Stories

How This Feels

I wanted her to know that I heard her story and I understood her...

In the beginning of my career at the Access Center I had a lot to get adjusted to. Having years of experience working face to face with patients, I had to learn how to show our callers that I could connect with them and really hear them. Working at what we call, the virtual front desk, we have days when we just want to show the patient and the callers that we are trying our best to connect them to their care team and set them up in the best way possible. And some days that can get more challenging than others.

I can remember one moment, one call, where I spoke with a patient’s daughter whose mother had just been diagnosed with cancer. And she was very upset and nervous about how this treatment would go. She explained to me that this could potentially be fatal and that she was scared that this was affecting her and that she was too young to lose her mother. And when I proceeded to try to get her set up the best way I could she wasn’t very pleased with having to wait and she mentioned to me that there isn’t much time. At one point she said to me, “You have no idea how this feels.”

And in that moment, I had to struggle through my own emotions because just a few years prior I actually lost my father to the same diagnosis. And I too felt that I was too young and that it was difficult to schedule his appointments, and share the news with everyone, and I knew it wasn’t easy. But I also knew I couldn’t tell her those things that it wasn’t about me and I wanted her to know that I heard her story and I understood her.

So, what I actually said to her was, “I do understand, and I hear you.” And I think she heard me too, we paused for a moment and I think she felt more calm. She allowed me to recap the next steps and talk through what we could do for her. And we eventually ended the call with her thanking me for being patient and working with her. And I feel like, right now in our world we so used to getting that instant answer and having everything work so quickly but sometimes we can’t get that. And that’s you know one of the challenges I had in that moment, but I think that being able to speak to her and listen to her and relate to her, I think that’s what really connects us.

Don't Fear the Reaper

Do you know that feeling, when you know every conversation might be your last?

I knew my grandma Eleanor couldn’t have many years left. She was 96, and though her mind was unrelenting, she was increasingly physically frail. The last several years, I tried hard to savor every moment I had with her, every time I spoke with her on the phone. Do you know that feeling, when you know every conversation might be your last? Do you hold on to voicemails, just so you have a recording in case they die?

Eleanor was a force of nature and endlessly opinionated. A former biology teacher and principal in New York City schools, she was on the committee to write the sex education curriculum for the school system in the 60s. Later, she taught an adult education class at the 92nd Street Y in New York, entitled “Controversial Conversations,” on topics ranging from abortion to transgender issues. Had you knocked on her door, she would answer, “Friend or foe?” Yet she would open no matter what your answer, because, she explained, a foe might make for interesting conversation. She spoke frankly about the world and had no illusions—about justice and fairness, about sex, about religion, about life and death. She told me that it was ridiculous to say the elderly were living their “golden years.” “In what way exactly is life great,” she would ask, “when your body falls apart piece-by-piece, and one by one all your friends die?”

Starting medical school, I was startled when she first bluntly shared her end-of-life plans. “Jules, I don’t want any life support. I’ve lived a good life. When it’s my time, let me go.” As a young doctor, no matter how hard you try, how can you really understand a person being so comfortable with her life ending? Furthermore, Grandma’s forthright wishes made me realize how some patients might worry less about death itself and more about their death’s impact on others.

Years ago, when my wife and I traveled out of the country, Grandma gave instructions that, I was not to be told until after the trip in case she died, because she didn’t want her death to ruin any vacation.

I see many older patients with cancers and premalignant lesions. Grandma taught me the importance of not thinking about diseases in terms of cured vs not cured but rather to individualize and ask, does a treatment really adds value to a patient’s life. If a lesion has a tiny chance of turning into a cancer or even if it’s a cancer, unlikely to be life-threatening, opting out of treatment is more than a rational choice.

You might forgive me for thinking that I was prepared for her death, given how much we had talked about it. We had done all the right things, signed the DNR form, and knew that she didn’t want interventions. After we initiated hospice care, it was very difficult, she had a rapid decline. Despite all my medical knowledge, all that my grandma taught me, and all that I’ve seen through medical school and all of my training, I’m still learning to accept the inevitability of death. Eleanor hadn’t seen death as a foe.

As physicians, we like to think we understand everything, but the truth is we have more questions than answers. Still, I think my practice is stronger, the greater my humility and acknowledgment of my limitations. I hope my patients trust and me when I tell them, “I don’t know.” I think I was afraid I would forget my grandma Eleanor, but through her example and many lessons, I know she remains with me.

Will You Pray for Me

She was the first person I checked on every morning and the last person I said bye to every night...

As a second year resident in the ICU I came to encounter and care for one of the most memorable patients in my residency. She was an elderly woman her terrible kidney disease and need for dialysis had irreparably laid waste to her coronary arteries. She was in shock and she was just tenuously surviving on a device called an intra-aortic balloon pump. It was placed inside through an artery in her leg and working in synchrony with her heartbeat to reduce the strain on her heart. She was a genuine woman who laughed loudly and often, we developed a rapport quickly. She was the first person I checked on every morning and the last person I said bye to every night. She was always surrounded by her loving family, telling jokes and recalling life stories late into the night. If you met her you would never had guessed she was one of the sickest patients in the entire unit.

Days dragged by before anyone discussed her prognosis, it was apparent to all of us that she was rapidly approaching the end of her life. We asked her how did she envision this chapter? She confided that being on this device was not the way that she wanted to spend her final days. Her room was never silent, the pump was audibly laboring day and night. Because it was placed in her leg, it prevented her from sitting up, eating her favorite foods, and holding her loved ones. She wanted it out. The team acknowledged her wishes but said to her solemnly, we want you to understand if the pump comes out, there is a not so small chance that your heart could arrest. She remained silent for a moment, then nodded. She was willing to take her chances.

After avoiding her room for hours I final mustered enough resolve to walk into her room. She greeted me with her usual smile, as I laid out the supplies I explained to her exactly what I would do. It helped calm my nerves, as much as it did hers. And finally when I told her I was ready, she remained silent. I looked up to find her in tears. So I held her hand and with the other I grabbed her hand as she reached up and gently placed it on my face. She said to me in that moment “I’m so scared, Jason I’m so scared." I told her it was okay to be scared. She nodded and closed her eyes.

