Courage to Shine™ was founded to acknowledge, motivational and inspirational individuals and/or groups of patients whom have overcome congenital genitourinary birth defects and/or major urological surgeries in their childhood (but not limited too), and have the courage, strength and determination, to transform that adversity to triumph later in life.
Turning Adversity into Gratitude
By Amy Oestreicher
I’ve been called a surgical disaster, a medical miracle, barely alive to the energizer bunny that just keep going.
It was the night of our family Passover Seder – a favorite holiday of mine, reminding me of Spring, renewal, redemption, and good things to come. As always, there were 30 joyous and over-stuffed friends and family surrounding us, carefully reading along with a Passover Haggadah that my dad and I had put together ourselves, based on our favorite Spring quotes, inspiration and passages. As always, we told the Passover story with our mouths full of laughter, song, brisket and kugel. As always, I felt snuggly embraced by the love and warmth of the people in my life and the safety of a time-honored family tradition. And then I felt something that I had never experienced before.
A stomach ache. A simple stomach ache that escalated into excruciating pain, never ceasing and only growing worse for two entire days. As the pain grew more and more intense, my father drove me to the emergency room for a routine x-ray, although my physician reassured us that it was only gas. On the way to the hospital, (as my mother has told me) my cheeks suddenly puffed up like a chipmunk, and I collapsed as soon as I tried to get out of the car. Then I don’t remember anything else but the physical sensations of awful pain. All I remember is gradually waking up about six months later.
I suffered a coma, a ruptured stomach, and underwent a total gastrectomy. When I awoke from my coma, I was told by my doctors that my stomach exploded. I couldn’t eat or drink, and it was not known when, or if, I’d ever be able to again. With the expertise, audacity and innovative thinking of surgeons from seven hospitals, many 19-hour surgery marathons, and multiple shifts of nurses and doctors, I was miraculously reconstructed with the intestines that I had left. Over time, I made slow but steady steps towards recovering my “personhood.” I learned to sit upright again. When my tracheostomy healed, I started to talk. Once my hands were no longer shaky from the medications, I began to write and doodle. With time, patience, resilience and persistence, the “me” I remembered started to come back — the “me” that 26 surgeries could never take away.
By 2012, I felt like I had finally made the “great comeback.” I had written, starred and directed myself in “Gutless & Grateful,” a one-woman musical about my life. I was happy, healthy and had an ostomy. But everything is better in retrospect. At that time, I felt I was happy and healthy, but I had an ostomy. So I took a risk. I underwent an elective surgery to reverse my ostomy. Unfortunately, this elective surgery turned into three emergency surgeries within eight days, an ileostomy, a nicked bladder, a fistula, and a wound that will never close.
When my bladder was nicked during surgery, a whole new layer of complications were now added.
Now my nicked bladder was leaking into an open wound, which was not allowing the wound to heal. which was irritating it and not allowing it to heal. Doctors now searched for more medical accessories attached to various openings in my body to divert the urine from my wound. Nurses would try to raise my bed on a slant so the fluid could bypass my open stomach, but nothing seemed to work. That’s when the wound-vac was introduced and probably one of my most traumatic memories. Many visits to radiology, stents, x-rays and CT-scans later, nothing was getting better.
The wound vac was exactly that – a machine that was hooked up to my wound, literally vacuum packing it, trying to suck all of the liquid put in order to dry the wound. In order to make this possible, there could be no room for any molecule of air to get through. This required an arduous process that could take up to sneak hour, of putting enough layers of very specialized gauze into the large cave of air wound in my belly, making sure that everything was completely air tight.
When you are dealing with an imperfect wound, that has varied slopes, alcoves, corners and ridges, getting an airtight seal us near impossible. However, that didn’t prevent us from trying every day. There was a very exact procedure to thus, with about 20 steps. There was a layer of styrofoam, then sponge, then gauze, then a variety of different plastics, wrappings and tape. By the time the dressing change was done, I would be layered with so much gauze that my stomach looked like a Baked Alaska, with a tower of foam clumsily taped to my abdomen.
