God Is Where You Find Her
Did I feel relief? Shock? Fear? Actually, I don’t think I gave a thought to how I felt beyond “holy shit!” From the moment I learned they had a heart for me on Saturday afternoon, October 10, it was more than 24 hours before they finally wheeled me into the operating room at 4 p.m. on Sunday.
Those first few hours on Saturday were frenetic. For starters, I’d been living in the hospital for four months, so I had all sorts of stuff in my room: an electric kettle, coffee, a drawer full of snacks, books, magazines, my guitar, my clothes. All of it had to be packed up and moved out. I had things to finish up for work; things I had been putting off for weeks that were suddenly urgent. Laura needed to get her family leave paperwork done so she could care for me after the surgery. She had to draw up lesson plans for her classes. We had people to call, family and friends who had been so supportive through this ordeal.
My brother urged me to put the final touches on my latest installment of the blog. “You’ve got to do it, Andrew,” he said. “This is big news. People are waiting for it.” By the time we felt comfortable enough to relax and try to process what was about to happen, it was almost 10 p.m.
We were initially told they were going to operate late that Saturday night/Sunday morning. We crammed ourselves into the too small hospital bed and tried to get some sleep. Around 2 a.m., we got a call from the transplant coordinator, Mark. The doctors had additional antibody tests they needed to run and wouldn’t have the results until midday Sunday. My heart sank. Was this a false alarm? It happens a lot. It happened to my friend Joe a few weeks earlier. So, Laura went home to rest until Sunday, and I laid awake in my uncomfortable bed, going over the possibilities — (1) surgery happens and is successful, (2) surgery happens and is not successful, (3) surgery doesn’t happen and I go back to waiting — until the sun was coming up.
I finally fell asleep and was awakened by a phone call from the transplant coordinator at 9 a.m. Mark is an earnest type with an aura of honesty about him, and he’d been a great help to me as I navigated the transplant process, going all the way back to my evaluation in 2018. “Andrew, we got the results sooner than we thought we would. It looks like the heart is a great match and you should be headed to the operating room around 3:00.”
Laura came to the hospital around 1:00. By that time, they’d put in a Swan catheter and arterial line and given me a sedative. We were finally able to talk, but I was pretty doped up. I don’t remember much about this part of the day. Laura tells me I was not quite incoherent, but my speech was slurred and I was dozing off here and there. I remember we talked about my will, power of attorney, my health care proxy designation, and my advanced directive, in the event I didn’t survive the surgery (terminate treatment if desired, cremate me and scatter my ashes at Green Hill Beach, RI). It was all so sobering, even with the sedative.
We talked about how, over the previous three and half months, messages of support poured in from family, from friends and neighbors, and from strangers connected to me tenuously via my parents or siblings. Sometimes these messages were expressed as “healing thoughts,” or “positive energy,” or “wishes of strength.” Most often, though, the support came in the form of prayers. While I’m not a very religious person, I accepted all the good wishes, positive vibes, and prayers equally. Different people offer their support in different ways, so I took them all in, let them wash over me, and used them as motivation. My aunt Mary Anne Ford sent a message to one of her contacts, a sister of the Maryknoll Order in Ossining, NY, asking the Order to offer prayers of hope and support. This nun, whom I’d never met, sent the word out to the global network of Maryknoll sisters. Suddenly, I was getting prayers for my good health and safe passage from sisters of the Order all over the world.
Three o’clock came and went. We were told there would be a one hour delay before they were ready. Right at that moment, the chaplain on duty came into the room and offered to pray with us. I’ve never been a prayerful person, but I looked at Laura and we both shrugged our shoulders, as if to say “why not?” I told the priest, a Catholic, “sure,” expecting a quick Hail Mary.
