Journeys by Heart, inspiring stories from the staff of Upstate University Hospital by Upstate Medical University

Journeys by Heart InspIrIng storIes from the staff of Upstate UnIversIty hospItal As told to Bimenyimana (Kofi) Onsime The Rev. Terry Culbertson and The Rev. Jane Dasher, editors

Department of Spiritual Care $5.00 ISBN 978-0-9821829-5-6

16.170 478 0816 morrowsk

50500>

750 East Adams Street Syracuse, NY 13210 www.upstate.edu/ uh/spiritualcare 9 780982 182956

Journeys by Heart INSPIRING STORIES FROM THE STAFF OF UPSTATE UNIVERSITY HOSPITAL As told to Bimenyimana (Kofi) Onsime Editors The Rev. Terry Ruth Culbertson MDiv, BCC, CT Department of Spiritual Care Manager Clinical Pastoral Education Supervisor The Rev. Jane Dasher MDiv, MS, BCC Pediatric Chaplain Upstate University Hospital/ SUNY Upstate Medical University Syracuse, New York

We invite your comments, suggestions, and of course, stories in response to Journeys of the Heart. Contributions are gratefully accepted so that we can continue to distribute this booklet free of charge. The Center for Spiritual Care, Upstate Medical University, is located off the first floor lobby at Upstate University Hospital, 750 East Adams Street, Syracuse, NY 13210 (315.464.4687) or visit us on the web at www.upstate.edu/uh/spiritualcare. ÂŠ 2016. All rights reserved.

Published, with permission of the subjects of the stories, by SUNY Upstate Medical University, Syracuse, New York www.upstate.edu

Ta b l e o f C o n t e n t s Forward by Jane Dasher

My Long Journey by Bimenyimana (Kofi) Onsime

Not Alone by Lyndzie King

Lonely, But Not Alone by Maria Paoff

Just Keep Going by Theodore Spadotto

A Tribute to My Father by Matthew Capogreco

Seeing the Best at the Worst by Fahd Ali

A Commitment to Care by Barbara Baranella

Keep on the Sunny Side by Joseph Smythe

Little Things Make a Difference by Nellie Diez

Healing Words by Ruth McKay

Little Tree by Ruth McKay

By the Grace of God by Eijke Innocent Onyenagubo

Work-Life Balance by Bonnie Miner

Faith Makes the Difference by Julius Gene Latorre

Thankful Even for the Tough Times by Iris Logan

In Rehabilitation and In Death by Toni Herr

Caring for All by Tanya Hicks

Patience by Rob Bundy

One Letter Made the Difference by Debra Hayes

Miracles Do Happen by Kerryanna Kershner

There Is a Child by Molly McCoy

Acknowledgements

Your Story

Forward By The Reverend Jane Dasher, Pediatric Chaplain

rady. All someone has to say is the word “Grady” and stories begin to race through my heart and mind. All of us who worked at Grady Memorial Hospital — which was a 1,000-bed, level-one trauma center in inner-city Atlanta when I worked there — have our Grady stories. The stories have stayed with me almost 25 years later, and when I meet up with someone who worked there, we share our “Grady stories.”

Our stories may be about experiences with survivors of the Atlanta Olympic Park bombing, victims of airplane crashes, or the addicted mother waiting to give birth. But one story comes to mind each Christmas Eve. A father ran a red light and hit a city bus. His five-year-old child died. Her three-year-old sister lived. The father was handcuffed to the hospital bed when he learned his five-year-old died in the car crash. He wept. His wife wept. We all wept. And the little sister who survived pointed out she had sissy’s blood on her clothes. It was horrible. It was Christmas Eve, a time to be full of joy as the family was on its way to open presents. Instead, a child was dead and a father arrested. His heart was already imprisoned by her death. We prayed. We wept. They shared memories. We were silent. We tried to find some comfort but the sting of death was all around us. And then the family left. Mother and child to their home. The father to jail. And me to the next call of the pager. I remember this family each Christmas Eve. I wonder what

Forward

happened to the three-year-old. How did she grow up without her sister and with her father in jail? She would be about 28 now. How did this tragedy impact her? Is her work connected to this tragedy? Does she have children? Where are the father and mother? I know that, wherever they are, their hearts ache every day. As you can see, I have questions. I donâ&#x20AC;&#x2122;t wonder why this accident happened as much as I wonder what happened to us afterward. That night, Christmas carols welcomed a little one but another little one was taken. I was present at a terrible thing, but out of terrible things can be woven wonderful things. I was present in a sacred moment of tragedy and grief with that family. Not everyone can do that. I honor this little girl by remembering her. She reminds me of the fragility of life and how wonderful and terrible it can be. Life is sacred and mysterious. That is enough to keep me going 25 years after this little girlâ&#x20AC;&#x2122;s death. Everyone has a story, and this book is comprised of the stories of 22 people. Whether we work at Grady, Upstate or some other place, we all have stories of people who keep us doing what we do. We have all struggled, all had good moments. The stories presented here are our sacred stories. Thanks to all who allowed themselves to be vulnerable by sharing their stories for this book. You may remember your own stories. Bimemyimana (Kofi) Onesime interviewed staff members for this book. Kofi was a Synergy Mercyworks intern in the Spiritual Care Department at Upstate University Hospital during the summer of 2015. His story is a powerful one of struggle, hope, determination and work.

My Long Journey

My Long Journey By Bimenyimana (Kofi) Onesime

About Kofi My name is Bimenyimana Onesime, and I am 21 years old. I go by the name Kofi. I was born in the Democratic Republic of the Congo in 1994, and I live in Syracuse, NY. I graduated from Syracuse’s Nottingham High School in 2013, and now I am a junior in college, majoring in Information Technology (IT) at SUNY Canton. Kofi’s Story If my family hadn’t fled from the war in the DR Congo, we would not have survived. When I was two years old, we had no help and were forced to leave everything behind. In 1996, we arrived in a refugee camp in Tanzania with no shelter or belongings. According to my father, when we fled from DR Congo to Tanzania, I was dehydrated and needed to be hydrated again. My father made a choice and made me drink water full of mud to survive. My father did not have hope but I made it to the camp alive. Once we settled in the refugee camp, life was really difficult. The police were brutal. They hated us because we came from a different nation. We were not allowed to leave under any circumstances and if anyone attempted to leave the camp and got caught, there was a chance that individual would be sent to jail. Basically, we were quarantined. We started growing crops in that camp to survive. The United Nations was one of the most helpful organizations

