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My name is Blake Bradford. I'm 51. I was diagnosed with multiple myeloma a few years ago, then I was diagnosed with lymphoma in addition to the myeloma. It was unexpected. I was under doctor's care and I had a care team, but my condition worsened significantly. It was sort of a lot to take in. And now I've been discharged into hospice care. And I am home at my parents' house, where I can be with my family.

I was in the hospital for the majority of the previous 12 weeks, long enough for the seasons to change. And it’s just, kind of, taking in a perspective on all of it. There are windows in those buildings, but there's no sunshine. I haven't seen the sun or the sky in months now.

It affects your mood when you kind of know, and you can just sort of see, the shadows moving, but you can't actually see, you know, the view. In the darker moments, just feeling like we're gonna go in a hospital and I'm gonna die here… I'll sort of die, and be forgotten. People will read about this, maybe, in the small print in the Inquirer sometime. But to be seen, and to keep that human connection, and to affirm that you're valued, and you're part of a community… and even though I was there in the hospital, people still want to be with me. You just need that, especially in the way that I was. If I end up hopeless myself, just that there are other people who are wanting good things, and giving me hope, is important.

I don't know that anybody said I wasn't going to get better, but it's just that your condition is serious, life threatening was abundantly clear. I don't have that same sense of like one day we’ll triumph, but I didn't believe them when they said that I couldn't recover. It's not as heroic and linear as that.

In the hospital I can have one visitor at a time. And my kids couldn't come visit except by special arrangement. It was hard, because it was, you know, on my birthday, and I'm in the hospital. They did make allowances for when we had to have meetings with my family and the care team. I appreciated that, because that dialogue was so important. There were things that I didn't want to decide alone. It's really work that I can't do, to be the patient, and be the sort of main communication secretary for what are the doctors telling you.

While I'm here, there's the opportunity to think about the end of life stuff in a real way, in a concrete way. Do I want a memorial service, or cremation? That's hard, and here we are. We get to where we've got to deal with difficult things.

I don't know what comes next, and my prognosis isn't great. I'm not waiting on miracles. But to become ok with not making everything happen that I wanted to happen... To prioritize certain other things during whatever time I have left. I don't want to just sort of be idling. I don't want to waste time that I don't get back. Just thinking through choices carefully, and moving with purpose.

One of the things that’s been most valuable about finally getting out of the hospital, has been being able to come back to my family, my wife, and my twins – my daughter and my son. Being able to see them, and touch them, and hear their stories in person for the first time in most of twelve weeks.

I think about the ways that this has made me more comfortable with affection. I think about showing love, and not just the expression, the words. I’m comfortable with more of both now.

I don't know that I've had this transformation yet, where it's like, I see the world differently, but I do. There's always the sense of life is fleeting that way. Living with purpose. A different degree of appreciation of your friends, your family, people who care about you.

I don’t know that I can say enough to them about how much I appreciate being part of our family, and having our family, and this dynamic. Before I got sick that was something that was cherished. And now it’s even more urgent.

One of the things this has given me an appreciation for is just an opportunity to express my gratitude for the people who have cared for me at a difficult time. I want to give my heartfelt thanks to the nurses and the care teams in the hospital for their patience during a time when I was probably frustrated and impatient, and challenged in my capacity. To the nurses I say, thank you.

For my parents, the challenge of seeing me, their child, in this weakened state... They were present, and supportive, for me and for my family, throughout this. There really are no words to express what that means to us as we continue this journey…

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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: Compassionate Relationships

I'm Nina Solis, and I am a hematology, oncology and COVID-19 nurse working at the hospital of the University of Pennsylvania.

For me, one of the most frustrating parts of being a COVID nurse was that feeling nobody cares. It was like the world around me doesn't recognize the work I'm doing. It doesn't care and they don't care enough. Opening my eyes to a lot of that was really hard. A lot of people close to me didn’t understand, or didn't take it seriously based on like the tragedy we were seeing every day. And even to some extent now. It's still happening and a lot of us are experiencing this rebound effect. We held this together for so long over the past year and a half and feeling really exhausted.

Originally, a lot of people like myself who were young and living alone, and low risk, volunteered to be the first ones over on the COVID floor. It almost felt like I was being drafted.

I think I had fear for a lot of reasons. One was fear for my patients, because a lot of them were doing so poorly with their health. Sometimes people would look at me and ask me if they were going to die. It was so hard to know, what to say or what to do.

When someone's looking to you for an answer about something so deep as “Am I going to die? Am I going to make it?” All I can really do is reassure them that they're in really good hands here and that they're cared for. But if they are likely going to die, it's really a difficult conversation to have with them. I think the only thing you really can do is let them know they're not alone. It’s hard not to take that on, hard not to come home and think about that and sit with that.

A lot of my coworkers came together and talked a lot about our feelings of moral distress. We feel very morally distressed that we can't care for the patients as we normally would, that we're risking our own lives in a way.

I spent so many years before this as well in a very emotionally exhausting field. As an oncology nurse, even before the pandemic, we live so many lives within our job. We deal with so much tragedy that most people our age have never experienced, never will.

When I think about “what do I do with all this sorrow? What do I do with all of this heaviness that I feel?” One of my best friends and I were remarking that for all of the deep sorrow and sadness that we felt, we consequently feel joy more vibrantly.

I took up running during the pandemic, because I needed a solo activity. I would even run and just take like, the biggest deep breaths and feel so grateful. And think of all the people who I cared for, who couldn't, couldn’t even do that, couldn't even take a deep breath, they couldn't walk, they couldn't stand or run or be. It felt very free. It's moments like that I really acknowledge my freedom and my health.

One of our chaplains would come up sometimes and do breathing exercises and meditations with us, that really helped. I think we have an amazing team on my floor as well. We had great leadership and great management that really kept this going.

The social worker who was on our floor, worked with me directly to create what we call story sharing sessions. I came to her with the idea because a lot of our staff members were just so visibly burnt out and were admitting to feeling overwhelmed and stressed. Having a lot of compassion fatigue.

There’s a quote by James Baldwin that says something like, “We think all of our sadness and despair is the deepest that anyone’s ever felt, and then we read and then we realize we’re not alone in that.”

Having people in the same room who understand you and know what you’re going through, listen to you and really hear you has been really healing for a lot of people.

I have this tattoo on my arm that says, “Be soft.” And it's from this poem. Basically, reminding you not to let the world make you jaded, and to be reminded that there's beauty and goodness when you're surrounded by so much difficulty and so much pain. I remember I was in a COVID room once. The patient had urinated all over the floor and everything was wet. Someone was yelling into the room. The isolation gown I had, I didn’t realize had ripped and fell off of me while I was standing in the middle of the room. I saw my tattoo. And I was like, “No, I’m going to be jaded now. There’s no way I’m going to be soft after this. I'm gonna be hard.”

It’s difficult to bounce back from that feeling of feeling hopeless. But I think I also felt exhausted to from, the moral distress feeling like I’m not able to give the care I want to give. I am seeing so much tragedy and so much, death watching people say goodbye to their loved ones on an iPad.

I'm only 25. I've seen so much pain and so much suffering, but I've also seen so much joy and so much meaning. So few people my age could witness something or be a part of something so profound.

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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: Compassionate Relationships

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 said, “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

My name is Peter Matthews. About two 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.

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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: Being Present

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 nine 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 what I see 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.

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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: Compassionate Relationships

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 have 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 her body 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, arrhythmia 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.

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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: Compassionate Relationships

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 ten 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 that 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.

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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