Instead, we got something closer to what you get when your boozy, windbag of an uncle stands up to give the blessing at Thanksgiving. First, the chaplain offered an extemporaneous, meandering prayer that went on so long I could hardly believe it. Then, he launched into a recitation of a bible verse (I don’t recall which one) that was as directionless as the prayer. As the minutes ticked by, I finally I had to cut him off. “Thanks, Father, that was lovely. But, we only have a few minutes together before my surgery, so . . . um . . . yeah. Thank you.” He got the message, rushed out a quick Hail Mary (finally), and left. We cracked up. Our experience together in the church has almost always been like this. Every moment — from our Catholic marriage education, to the girls’ catechism, to most masses I’ve ever been to — has been an exercise in frustration.
The last thing I remember before the surgery was the ICU nurse coming into the room to wheel me down to the ER. She was a youngish black woman, all smiles. “It’s my birthday,” she told me, “and it’s sort of your birthday, too. I’m so happy for you. Don’t worry,” she said, “our doctors are great and you’ll do great. Just relax and get ready for your journey. Now, what do you want your walk up song to be?”
“Walk up song?” I asked, not understanding. She laughed, “yeah, like in baseball. It’s a tradition here. Every transplant patient gets to choose a walk up song for their surgery. What do you want yours to be?” Eddie Van Halen had just died, and I’m a huge fan. “Uh, how about some Van Halen?”
“OK. What song? Let me open my Spotify. The first one is ‘Running with the Devil.’” I laughed. “Maybe not that one. How about ‘Unchained?’” She played it loud on a Bluetooth speaker, that crunchy, mind-bending riff echoing through the ward as all of the nurses and doctors lined the hall, emerging from every corner to clap and cheer for me. Laura was beside my wheelchair holding my hand. We were so deeply moved we could barely speak through the tears. This moment did a lot more for my spirit than the words of the hospital chaplain.
I entered the freezing cold OR and they immediately gave me more fentanyl. I don’t remember anything after that.
I was born into a Catholic family. I married into a Catholic family. Catholicism was a central feature of my childhood, adolescence, and, in some ways, of my adulthood. Memories of my childhood are punctuated by the receipt of the sacraments of communion and confirmation; of itching to get out of church, of sitting on the aisle of the pew, looking at the shoes shuffling up to receive the host. As an altar boy, I would ride my bike through empty streets to serve at early Sunday mass. Sometimes, after the priest left, I’d take a few pulls off the bottle of wine kept in the sacristy before riding my bike home.
By the time I was in my early teens, preparing for confirmation, I was skeptical, not just of the institutional church, but of the very idea of God. Despite years of catechism, it all seemed like nonsense; the standing, sitting, kneeling, the droning prayers. So many meaningless homilies where you wonder, “what is this guy even saying?” I couldn’t — and I still can’t — understand the idea of the holy trinity. As for transubstantiation, my reaction was horror, not spiritual revelation. When Jesus says in John 6:54, “Whoever eats My flesh and drinks My blood has eternal life, and I will raise him up at the last day.” I didn’t think of the body of Christ becoming flesh and offering man eternal life, I thought of cannibal zombies.
My parents are deeply faithful people. They pray every day. They attend mass regularly and on all holy days. Wherever they are, they find a Catholic church so they won’t miss mass. I remember getting into a big fight with them about my confirmation. “I don’t want to get confirmed,” I told them, “because I don’t believe any of this stuff. I don’t believe that people who don’t believe will perish for eternity in a lake of fire. Do you really believe in Satan? How can I confirm my faith in a God I don’t believe in? Or renounce a Satan that doesn’t exist? None of it has any meaning to me.” I think my mother felt resigned to the fact that another one of her six children was having a “crisis of faith.” My dad just seemed angry about it, unable to accept that his second son, like his first, would reject something so essential to his being.
By the time I met my wife, who was also raised Catholic, I was cynical of any powerful institution, whether it be the Church, the government, the police, academia, all of it. But I was especially cynical of the institutional church. Just in my lifetime, we’ve had the sexual abuse scandal and coverup. We learned of the Magdalene laundries in Ireland. I often think of the insane hypocrisy of a faith that requires service to the poor and weak being professed by an institution so rich. I think of all the fat, red-faced cardinals in silk robes who hid their colleague’s sexual predation from the faithful of their dioceses. I think of the the rich and comfortable parishioners who will leave mass on Sunday and then on Monday lobby for payday lenders, or evict poor tenants, all the while believing that no matter what they do, their faith gives them a pass as long as they confess their sins before they die.
