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 has developed a new platform for sharing virtual postcards to inspire our community. We also welcome your feedback about your experience.

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

A selection of stories shared by patients, staff and providers, and caregivers from across Penn Medicine is available below.

Click here to access all stories recorded through the Listening Lab.

The Journey

We can be and should be better…

I am Florencia Greer Polite. I’m a 2002 graduate of the Perelman School of Medicine. And I currently serve as the Chief of the Division of General Obstetrics and Gynecology here in OB GYN.

The week of June 5th was a pretty stressful week. After the murder of George Floyd, I was in a number of meetings and realized that I felt like I was going to cry. And I said that to one of my colleagues, and he said, “You should just cry.” And I said, “I did that already, and I don't actually feel any better.”

I took time to write an email to our division about what it felt like to be a Black person coming to work every day after George Floyd. And how as a leader specifically, we had to pull ourselves together. That immense stress and pressure was, for me, almost insurmountable.

One of my colleagues was in the midst of organizing a protest type event and she asked me, “would I lead it?” And I said, "absolutely." We thought it was going to be fairly small and it ended up being thousands of students, staff, faculty, doctors, cafeteria workers, the custodians at Penn... It was at Penn's Franklin field, and it was massive.

And it was 10 times more emotional than I thought it would be. Just to look out at the faces of everybody. People were very focused and crying and I could see what I was saying was resonating. I talked about how we, at Penn Medicine, are in a very privileged position, and that our responsibility as caretakers and physicians goes beyond just the practice of clinical medicine. We needed to acknowledge systemic racism in our country. This particular moment was not just about ending police brutality. It’s a movement about dismantling every aspect of structural racism.

When we knelt for the eight minutes and 46 seconds, I acknowledged that it was going to be painful and that we owed it to ourselves because we have been comfortable for too long. And I asked that during that time people reflected on two to three actionable items that they would actually do in their own lives to address structural racism.

And the hope of kneeling was that George Floyd didn't die in vain, that Ahmaud Arbery didn't die in vain, that Breonna Taylor didn't die in vain, and all the names that we didn't have time to recite and the ones that were not even recorded.

One of the first people to come up to me was the custodian for labor and delivery, who I speak to all the time, I ask about her family, and she literally came and gave me this huge hug. And just told me that she was proud of me.

Patients both white and Black, have engaged me in a different way after that event. I had one older white female patient, when she saw the media coverage, who said to her daughter, “That's going to be my doctor.” And she was so excited to come into the office in a few months to see me. She was really proud to have a doctor who she viewed as being sort of socially conscious.

It’s hard to be a member of many communities. To be a member of the Black community, to be a member of the Philadelphia community, to be a member of the Penn Medicine leadership team.

As doctors, we are literally helping people every day, patients who don't have the educational wherewithal to engage in their care. But I felt very much in that moment that what needed to be said was that that's not the only way that we can make a contribution to our patients and to Penn Medicine and to Philadelphia.

I love Philadelphia. And I think that we can be and should be better. I love Penn. I think the Penn can be and should be better. And so, I am interested in making both of those places better.

Penn wants to be a leader in research and clinical medicine. Why would we not want to be a leader in the work to end systemic racism? I'm optimistic about that.

This is the journey. We are working towards an outcome that I don't know that any of us in our lifetimes will ever see. What I want at the end of my time here is to know that I have contributed to moving this journey forward. To moving us to a place that's better for my children, and that creates a better environment for the patients, who are the reason why I came into medicine in the first place.

***

The Penn Medicine Listening Lab is a storytelling initiative that embraces the power of listening as a form of care. While the stories featured here aspire to uplift and empower, they may also describe experiences of trauma and suffering. We recognize that listening can be a vulnerable experience and offer resources at Penn Medicine and beyond through our website for those in need of support.

Tags: Empowering Communities


We run

Our doors are always open…

My name is Anish Agarwal. I’m an Emergency Medicine physician here in West Philadelphia. I work at our trauma center at Penn Presbyterian Medical Center.