For the first time in days there was silence in the room. The drumming sound of the balloon pump had stopped. I held firm pressure where it had exited to stop the bleeding. I told her I would need to do so for an hour.

The initial moments were filled with a palpable apprehension of what I feared would be imminent death. I was terrified she would pass away right before my eyes, from the very action I had just performed. Her heart would now have to pick up the extra work. We remained motionless for the first ten minutes.

Then suddenly the heavy air was pierced by a beautiful, transcendent melody. Her two sisters had begun to play gospel songs from their phones, the ones they had grown up listening to and singing. Immediately, the tense lines began to fade away from her face, and her entire body relaxed. She began to sing, at first quietly, but more passionately with each passing minute. Her two sisters joined in, surrounding us in their warm voices. They looked at each other and laughed. We listened to more than ten songs together that afternoon. She sang as many words as she could remember in joy, without chest pain, shortness of breath, arrythmia or death.

As we neared the end of the hour, they stopped singing and began to pray out loud. They prayed for her heart. They prayed for her soul. They prayed for those whom she had touched with her presence during her life, and those who had touched her. They prayed for her doctors and nurses. They prayed for my hands that were controlling her bleeding.

In more ways than physically I felt connected to her that spiritual afternoon. For the first time in my life, I, too, closed my eyes and prayed for her to thrive and to be at peace for the remainder of her life. Then I gently lifted my hands from her leg which was now dry and placed a clean dressing, signifying a closure to what had been a heavy, yet heartfelt hour. She left the ICU a few days later. And the following day she passed away.

The Envelope

He was looking for a chance to tell his son’s story before he told his own...

When I met my patient Jack a number of months ago, it was the end of the day, the end of the afternoon. He was the last patient in my schedule. And as I reached in to introduce myself and shake hands with him I noticed he was clinging fairly tightly to an envelope, a large manila envelope. And I think there was something about the way he gripping the envelope or his tight possession of it there was something special about it to him. That I think prompted me to break with tradition a little bit, pull away from the computer and ask him Jack is that something you’d like me to look at?” and he handed me the envelope and he looked relieved. I think he was surprised that I asked to see the envelope.

I opened it and inside were a stack of papers memorializing his son’s death. His son had died at around the age of thirty or thirty-two after a long battle with cancer. And I felt very sad and expressed that to Jack and told him I was so sorry for his loss. And it made me think of my own son and wife and how awful it must be to lose a son in the prime of his life.

And what I learned from talking with Jack afterward was that he had really ignored his own health for many years. This was the first time he had been to see a doctor in probably ten years or more. And he had made some attempts to see a physician in the past but had never really gotten very far because he was waiting for someone to allow him to tell his son’s story. And more than that, he was looking for a chance to tell his son’s story before he told his own.

So I felt very fortunate that somehow I had this instinct to ask about this envelope before delving into my usual history and physical. Because had I not done it that way, I think I would’ve missed an opportunity to connect with him. And I would’ve lost an opportunity to hear his story and be a part of his story going forward.

And I reflected on this for a number of days afterward. And I was thinking about how I really in some ways did something very similar to what Jack did, in the sense that he needed to break with tradition in terms of how he was seeking care. He needed to tell his son’s story in order to have at least a modicum of closure enough to be able to talk about his own health. And similarly, I forced myself to break with my usual tradition of extracting the history from someone by asking a series of questions and proceeding through the usual sequence of examination, and assessment, and plan to just hear his story the way he wanted to tell it.

If you listen to the patient, as the saying goes, he or she will tell you what is wrong with them. And I realized after talking to Jack that there’s something that’s missing from that statement which is that in order for a patient to tell you their story so that you can help understand their diagnosis, they have to trust you and you have to establish some sort of a connection. You have to listen to the patient, show curiosity, and offer presence and interest in their life and then they will tell you their diagnosis. And I’ve tried to live by that ever since then.

The Gift

I’m guessing they would never remember me but if we could thank them, we would...

When you’re dealing with a loved one who is really very sick and you’re going to be in the hospital for a long time and you really just don’t have a lot of answers, the weeks start to pass by and the time becomes a bit of a blur and a fog. And you fall into a new routine as if you’re going to work and you get your cup of coffee and you go to your loved one’s room, and you sit and you wait, and you hope and you pray, and you do all these things that have now become your new norm. And you look for the opportunities to have hope.

My story begins with my daughter being a student in a local college. And she’s not feeling that great, so she goes to the nurse and the nurse decides that she’s probably dealing with pneumonia and calls me and says please meet your daughter at the emergency room. It was near the holidays and we went to the emergency room and indeed they did feel she had pneumonia and that a few days of antibiotics would be the ticket and she’d be home by Thanksgiving to have turkey with us. What we didn’t realize was is that she was in a diseased process that was not at all like standard pneumonia and that she was getting progressively worse. To the point that she was moved from Med Surg to a critical care bed and intubated on Friday, the day after Thanksgiving.

From there we kind of began a rollercoaster ride. Sometimes the hope comes in very small little packages. A nice little lady would come to wash Amanda’s hair every couple of days, make sure that her hair was clean and blown dry. And she would make sure that Amanda’s hair was done exactly the way she wanted it, even though for the most part most days Amanda was sedated. We think unconscious but we do believe she heard and understood what was going on.

And so those little moments mattered. Whether somebody brought you a coffee, or made sure that you had lunch, or made sure that you were taking care of yourself. Knowing that they were caring for me, making sure that I was well, those are the things that matter.

I have a lot of gratitude to those folks, who I don’t know. I don’t know their names and I don’t know who they are. And I’m guessing they would never remember me but if we could thank them, we would for the work they did for us and our child.

After she passed away, we knew immediately she had to become an organ donor because she wanted to be one. And we know for a fact that she impacted five lives, two kidneys and two eyes and a heart were donated. And somebody got an awesome call that day. I can’t say enough about what that means to us as a family to know that that happened. When we were at our worst, somebody else was able to move on. And it’s really important to me to know that the worst possible day of my life became somebody else’s gift.

Small Changes

It gave me a lot of hope about the possibility that somebody may change...

My story is really one about giving feedback.

So I’ve had to have many endoscopic procedures and always the nurse waits until there’s no one else in the room and then asks the question -- two questions, about whether you’ve ever been abused and whether you’re depressed.