Despite my disdain for the institutional Church, I am not an athiest. I believe, as billions of people of all faiths do, that there is something larger and more powerful than we are. I don’t know what it is. I can’t explain how all the beauty and love coexists with humanity’s seemingly endless capacity for evil without there being a God of some kind. It doesn’t particularly matter to me if it is an Abrahamic God or the God of any other faith.
Primarily for the benefit of our devout parents, my wife and I were married by a Catholic priest, and our children were both baptized and confirmed. My mother joyfully assisted them both with their preparation for confirmation. She introduced them to her friend, Fr. Camilo, a decent and loving man who taught them Christ’s true message of achieving grace through service to the weakest among us. I thought of Fr. Camilo as the hospital chaplain droned on and on. Camilo, who often chafes against the dogma of the institutional church, is a perfect foil to the doctrinaire approach of the chaplain. As he prayed, I wished it was Fr. Camillo offering words of comfort. Instead, I found myself disengaged and thought, “once again, in my hour of need, the church offers empty words; no solace, no empathy, nothing.”
My first post-surgical memory is of the hospital’s music therapist, Erica, standing beside my bed asking me if she could play the harp. The memory is both vivid and hazy. I remember that the harp was a small, wooden instrument with an oval shape. I remember that the sound was so beautiful and soothing that I wept. But, I was still so loaded up on fentanyl from the surgery that I wasn’t even sure it actually happened. In my memory, it happened as I was being wheeled out of the OR, and I asked her if she was an angel and held her hand.
I started working with her after another horrible roommate saga. After a COVID-positive patient was placed in my room, I felt like I was going to lose my mind, and told the transplant team that I needed to talk to a therapist. I’d been in the hospital for at least two months at this point. This latest disaster was adding weight to my already strained psyche. I was getting worried about my ability to remain on an even keel.
The transplant psychiatrist appeared the next day. I’d met him a few times. He’s a nice enough fellow, with a dry wit and a kind smile. Ultimately, he’s not the therapist I needed. He is more of a Xanax prescriber. I asked him for a therapist referral, and he kind of shrugged and said “well, we have a music therapist.” I was amazed (and still am) that the hospital doesn’t offer psychological therapy services for their long-term patients. If they do, they failed to tell me about them. I agreed to try the music therapist, and am so happy that I did. Erica listened to my myriad complaints. She offered ways to deal with my mounting anxiety, When she was done listening, we would play guitar together. She is empathetic, kind, and a great listener; everything a therapist should be. She is one of the people from my transplant experience I will remember forever.
By mid-morning on the Monday after surgery, I was fully conscious and aware that I’d had a successful transplant. What I remember is that I felt incredible. I had so much energy. I was sending texts and calling people. I felt like I could have jumped out of bed and done jumping jacks. Twenty-four hours later, reality set in.
On Tuesday morning, everything hurt. My back was in knots from the six hours I spent on the operating table. I had a high flow nasal canula blowing oxygenated air up my nose. It dried out my sinuses, made my nose bleed constantly, and gave me unrelenting hiccups. I was coughing a lot. I don’t have the words to explain the pain you feel when you cough just a few days after you’ve had your sternum sawed in half and wrenched open. I spent hours alternating between coughs and hiccups. Every jarring breath made the 14 inch scar on my chest throb with pain. They were giving me a drug to increase the volume of blood my heart was expelling. It made my heart feel like it was going to beat out of my chest. Every beat seemed to echo throughout my entire body and caused a painful pulsing in my brain and my neck all the way down to my feet.
The ICU is the worst place to recuperate from a major surgery. It’s noisy with alarms beeping and staff rushing from one emergency to the next. They have to wake you every two hours to take vitals. For the first four nights, I did not sleep at all. I’d lay awake in my bed as the minutes and hours crept along. If I was lucky, I might catch a few minutes of light sleep before waking up and moving from the bed to the chair.