Bimenyimana (Kofi) Onesime

that supported us because they provided us with food, tents and other basic needs. There was no electricity, and we walked miles and miles fetching wood. The education was really poor. During primary school, teachers disciplined students by beating them and doing whatever they found necessary to ensure rules were followed. In 2006, after 10 years of struggle in the camp, we were told that we would immigrate to the United States. This moment changed my life. I could not believe how someone like me was chosen to come to the United States of America. I was sad because I did not want to leave my friends, but I was excited because it was a new beginning for me. I knew I was going to meet new friends, and learn a new language and a new culture. Arriving in the United States (Syracuse, NY) in 2007 was quite an experience for me. The first thing I experienced was the cold weather, but I adjusted to it in a short time. Also, when I arrived in the United States, I could barely speak English or understand any English words. I was only 13 years old, but I did not give up. I began to read books daily and teach myself how to read and write in English. What kept me going was the fact that I knew all the struggles that I went through as a child, and I didnâ&#x20AC;&#x2122;t want to waste this new opportunity that was given to me. When I began high school in 2009, I faced many challenges. I had to endure insults from fellow students because I was new to this country and did not speak enough English. I would think of what I had to do to be successful and graduate from high school. I began to stay after school for more help. I will never forget when I passed my English Regents exam during my junior year. From that moment, I could feel success because I knew I was going to graduate. Finally, in June 2013, I graduated from high school and became the first person in my family to attend college. I thank all my teachers who spent countless hours with me in order for me

My Long Journey

to graduate. If it were not for their help, I would not be where I am today. I could not believe that the kid who once struggled with English was going to college. I started college in fall 2013 at SUNY Canton without knowing what was ahead of me. I faced even bigger responsibilities. It became evident that college was totally different from high school. I was on my own and had to make my own decisions. I could not believe that someone like me â&#x20AC;&#x201D; who grew up in a camp, had no chance of higher education and struggled with the English language â&#x20AC;&#x201D; was on his way to being successful. I am one of the luckiest people because I got this opportunity of higher education. There are many people who fought for this opportunity and never received it. I will soon graduate from college. My goal after graduation is to work in information technology at Upstate Medical University. I have experienced lots of things but one that changed my life was working with Spiritual Care Department at Upstate Medical University. They treated me like a family member regardless of who I was and where I came from. Spending time with the patients and sharing stories with them touched my heart. During that time, I discovered a lot about people and myself. I thank the Spiritual Care Department for giving me this amazing opportunity. I learned more than I could ever imagine. What I discovered gave me hope for the future. I will always cherish this experience. Every time I look back at the struggles I experienced as a child, I feel blessed for the opportunities for my family and me. Not everyone gets these opportunities. My goal is to give back to the community that helped me since I have been living in this country. It would be my appreciation for all the time and resources used to help me become the person I am today.

Lyndzie King

Not Alone By Lyndzie King

About Lyndzie Lyndzie was raised in Syracuse, and attended LeMoyne College. She works in housekeeping at Upstate University Hospital. Lyndzie’s Story An experience that stands out for me happened when I was working on 9E. I was cleaning a patient’s room, and the patient, who was blind, had his call light on. I went to another room but the staff was busy so I stopped back to answer his call light. I asked him if there anything I could do for him. He asked me if I could get his cell phone and charger. I gave them to him, and he had a couple other tasks that he wanted me to do before I left. After I got the other items for him, he grabbed my hand and holding on to it he said, “Thank you very much.” I was touched that he appreciated what I had done for him. Recently there was a terminally ill patient who told me that she was struggling. Every time I cleaned her room she would talk with me about her struggles. I would stop in from time to time to check on her. She would say to me, “Are you here just to hang out and chat?” Every time I visited I would listen to her story, give her feedback, and tell her everything was going to be alright.

Lyndzie King

What Helps Me Sometimes people come to work and have struggles going on outside of work. You have to put them away when you enter the door at work. When you are dealing with personal stuff, coming to work and having people to talk to helps. That lifts me up and keeps me going. My faith in God inspires me to keep going and I pray, knowing that everything will be okay. I stay positive and put my best foot forward. A Word of Encouragement Being kind to others is important and simple. Look into the other person’s eyes and just say “hello.” From my experience working at the hospital, I have noticed that small gestures go a long way. Do the right things, try your best and eventually you come out of whatever struggles you are going through.

Not Alone

M a r i a T. P a o f f

Lonely, But Not Alone By Maria T. Paoff

About Maria Maria’s mother was born in Guyana and grew up in Trinidad. Her special devotion was to pray to Our Lady of Fatima. She met Maria’s father overseas during the war. They married in South America, and he brought his new bride to the United States where Maria was born. After receiving a BS/BA degree from Columbia College, Maria went into the field of medical/business management. She joined University Internists in August 2012 with more than 20 years of experience. Maria was also a hospice specialist, who took care of patients with HIV/AIDS and cancer. Now Maria is also a Reiki master and volunteer with Spiritual Care. Maria’s Story I was at the hospital a couple months ago, and there was a gentleman who didn’t believe in God or in much of anything. However, he knew a little about Reiki. As I went in to visit he said, “Can we just talk a little?” He confessed that he had a lot of time to think during his illness and realized that he hadn’t been a very nice person in his life. We talked about life in general and his family, and he asked me questions about my background. Toward the end of our time together, I asked if he might like a few

M a r i a T. P a o f f

minutes of Reiki as well. He grew really calm after I gave him some Reiki and said, “I have been so miserable and everything I’ve done is wrong. I really miss my families. I think I need to let them know that I’m here.” He had been so down when we began, against everything, but by the end of our time together he was smiling. He said by talking together he realized that he needed to contact his family because he was lonely and needed them. It was a special moment for me. A challenging time Twelve years ago, I was taking care of a patient with AIDS. His family turned against him, and he was lonely and sad. Years ago, people didn’t understand AIDS. It was a struggle to try to make his family understand and accept what was happening to him. It was very hard for me because I believe we need to help each other and that everybody is basically good. But his family blamed the man for what he was doing to them. That was a struggle for me. I felt my heart breaking. A word of encouragement Many of us are caregivers. It is important to realize that you do not have to have a lot of experience in the medical field to work with people. That’s not what patients are looking for, unless you are a doctor. Patients need someone who is not going to judge them. They want you to tell them a joke; to sit with them and share stories. They just want a few good moments. They want somebody to touching their hands and make eye contact. Just be there for the patient.

