March 14th 2016 – Santa Fe NM
Bilateral pulmonary emphysema has taken a merciless toll on the battered man sitting slumped over in front of me. He’s my last patient of the day. The fingers of his left hand are stained a sticky brown while the rest of his skin is ash grey and spotted. The remaining shell of a wheelchair-bound body is no match for the triple-punch combo of emphysema, sixty years of alcoholism, and severe scoliosis.
I lean forward and try to light his cigarette for him. After it falls out of his mouth three times, I take a fresh one out of the pack, put it between my own lips, and light it myself making sure not to inhale any of the vile crap before sticking it in between his welcoming fingers. I utterly despise cigarettes.
This is a long way from reciting the “Oath of the Healer” at the conclusion of acupuncture school and vowing to dedicate the rest of my life to helping people get well. This is hospice. The rules are different.
This Is My Rock, There Are Many Like It, But This One Is Mine
I place my half-dollar sized, chestnut-swirled “Hospice Rock” on the center console of my truck prior to heading in to see my patients each visit. Adrienne, my septuagenarian volunteer coordinator/corner man told me to leave my ego with the rock when she gave it to me.
“Leave your fragile ego and desire to be right with the rock. Who gives a crap about right and wrong where you’re going? Leave your desire to be a hero, to save the world, to argue, or be anything but present. It’ll all be there waiting for you when you get back.” she said.
My roster is made up of three patients I see regularly. I refer to them as “Team Boehm.” Team Boehm had four patients yesterday, but I found out this morning we were down to three. “Get used to it,” I’ve been told.
I spent twenty minutes with the now forever-absent team member last Friday. When I asked him if he’d like a visit, he said he would and then turned his head away from me and closed his eyes. I left my hand on his shoulder for the remainder of our time together and neither of us uttered another word until I said I had to leave and he replied with a curt, “Thank you.” Little did I know I would be the last non-medical personnel to touch him in his life.
I’ll be honest, I don’t like the nursing home where most of these guys reside. It’s a tough place to walk into and I have to take a deep breath and have a mini pep talk before pushing the double doors of that world open. “Find the beauty. It’s in here if you look,” I tell myself.
I feel like a fraud in there, with my straight back, broad shoulders, and ability to ambulate with ease. I feel like a trust fund kid weekending in a refugee camp hoping to “find himself” by giving out dollar bills to the residents. There’s a guilt that hits me each time I sign out at the end of my visits. I’m a prison guard that gets to go home to his spouse and free choices at the end of each shift. I need to stop thinking so much.
Team Boehm – Jerry
Jerry is ninety-three years old. He did five tours in the European theater of World War II, landing in Normandy six days after the initial invasion and fighting all the way into Germany. Jerry was on a ship bound for Japan when we dropped the big one on Hiroshima. He came home to meet his two-year-old son and the woman he married before shipping off. My grandfather came home from the European theater to meet his two-year-old son too, the man I’m named after. Jerry has my heart already.
It’s easy to make Jerry laugh, he gets excited and starts winking at me whenever a female nurse comes into the room. He makes each one introduce themselves to me, and then winks at me again when they leave while pointing at the door as if I’m supposed to run after them. Although his wife passed away a few years ago, Jerry’s told me he’s officially “out of the hunt” due to having a catheter, prostate cancer, and a pacemaker. He told me this with a reassuring tone, as if now it’s safe to bring a female companion around. “It’s okay, dear. Sex with Jerry is not a foregone conclusion if you come to the nursing home with me today. He’s out of the hunt.”
I read a Lee Childs book to Jerry even though he told me he has a fifteen-page memory threshold. I could turn to anywhere in the book and read fifteen pages for all he cares. He won’t remember what was read ten minutes after I leave, but it makes him happy to hear the story. Makes it easy, I guess. He only needs the one book for the remainder of his stay.
When I ask him if he needs anything next time I come, he whispers that he really wants a beer. I ask if they’re allowed to have alcohol in the nursing home. He hems and haws until his roommate chimes in from across the curtain partitioned room, “We like to subscribe to the eleventh commandment around here.”
“What’s the eleventh commandment?” I ask.
“Thou shall not get caught!” they both answer in sync.