And I had a terrible experience with one nurse who was sitting with her back to me, facing the computer and she said to me “Any abuse?” and I said “No.” and she said “Are you depressed?” And I could feel my stomach just curdling, and I said “No, but I just want to say to you if I was, I wouldn’t tell you, because I don’t feel like you care. You have your back to me and you’re just abruptly asking these questions.” And she said “Well I just want to tell you that people do respond.” And I said “Well that’s great, but I wouldn’t be one of them.” And I left there feeling really terrible, thinking is this really how we ask vulnerable people traumatic questions about their lives?

Many endoscopic procedures later I was back in the suite and nobody asked me the question, but the nurse started to drive me to the room where I was going to have the procedure and as we were in the hallway, she leaned gently over me and kind of whispered into my ear “I just have to ask, do you have any abuse in your family? And are you depressed?” And I was so overwhelmed with how beautifully she did it.

I said “Oh my god, nobody has ever done it like that. That is just so beautiful, thank you.” And as we were talking I said “I just want you to know I had this horrible experience once with this nurse, and I reiterated what had happened, and she got this strange look on her face.” And she said “That nurse was me.”

And I couldn’t believe it, I just looked at her I said “No.” I didn’t recognize her at all. I said “No, you couldn’t be the one who went from being the worst to being the best.” And she said “No it was me. I was multitasking and you called me on it, and you were right.” And I just kept thanking her and thanking her and just saying how amazing it was that she made these changes.

And it gave me a lot of hope about the possibility that even just giving feedback once, somebody may change.

In the Silence of Compassion

I don’t see people the way I used to or take their lives for granted...

As my journey continues together with the lives that I touch, I don’t see people the way I used to or take their lives for granted. When you have a mother who just falls into your arms and all you can do is hold her and pray. And then I ask God, give me what to say or say nothing at all, just hold them. Will you one day think that you may never see them again? Or will you remember, there go I before the grace of God.

In the silence of our listening we hear the heartbeat of another. And with compassion we value the persons voice. If we listen closely a hush surrounds their countenance but the expression on the face can say “Help me. Is there anyone listening?” The presence of listening allows us to feel joy, pain, and the sorrow of the heart. Can you hear them in the silence when the tears run down the faces of friends and parents and siblings? When their loved one is gone, will your arms reach out to hold them in the silence of compassion? I think of the Scripture 4:23. “Keep thy heart with all diligence; for out of it are the issues of life.”

I’d like to leave you with a few inspiring words from Henri J. M. Nouwen:

“Compassion asks us to go where it hurts, to enter into the places of pain, to share in the brokenness, the fear, confusion, and anguish. Compassion challenges us to cry out with those in misery, to mourn with those who are lonely, to weep with those in tears. Compassion requires us to be weak with the weak, vulnerable with the vulnerable, and powerless with the powerless. Compassion means full immersion in the condition of being human.”

Caregiving as a Form of Love

I was caring for the person who was supposed to be caring for me...

I first became caregiver for my mother when I was fourteen… That was about the time I entered high school, and it meant that I wasn’t able to do a lot of the things that other kids my age were able to do. As I was trying to become involved in classes and sports and make friends it was always on the back of my mind if I could do those things and still be able to take care of her. I had to make sure that I was able to organize all of the different medications she had to take, feed her, and help her with her physical therapy. I was worried that if she was alone all day that something may happen to her, and she had liver cirrhosis from her alcoholism so there was a risk of her developing internal bleeding. My mother, who was supposed to be my caregiver, became the person I cared for more and more each year as she became less able to take care of herself. I was caring for the person who was supposed to be caring for me… and it made me so angry.

This continued throughout high school and college until I arrived home for winter break my freshman year when my father called me when I arrived at the airport saying “You need come straight to the hospital. Your mother might not make it through the night.” I showed up at the hospital; and, due to her condition she wasn’t able to make decisions for herself anymore. Since her liver had shut down, it wasn’t able to filter out toxins produced by her body. The result was hepatic encephalopathy and she had lost much of her memory and her ability to process what was going on around her. The question was not one of whether or not she would get better, but one of how long she had— and the doctor wanted to know what I wanted to do. Since, I was the informal medical proxy, I was supposed to decide if she was to be treated aggressively to prolong her time here, or if we were to provide her palliative care, comfort care, in her final days. I went to my mother and to tell her the news. I sat down to tell her that the medications weren’t going to work anymore… that there was no more getting better. I was going to do my best to make sure she wouldn’t feel any pain any more. I don’t think she understood that. But, I think in that moment all anger I had from all those years melted away. Those are the last words I remember having with her.

She passed away the next day and it was December 23rd, 2017. And we were planning her funeral the next day, Christmas Eve. In the weeks that followed I was going through her things and cleaning the house before I went back for another semester of school. That’s one example of how caregiving goes beyond medical care and decision-making; it often means you have to assume the role that they have in the family and the responsibilities that they would normally have. This process of filling in my mother’s absence has continued long after she passed away; in many ways, I have continued to be a caregiver for all of those around me liked an ingrained behavior. The ability to intimately be a part of her story and her struggle as her caregiver brought me to mature much sooner than my peers, but it also endowed me with an ineffable feeling of compassion for those who are suffering. Through caregiving, I was able to recognize compassion as a form of love, and I will carry this with me for the rest of my life.

Everybody is Going Through Something

I could tell he was emotionally struggling...

My name is Louis and I work as a Red Coat Ambassador at the Hospital of University of Pennsylvania. So, when people come in, we are the first faces that they see. We try to be as helpful as possible and sometimes, you know, it’s easy to help someone. Sometimes not so much.

I remember a story from a little over a year ago, where I had helped an elder couple. They had a long day and they were at their last appointment in radiology and they were upset because they had misplaced their car keys. And I could tell that the wife was really upset with her husband and I had asked them if they retraced their steps. I ask them what their car looked like. I went over to the parking garage by way of shuttle bus and was able to find their make and model. Their keys were in the ignition and luckily the doors [were] unlocked so I was able to get the keys very easily. I brought them back to them, and it was a great ending to the day. They were very thankful.

