time.” He said, “Okay, Deb, I’m gonna go upstairs.” And he went upstairs…
Dad: …and she didn’t stir when I opened the door. The door creeks, it always has. Usually, that would be enough to get her to at least turn and acknowledge that I was in the room, so she didn’t. She was just lying on the bed. I said something to try to get her attention – nothing. I went over and checked on her, and she was completely unresponsive, and I knew instantly that something was wrong.
Deb: He was a calm panic he going out on one, you know, ‘your mom committed suicide’ Emily and Andy were screaming and they were just carrying on.
Brother: All I heard was just screaming. They were just screaming at the top of their lungs, and I didn’t know what was going on yet, and I went upstairs and I saw mom like that…
Deb: So I just went upstairs, I put your mom on her back, and I started howling at her face, then I started smacking her in her face. I’m like, “You’re not dying when I’m in here. Get up, Kate! Get up! Get up! Get up!”
Dad: I started talking to her, and holding her and rocking her… I did find the pill bottles on the bathroom counter – some of Mike’s stuff, some of the more powerful narcotics.
* * *
Mom: I know I wrote a suicide note. I don’t remember writing it, but I wrote that I miss Michael. And I did, you know? There was such a hole in our family, and getting used to relationships and knowing that he’d never be a part of that, he’d never be in play again in the relationships in our family… It was really exhausting. You have to understand that Michael almost went back, for me, to being like a baby. We were feeding him, we were wiping his butt, he was giggling and laughing, we would cuddle…
How did you arrive at the decision that the Michael that we had… It was better that he’d die.
Mom: He was suffering. He was suffering. And I felt that allowing him to die was the last gift I would be able to give him.
Dad: We followed all of the necessary steps that you had to take in order to get medical and legal clearance that Michael’s situation was truly hopeless, that there was limited quality of life that was deteriorating, and that he was gonna die anyway. He was gonna die anyway… And we’d been through so much already, and Michael was really unhappy. We talked to him as best we could during this process, to figure out if, to the best of our ability, did he agree with what we were thinking about, and we did. I’m satisfied that we got his agreement for the course that we took.
Can you tell me about the night that he told you that he wanted to die?
James: He just told me that night. He just said he wanted to go. I actually was bugging him. I said, “Do you wanna watch TV?” “No.” “Do you wanna talk about something?” “Yeah.” I said, “What?” and I kept guessing. Then I just figured I’d say, “You’re tired as shit, ain’t ya?” He said, “Yeah.” I said, “Do you wanna get out?” He said, “No?” I said, “You wanna leave, you wanna go, you wanna die, right?” He said, “Yeah.”
Your mom could hear us upstairs. The next day when she came down she asked us what we were talking about I didn’t wanna say it first, because that’s something you don’t wanna be wrong at, you know what I mean? I had tears in my eyes, I think. I shouldn’t have said that on tape; I just wanna be a manly man. Anyway… It was Mike’s wish to go. How can I get mad? How can I be sad? I mean, I’m sad, but basically I’m glad because now he’s looking down and he’s happy. So we talked a lot about like giving Michael a death with dignity.
I was wondering what dignity means to you.
Mom: For me it meant that he was home and that he wasn’t hooked up to tubes, and he didn’t have needles stuck in his arms, and his family was with him, and his dogs were with him. That he was surrounded by love, and we were there to tell him we loved him.
Dad: Everything we did, for the whole four years that we went through this together, we did because we loved him. We made the decision to give him an opportunity to fight because we loved him. We brought him home to care for him at home because we loved him, and the decision we made at the end was because we loved him.
* * *
Brother: The only legal option was to cut out food and water. I wish there was a better option… There’s not.
Sister: It seemed like murder. I didn’t think this was legal, I didn’t think there was a safe way to do this that was pain-free for Michael. I didn’t understand that this is a thing that people do and there’s a way to do it properly.
Mom kind of explained it to me that we would just kind of wean him off of things. And she did this weird comparison to it when we raised our puppies and we had to like wean them off of milk and get them to do real food; she was like, “We’re kind of doing that. We’re weaning him off of everything, and adding more and more meds to kind of subdue it, because that way he doesn’t feel it.” At first I thought, “Why are you comparing death to puppies?”
Dad: Mechanically, what we did was we tapered down off the food. He had been on five cans of food, then he was on four, then three, then two and then one. So every few days they dropped another can from the cycle.
