What is on
your mind right

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.

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.

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.

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.

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.

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.

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.

Visit the exhibit

The exhibit launches on October 14, 2019 at the Hospital of the University of Pennsylvania (HUP) during Penn Medicine Experience Week. It will then travel across the Penn Medicine System throughout 2019–2020.

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 – Mar 13, 2020
Penn Medicine Cherry Hill Mar 18 – Apr 20, 2020
Pennsylvania Hospital Farm Journal Building (PAH) May 11 – Jun 5, 2020
Lancaster General Health (Suburban Pavilion) Jun 15 – Jul 17, 2020
Penn Medicine Radnor Jul 27 – Aug 21, 2020
Chester County Hospital (CCH) Sep 7 – 30, 2020
Penn Medicine Valley Forge Oct 6 – 23, 2020
3600 Civic Center Blvd. Nov 3 – 22, 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?