I have the honor to treat vulnerable populations and to see anyone who comes through our doors. The other day, another young man was brought into our emergency room. He represents, unfortunately, a very common thing. An epidemic of violence of young black men being killed. A tragedy here in West Philadelphia.

We wish we had a chance to know him. We wish we could show his family that we did everything we could. We wish that they could see that we cared about him, and we still care for him.

I wish families could see all the things that we do. How we move, how we mobilize teams, and jump into action. In the emergency room, the nurses, the doctors, the unnamed army of people come to try to revive people. We struggle because we don't know what happens outside of our doors. What we do know is when we get an alert that someone is coming in, we literally drop what we're doing, and we run to our trauma bay. There's probably twenty people that come together to form a team, laser focused on one person, one action. Attempting to save someone's life, to bring them back to life.

It's hard in the emergency room to really process things in the moment. I've struggled personally and I struggled with my community to think about how in the ER we live in this very unique setting. An intersection of vulnerable people, societal changes and demands, mental health, and violence. We see more violence every day.

In the ER, all we see are the people that come to us. It's been hard. I found myself grieving for someone that I cared for, for the first time. For so long, we’ve been siloed in terms of where healthcare providers are. There are few who can span both the clinical care and the advocacy within communities. I think part of the healing process for me has been thinking about how do I step out of the ER, but bring my clinical perspective to advocate for change?

This terrible situation and this terrible death, and here we are from the healthcare side and we can't talk to anyone. We sort of have to reach out and find one another. I was talking to one of the nurses the other day. For us to talk, it was a moment of connection we hadn't had, and now we do have. Here we are, feet apart in the ER, but we never connected about how we both are doing.

There's been countless young black men who come in, and are shot, and are dead. And I've never had a colleague reach out to me ever. And I've never reached out to a colleague either. With the national attention, people are coming out of the woodwork to actually focus on it, and hopefully lift up that rug, where we all sweep under the emotions that we initially feel.

You know I'm a father, and I have young children. And I can't imagine what his parents and his family is going through right now. I don't know that I've ever really grieved for someone I didn't really know, but someone who I was so intimately, at least for a short period of time, focused on saving.

I know my colleagues are grieving. I know West Philly is also grieving. I hope families know that when they bring people to us in the emergency room, we treat whoever is in front of us. Our doors are open and they will always remain open to help protect and care for and provide support for whoever walks through our doors.

I hope that his family knows that we ran, and we will continue to run, not only for him and for them, but for everyone in our city.

***

The Penn Medicine Listening Lab is a storytelling initiative that embraces the power of listening as a form of care. While the stories featured here aspire to uplift and empower, they may also describe experiences of trauma and suffering. We recognize that listening can be a vulnerable experience and offer resources at Penn Medicine and beyond through our website for those in need of support.

Tags: Empowering Communities


56 Days

I was one of the first 10,000 people in the country to have COVID...

My name is Mathew. I’m a minimally invasive surgeon in the gynecology department at Penn, where I’m an associate professor.

I contracted coronavirus very early, and then I rapidly deteriorated during the first week. I had a weird cough. I was fearful that it was coronavirus, and it was. By Saturday the 14th of March, I was in the Pennsylvania Hospital emergency room to get a chest x-ray, thinking I was just going to stroll in there and stroll back out, and that quickly turned into the need to admit me. I stayed at Pennsylvania Hospital for a week. And I was on a variety of medicines, but my oxygen requirements were rapidly increasing.

On the 27th of March, they recommended that I be intubated, because they didn't feel like it was safe for me to continue the way I was. They started talking about transferring me to HUP, which I think was the right decision. So I was intubated. I remained in the intensive care unit for about 56 days and I remained on the ventilator for over 30 days. I was critically ill. I suffered a stroke early on.

For about two weeks while I was in the ICU at Penn, they noticed that I wasn't really moving my left arm. And they noticed that I wasn't moving the whole left side of my body. I lost part of my vision in the process, so I can't see peripherally out of my left.

I'm trying to be pragmatic and optimistic. It could have been catastrophic. I could have lost the use of my right arm. I could have developed aphasia, and I wouldn't be able to speak. I'm still communicative. I can still see the world. I'm going to take it for what it is. I can enjoy life.