Just Keep Going By Theodore J. Spadotto

About Ted Ted worked in the Physical Plant Paint Shop for 28 years. He has been married thirty years to Carmelina, “a wonderful woman,” and the couple has two daughters. He retired at the end of 2015, having beautified numerous places throughout Upstate. Ted has seen lots of things in his life. He was drafted and served in the Vietnam War. He has had several important family members die – his twin brother, his baby sister and his grandma. Ted’s Story My daughter had her foot amputated after a long illness. I tried to encourage her by reminding her that many people face challenges in their lives, and not to give up. People in the hospital, including priests, came to talk to us, and Spiritual Care did a lot to help and cheer. So, my daughter kept going. My younger sister had cancer and fought it for five years. She knew that she was going to die; however, she just kept up a good spirit and faced death with courage and humor. I bought her a huge teddy bear to keep her company. The priest came to talk to her and gave us hope.

There are a lot of things that people need to keep going, not only physically but mentally and spiritually. Everybody becomes sad at some time. My belief is that we need to keep going and not give up. Life is a struggle for most of us, but we can support one another. Tedâ&#x20AC;&#x2122;s inspiration I came from a family who had lot of money. I have pride in myself and my family and have always earned my way in life and never asked for anything. The way you are raised and how you were taught is a big influence on how you live your life. A word of encouragement I tell people to try their best and donâ&#x20AC;&#x2122;t give up hope. Use your money wisely and make good decisions in your life. Believe in people, because most people are good. When you treat people fairly, they will treat you fairly. Be kind. What goes around comes around. Treat people the way you want to be treated.

Just Keep Going

A Tribute to my Father By Mathew Capogreco

About Matt Matt was born and raised in Syracuse. He moved away for college and returned about 10 years ago. Matt is a cancer survivor. He had six tumors removed between 2001 and 2008. His father had the same cancer. His sister and brother have the gene that predisposes them to the same disease. Matt has been a patient, a volunteer and is now the program and events coordinator at Upstate’s Cancer Center. Matt’s Story I remember being in the recovery room following my brain tumor surgery. I was breathing on my own, and in and out of consciousness with sedation. There was nobody around me when I started waking up. I suddenly stopped breathing – I could not remember how. I remember telling myself over and over, “you know how to breathe,” but in my head nothing was happening. I felt pressure in my chest and told myself “you have to get through this.” With great concentration and singular focus, I was able to breathe, the one act that keeps us alive and the one we do not think about. I remember that moment vividly — it changed my life. To be able to do something so small, yet so important — I realized that I was a survivor. I needed to fight through every part of this experience in order to become a better person.

Mathew Capogreco

A time of challenge My father had the same carotid tumors that I had and we both had heart tumors. Dad’s heart tumor was behind his heart, close to his lungs and over 12 centimeters. Surgeons resected it down to two centimeters, but it grew to six centimeters in five years. My father went to several places in the country to talk about what to do next. He needed a second surgery but nobody would touch him. Surgery was too difficult and there would be complications. Finally, Dad found a physician at another cancer center who was willing to do the surgery and thought that there could be a successful outcome. Dad went out of state for the surgery. The doctors removed the tumor but Dad’s heart just could not make it . They hand-pumped his heart for several hours to try to keep him alive but it did not work. Dad passed away and I wasn’t there. A word of encouragement My father had a great influence on me. He was an unwed father who fought for custody of his son and won — not common in New York state at the time. He was always there for me. Three weeks after his death, I was scheduled to be at an international symposium on the disease we share. I was contemplating not going and trying to find an answer through a wake of emotions. My wife asked me, “Do you think your Dad would want you to go?” So here I was — deeply grieving, and saw that I could take two different paths, just like when I was struggling to breathe after surgery. It was difficult to be in the meeting about our disease after just losing my father. At that meeting, the event organizer approached me and three other patients and said, “There is

A Tr i b u t e t o M y F a t h e r

no patient advocacy group for your disease and I think you can do something about that.” I could not sleep that night. I got up at 2 a.m. and wrote my vision for a patient advocacy organization and all that we needed to start. The next day I met with those patients, compared notes and came up with the structure of our new adventure. With the support of several other non-profit and medical organizations, we created Pheo Para Troopers, the first international non-profit organization for patients with pheochromocytoma and paraganglioma. Today, we are in over 70 countries, have hosted international conferences, and lived our mission dedicated to education, advocacy, and awareness “For the Patients, By the Patients”. I have struggled and been inspired over the years through my battle and the battle of my family. My personal motto comes from a Japanese proverb loosely translated as “Seven times down, eight times up.” I will continue to follow that. I remember what cancer has taken away, and remember what cancer has given me.

Fahd Ali

Seeing the Best in the Worst By Fahd Ali

About Fahd Born in the Bronx in 1976, Fahd attended SUNY Downstate Medical Center in the BA/MD program, receiving his medical degree in 2001. He completed a fellowship in trauma and critical care at New York Medical College, an internship and residency in general surgery at Beth Israel Deaconess Medical Center/Harvard Medical School, and another residency at York Hospital Penn State Affiliate, where he was chief resident. He was an assistant professor of both surgery and anesthesiology at Upstate Medical University, as well as medical director of Live and Let Live, a community-based antiviolence program until spring 2016. Fahdâ&#x20AC;&#x2122;s story I see the best in humanity, even in the worst situations. Several years ago, there was a teenage gang member in the emergency room. He was a drug dealer who had been shot. People said that it was his lifestyle that made this happen, and some said he was evil. I realized that this young man may have done wrong, but he was still loved by someone, and to his Mom, he was everything. She lost everything when he died. Although society may believe he got what he deserved, at that moment I saw things differently because he was loved. It is not just the person who is sick or wounded who suffers, it is their loved ones as well.