Mom: You know, I remember asking you a few times, “Are we making the right decision?” How can you ever make this decision to begin with, let alone know that it’s the right decision? It’s impossible. It’s a horrifying spot as a parent to be in. It goes against every instinct to not feed your child.
Dad: I was adamant that the only people who were going to make this decision were your mom and I, that we were gonna do this together and we would be in agreement, and we would make the choice. And while it was important to us to discuss it with you guys ahead of time, it was never gonna be up for a vote, because I didn’t want you to have to walk around for the rest of your life thinking that you were responsible for that decision.
Yeah, I know, but there’s something like implicit… Like, if I had objected strongly, I don’t think it would have been… Would you have gone through with it if I had said, “No, no, no!”
Mom: I think it was obvious that you wouldn’t have.
* * *
Dad: You spent the night with him, his last night, sleeping with him, and I came down that morning, I went in, and his color was completely different. He was ashen.
Mom: But I remember when I first walked in the room, and I think Suzie came out and then you came out and you said to me, “It’s not too bad, it’s okay.” Do you remember saying that?
Yeah. I was sort of removed…
Mom: Yeah, and he was gray…
Brother: His face was turned towards like you and mom. She was just telling him “It’s okay, it’s your time. You can go now, Mike” and I was just massaging his shoulders as he was dying.
Mom: I remember being told by one of the nurse practitioners that it will probably a more beautiful, peaceful experience than you’re imagining. I wouldn’t say it was that way, having your child gasp like that for breath, and then the pauses, and the just… You know, waiting for the next breath, or was that the last breath? He did a couple of those…
Dad: In the last few gasps, particularly at the end, he looked scared… And there wasn’t anything we could do other than just hold his hand.
Mom: And then he left us.
* * *
Dad: I sobbed, full, body-wrecking sobs and screamed. It was so real and so painful… I have no idea how long that lasted; it seemed like a long time. It might have been a minute or two, which is a really long time to scream that loud.
Yeah, I went outside and had a cigarette.
Mom: I thought it was interesting how when everyone was cleaning up all around us, the atmosphere changed a little bit to a little like light-heartedness. Because I remember Deb coming in, and after she initially cried – remember she kept shaving him? She kept shaving his face.
I remember she put coins on his eyes, which I thought was an interesting touch.
Mom: And then she shaved him again, and then she went to get some more spots, and we were like, “Deb, he’s good!” She just wanted him to look good.
One of the things I found amazing about his body was I really thought – or maybe hoped – that his body would finally relax.
And it didn’t.
Mom: It didn’t…
Do you still think about the fall?
Mom: The fall seems like a long time ago. I think more about his actual moments of dying than the fall.
Dad: We didn’t have anything to do with the fall. We still don’t know exactly what happened or why. We weren’t involved. We had a bigger role in deciding how Michael’s life ended, and this is what we had to choose, and this is what we have to live with.
What’s different now?
Sister: I don’t know… I feel more whole. I don’t feel his loss with me every second of the day.
We were ready to have a different chapter in our lives, because this had been so long and so hard for all of us. But again, we didn’t want that to mean having to lose him.
Do you feel guilty about the way we ended his life?
Sister: A small part, yeah. I feel guilty that it didn’t happen more naturally.
Yeah, I mean, I feel guilty…
Brother: Nobody should be kept alive like that.
But he was alive…
Brother: Yeah, but he wasn’t able to function at all.
I wish you’d spent more time with him.
Brother: You wish I had spent more time with him?
Brother: I spent more time with him than you did.
Yeah, I know, but… Are you mad?
Brother: Yeah, I’m mad. I’m done.
What?! Don’t be a dick. Hey, are you kidding me? I mean, I’m just trying to figure out what is it about this that you won’t accept.
Brother: What do you mean?
Do you feel like it was the right decision to end his life?
Brother: Yeah, of course.
You don’t think he wanted to live that way?
Did he ever tell you he wouldn’t have wanted to live that way?
Brother: No. I didn’t want him to keep living like that.
Didn’t the fact that we had to starve him — does that bother you?
Brother: Not really, because I know for people in that state it’s a lot less painful that you would think. Does it bother you that we starved him?
A little bit.
Brother: Would you have rather we kept him alive?
Brother: I think it was pretty clearly the right thing to do. I just wish we hadn’t waited four years to do it.
