What is on
your mind right
now?

Created by patients, caregivers, staff, and providers, the Penn Medicine Listening Lab is a storytelling initiative that embraces the power of listening as a form of care.

In this time of COVID-19, the Listening Lab is developing a new platform for sharing virtual postcards to inspire our community. Stay tuned!

What does it feel like to have someone listen to you?

"I shared my story so that someone else out there might know that they are not alone. It was a meaningful way for me to contribute to the greater narrative around personal experiences with illness."

– Jessica A.

Experience a story

Thank you for taking part in this project through the act of listening. Below please find a selection of stories shared by patients, staff and providers, and caregivers from across Penn Medicine.

My First COVID patient

That day I came in, I was nervous and scared as to what to expect…

My name is Cyra, and I'm a registered nurse at Lancaster General Hospital.

I’d like to share a story about my first COVID patient, David.

At this point you didn’t know how the virus was being transmitted. It was obviously nerve wracking and we weren't really sure what to expect, how fast we were going to peak, and how everything was going to be. Everyone was being cautious and wearing N95’s and wearing PAPRs [powered air-purifying respirators] and all that. What if protective equipment actually didn’t protect you from it?

That day I came in, of course I was nervous and scared as to what to expect especially since David was very young. And I was surprised because he was in his 40s. You could tell that he's able to walk, he's able to do everything independently, but at that moment he couldn't do anything. And there is barely anything I could do. So a lot of the anxiety was knowing that I had to care for someone that I didn't know how to care for.

On our floor the nurses drove everything. We didn't have housekeepers, we didn't have aides, we didn't have respiratory therapists or anyone. So basically we were trained to do everything our patients would need.

Just the garbing part of our PPE [personal protective equipment] was very nerve wracking already. The hospital was pretty strict about donning and doffing. I had to make sure that I was going to be prepared for it, and I was going to be protected.

The first time I actually went in his room I spent about an hour and a half in there, you know making sure he was OK, giving him his tray for food, cleaning his room making sure he showered and all that. So while he was washing up, I was wiping down his room, and making sure it was nice and clean and tidy. And I got to know my patient.

I feel like at that moment my patient also had more anxiety than me. His family wasn't there. No one is allowed to visit. You feel very isolated in a room and you're not sure about what's going on, because you just see it on TV and it's happening to you.

I just figured my job would be to make him comfortable and make sure that he knows that there are people around him, and that we’re there to help them. There is no one else on our floor, there was no one else he could talk to. I was the only person coming into his room besides one other doctor who was there 10 minutes once a day. We built our relationship on what we were both facing.

That day that he left, I actually wasn't his nurse. but I saw him roll out of our unit and I realized that he couldn't even recognize me having my PPE on. And that didn't make any difference to how I felt, because I know that I had made a difference in his life, and he had made a difference in mine.

With this pandemic that we're dealing with, with everything going on, it's the relationships that will help us get through.

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.

Acts of Kindness

They are not just treating you, they see you as a person...

To learn more about Brad Aronson and his book “Human Kind: Changing the World One Small Act At a Time,” visit: www.bradaronson.com/humankind-book/

My name is Brad, and I was introduced to Penn Medicine the way most people are, with a bad diagnosis.

My wife was diagnosed with leukemia, and we were told that she would need two and a half years of treatment. You immediately go to the hospital for a month, and then, if all goes well, and in that month you're in remission, you then get to go home. But you’re back every single day, at other points 4 days a week. We got to spend more time than most people at Penn.

We really appreciated the culture and the people. And it starts from the second you get there. When you go for your treatment you pull into the parking lot. All the people working are so friendly and kind. And it just makes you breathe easier.

And then you get to the elevators. And we always parked on the same floor. The woman was so nice, she would talk to us, learned about our son Jack. It was just part of that friendliness that carried through and it made a huge difference.

I cannot say enough praise about the nurses. We spent a lot of time with them. They must see dozens of patients a week, but every patient is an individual. They're not just treating you, they see you as a person, and they have conversations. And those conversations really matter. I remember one time, when we were talking to one of the nurses, Abby, and we were telling her about our son's obsession with baseball. Jack loves the Phillies, he has five different Philly shirts that look the same. And I remember one time we got a call at home, and it was Abby. I was at first a little bit nervous, like why is a nurse calling us at home. And she said, I just wanted to let you know that my boyfriend has season tickets to the Phillies, and he has extra tickets tonight. And we thought maybe you’d want to take your son to the game. And that was awesome.

I remember another nurse, Sharon. When I was in the waiting room, I saw a woman who was having trouble walking. And Sharon walked up to her, and didn't say, “Can I help you walk, can I offer assistance?” She said, “Can I walk with you?”

And then kind of grabbed this woman’s arm, and the woman was happy, and they were walking along. Itt was such a friendly way for her to offer help. And there was Claire, who was hilarious, and you know, told us the story of accidentally basting her Thanksgiving turkey in Pine-Sol. Cause she had done a late-night shift and didn’t realize what she was doing, and she woke up and said, “oh my goodness!”
You don’t laugh that much when you are in treatment, it’s kind of tough. I see my wife feeling really bad, and you know, Claire could always get us to laugh.

And one thing I also remember is, so we’re going through this long treatment, and the nurses are suggesting that Mia and I go to this conference for young cancer patients and their caregivers. When we were there, a patient advocate spoke who had been through the same treatment as Mia. This woman said, if you are going through two and a half years of treatment, you need to come up with projects. A project will distract you, a project will give you focus, and help you get through this. Mia decides she's going to write in a journal. Our son Jack, who was about five and a half at the time, decided his project was going to be playing 200 days of Wiffle ball in a row. And my project was, I was going to write a book about small acts of kindness that transform people's lives.

It started with the acts of kindness when Mia was going through treatment, from the people at Penn, from our friends, from our family members, from strangers. Acts of kindness that got us through that tough time. I started writing other people's stories. Stories about a small act of kindness that helped save a life, and then stories about the butterfly effect of an act of kindness.

The treatment was two and a half years, and I don't remember a ton about it, which is probably a good thing. But I remember those little actions that give you the strength to carry through.

When Mia began treatment, I thought of myself as the primary caregiver who’s got to make sure everything works. What I quickly learned is that caregiving takes a village. It was everyone who was playing a part, it was our family, it was our friends, it was our physician, it was the nurses, it was the parking attendants. Everyone helped with that experience, and every bit of their help added to our strength to get through it.

For all of you out there who helped us, and there are many, many of you, thank you.

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.

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.”

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.

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 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.

Visit the exhibit

The exhibit launched on October 14, 2019 at the Hospital of the University of Pennsylvania (HUP) during Penn Medicine Experience Week, and continued traveling across the Penn Medicine System throughout 2019–2020. The schedule for future locations is currently on hold due to COVID-19.


Coming to a location near you!

Hospital of the University of Pennsylvania (HUP) Oct 14 – Nov 8, 2019
Perelman Center for Advanced Medicine (PCAM) Nov 13 – Dec 2, 2019
Good Shepherd Penn Partners (GSPP) Dec 5, 2019 – Jan 10, 2020
Penn Presbyterian Medical Center (PPMC) Jan 15 – Feb 7, 2020
Penn Medicine Princeton Health (PMPH) Feb 19 – Jul 1, 2020

Join us for an immersive visual and auditory experience featuring inspiring stories from patients, caregivers, staff, and providers.

Who would benefit most from hearing your story?