Fahd Ali

It is in growing in my ability to understand what other people go through that helps me listen and heal. I recall a time when another patient saw various doctors for over a year with multiple complaints but could not get a diagnosis. Finally, someone did a thorough work up on her, and found she has cancer. I was able to operate and remove the cancer. A word of encouragement My faith and belief is that all humanity is good. And, no matter how hard a day I have had, I can go home to my wife, parents and children. This gets me through the hardest times. It helps to know that I am trying to do my best for anyone in need. There are other jobs that pay more, but few in which you go home knowing you did something. It does not matter if you are the most talented surgeon in the world or someone cleaning up the operating room â&#x20AC;&#x201D; what matters is that you are helping others.

A Commitment to Care By Barbara Baranella

About Barb Barb is a per diem registered nurse on 4B, the inpatient psychiatry unit at Upstate University Hospitalâ&#x20AC;&#x2122;s downtown campus. Barbâ&#x20AC;&#x2122;s story Early in her career as an RN, Barb saw the need for compassionate care for people suffering from mental illness. She committed herself to being their advocate, caregiver and support by devoting her career as an RN to working with this population. Challenges Our 4B patients are generally very sick. Society is not kind to those with mental illness, and tends to shun and ostracize these persons. It can be hard to know that our young patients will have to struggle with the stigma and difficult issues for the rest of their lives without a lot of resources and support that other illnesses receive. For those of us who work with this population, we have a deep understanding of their suffering, as there is very little hope or future for many of our patients.

Barbara Baranella

A word of encouragement I am the unofficial mom of 4B. I bring in food and treats to share in our back room during breaks. It makes such a difference to support one another as staff, to break bread together, and care for one another so we can continue to do this challenging work. And for our psychiatric patients, we give whatever can bring â&#x20AC;&#x201D; a spark, smile or glimmer of hope. It is one day at a time.

Keep on the Sunny Side by Joseph Smythe

About Joseph Joseph is a staff chaplain at Upstate Medical University, ministering at both campuses. Originally from Jamaica, he has lived in the United States since 1998. Joseph came to Syracuse in 2007 to join his wife, who was working on her doctorate at Syracuse University. He became a board certified chaplain with the Association for Professional Chaplains in 2009. Joseph is ordained in the Church of God (Anderson, Indiana) and pastor of a church in Sodus, New York. Joseph’s story I was called to visit a person who had cancer. He had been told he had six months to live. During our visit, the patient told me about his struggle to forgive a pastor for certain things he felt the man had done wrong. In the course of our conversation, he asked me, “Do you think that God will forgive me for how I feel?” I was able to assure him through the promises of God that God does forgive. Then he said to me, “I have six months to live. Thank you for telling me God forgives me. I can now go on my way and take care of my children, my daughter, and my family and be ready when my time comes to die.”

Joseph Smythe

I felt excited that I was able to speak to this man and have him embrace Godâ&#x20AC;&#x2122;s forgiveness for himself. A challenging time I was in the Pediatric Intensive Care Unit, having been asked to see a patient. There was a six-month-old baby progressing towards brain death related to abuse from a family member. I struggled with this terrible situation a lot and I asked myself, â&#x20AC;&#x153;Why should this child die?â&#x20AC;? I watched his parent go through that day struggling, being angry at me and saying that God was taking this child from them. It kept me going to know that God was present in the midst of all their suffering, to share in their grief and support them. At the end of the day, the child died. To my surprise, I was called to be there and offer comfort to them in their time of sorrow. A word of inspiration Start your day in a positive mood, no matter what the situation. Live into that difficult situation. You can both survive and help others in the process.

Little Things Make a Difference by Nellie Diez

About Nellie Nellie is the nursing manager of 10E, inpatient oncology, at Upstate University Hospital. She graduated from nursing school in 1999. At 13, Nellie was diagnosed with cancer. Even as a little girl, Nellie always wanted to become a nurse and work with cancer patients. Nellieâ&#x20AC;&#x2122;s story I am inspired daily by the experience of working in oncology unit. I have the honor of taking care of people in very vulnerable conditions. Surprisingly, we do lots of weddings on our unit, and I have been the wedding planner for a number of patients at the end of their lives. In June, we had a patient with end-stage disease who was preparing to be discharged home with hospice. She and her fiancĂŠ had wanted to get married for quite a while. We arranged to get a town clerk to come to the hospital to issue the marriage license. The next day we held their wedding at the treehouse chapel on the twelfth floor â&#x20AC;&#x201C; which made it easy for the couple. The staff swung into action and got very involved in making this a special occasion. We helped the bride get dressed and she had friends who came and did her hair. Food service made a beautiful cake with strawberries and chocolate. The oncologist who had been taking care of this patient for 30 years brought her residents and medical

Nellie Diaz

students. The case manager brought a bouquet of flowers for the bride to hold. A friend came and sang as she was wheeled into the chapel. One of our chaplains officiated and pronounced the couple â&#x20AC;&#x153;husband and wife.â&#x20AC;? We were all crying tears of joy and sadness. Our floor holds other celebrations as well â&#x20AC;&#x201C; from birthdays to graduation parties. We try to make these moment as memorable as possible. These are the things that inspire me in caring for my patients. Times of challenge I struggle when a patient suffers and I see the family obviously upset and sad for their loved one. I struggle because of the nature of the population we have here. You see people every couple of weeks and sometimes they take a turn for the worst. Going through cancer treatment is challenging. It is at these times when one can preserve their dignity and self-respect. I love what I do, and focus on helping the patients. It is an honor to take care of them and their families. I make a difference and that keeps me going. A word of inspiration I draw inspiration from the little things that happen on the floor every day. I encourage everyone to value those moments and make them memories.