But sometimes it’s not always a pleasant experience. Everybody is going through something. About two or three years ago, I encountered a tall gentleman coming over the connecter bridge and he was carrying a lot of bags. I could tell he was emotionally struggling, and I said, “Sir is there anything I can do to help you? Are you going to be okay carrying those bags down to the parking garage?” And he looked at me and said, “You’re always very chipper and happy but I don’t want your help. It’s not always a fun place to be.” And I found out that he had lost a family member, so he was grieving. I knew it was nothing personal, but because I was talking to him, I enabled him to grieve and I learned sometimes the most helpful thing you can do is just listen.

Hand Holding

His arm seemed to beckon, and I stepped forward slowly...

In the pre-dawn darkness of an August morning I prepared to start my Surgery rotation. It was the first day of my third year of medical school, the first day I would actually be in the hospital instead of sitting in a classroom. My stomach churned as I double- and triple-checked the location where my “team” was meeting for daily rounds. Once located, I stood at the periphery of the messy circle of surgical interns and residents.

Surgery quickly showed me that I knew nothing, not even how to wash my hands. A quick-talking scrub nurse briskly showed me how to do so correctly, using the betadine-soaked scrub brush and moving slowly from nails to fingers to hands to wrists to elbows. When an area was clean you continued upwards; repeating territory meant contaminating yourself and starting over. Once I was “scrubbed in” I had to remember not to touch my face, glasses, clothing, or other “dirty” surfaces in order to avoid contaminating anything in the sterile surgical field. Needless to say, I didn’t get the hang of this right away.

Everyone had a purpose and knew their role. The energy in the O.R. was palpable, intense yet controlled. It didn’t seem possible that I would ever find a place in this intricately choreographed dance. Then the patient was wheeled into the operating room. An older man with graying hair under his surgical cap, he lay on his back on the gurney in the center of the room staring up at the ceiling. We were both out of place, islands of silent contemplation amidst a sea of activity. His left arm was extended outward in my direction, strapped to an extension of the bed, his IV already in place waiting to receive the anesthesia. His arm seemed to beckon, and I stepped forward slowly, unsure if I was breaking a rule of some kind, though shalt not speak to a patient before surgery. I introduced myself and then, as we made small talk, I put my hand on top of his. The anesthesiologist who came over to confirm the patient’s name and date of birth gave me a slightly questioning look, but only to confirm that I wasn’t actually doing anything of importance.

My instinct to reach out to the patient came from my own experience as one. At age fourteen I was the one on the gurney, shivering by myself in a pre-op area. Wearing only a thin cotton gown, I felt very small and vulnerable waiting to be wheeled into the OR. A nurse came to my bedside. I have no memory of what she looked like, or what words were exchanged. All I remember is her taking my hand in hers; the sensation of heat from her palm was immediately comforting. Her touch alone somehow conveyed the caring and support I needed in the moments before my operation.
As a medical student just starting a clinical rotation, I probably needed some of that same caring and support.

I held the patient’s hand until his eyes closed and he was fully “under” from anesthesia. I worried that the attending would see those moments as a distraction from the “real” work of doctoring. Leave the hand holding to the nurses, they were the ones supposed to spend time with patients. We were there to do surgery; the “real” work of medicine was the curing of disease after all, not comforting patients.

Now almost twenty years later as a practicing physician, I think of the concept of “therapeutic touch” somewhat loosely. A hand on the back while guiding a patient to or from my office. Holding my palm against their shoulder as they take deep breaths during the lung exam. When it’s feasible without being awkward, I try to be mindful of the power of actually reaching out and touching my patient, letting them feel the warmth and pressure of my hand, reminding them that I am right there next to them, and will remain so.

My First Patient

I learned what it was like living with a chronic illness...

Starting medical school, I was feeling rather lonely after having moved far away from my family in Alaska to Philadelphia. I had made the drive myself, and through the mountains of Montana and the long plains in South Dakota I had had a lot of time to reflect on my excitement in starting a career where I was going to be able to help so many people! I hadn’t really anticipated that the first year would be full of books, followed by books, followed by more books.

We did have some time with patients. On my first day of medical school we had a panel of patients and in the front of the auditorium, was a patient in a wheelchair with an oxygen tank, telling my class the story of how a doctor had hurt her feelings. She brought herself to tears along with a lot of my class, including me.

I had the fortune to be paired with this patient for a class assignment. In which, I was instructed to attend all of her doctor’s appointments in order to better learn what it was like to live with a chronic illness and spend a lot of time waiting in waiting rooms. I was also assigned to go to her home and cook meals at her house once a month. Of course, we got to know each other better as people—she always asked after my boyfriend and my parents, and I would always ask after her family. Soon I got to know both the intricacies of her family dramas—who was coming to Thanksgiving this year, who was backing out; as well as the more intimate details of her life story—which included being orphaned at a young age, raising her younger siblings, then raising her son, then raising her grandchildren. Not to mention along the way she helped raise many a child that she babysat in the suburbs. Her only regret was that she never went on vacation.

My patient also had some health problems that I got to know about. She had high blood pressure, high blood sugar, bad lungs… at most doctor appointments the doctors would encourage exercise, eating healthier, but these were hard habits to change. Even with me spending multiple hours a month showing off the most organic fruits and vegetables, that didn’t mean that when I arrived in her kitchen there weren’t usually a few cakes lying about.

At times, I felt a little frustrated with myself. Wasn’t I in school to learn how to help people lose weight, to keep their blood sugars down? But then, I would receive a text from her saying “Sarah, thank you so much for listening to me today. I appreciate you so much.” And I realized that maybe being a doctor it’s about more than just the numbers on the lab slip and pounds on the scale, but it’s also about the ability to simply listen to our patients.

A Thank You Card

The grief, fear, physical pain, and emotional suffering was coming to a frenzied peak...

What follows is in lieu of a thank you card, something I should’ve sent to this doctor a long time ago. I often think of our encounter when taking care of my own patients in the operating room.

As an anesthesiologist, I am the last person my patients see before they drift into unconsciousness for their surgery and the first person they wake up to when it’s over. In such moments, people expose their vulnerability, their humanity, and what truly matters to them. As they fall asleep, I try to allay their grief and anxiety about whatever is happening to their bodies that brought them under my care with quiet words and a comforting touch. I know I can’t eradicate their problem, but I can show them they are not alone and their suffering is acknowledged and real.