During the process of me being under, I was aware of a lot. Much more than I thought I would have been. I was aware of bright lights, lots of sounds. And I kept thinking to myself, is this what the ICU is all about? This is torture. I thought I should write a book for students and for physicians to say the ICU is just loud. It's booming, it's bright lights, it’s strobe lights.

Of course it's not all that, but that's how I was interpreting it. I had ICU delirium. And I remember thinking, when I get out of this joint, and I talk to my patients, I won’t talk to them like this, I won't touch them like this. I won't be this way. I'm going to try to be a better physician.

I don't think there's anything they could have done differently. But as a physician, I wish someone had told me that your patient might be looking at you but be interpreting things very differently. The patient’s experience might be very different than your very own. So you may be speaking in a whisper, but your patient could be hearing a scream. And I think having that understanding as a treating provider, that the experience you're trying to give to a patient may not be the experience they're actually getting, and that there's a disconnect... I wish they would have been, “How do you feel, what do you need?"

And I don't think as a physician, we're empathetic to the plight of patients who are dependent upon us for their everything. Patients would come to me hemorrhaging, and I would try to reassure the patients "Don't worry, the blood doesn't bother me." They would look horrified that I was going to witness them in that vulnerable state.

But you know what? I didn't really get it. It's a vulnerability that you don't want others to see. One of the most traumatizing things for me as a patient was lying in my urine and feces. For a month I was vulnerable, and I hated it. All I could think of was "Somebody please come and clean me up."

Oftentimes during our rounds, we say, "We'll see you later." What does later mean? Tomorrow? Next week? I'll see you in the office? Patients lack the ability to know that "Oh, you'll probably be back tomorrow on rounds." Because that's what we really mean. And I remember thinking, "You know what, I'm gonna start saying what I really mean to my patients. I'll see you tomorrow morning”. I was an attentive physician, and I am an attentive physician, but I feel like I could have been more.

Through this whole process and my rehabilitation, I realized that I'm probably not going to be practicing medicine again -- which is very hard, because I identify as a surgeon. But I can't really use my hand the way I would normally. So, I don't think I'm going to be operating on anyone soon. And that's fine.

I'm going to reinvent myself. I don't know how, but I'm going to find a way to be resilient and to have a career at Penn. I may not operate, but I will do something that I find important and worthwhile. We all go into medicine to help others. And there's still that need to help. I think that helper gene is going to be there for me forever.

Thank God for Penn, and for saving me. Thank god for the team for putting their life at risk to take care of me. I look forward to practicing medicine again, if I can. And if I can, I think I'm going to do it very differently.

***

The Penn Medicine Listening Lab is a storytelling initiative that embraces the power of listening as a form of care. While the stories featured here aspire to uplift and empower, they may also describe experiences of trauma and suffering. We recognize that listening can be a vulnerable experience and offer resources at Penn Medicine and beyond through our website for those in need of support.

Tags: Being Present


Three Months to Live

People have become more human to me…

My name is Kia, and I’ve worked 24 years in medicine. I’ve worked at pretty much every hospital in the City, and in 2018 I came to Penn Medicine. I had a lot of love with my co- workers and managers and supervisors, and we actually got to support each other a lot.

And then right before COVID hit, I had this horrible diagnosis - stage five renal failure. I needed treatment immediately. I was basically given three months to live. I don't know if I was in denial, or if I simply wanted to continue my life is normal, but I didn't leave work. I was sick pretty much every day, but I stayed at work.

And in this process, it felt like I became more human every day. I thought that I was really in touch with people. I've been in human services. I get to deal with people on the daily, but hearing them cry and hearing their pain, it was my pain. So, they were me, and I was them. Each day their struggle for medications and doctors and appointments, and hanging on the phone just to wait for somebody to answer, became very significant for me, because it was all of the things that I was currently going through.