Healing Words By Ruth McKay

About Ruth I have been a marriage and family therapist for over 30 years. During that time I have occasionally written poems as a kind of self-supervision, a way to process and integrate an intense experience with a client. In writing poetry we communicate as much with ourselves as with any potential reader. This is a poem I wrote from my work as medical family therapist at Upstate’s Center for Children’s Cancer and Blood Disorders. There, I interact with many families throughout their journeys of their children’s life-threatening illnesses, sometimes including death and bereavement. This poem began with the tree. The little tree, visible from the stark white hallway of the newly opened Cancer Center, caught my attention whenever I passed it. I began looking at it more deliberately to understand what was catching me, and became more aware of my own experience of walking in the hallway. I wasn’t so much stepping back and thinking about it as exploring the impact on me of the tree and the long hallway. My experience soon broadened to my reflecting on the variety of experiences of the staff, patients and their parents. The image of the tree came to me as I sat in a therapeutic session with a bereaved father. It became a metaphor for being fully present to his grief. I had to be

Ruth McKay

fully present not only with the depth, but also with the “unfixableness” of his pain. The ability and decision to be present to my own experience led to deepened empathy for families going through the repeated admissions of their children and adolescents for chemotherapy, and also to recognizing and valuing the significance in healing of being fully present to another’s experience and our experience of being with them — what my long-time teacher, John Welwood, calls “unconditional presence.” I attended a poetry therapy workshop with certified poetry therapist, poet and author, John Fox. When asked to present to Syracuse University graduate students studying the therapeutic process with trauma survivors, I presented on poetry and poem-making using the model that John Fox uses in his workshops. We read poems together, many dealing with medical trauma and loss, and the students (and professor) each wrote a poem themselves and read to each other in dyads, some sharing with the whole class. I was touched with the depth of their writing and felt reassurance as an older therapist that the profession of marriage and family therapy is in the hands of people who are willing to develop their capacity to be present to the full range of human experience that will be shared with them in the years to come. Of course, they also learned a strategy, that of poem-making, that can hold their own experiences for them as a kind of self-supervision. I also had the opportunity to share a brief experience with the child psychiatry fellows, and to admire the variety of minds and language that we each bring to our therapeutic work, knowing that it is only by being genuinely ourselves that we can truly contribute to the healing of another.

H e a l i n g Wo r d s

Little Tree by Ruth McKay

Winter Beloved gray-brown, red-mottled tree, receiving winter in outstretched limbs, like a child celebrating on a snow-day turned sunny; grateful for the lightly falling snowflakes, that dance in the vast blue sky; small and protected in your corner of the healing garden, you stand above us in a concrete planter visible through a tall window, as we pass by in the stark white corridor between Hospital and Cancer Center. Young as you are, as I guess by your smallness, you have not known many seasons. In this you are like the children who pass by: some newly scared and silent, some accustomed to the journey, in parentsâ&#x20AC;&#x2122; arms or wheelchairs, or skipping in sparkly boots on their way to hospital admissions, their counts high enough for the next round of chemo. Today I yearn for your openness, little child-like tree. I try to find roots beneath my quickly beating heart, as I talk with the father of a forever-child, near the first anniversary of his dear boyâ&#x20AC;&#x2122;s death. He looks away from my gaze; seeing an inward scene, he talks about the snow fort he built for the boy and his brother

L i t t l e Tr e e

that melted in spring last year. I notice the lone tear pooling in my lower eyelid. My heart settles as I find you, little tree friend, planted inside me, rooting my presence, holding out your arms-- no matter what-for snow, for him, for me, as we sit together with his aching heart before he leaves the Cancer Center, once again, without his son. Summer The father talks of deer-proof fencing around his garden where spring-planted seeds are growing into pumpkins. He prepares for the second autumn without his son, looks ahead to painting Jack-o-lanterns with hospitalized children. He talks of the simple, playful honoring of a well-loved child. In the healing garden the little tree has deepened into lush bunches of maroon leaves on thickened branches. It has found its gift of offering shade to lunch-time seekers of open skies and summer breezes. Even the hallway, once so stark, blooms with paintings of subtle landscapes and bright whimsy. Passing from the Cancer Center to the Hospital I look to the growing little tree And sense the scent of fertile soil nurturing my rooted heart.

By the Grace of God By Ejike Innocent Onyenagubo

About Innocent Father Innocent is a native of Nigeria, and priest in the Roman Catholic Diocese of Ahiara. He came to Syracuse in 1999 to serve as parochial vicar at Immaculate Heart of Mary parish in Liverpool, New York. While there, he began his clinical pastoral education training, and he joined the Department of Spiritual Care at Upstate in 2006 as part-time priest chaplain. He became the hospitalâ&#x20AC;&#x2122;s first full-time priest chaplain in 2008, and eventually achieved his board certification as a chaplain in the National Association of Catholic Chaplains. His story As a priest, I am constantly requested to offer anointing for both Catholics and non-Catholics. Through many thousands of visits, I have learned more things about my faith. Family members and patients appreciate seeing the priest come to visit, offer prayers and ask God for healing. Many Catholics call for the Sacrament of the Sick, especially at the end of life. Some people have not been to

By the Grace of God

confession for quite a while. They come here with sickness and want to reconcile with God and humanity and accept this sacrament of reconciliation joyfully. It is my privilege as the priest chaplain at our hospital to bring anointing, to pray for healing and offer blessings. It is inspiring that, even from as far away as California, family members call for the priest to visit their loved ones and anoint them. What challenges him It is by the grace of God that keeps me going in this ministry. I struggle many times in the hospital. It is not an easy ministry because one has to cry with those who are crying and laugh with those who are laughing. Prayer keeps me going because I know that there is a Power greater than I that will not let me down. God is my strength. A word of encouragement I believe my service does not end with a patient here. My faith is that I am serving God. I encourage all the hospital staff to know that our mission is about the patient and it goes beyond what we can touch and see. We serve our living God through ministering to the sick, the dying and the dead. We use every bit of our breath to offer spiritual care. Our strength comes from above. It is not the paycheck, it is service to God and humanity. All the chaplains are happy with what they offer in this hospital.

Work-Life Balance By Bonnie Miner

About Bonnie Bonnie is a Clinical Nurse Specialist and the Pediatric Patient Safety Officer. She grew up in Youngstown, NY. She began her nursing career in Tucson, Arizona and has been at Upstate University Hospital for 26 years. She began as a pediatric intensive care nurse and then worked as a pediatric nurse educator prior to her current position. Bonnieâ&#x20AC;&#x2122;s Story I worked in pediatric intensive care for a number of years and took care of little babies to big kids. Several years ago, I had a baby that I was taking care of. Two other nurses and I had been taking care of this baby during hospitalization. The baby was dying. Over the course of the day, as the three of us talked, we each found great comfort in our beliefs that the patient was already with God. We believed that the soul of the baby was no longer in that body, that it was just a vessel. To feel that connection among the three of us was powerful and comforting. Other staff nurses were surprised that we became okay with the baby dying because we were very attached to this baby and family. I see each child as a gift from God. They are only in our care for a short time while they are in the hospital, but the child is always with God. It is this belief that helped me when this baby was dying. My faith, and the faith of the

Wo r k - L i f e B a l a n c e

other nurses, gave me comfort and hope. I was able to comfort this family that I, and others, had become very close to during the baby’s time in the hospital. Challenging Time For years, work consumed almost all of my time even when not physically in the hospital. Over this last year, I have worked on finding a healthy balance between work and life outside of work. I told myself, “I’ve gotta do this,” because I value who I am and my relationships outside of work. Now, I differentiate between my life at work and my life at home. I have learned more about myself as a person, and have been able to find balance in work, in relationships with people, and in my relationship with God. As a nurse, I have always cared for people, and I took little time to care for myself and found it difficult to let others care for me. Now, I have found a balance between giving care and being cared for. Having a healthy balance in work, in relationships and with God is what keeps me going.