I tried living by the eleventh commandment for a long time myself, and I am not sure how sneaking beer into guys who are generally doped to the gills on morphine and a litany of other drugs would be viewed. “Be compassionate” is fairly broad in its scope, but I don’t think it includes “be a dumbass.”
“I’m ninety-three years old,” Jerry tells me with a mix of anguish and anger contorting his face. “I’ve been a good Christian my whole life. God took my Georgia years ago and has taken all of my brothers, sisters, and friends. I don’t know why he’s forgotten about me. I don’t know if he’s leaving me here to suffer as punishment for something I did in the war. When there were bombs and bullets flying around me I prayed every night that I’d see the light of the next day – and God listened. But now every morning when I wake up again and realize I’m still here, I curse him.”
I may not be cut out for this work. I don’t get the key into my ignition at the end of the visit before I have to cover my face with both hands and cry uncontrollably in the parking lot.
Maybe I will sneak him in a beer.
Team Boehm – Julio
Julio has lupus. He tells me this as he pulls a ‘57 Chevy Matchbox car out of the pocket of his leather motorcycle jacket. It’s his favorite car and “totally badass, huh, bro?” Six months ago he was walking normally and was employed as a caretaker for another man. Today at sixty years old, he’s paralyzed from the waist down and weighs in at one hundred and nine pounds. His frame won’t support muscle of any kind and he looks like a skeleton lying in the bed he’s bound to.
“I got a big sore on my ass,” he says. “So I don’t like sitting in my wheelchair.” He pronounces “wheel chair” with an overemphasis of the “h”. My mom speaks like that so it makes me smile.
“You want to buy any Matchbox cars?” he prods me. “I’ll give you a good deal on them.”
I politely decline, telling him I’m on a trip where space is a premium and every dollar has been accounted for, but thank him nonetheless. When I ask what I can do for him — read to him, get some cards to play poker, or bring him something from the kitchen — his answer is always simple.
“I’m just happy for your company, bro. I get pretty lonely in here. My daughter used to come, but then her boyfriend started beating her up so she had to leave town, I haven’t heard from her since. You know how kids are. They up and disappear on you all the time.”
I don’t know how kids are, but I smile and tell him I’m happy to visit him as often as I can. I also make the mental note that paralyzed or not, if I ever start a sentence with, “My daughter’s boyfriend started beating her up,” then it’s going to end with, “strangest thing, the poor guy fell down the same flight of stairs six times, with a thermos shoved up his ass.”
“You think you can get me some weed?” Julio asks with a longshot glimmer of hope in his eyes.
So far alcohol and marijuana are the only two things I’ve been asked to bring from the outside world. I make a five-dollar bet to myself that someone’s going to nonchalantly inquire as to the possibility of me smuggling in a hooker before my time here is up. Again, I politely decline.
Julio and I line up his collection of cars on the tray table of his bed. Chevelles, Mustangs, Camaros, and other hot rods make the spread. He tells me the history of each car including where he got it, how much he paid for it, what it’s worth now, and of course, the bargain I’d be getting if I was willing to buy it from him then and there.
“I have a beautiful silver lowrider bicycle back at home,” Juilio says. “It’s got a fat back tire, a polished chrome front wheel, and high rise chopper handle bars. She’s a beauty. When all of this lupus stuff clears up and I’m back on my feet again, I’m going to ride that bike all over town.”
Hospice gets called in when someone has less than six months to live, and when the diagnosis is terminal. My coordinator, Adrienne, warned me some patients will test us. They’ll ask if they’re going to die, to see if we’re honest or not. But my gut tells me Julio isn’t testing me.
“Fuck yea, you will,” I tell him.
Team Boehm – Emelio
I have to put my ear an inch away from Emelio’s mouth and repeat, “Say that again, please,” three or four times before I can make out his one-word whispers. Emphysema takes no prisoners. She’s as ruthless of a slayer of hopes and dreams as she is of breaths. Last week, Emelio wasn’t doing well when I saw him. He was nearly comatose. We had to revert to using a painfully slow thumbs-up for “yes” and thumbs-down for “no” system and stick to questions that could be answered in that format to communicate.