When Laura came to visit, the combination of lack of sleep and pain killers made me catatonic. I would doze off mid-sentence, then get angry at her. I’d fall asleep, she would look at her phone or try to do some work, only to have me wake up and ask, “why don’t you get off your phone and listen to me?” Once, I was sitting in the chair trying to butter a piece of bread. I kept falling asleep, then waking with a start before trying to finish the job. Laura offered to help, but I insisted I could do it myself. It probably took me ten minutes to butter that piece of bread, which seems hilarious in hindsight.
Across the hall from me was an older man who’d suffered some kind of major cardiac event that precipitated what the staff thought was a stroke. It seemed he’d lost movement on the right side of his body. He was deeply sedated, but they had to wake him up once every two hours to get him to wiggle his toes and squeeze their hand. “Bill! Bill!” they’d shout, “can you squeeze my hand? Bill! Squeeze my hand. OK. Good. Now wiggle your toes. Bill! Wiggle your toes.” It would go on like this for fifteen minutes. “At least I’m not that guy,” I thought, horrified at the idea of being that helpless on the edge of death.
By Wednesday morning, I had a fever. My calves, ankles, and feet were so swollen, they looked like ham hocks. I was having difficulty breathing, I had a urinary tract infection and was developing pneumonia. During the surgery, they gave me a massive dose of immunosuppressant drugs so my white blood cells would not attack the new heart and cause rejection. The problem with this is that it allows any old pathogen to waltz into the body and throw a party. Another day, another fresh hell.
By Wednesday evening, I couldn’t breathe. In the middle of the night my breathing became so shallow that they replaced the high flow canula with a face mask. It was strapped onto my face to breathe for me and caused unrelenting pressure on the bridge of my nose and the back of my head. I couldn’t speak, and I hadn’t slept at all since the surgery. I was terrified. As I lay there with the mask over my face, and a throbbing heart beat pulsing through my body, I began to think about mortality. I was felt totally alone. I started to think I might die.The shallow breathing is horrible for your mind. It takes one to the darkest places. The lack of sleep, the unrelenting anxiety, the sudden fear of death; it got to a point I could’nt think of anything else. I considered calling Laura, but decided against it. I didn’t want to upset her. With COVID restrictions, she couldn’t come in at that hour anyway.
The doctors did an excellent job explaining that setbacks like the one I was suffering through are to be expected. It can be difficult to remember that at three in the morning as you are struggling to draw a breath. They treated my infections with massive doses of antibiotics, which went quickly to work. By Friday morning I felt human again and by Sunday they moved to the step-down unit.
On my second or third day in step-down, I had a visit from Erica. I was thrilled to see her. She confirmed that she did appear at my bedside with a harp after the surgery. It wasn’t directly after the surgery, as I remembered, but twenty-four hours later. I asked, somewhat embarrassed, “did I … ask you if you were an angel? I have a very clear memory of asking you that question.” She laughed. “You didn’t ask me any questions. You couldn’t speak because you were still intubated. But you were very alert. You responded to all my questions with a nod of the head. Your eyes were wide open and you clearly understood me.”
We talked for another forty minutes. I told her my thoughts about all of the prayers of support I’d received, the chaplain’s asinine intrusion, the walk up song, and how a moment can somehow both exceed and fall short of expectations. She listened, as always, offering smart insights, and I was reminded of the value her of work. Most importantly, I told her that her harp playing was one of the most profoundly beautiful things I’d ever experienced. I started crying, just tears at first, until she also started to cry. Then I really got going; just full on weeping. I was a little embarrassed and apologized, “I don’t normally cry like this.” Then, for some reason I still don’t understand, I started laughing and soon we were both laughing while we cried. It was a beautiful moment.