Faith Makes the Difference By Julius Gene S. Latorre

About Gene Geneâ&#x20AC;&#x2122;s childhood was spent in a rural area on a farm in the Philippines. His family were teachers, and his classmates were the sons and daughters of other farmers. Geneâ&#x20AC;&#x2122;s first exposure to the city was in secondary school. After that, he got interested in science which led him to become a doctor. He was the first person in the family to pursue a medical career. His brothers, sister and cousin followed, and now there are six family members in the medical professions. Gene obtained his medical degree at the University of the East-Ramon Magsaysay Memorial Medical Center before coming to the United States to pursue additional training in neurology. Then, he went to Boston for specialty training in stroke and neurocritical care. Gene returned to Upstate Medical University in 2007 as a faculty member in the Department of Neurology. Currently Gene is medical director of the Upstate Comprehensive Stroke Center and neurology-stroke service. Inspiring moments Most of my patients are very sick. Every now and then I attend to patients who have been married for 60 or 70 years, couples who have lived almost their entire lives together. There was a gentleman in his 90s whose 85-yearold wife was my patient. She developed dementia, could

Faith Makes a Difference

Julius Gene S. Latorre

not take care of herself, and eventually her husband had to put her in nursing home. Nonetheless, he would visit her daily, help her with breakfast and they would take a walk together. It was as if they were still living together except he would go back home at night and his wife would stay in the nursing home. For five years, he was there daily and saw her wifeâ&#x20AC;&#x2122;s memory deteriorate to the point that she would have difficulty recognizing people, even her husband. I was so impressed with the dedication of this gentleman and his devotion to his wife. He shared with me was that he did not mind doing this, and he continued to come back every day, anticipating the times when his wife could recognize him. He celebrated and cherished those brief moments of lucidity, knowing that it may not be long before he lost her completely. Struggling moments Many patients that I see are very ill with brain injuries. It is always a struggle to answer family members who ask if we should continue aggressive medical care for the patient or go to comfort care, knowing the final anticipated outcome. Every night I pray that the Lord will guide me and tell me the right words to say to family members and patients who are looking for guidance. That is all I can hope for. Sharing If you want to stay in this profession, you need a lot of faith. You have to realize that you cannot do it all by yourself. You have to get energy and peace from somewhere else.

Thankful Even for the Tough Times By Iris Logan

About Iris Iris works in Environmental Services at Upstate University Hospital. Her mother passed away from cancer and, in May 2015, her mother’s brother passed away due to problems with his spine and liver disease. Iris has a sister who is fighting a life-limiting illness. She has a daughter who struggles with mental health, who disappears for days with no contact. Once, her daughter was found by a state trooper in Albany. Iris’ story While I was working on the inpatient oncology floor, my mom was battling cancer. I got close to lots of families on my floor because we shared the same situation. There was a female patient I got really close to and every time she came back to the hospital, she asked for me. This made me feel good. It also gave me courage to talk with other patients on that floor. It inspired me and helped me to hear what they were going through, knowing that this was what I was facing in my family. The patients taught me a lot so I could care for my mother and sister and not be afraid. Because of the patients’ courage, I was able to stay strong in my faith and keep up my courage when my mother could no longer get out of bed. I appreciate the inpatient oncology floor and everything that being on that unit taught me.

Iris Logan

A word of encouragement Every night I pray for the good Lordâ&#x20AC;&#x2122;s will to be done. He gives me strength. His word, His guidance, His spirit, and His will are with me all the time. It gives me strength to feel that God has helped me. I do not know how I would have made it through everything or found the ability to help my family. If I had not gone through these experiences, I would not be able to help somebody else in need. So I am thankful even for the tough times and I appreciate that they have given me strength. Be strong and pray because God will get you through anything. Just trust the good Lord. He will take you through it. If there is somebody you need to talk to, I am good listener. And if I can help, I will.

In Rehabilitation and In Death By Toni Heer

About Toni For 24 years, Toni has been a registered nurse, working in home care, intensive care, school-based care for children with developmental and medical disabilities, and primary care pediatrics, and with children and adults with cystic fibrosis. At the time of this interview, Toni was caring for patients who needed rehabilitation to gain as much functional independence as possible following acute health events. She values the opportunity to assist patients and their families through all phases of health, illness, and the happiness and sadness associated with death and dying. Recently, Toni was appointed nursing case manager of the Intensive Transitions Team. Toni has a masterâ&#x20AC;&#x2122;s degree and is a clinical nurse specialist. Her best friend is her husband. They are crop farmers. In her free time, Toni enjoys being with her family which includes her husband, 22-year-old son and horses, donkeys, goats, dogs and cats. Toniâ&#x20AC;&#x2122;s Story The focus of the hospitalâ&#x20AC;&#x2122;s rehabilitation unit is to help patients develop functional ability to compensate for deficits that cannot be medically reversed or restored and to educate patients and families on ways to adapt to such deficits.

To n i H e e r

The nursing and medical staff worked tirelessly with a middle-aged man who had suffered a severe stroke. Great attention was paid to delivering personal care with compassion and impeccable detail. Despite all efforts, this man’s medical and functional ability did not return to a point where he could return home with his family. I was fortunate to work closely with his wife. The entire team on the rehabilitation unit supported the patient and his family’s wish that he remain on our unit for Hospice services during his final phase of life. The patient remained in the loving care of our staff and his family was granted peace knowing that he was able to stay and be cared for by people who knew him. The experience was unusual as it did not reflect “rehabilitative care.” Instead, we granted peace and comfort through palliative care and were significant in facilitating the family’s wishes that their loved one could die in peace. A Word of Encouragement There is no better education than the experiences we share; whether in health care or in personal life. I value all that I have shared and learned from the patients and families I have served.