A few years ago, that patient was me. At the onset of my anesthesia residency training, I was diagnosed with an extremely rare, progressive lung disease called lymphangioleiomyomatosis and have been navigating the murky waters ever since. LAM afflicts only a few thousand patients, and primarily targets young women in the prime of their lives. The end game for LAM is ultimately, a lung transplant.

Due to the risk for pregnancy-induced LAM progression, my husband and I decided to pursue IVF treatment for potential surrogacy. After eight labor-intensive weeks of constant bloodwork, ultrasounds, painful injections, and a weekend from hell in Canada for a family wedding whereupon I forgot my medications, prompting a frantic trip to a suburban fertility clinic an hour before the ceremony, it was time to harvest my eggs. I told myself it was just like any of the other numerous procedures I’d already undergone for my lungs, but my heart knew it was much more. With some luck – something I hadn’t had much of, lately – those eggs would turn into embryos, and those embryos represented a future. A modicum of hope.

As the intravenous sedation was administered, I remember hearing the distant beep of the pulse oximetry in the quiet procedure room and feeling a rising sensation in my chest. A culmination of that horrible year - the grief, fear, physical pain, and emotional suffering – was coming to a frenzied peak. And then I was crying. Not just a few quiet tears, but gulping, gasping sobs. The infertility specialist performing my procedure, whom I had just met moments earlier, had her back turned and was organizing her surgical instruments. She stopped what she was doing, turned around, pulled up a stool next to me and sat down. She took my hand in hers and said, “I know what a hard year this has been for you. You’re so brave and you’re doing the best you can.” I fell asleep.

We successfully froze a few embryos. Grandchildren in a petri dish, my father jokingly says.

Every time I think of this physician’s kindness in my moment of despair, I am moved to tears and so grateful for her compassion. If she is listening, thank you.

The Sign

No one knows who is walking through the door at the doctor's office...

This summer I walked into the radiology department at Penn Medicine Radnor for an MRI. The nurses were finishing up with another patient and so there was nobody out in the waiting area.

As I was waiting, I saw the most beautiful sign on the check-in desk and it said “A chaperone may be requested for certain physical exams.” The reason this meant so much to me is because I am the first known victim of former Olympic gymnastics team doctor Larry Nassar. I was abused for seventeen years starting at the age of eight years old. My abuse took place in another academic medical institution and Larry was a doctor who should've been protecting us and healing us, but that institution failed us. Some of my sister survivors today have panic attacks at the mere thought of going into a doctor’s office and others won't have children because they are unable to see an OB.

Often when we think about listening, we think about conversations with other people, but to me this sign meant that Penn Medicine was listening. No one knows who is walking through the door at the doctor's office. And no one would've known that night that they had someone who had been abused as a child. But that sign made me feel safe, it made me feel heard, and it made me feel cared about.

Today I’m an activist and I’m a lawyer representing survivors of sexual abuse and I work day and night trying to change the protocol at institutions who are not doing it right. These institutions approach this issue of safety reactively, when something comes up or there's a problem. But this was the first time that I walked into a doctor's office that was being proactive, and was doing it the right way, just for the sake of doing it the right way.

I have a four year old daughter. I think a lot about the life I’ve lived and how institutions can and hopefully will change in order to do it better. I think a lot about the world in which she’s growing up. I’m so thankful that my daughter’s generation and anyone vulnerable will get a different kind of care than what I’ve experienced. And while it was just a sign, it gave me a lot of hope.

Softening

She really just needed a person to hear what she was going through...

Usually with my particular position, we’re more along the lines of the front lines. We’re the people that patients will call in to, and will be the first person to talk to. A lot of times patients will call us, and they’ll be dealing with a lot. They’ll be dealing with circumstances with the medical issue that they’re having; they may have circumstances going on with their family or with their jobs – and it can be stressful sometimes, but it also allows us access to really be the person and actually listen.

There was one woman that called me last week, I want to say. She started talking about a lot of different complaints, a lot of complaining with how she wasn’t getting adequate care, a lot of complaining with the issue that she had which was a right-foot injury. Just kept on going and going, and most people would generally get very annoyed at that, but I actually listened intently to make sure I didn’t miss anything.

At the end of what she was saying, she had this emotion of desperation, almost like she was trapped, and she couldn’t find a way out. She said, “I just want my foot to be better.” I sat with it for a second. And I said the first thing that came to my mind, that was, “We want you to be able to be better, too; we want you to be able to walk, too.”

In that instance, there was a real connection of vulnerability, almost like we touched our own humanity in a sense. After she said that and I said that, she softened a little bit and started talking to me a little bit more. She was someone that really just needed a person to hear what she was going through.

Working here allows me the opportunity to be with people one on one, no matter the circumstance, no matter what they’re dealing with, to just be able to listen to them, and to just be able to connect with them in a way that most of us don’t connect with our own people in our life.

A Good Face

He's looking in the mirror to discern his own worth...

Twelve years ago, my husband had surgery for oral cancer. His incision started behind his right ear, arced down along his neck under his jaw, and ended under his chin. It was a long surgery, about 9 hours, and I remember that night when I saw him for the first time, around 11 o’clock, I remember the incision to me looked pretty messy. And I was surprised by that. I was expecting it to be neat and tidy and clean, and it actually was very bumpy, pulpy, and looked like ground meat.

My husband was not interested in seeing his reflection until about five days later. He requested that the nurse bring him a mirror. Now this surgery meant that my husband had a tracheostomy and a tube in his nose for nutrition, so he was not able to speak, and communicated to me by writing down what he needed or wanted. So the nurse brings the mirror to him, and she says “Are you ready?” And he shakes his head yes. He holds up the mirror, and when he saw his reflection, his whole face, his countenance, completely dropped. And I panicked, because my instinct was, how am I going to fix this? How can I make him feel better? I didn't know what to say, I didn't know what to do. But he was horrified by his reflection. And he took a pen, wrote down on a piece of paper, very angrily, “I look like a freak!” And it broke my heart. The nurse saw this and she said “You're right, it doesn't look good today. But every day it's going to look better and better.”

And I was so appreciative that she stepped in when she did, because she saved me from having to come up with something to say to my husband to make him feel better. And what impressed me was she told him the truth. She recognized that he saw that it wasn't what he expected, that it looked bad.