Today, he’s a bit spryer. His head is up as opposed to dropping down only inches above his legs as he sits in his futuristic mechanical wheelchair. Last week, he let me walk next to him and do the driving via the joystick-like control as we cruised the parking lot for chicks and fresh air. After we made a few laps of the lot, I told him I thought he had a sick ride and it took him close to ten seconds to respond with a shaky thumbs-up. His little black dog, Marty, followed along happy to be included in the epic outing.
Tonight Emelio’s daughter is coming by to take him out to dinner with the rest of the family. It’s his ex-wife’s birthday and I believe the anticipation is putting a bit more pep in his step. Or seat. Or whatever we want to call it.
“Say that again please,” I tell him.
“You…like…Santa Fe?” he gasps.
“I do,” I tell him. “But I miss the ocean. I’m a surfer and feel most at home when I’m in the water. I’m on the road for a year, though. I’m here to see you.” Then I felt like a dick for complaining to a man who is bound to a chair about how I miss something I’ve left by choice.
Marty saunters up and plops himself down at Emelio’s feet and I reach down to pet him. I miss my dog. When I look up, Emelio’s eyes are red and filling with tears. I put my ear to his mouth to see if he needs something.
“I’m sorry…sometimes…happens,” he says and starts to cry.
“Truthfully, Emelio,” I tell him and wrap my arm around his shoulder. “It happens to me from time to time, too, my friend. Feel free to cry all you want, man. Rumor has it every time we cry a feminist gets into heaven.”
A few minutes later I explain to him I have to leave but will return in two days to see him again. With a determination and clarity I have not previously seen from this man, he reaches out and wraps his hand around my wrist, so I lean in.
“No.” he says. “No leave…I can talk today…don’t leave…daughter gets here…please.”
I remember the rock sitting on my console. I remember it’s not about me. It’s not about the arbitrary plans I have at 5:30 that I will miss if I stay. If last Friday’s visit with my now missing team member taught me anything, it’s to not pass up any chance to be of service for these guys.
I agree to stay until his daughter arrives and Emelio lowers his head toward his lap and is still for a number of minutes before raising it again. He raises his hand, aims a finger at me in a Yoda-esque fashion, and points at me repeatedly. I bring my ear in close.
“You…why…why…really here?” he asks with a severity that’s indicative of a knowing that I’m not just on vacation or going for my next merit badge. There’s still intuition buried inside of this broken body. He looks into my eyes with an intensity that says, “If I have to be vulnerable enough to let you wipe the drool off my chin, feed me French fries by hand, and light my cigarettes, don’t you dare fucking lie to me or sugar coat your answer.”
Adrienne told me a lot of hospice patients will confide more in the volunteers than they will in their doctors or family members. They feel they can say to us what they can’t say to anyone else in the world. I get it. I feel the same about my dying patients.
I look back at Emelio and nod a few times as I feel my own eyes start to fill.
“If you want the truth, I think I’m running,” I tell him. “I lost my family, my life fell apart, I hated the man I had become, and I’m trying to outrun the pain of all of that.”
He takes a moment to contemplate what I’ve said while nodding in slow motion and then places his hand back on my arm beckoning me toward him. He then says something that steals the air right out of my own lungs.
Lessons given by a man who most likely had done the same thing I am doing, trying to hide from the pain of his life by drinking it away, smoking it away, and now living with what happens when it finally catches up to you and takes over your body.
Live Right Now – Unabashedly
I’ve got five weeks left with Team Boehm, if I can hack it. Five weeks left to hear what each of these men are screaming in their own silent way – LIVE RIGHT NOW. Breathe, while breathing’s still an option. Move, while moving is still possible. Run, surf, laugh, love, – LIVE – unabashedly.
Drop every ounce of guilt we may carry for the life we’ve been gifted and live each moment as if it were our last, because it’s not the last one that we’re going to dread if we end up in nursing homes and hospice centers. Quite the opposite, the last one is the one we won’t be able to make arrive soon enough.
I was warned that hospice would be different than I imagined. That it would be hard in ways I had never thought of and easy in the ways I thought it might be difficult. In five weeks I get to walk away from it and make any choice I want though. These guys don’t.
I do. So do you.
**Author’s note – patient’s names have been changed for privacy reasons.