In Rehabilitation and In Death

Caring for All By Tanya Hicks

About Tanya Tanya grew up on Long Island, New York, and attended college in Louisiana. She moved to Syracuse, New York for nursing school, met her husband there and never left. Tanya is the first African American case manager at the hospital. She follows patients on the surgical extensive care and the medical extensive care units. Her caseload is 20 to 30 patients, all of whom are very sick. Some of her patients have family and financial issues and Tanya works to get them ready to leave the hospital. Tanyaâ&#x20AC;&#x2122;s Story Courage is big on the 8th floor surgical extensive care unit. Our staff are the most highly trained nurses in the hospital and work very well under pressure. We get patients who have been in car and motorcycle accidents, and patients who have been shot. Sometimes our nurses have to give families really harsh news. Our nurses gets rave reviews from the families because they really take care of the families. Thatâ&#x20AC;&#x2122;s courageous because they just do not see the patients, they see families. In the last few months, we had several patients who were young men injured in either ski, motorcycle or car accidents. We had a young man we were trying to move

Ta n y a H i c k s

to another hospital. The nurses and I worked with his mom, and the patient progressed to another lower level of care. His mom continued to come to us advice and help, and to let us know how he was doing because we had such an impact on her family. Nurses not only takes care of patients, they take care of the families because they need so much support. A lot of times we do not have good news, but we tell families the truth. The staff is courageous because they are able to give the difficult news and help the patients and families as well. Challenging Time Sometimes we struggle with families and patients who we feel are not realistic. For example, many people have insurance but do not know what their insurance pays for. They get to the hospital and it is a crisis situation. People like me have to tell them, “yes, your insurance pays for this or “no, your insurance doesn’t pay for that.” It is a struggle because sometimes the patient or family does not believe us. They may want the patient to go to a hospital close to home, but I may have to send the patient to New York City or Albany to get the care that is needed. It is a struggle because they see that I am trying to send their family members away and they may not have the means to be go and help care for their loved ones. It is a struggle, but when we show the gains that can be made and that it is the best facility for the patient, they go and come back thankful. It is a struggle to educate people that their insurance may not pay for things that they need and that there are not local resources and their loved ones have to go to another area for the best care. A Word of Encouragement I think the Spiritual Care Department is the key to our floor because families need so much support when they have loved ones in the hospital. It is crucial that spiritual care is here to talk to patients and families and I encourage other staff to utilize this support.

Patience By Rob K. Bundy

About Rob Rob was raised in Colorado as an Episcopalian. Since age 30, he has been a Buddhist. Rob was a theater director until age 50, when he made a big shift in his life. He decided that the theater was not enough and that he needed to serve people more directly. From age 50 to 58 he became much more serious about his faith practice. He changed his life to better follow the teachings and morality of Buddha. Rob lived in New York City, and part of his chaplaincy training was there. He moved to Syracuse with his partner, and completed additional chaplaincy training at Upstate Medical University. Today, Rob is an assistant chaplain in the Department of Spiritual Care. Robâ&#x20AC;&#x2122;s Story On the neurology floor, I met a young Cambodian woman who could not move or talk because of some neurological issues. She was aware of everything but trapped in her body. Her family lived far away. I think she was a student at Syracuse University. The womanâ&#x20AC;&#x2122;s sister visited and all the patient could do was bat her eyes to communicate. Her sister would go through the alphabet with her and figure out what she was trying to tell her. To simply ask for her head to be propped up with a pillow, it would take ten minutes of communicating without words.

Rob. K. Bundy

The patient was Buddhist and I said, “I would be very happy to chant for you, to do some Buddhist chant. Would you like that?” She responded positively. I started to chant, and looked over at her and saw tears coming down her face. It was clear that the familiar sound of the chanting was of great comfort to her. In that moment I said to myself, “Yes, I’m serving this person well and serving her spiritually.” The woman asked me to come back and sing morning chants with her every day. It was remarkable because her family members would come and chant with me. Two of them filmed those moments on their phones and sent the videos to family members in Cambodia. They told their family in Cambodia that their relative was being well taken care of and that there is someone here in United States who chants the way they do. Theses interactions were lovely moments.

Pa t i e n c e

Challenging Time In New York City, there was a woman who was losing her fight with cancer. She was a very dynamic, hardworking executive, used to controlling of her environment. I spoke with her, and she asked what my faith practice was. I told her that I was a Buddhist. She asked a bunch of questions, asking if I knew this person or that person. She told me I should look at a particular website and I told her I would. Then, she asked me to recite the web address that she had just given me. I said, “You know, I can’t quite remember the name because it all came so fast.” And she said, “You weren’t listening” and “Get out of this room and never come back.” I left quite shaken and upset because I had made her angry, and had somehow let her down. In that moment, I was struggling and thought that I was not suited to be a chaplain. I went to my supervisor, and explained what happened in the visit, and she said, “It sounds like you will be a perfect chaplain.” “How?” I asked. The teacher replied, “This is somebody who has no control over her life. Her body has betrayed her, and she doesn’t get to choose anything. You gave her power by letting her throw you out of her room. That was one of the best things you could do as a chaplain.” This experience opened up my mind about what a chaplain can be. To be a chaplain is not just saying prayers or making people happy. There are all kinds of ways that spiritual care can be provided. Out of this difficult visit emerged hope and encouragement.

One Letter Made the Difference By Debra Hayes

About Debra Debra is a registered nurse who works on the neuroscience floor at Upstate University Hospitalâ&#x20AC;&#x2122;s east tower. Her story I was searching for a new nursing position. I knew that going back to the ER was not what I wanted any longer. I interviewed for a couple of positions and was told â&#x20AC;&#x153;once an ER nurse, always an ER nurse.â&#x20AC;? I felt that being older and more experienced was not an asset, especially when looking at younger, new nurses who would be less expensive on the pay scale. I began to think that Upstate University Hospital was not going to be my home again. Then I interviewed for a position on 9E. After getting the job and going through orientation, there was that challenging period of transitioning to floor nursing and not knowing my co-workers. It was frustrating. I reached a low point. My son had been home but had gone back to college. The hour-long drives to and from work were especially tough in the winter. I became depressed. I talked with my nurse manager who was very supportive and helped guide me. I was placed on medication, went to a counselor and got the help I needed.