Years later, my husband still looks in the mirror and will say to himself, “I look like a freak.” His face has completely changed from what it was prior to these surgeries. And instead of saying, “No, you look fine,” I say “Clark it's not the same face you had, but it's a good face.” So what does it mean to say he has a good face? I understand that, in that moment, he's looking in the mirror to discern his own worth. But he's also looking into my face to see reflected back what I see.

Today, 12 years later, as his spouse and caregiver, my role is far more elusive. I no longer change bandages and perform trach care. Now, I reflect back but I see you when I look at his good face. His compassion, courage, and fortitude in living and loving through these life-changing experiences. And he also sees I embrace him as he is.

The Interaction

This is a story about doctors willing to learn something new from from their patients...

I am a twenty-five year patient of the University of Pennsylvania Health System, I'm a caretaker, and I’m also an ombudsman. This is a story about doctors willing to learn something new from from their patients, and building up an exchange of trust.

I was scheduled for a procedure. I was getting prepped -- my doctor, the anesthesiologist, and nurses all all around me getting me ready. The anesthesiologist asked me, was I allergic to any medications? And I told him, yes, I was.

This particular medication, he was not familiar with it. And he did not know that it affected people of color. He did not seem to have any knowledge of that interaction. So after I explained it to him, he looked a little perplexed. But I told him I suffered from the most mild form of it, but I've known people who had the more severe reactions.

So after that he left. And my doctor came up, and I told him about the experience. And I was really looking for another anesthesiologist, because I wasn't comfortable. But I was willing to go [forward] anyway.

After about 10 minutes, the anesthesiologist came back, apologetic, shook my hand, and thanked me. The fact that this doctor came back, humbled himself, and told me that yes, he had researched it, and I was right -- that had a great effect on me. And I really feel that that was just something that I'll never forget.

This experience really, really changed how I felt about doctors, and also my fear of communicating with my doctor. I just felt more open to talk. I felt a certain trust. And I felt that, wow, we should listen to each other, and also learn from each other.

The Son

He had this heavy sense of burden...

As a primary nurse in the ICU, I know that we need to go beyond the boundaries of understanding the patient and what’s happening with them and understanding the family and the dynamics.

It wasn’t too long after I started caring for Phil that I really knew that the care had shifted towards his son John. John was a medical student and was currently starting his fellowship. He had this heavy sense of burden to not only care but make decisions on his father’s behalf because he really wanted to save his father’s life. And over time I just watched John struggle so much with knowing that he wasn't going to be able to save his father.

It became difficult to care for Phil because John was demanding information instead of working with the team. The conversations went from sort of being a collaborative member of the team to why weren’t we saving his father. So one day when I was taking care of Phil I told him exactly what I was thinking. “John knows that he's going to lose you and I want to be able to help John through this. Is it ok if I talk to your son alone about this?” And I know that Phil understood what I was talking about because he squeezed my hand.

So John and I were able to sit down alone and talk in a conference room. I asked John, “Tell me about your father, what was he like?” And he just started talking about his dad and talking about what a wonderful relationship they had and by his own will he was able to say, “I know my father wouldn't want to live this way.” John was able to come up with the whole plan of what the right thing to do was. And Phil was able to pass in comfort and he didn't have to suffer anymore.

[…]

I had formed a very strong bond with the family and they had invited me to Phil’s funeral down in Cape May. I sort of felt compelled to go, I felt that there would be some closure for myself. So my daughter went with me and it was two days before hurricane Sandy was supposed to hit the coast of New Jersey.

After the funeral they had invited me to the burial. The cemetery had dug the wrong grave for Phil. And it was the first time I saw John just laughing about the sequence of events with Phil. We went to where Phil was supposed to be buried and we had a nice little service for him there but they had to wait until Hurricane Sandy had passed before they could really find closure in Phil’s death.

We look for closure, we expect things to go a certain way and sometimes they don’t. But we have to just be open, and embrace the way that things unfold, so that we can always be there for our patients and shift our care to really help them in the end.

The Last Stop

So many people see the addiction. I see the pain...

My name is Mary and I work at Penn Medicine Princeton House. I try to help women heal from their trauma.

My experience has been that many women are struggling with addiction because they've never had an opportunity to heal from their trauma. Some have never had an opportunity to even speak about their trauma.

My story is about a client I met about a year-and-a-half ago. She came in, she was struggling, and she was pacing, she was agitated. I wasn't exactly sure if I would actually see her again. She was addicted to cocaine, alcohol, and in the past, she had been using meth on and off. She came with a severe history of abandonment in her childhood, physical, sexual abuse. She was broken in many ways — spiritually, emotionally, physically — just broken. And she said “This is it, this is my last stop.”

Working with her was challenging. She struggled to concentrate, she struggled to focus. I often had to move really close to her in session, directly ask her to make eye contact with me, watch her body language, and wait for her to soften. The tension was so intense for her. It was extremely hard for her to talk about what she was feeling.

Because she was relapsing and struggling in our treatment, we thought she needed a higher level of care, and I worked to make that happen for her. She lasted 9 days. She did call me and say, “I can't do this, I'm out. But I'm okay.” And I knew that she wasn't okay, I could tell. My fear was that I would never see her again, that she might not make it. I have attended many funerals, and that's a real fear.

It is difficult to work in this field. It's hard, because you don't know outcomes. And my experience has been, working in the inner-city and in an ER, that it's frustrating. Many people do not want to work with addicts. And I would go, and I would find a chair, and I would pull the curtain around, and just sit there. And sometimes just hold them, and tell them it's going to be okay, and offer them services. Many times, that was a great time for them. Sometimes it's finding the right fit to be able to talk about this. Women can say these are things that happened to me, and I'm hurting.

So 3 weeks ago, she called me out of the blue, and told me that she was doing really well. She has been a year and a half sober. She told me that what haunted her was me asking her to sit still, and feel. And she said she just wanted to fight that. All she knew how to do was run. And she knew in her heart she needed to sit still and feel.

And she just really wanted to thank me for all the work that we did together, and it just felt so good to me to hear her voice, and how proud she was of herself. It made me feel proud of her as well. So I invited her to come in and speak at the 12-step group that I do on Wednesday, and she was ecstatic. And just seeing her when we made eye contact, it was just so meaningful to see her smiling, to see her sober, to see her gratitude.