Toward the end of our conversation, she asked, “can I tell you something, Andrew?” I told her, “of course! Please, you can tell me anything.” She smiled and said “well, I have my own transplant story. I had a liver transplant and was, at the time of my surgery, the youngest ever liver transplant recipient in history. I was kind of famous. I was on the cover of Life magazine. I was the Red Cross Child of the Year. For a long time, I was the subject of conferences and spoke at all kinds of organ donation events. I still have a close relationship with my surgeon.” She showed me pictures of the magazine cover and newspaper clippings about her surgery. It is an amazing story , something more than a coincidence. Was this why I felt so connected to her? Later, as I thought about the surgery and about how in the moment I most needed to hear from God, it wasn’t the Catholic chaplain praying to the God of my youth that helped me. It was a 35 year old Jewish music therapist playing a harp who delivered the comfort I needed.
I left the hospital on October 28th, just over four months after I was admitted. I’ve been home for just over a month and fluctuate between shock at the amount of progress I’ve made and frustration at how long it’s taking me to reach a pre-surgical baseline. When I got home, it was difficult to walk up the stairs. Now, I can walk a mile and a half pretty comfortably. But I still struggle with pain. I can’t sleep at night. Recently, I was out for a walk with my mother and tripped on the sidewalk. Before the transplant, I would have just caught myself and been fine. Instead, I stumbled, couldn’t find my balance, and slammed onto the pavement, smashing my ribs on the ground. They still hurt.
One of the most notable things about being back home after all that time in the hospital is that things seem equal parts unchanged and completely new. The night I got home, I slept in my own bed for the first time in over four months. It was sublime. Just getting myself a seltzer and pouring it over a glass of ice with a slice of lime feels special. Sometimes the simplest thing fills me with joy. The other day, I made myself a grilled cheese sandwich and I swear it felt like I’d never eaten something so delicious. I experience these simple pleasures as if I’m doing them for the first time. Things that used to annoy me, the type of things that would lead to bickering with Laura, for example, don’t annoy me the way they used to. Laura and I are getting along better than we have for years. I’m looking forward with anticipation, not fear.
On the one hand, especially with respect to the world around me, nothing has changed. When I entered the hospital, COVID cases were somewhat under control, but things were still locked down. All the nurses were worried about what was to come after summer. They all thought cold weather would bring a massive increase in cases and deaths. They were right. It’s December and it is as if the country has learned nothing. People are flouting mask mandates as “oppressive,” and dying in numbers impossible to grasp. Most people I know breathed a sigh of relief at the election outcome, but it’s hard to feel hopeful. Trump may have lost, but he’s spending the final months of his presidency setting fire to democracy. And with the incoming adminstration appointing all the old names and faces that brought us Trump, meaningful change seems impossible. The war on truth is over and truth lost. There are no agreed upon facts. Whatever people believe — whether it be about COVID, the election, or anything else — is their personal truth. What a bizarre time we’re living through.
On the other hand, everything has changed. I feel different. Mentally, I feel much less cynical, despite my aforementioned concerns about the state of the world. A sense of deep gratitude surrounds me. I feel more loved than ever. My love for my family feels stronger than ever. There is a new sense of purpose in my life; a desire to soak up every experience, good or bad, and learn from it so that I can live a life full of joy.
In a physical sense, my medicines (I take 18 pills every morning and bedtime, and another four at lunchtime and late afternoon) have caused a number of unpleasant side effects, from chronic constipation to uncontrollable tremors in my hands. Some will eventually disappear, but others, like the tremors, come from meds I will have to take every day for the rest of my life. They might diminish as my dose is reduced, but the transplant team is unable to say if they will fully disappear. I still feel weak, but I’m making progress. I’m walking every day, sometimes more than a mile. There have been peaks and valleys. I’m gaining strength and my trajectory is climbing steadily upward. It might take six months or a year, but I know the day will come when I feel better than I have since I was a teenager. I can’t wait.
I was given a new heart and with it, a new life. I often think of what the nurse who took me to the operating room said: “today is my birthday and it’s sort of your birthday, too.” She was so right. What better way to describe what happened? Without the transplant, I would have died. When I got it, I was reborn.