* * *
Deb: You know, there’s so much about your brother…
Well, let’s watch this video real quick. Remember this?
Deb: The shower… Oh, my god![shower video playing
Deb: Johnny’s taking you a picture, look! Smile for the camera]
Deb: He did not like that camera.[Deb: Are you calm now?
Alright… Can you see me? Blink once for yes.
Deb: You’re saying too much.
Deb: Just ask, “Blink if you can see me, Mike.”
Blink if you can see me, Mike.
Deb: Do you see your brother? Do you see your big brother?
Deb: Say, “Hey, big brotheeeeer!”
Deb: Say to your big brother hi!
Okay… Do you like living like this, Mike? Blink if you do. Do you want us to keep you alive like this, Mike?
Deb: Too long of a question.
Do you want us to keep you alive?
Alright, Mike. I just don’t want you to suffer.
Deb: He is, but he doesn’t wanna go.]
Yeah… He said yeah. Yeah, I think we did the wrong thing.
I don’t know…
Deb: I don’t know, I just…
It was easier for us.
It was easier for us if he died.
Deb: Yes. It gave everybody the power to go back on with their lives. You know, it’s been so long, I mean… You were living your life, but you weren’t here for the dailies. But I think it’s been so long since your mom and dad had a life… It had been so long, they didn’t even know what a life was like anymore.
Do you think that’s a justification for doing…?
Deb: No. No.
But do you think we, like, murdered him?
Deb: Oh, that’s too strong of a word, Johnny.
We killed him?
Deb: God, don’t say that, because I often think about that and I’d be like, “I played a part in it”, when I thought about it that like that.
What do you think, is that the way to…? Is that accurate?
Deb: No, don’t say that. I don’t think that he was murdered.
Do you think we killed him though, against his will?
Deb: I think, um, he was beginning to have pain and suffering and I think he was put out of his pain and suffering.
What bothers me the most is that there is like this ambiguity about what we did…
Deb: Was it right or was it wrong…?
Deb: You never wanna know.
Well, what do I do with that?
Deb: You gotta make it work inside your — you know what? I don’t know, when Mike died, it took a lot out of me. I had to go home, just go in my apartment and just be by myself, shut my doors and shut everybody out. I had to figure it out. I had to make something work for myself. You have to make something work for Johnny.
Well, what did you make work for you? Give me some tips.
Deb: [laughs] You know, I thought about it… Like I said, I spent a lot of time with your brother, okay? I studied your brother. Michael wanted to live, but I just think he didn’t have no more fight left. He went at a good time, you know, when your mom wasn’t crying over him all the time. She could be happy, she got happy thoughts; y’all got happy thoughts. The last thing y’all see is him not riddled with pain.
* * *
I’m lying here… In pretty much the same spot where my brother used to sleep, he used to lie every day… And I’m sorry, Mike. I’m sorry. We didn’t know what we were doing.
Mom: It’s been about 19 months since Michael died. I miss him a lot. I struggle with replaying our decision in my head, I struggle with life going on… My heart is broken.
How do you deal with it?
Mom: I keep getting up and getting out of bed. Every morning our older pug wakes me up about 3 AM. He has dementia, poor fella, and he’ll just start barking randomly at shapes and shadows in the house. So I end up leashing all the pugs up and taking them outside for a walk off the back deck.
If I’m quiet enough in my mind and less distracted and hung up about stuff that I wanna busy myself with, I feel closer to Michael; I can feel him. Being outside in the quiet, with the dogs, that and sometimes at night is the only chance I get to just totally have that quiet time.
You know, I just talk to him and tell him I love him, and I thank him for being my son.
* * *
This documentary is dedicated to my brother Mike. Steve and John were his friends…[Friend: Later in the night he started that same preaching…]
…Deb was one of the aids who took care of him.[Deb: You know, and he responded to us.]
So was James.[James: I had tears in my eyes, I think.]
My parents are John and Kate.[Mom: We carried him up the steps…
Dad: …in the chair.
Mom: Yes. It was very harrowing.]
My siblings are Andy…[Sister: We kind of like formed a little language…]
Emily…[Sister: And he couldn’t help but like smile, and we would go louder and longer each time, and he would like change it up…]
…and Patrick.[Brother: And I was just massaging his shoulders as he was dying.]
I’m John, I’m the oldest.