So many people see the addiction. They see the dirty, filthy woman. I see the pain, I see the hurt, I see the heart of someone who's really struggling. And it's not a choice — it's a life. And it's a life worth trying to help.

Keep Truckin'

After everything I went through, I woke up….

My name is David and this is the story of how I recovered from an amputation due to necrotizing fasciitis.

My knee hurt for about a week. I went to a local hospital and that night they amputated my leg from the knee down due to infection. And that hospital realized they couldn't handle me so I was transferred to Penn where they spent the next month knocking the infection down with several surgeries. I was set to go home Thanksgiving. A nurse found me that night slumped over and unresponsive in bed. I spent the next month in a coma. I suffered heart and liver failure, kidney failure, two collapsed lungs, and a stroke.

The day after Christmas I woke up and realized I was in a different room, and I was on a ventilator. A nurse realized I was conscious and explained to me exactly what happened. The rest of my leg had been amputated after several surgeries, from the knee to progressively up my leg, eventually to the pelvis.

I spent the next month recovering. I had to learn how to do everything all over again. I couldn't sit up by myself, nothing. The patience of the therapists there was utterly amazing. They would hold me up each time something bad happened. They convinced me to keep going. I'm a very stubborn person, and I could get discouraged easily. “Just keep going, everybody has a bad day,” that's what they would tell me. And that's what I did, I just kept truckin’.

I was released in March from the hospital and I went to Good Shepherd. One of the nursing staff told me she had worked there and that they were very hard on the patients, they made them work. And I said well that's fine with me, I had 12 years of catholic school.

I started in March and started playing with baby toys and clothespins and blocks, because that's where I had to start. I couldn't tie my shoes, I couldn’t write my name. I had to tell the doctors, “You put me back together enough that I can go fishing in a wheelchair, I’ll be happy.” Well, one of the therapists one day surprised me. I came in to do my normal work, and there was a fishing rod in the corner. It was her husband's fishing rod. We stuck a paperclip in it, tied a line to it and I was able to cast it across the room. That just gave me the want to do it again.

After about a month I went in for my regular therapy session and they had me go over to the parallel bars, I didn't know why. One of the therapists grabbed this large metallic knee brace and they strapped it onto my right leg and they told me that they were going to have me walk down the parallel bars.

At that point they seemed to grab every available therapist who was anywhere near me, probably about 8 of them, standing around me in any possible supportive position you could think of. And I staggered down the parallel bars, which is about 16-20 feet. That was the first time I had walked in about 4 or 5 months.

Even though they told me it was only 1% of the people that were going to be able to walk again with my particular amputation, that didn't bother me in the slightest, because I had just managed to walk. I staggered to the end of the bars, and the entire therapy room was clapping. 1% or not, I was going to walk again.

So three years later, I have a prosthetic. I'm able to walk by myself with a walker. I'm part of a team here. The therapists have been beyond helpful. I can't thank them enough. After everything I went through, the coma I was in, and my level of amputation, how could I give up after I woke up?

My Second Life

The young man in me...

My name is Peter Matthews. About 2 years ago, my life was saved through a liver transplant. I got really sick really quickly, and I was told I didn’t have that much time. This was in September. I was told Thanksgiving may be out of my range. The only way I was gonna make it was if I got a transplant.

I had to trust the people at Penn. I just did not think they’d let me die. And my family and I waited until we got news that there was an organ available. We got our hopes up. Unfortunately, that didn’t work out.

Then one day after a few weeks as I floated in and out, I saw someone before me. I couldn’t make out a face, and then I heard a soft voice and realized it was a young man.

And I could make out an outstretched hand, and somehow he knew I was an Aussie, and he said to me “Here mate, this is for you.” To this day, I’m certain I heard his voice. Later that day, the medical team told me that a liver was available. Then, a few weeks later, I asked my team about the donor and I was told that identities are withheld. And I said “can you tell me if it was a young man?” Yes it was. From there, everything moved really quickly. I had the transplant not long after that. My life changed forever.

I’m trying to live a life of gratitude and purpose. I’m trying to make my life count for something. I’m also trying to live for the kid because I really do think I’m living for two people.

When I feel joy at just breathing, I struggle with survivor’s guilt. I’ve learned that this is a real, palpable thing, that’s experienced by many organ recipients. My guilt has two sources. First for the young man. For me to be speaking to you, he had to lose his life. Second, because I was transplanted ahead of so many others, so many who’d been waiting for a long time.

I think the only way I’ve been able to deal with it is to have a purpose in my life. I sometimes feel the young man in me. He’s close to me. He’s gonna grow old with me. I hear my breath going in and out. I think that’s when he talks to me. I swear I feel him just under my rib cage; I get a little something, and he is trying to get my attention. And then some days when I have a little problem I’m trying to fix, I say “Kid, what are we going to do about this?”

It’s really hard to express how I feel connected to this young man. I don’t know much about him. I think about the life he lost. All I can do with my second life is live it in a way that would make him proud.

*

My name is Emily. My father has had two distinct lives. One pre-liver transplant and one post. Since October of 2017 my father’s purpose, his life goal, has distinctly changed. He believes in paying it forward, and honoring his young donor’s life, and not taking one single second or mundane detail in his life for granted.

He has become a champion for organ donation, for giving away what you have but no longer need. I take great comfort in knowing that however long the rest of his life may be, I will know that he was happy, and he was fulfilled, and he had a life full of gratitude and was indebted to a young man that we will never know.

The Widowmaker

You don’t strike me as a complainer…

I’m a retired English teacher and a hospice volunteer. The practice of deep listening has been essential to my work both in the classroom and at the bedside. And so when I first heard about the Listening Lab, I thought I would share a story about my work in hospice. But the story I’d like to share with you is not about deep listening but about being deeply heard.

At the end of a recent routine check-up, my cardiologist— I’ll call her Dr. M— asked me if there was anything else I’d like to discuss. Hesitantly, or maybe I should say half-heartedly, I mentioned that for some time I’d been experiencing a vague, mild sensation of fullness in my chest, no pain, no shortness of breath, just sort of heartburn without the burn, I told her. She asked me a few questions, then paused, and said, “I don’t like this story.”