It got to the point of where my situation became really dire. I had to kind of announce it to my community, and my world, that this is what was going on. And last but not least tell my parents, which was my biggest hurdle. It felt like the end of my life. I said I would just take the cards as they lay. Everyone was like ‘You’re not leaving here, you have to stay here.” I went to the hospital finally - three weeks left if I didn't come in.

Dr. Kolasinski, the head of my practice, came to my aid. She asked me on my bed if it was okay if she referred my name to another doctor who was well known to me, world renowned and I was like” Little old me?” And I was thinking, ‘How would he have time for me’?

I was home maybe a few days out of the hospital, and I got a phone call. It was Dr. Merkel, who was asking me, how could he help me? He just wanted to know what he could do. And I was like, ‘You're taking time out your schedule for me?”

And so, I look at my journey as what I call ‘Return the Favor.’ I've been in health care. I’ve been a clinician. I’ve cried with patients, they've cried with me. I've stayed after hours to work with patients. I've stayed on the phone. I listened. And now it was my turn.

He referred me to a wonderful doctor whose name is Dr. Aggarwal. He called me day and night. Talked to me constantly, helped me. I mean literally staying on the phone with me for an hour and a half. Just to make sure I was okay.

I just spent eleven days in the hospital and I came home last Saturday.

And I just wanted to tell you about my angels, while I was there, who took time to stay with me and support me, even down to the cleaning lady. And this is what I call ‘Returning the Favor.’ I played music to lift my spirits every day, and the cleaning lady happened to come in and it was like her favorite song. And so she spent an extra 10 minutes with me every day, just to dance and listen to this song.

Two nurses, Sahar and Meagan, stayed after shift with me every day. When I came home from the hospital, I announced it to my whole community via social media and I asked them to thank Sahar, and to thank Megan. Sahar happens to now be my Facebook friend and she's received about 100 thank you’s. I have medical staff who became more than their title, more than the letters behind their name. They showed me love and it was reciprocated.

I think the biggest lesson that I'm continuing to learn is, every day we become more human. You never know what's going to happen. You have to kind of store up your treasures in heaven while you can. You don't know when you'll need those treasures to come back.

And people have become more human to me.

***

The Penn Medicine Listening Lab is a storytelling initiative that embraces the power of listening as a form of care. While the stories featured here aspire to uplift and empower, they may also describe experiences of trauma and suffering. We recognize that listening can be a vulnerable experience and offer resources at Penn Medicine and beyond through our website for those in need of support.

Tags: Compassionate Relationships


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.

***

The Penn Medicine Listening Lab is a storytelling initiative that embraces the power of listening as a form of care. While the stories featured here aspire to uplift and empower, they may also describe experiences of trauma and suffering. We recognize that listening can be a vulnerable experience and offer resources at Penn Medicine and beyond through our website for those in need of support.

Tags: Empowering Communities


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 Penn Medicine Listening Lab is a storytelling initiative that embraces the power of listening as a form of care. While the stories featured here aspire to uplift and empower, they may also describe experiences of trauma and suffering. We recognize that listening can be a vulnerable experience and offer resources at Penn Medicine and beyond through our website for those in need of support.

Tags: Being Present


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 Penn Medicine Listening Lab is a storytelling initiative that embraces the power of listening as a form of care. While the stories featured here aspire to uplift and empower, they may also describe experiences of trauma and suffering. We recognize that listening can be a vulnerable experience and offer resources at Penn Medicine and beyond through our website for those in need of support.

Tags: Compassionate Relationships


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 Penn Medicine Listening Lab is a storytelling initiative that embraces the power of listening as a form of care. While the stories featured here aspire to uplift and empower, they may also describe experiences of trauma and suffering. We recognize that listening can be a vulnerable experience and offer resources at Penn Medicine and beyond through our website for those in need of support.

Tags: Compassionate Relationships


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.

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The Penn Medicine Listening Lab is a storytelling initiative that embraces the power of listening as a form of care. While the stories featured here aspire to uplift and empower, they may also describe experiences of trauma and suffering. We recognize that listening can be a vulnerable experience and offer resources at Penn Medicine and beyond through our website for those in need of support.

Tags: Empowering Communities


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.


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.

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