One Letter Made the Difference

Debra Hayes

In the middle of this, a patient wrote a letter to hospital administration about the care he received from me. From among all the nurses in the hospital, I was chosen for the Daisy Award. I have been a nurse for 30 years and this was the first time I received an award. It was humbling and the timing could not have been better. The hospital did an amazing job making me feel appreciated and recognized for my hard work. I feel much better. I love coming to work every day. It is important, not only to give good care to my patients, but to try to make a difference in their lives. I am blessed to work with other nurses who strive to do the same for their patients. I am blessed to work on 9E and learn from my patients and coworkers every day and I hope to smile and laugh with them for many more years. Often, patients and families write letters about the care they received on our floor because of our great staff. Our patients have such great obstacles to overcome. There is no greater joy than to see a patient learn to take that first step again. Our unit is a blessing to the hospital.

Miracles Do Happen By Kerryanna Kershner

About Kerryanna Kerryanna lived in foster care as a child. Her salvation was that she was very smart. After high school, Kerryanna went into the Air Force and served for eight years. After completing her time in the military, she felt called to become a nurse and followed that calling. It took Kerryanna six years to get through nursing school. Kerryanna worked as a visiting nurse, then in general pediatrics. Later, she worked as a case manager at several units in the hospital. She left the hospital for several years, but realized she needed to be back at the bed side. Now, Kerryanna is a nurse in the pediatric intensive care unit. Kerryannaâ&#x20AC;&#x2122;s Story Several years ago, there was a boy, age 8 or 9, who had nearly drowned, and was very ill. He had been under the water without oxygen for a very long time. His lungs were very sick and he was on special ventilator. I was orienting a new nurse at that time, and we were working hard trying to keep him alive. He was very unstable. His parents were not together, but they were lovely in the room with him, especially his mom who was very spiritual. I was talking with my nurse orientee, and I remember telling her that the child was not going to make it. But he

Kerryanna Kershner

Miracles Do Happen

turned a corner, got through the trauma, and survived. After tutoring, he went into the seventh grade. The patient had little chance to live. It felt like he survive because of the strength and power of his family willing him to live. There was no medical reason for him to survive and nobody expected it. It was a miracle. Challenging Time We get patients in the intensive care unit who come from difficult social situations or have terrible medical problems, sometimes both. In those cases, the things we do to keep a patient alive may be prolonging a life of suffering.This is the most difficult part of our care. I find strength from understanding that there are things we cannot change. But there are things within our power, and it is in our power to deliver compassionate and skilled care. It is all about the patient. I find you can heal your own pain by doing what you can to help someone else. That gives me strength. A Word of Encouragement I have been a nurse for 20 years. I have learned that the more we can make our work about the people that we are caring for, the more we get out of it. When we are struggling through a difficult time at work, the secret is to be truly present with other people. Something happens. You get recharged and begin to feel fulfilled again. While we are here, the best thing we can do for our patients is to be present to them.

Molly McCoy

There Is a Child By Molly McCoy

About Molly Molly has been a pediatric respiratory therapist for over 25 years. She is a second generation therapist. Her mother was a respiratory therapist at the original Upstate Medical Center for 18 years prior to Mollyâ&#x20AC;&#x2122;s introduction into the profession in 1988. Molly had no interest in making pediatrics her lifeâ&#x20AC;&#x2122;s work, but she fell in love with the kids and that was that. Everything she knows about courage and strength she has learned from her patients. Mollyâ&#x20AC;&#x2122;s Story Many of my patients have touched me deeply. I was not prepared for how close I would become with the families of some of our sickest children. I began to appreciate the depth of these relationships when I went to the funeral of a child who had lost his battle with cancer. At the church, pews had been reserved for his health care providers right behind his family. His family knew that we grieved, too, and we were grateful that they allowed us to share those moments with them. I will never forget a little girl named Kimberley. She had chronic lung disease and spent a lot of time in the hospital. She loved spaghettios so much that her nasal cannula was

Molly McCoy

stained orange from the sauce. When Kimmy was 2 years old, she became very ill and was on a ventilator in the intensive care unit. Whenever anyone approached her bedside, her father would say, “This is my daughter, Kimmy.” Her father made sure that no one would forget that there was a child attached to all that medical equipment. Her father’s actions made an impression on me. It became my practice to remember the humanity in my job and not just the machinery. I focus on remaining aware of the individual child — the son or daughter, sister or brother, grandchild, or friend — in that hospital bed. I make sure that I am caring for that child, not just providing care. What keeps me going in pediatrics, in spite of tragic losses, are the incredible miracles I have been privileged to witness. I think of the drowning victim who, after teetering on the brink of death for weeks, walks out of the hospital. I remember the accident victim who survived, against all odds, and is thriving. Severe illnesses are conquered. Devastating injuries are overcome. The positive outcomes far outweigh the heartbreak. Those experiences keep me balanced. A word of encouragement Working in pediatrics is the best career I could have chosen for my life. It feeds my soul and brings me peace. My advice to anyone choosing to work in this incredible field is to enjoy it. Have fun with those kids. Laugh with them, cry with them, care for them. Allow them to touch your heart and the rewards will be overwhelming.

Acknowledgements

Publishing made possible by a grant from The Advocates for Upstate Medical University.

Cover illustrations by Maria Fazzini, MS, LCAT, ATR-BC, pediatric art therapist, Upstate Golisano Childrenâ&#x20AC;&#x2122;s Hospital

Cover and interior photographs from iStock.

Portrait photographs by Kathleen Paice Froio, Public and Media Relations, Upstate Medical University. (Except for pages 9, 18, 48 and 55) Portrait Portrait Portrait Portrait

of of of of

(Kofi) Onesime, page 9, by The Rev. Terry Culbertson. Ted Spadotto, page 18, by Susan Keeter. Toni Heer page 48, by Robert Mescavage. Rob Bundy, page 55, courtesy Syracuse University.

Design and editorial assistance by the Department of Marketing and University Communications, Upstate Medical University.

Your Story Here is space for you, the reader, to write your “journey by heart.”

68 Here is space for you, the reader, to write your “journey by heart.”