The next day I had a nuclear stress test to measure blood flow through my heart at rest and at peak exertion and a few days later met again with Dr. M to go over the results. Though they were entirely negative, she said, “I still don’t like this story. You don’t strike me as a complainer, and the symptoms you describe, however mild, suggest that there’s something going on.” We agreed that I would have a cardiac catheterization here at PMPH, a simple out-patient procedure that would give us a clearer picture of blood flow to my heart. Then we’d meet again to decide what treatment to pursue.

However, that first catheterization revealed a 90% blockage of my left anterior descending artery, a piece of plumbing so essential to the heart’s healthy function that its nickname is the widowmaker. I was admitted immediately for monitoring overnight and the next morning transported by ambulance directly to the catheterization unit at HUP in Philadelphia to undergo a second catheterization and stent implant. That procedure successfully removed the blockage, and I am on the mend, but I might not have been here to share this story with you if my cardiologist had not been listening to me more carefully than I was listening to myself, and listening intently enough to hear beyond the noise of negative test results.

In her book, What Patients Say, What Doctors Hear, physician and author Danielle Ofri says this: “For all the sophisticated diagnostic tools of modern medicine, the conversation between doctor and patient remains the primary diagnostic tool.” I’m living proof of just how true that is, and I’m lucky to have a cardiologist who lives that truth in her practice.

Becoming Vulnerable

Others look at me and don't see the disability…

I'm Alan. I’m a physician, a scientist, and an engineer.

In May of 2019, my life changed dramatically. During that time I had a bleed, a hemorrhage in my brain called a cavernous angioma, which occurred out of nowhere. It led to tingling in my arms, first in my right hand, spreading up to my arm, my left hand, and my right leg. It impacted me in many ways. It was life changing.

As a physician, I was entering the healthcare system also as a patient. I was nervous, I was anxious, depressed. When I went to the emergency room, people heard my clinical story but they didn't hear me emotionally; how important my anxiety and depression were. And that hurt, because for me that was most important, that was what was concerning to me. It's not how bad my symptoms were at the moment, it's “Are these symptoms going to be with me for the rest of my life? Is this the way I am? What will happen to me?”

Emotionally it was very traumatic for me. One of the residual effects of the brain bleed that I had is that I've lost sensation in my hands, decreased ability to tell where my limbs are, where my fingers are. Some people we can look at and we can sense that there's a disability there. For myself I think others look at me, and they don't see that disability. The difference in expectations that people may have about how I do things... I'm different than I was. It’s something I have to come to terms with. We can't see disability necessarily, and it’s there.

As I watched the interactions of others who have the rare disease that I do, I see that they’re hesitant to expose any vulnerability or any disability. That's because with that vulnerability they may not be as valuable in our society. That’s changed me -- both the way I live, how I view medicine, how I view healthcare. I think that after all of the technical interventions that medicine has to offer, It’s the emotional aspects, it’s how we make each other feel, how we listen to each other, and whether we really hear each other as we talk.

As I thought about where we listen to each other in our healthcare system, it came to me that hospice is the place that we listen, because there's nothing left to do. Perhaps that’s where we should start. Medicine sometimes confuses quantity of life for quality of life. There’s a lot of healing that happens even when medicine doesn't have anything to offer.

Because of that I’ve become a hospice volunteer. In the training people in the class thought it was funny that there was a clinician in the class. I thought it was kind of funny that it wasn't filled with clinicians. How can anyone practice in medicine if they don't know the perspective of the patient. So I think that that's perhaps the most important thing that healthcare can do: to provide love, to provide compassion.

Quarantine

It was one of the hardest calls I had to make…

My name is Ara. I am a physician at Penn, and I work in Otolaryngology.

About 10 days ago, after finishing about six hours of surgery with my nurses and my chief resident, I was notified that I had been exposed to a colleague who had tested positive for Covid-19. I was considered in the high-risk group to potentially get infected. I needed to immediately proceed into quarantine status. I changed, I packed up what little I bring into the hospital, and I walked out of the hospital on to the front circle. And I looked at the street in a very different way than I normally do.

So I am getting ready to call my wife and tell her what I have just heard, and I don't want to make this call. My wife is pregnant, she is 3 weeks away from delivering. Quite honestly I am afraid she might be infected, or the baby, or the child we have. And then on top of that, I don't want to miss the delivery. So it was one of the hardest calls I had to make.

I had settled in my head that I was going to the hotel. My phone was dying, and in some ways I felt like I was all alone. I think I really was. There was a list of little things I had to solve. They were all made more complicated by the fact that I wasn't going to get to go home and give little Ara a hug and my wife a kiss.

I remember I was crossing the Walnut Street Bridge feeling really lonely. It felt really long and slow. I thought I would feel better if I planned, so I planned a little what I would maybe do when I got to the hotel, and how I would spend my days. It didn't really feel like I was in charge of much of anything at that moment, besides staying away from everybody.

I walked out of the hotel to pick up my bag from my wife, and you could tell she wanted to hug me. And I go, “you can’t hug me.” And she goes, “I hugged you this morning.” And I go, “yeah, but now it’s different.” She goes, “it’s not really different.” And I go, “it feels different.” “I feel like I can’t hug you because I don’t know what's going to happen next. So trust me, and don't hug me.”

It was a long nine days. But fortunately, I didn’t get sick. I felt good when I had my routine. I felt good when I was able to do a virtual clinic, and when I made my bed, and folded my clothes, and when I got to see my family over the FaceTime, and watch videos of my life at home unfolding without me. Because it was the next best thing to being there.

As I envisioned going back into the society that I just left, the hardest thing for me to imagine was how to package my two biggest fears. Can I keep my family safe, can I be healthy for them? And then the fear that I would be unable to help others. This incredible urge to be present at the hospital, ¬¬helping take care of people that are in need, but also being there as a colleague who supports other colleagues in what we do.

Almost everybody has the chance of getting sick. I realized that I'm one of hundreds already, and these conversations, these inner fugues are something that almost everybody is going to feel. You have to put it on the table that you're willing to go back and do what you love, that you care about, that you're committed to. For me, I realized that all of those two or three circles -- you, your family, your job, your commitment -- they all belong together, especially now. They really belong together.