My bladder would take months to fully heal after many rounds of ultrasounds, charcoal tests and various interventions before it finally healed. When we were discharged from the hospital months later, the first thing we did was go to the mall and pick up a purse t carry around my catheter in. The following months were filled with pain, as the catheter pulled with every twist and turn I made. On top of this, my days were spent stuffing diapers with hand towels in the unsuccessful attempt to get my wound to stop draining. My life was unmanageable. It was hard to feel like a person separate from what my medical situation had become.
It was so overwhelming and traumatic to try to figure out how to put a bag over this gaping wound — this wound that now functioned as a second ostomy. Then, Tina, a very generous nurse with a truly compassionate heart, visited me at my home. Previously, I had been unwilling to receive any outside input. But after weeks of stuffing towels around my abdomen, I knew I had to come to terms with the idea that this wound needed a big intervention.
This was a very big deal to me. It was my acknowledgement that this surgery, that I had chosen, was truly a setback. And I had no idea how I would make a comeback.
Things did get better. They got better because I was determined to make them better. I applied to college at 25. I booked two theaters to perform “Gutless & Grateful” again — updating the show with the 27th surgery for a little comic relief. I created an online dating profile for the first time, and I met the love of my life. From years of trying to keep my head up while being so isolated, I was overwhelmed with loneliness all at once. I was fresh out of the hospital and didn’t have a community of people my age I could just go out with at night and be social with; no way to leave this medical thundercloud behind me, even just for a few hours of relaxation. I had no expectations and nothing to lose, so I set up an online dating profile for myself using the first dating site I remember someone mentioning. I found the love of my life a week later, and we married in June.
I made a comeback, and I felt alive once again. Then, one day, while I was at school in Amherst,Rolf Benirschke, the founder of the Great Comebacks Award, called me personally. I was so thrilled; I could hardly speak. This was the first time I was really recognized for what I had been through medically, as a true survivor.
As Brandon and I flew to the Great Comebacks Ceremony in Nashville that year, I couldn’t help but smile. With time, the body can heal. And even with wounds that haven’t fully healed, I’ve grown stronger. The Great Comebacks ceremony brought this to the forefront for me. Not for my performance, my mixed media art or what I was doing in the community, I was being recognized for being a resilient, strong and proud ostomate.
I had never known how to talk about my ostomy. I didn’t know what an ostomy was until I had one. Part of me felt like it was “not something you talk about.” Even though I was never told this, I felt there was some kind of stigma, like I should be ashamed. Part of me felt like an outcast, like no one had what I had.
I met a beautiful fashion model, a dancer, a teacher, a nurse, inventors, warriors, enthusiastic, vivacious amazing souls. And — something very foreign to me — they were so proud of their ostomies, and grateful that their ostomies enabled them to lead such happy, healthy and full lives.
Great Comebacks was an amazing opportunity to be honored. So much of my own story had taken place in the dark, unknown to the outside world. Nobody knew how I’d spend hours in the bathroom changing my bags every morning. Nobody knew how, when I was unable to eat or drink for years, I’d lock myself in my room for every waking hour and journal. I avoided being exposed to the outside world where normal people could eat and drink freely. It felt wonderful to be honest, and to share what coping with my medical situation was like for me. It also felt wonderful to gush about my father, a doctor who worked tirelessly to advocate for my health and save my life.
The more ostomates I meet who proudly embrace their bodies and situations, the more I’m inspired to change my entire view on myself, and how I view self-acceptance and self-love.
Throughout these eleven years, I’ve been strong, determined and willing to do whatever it took to stay alive. I’ve dealt with tubes, bags, poles, you name it. And if this ostomy and a fistula is all that I’m left with after everything, then I am truly grateful. More than that, I thank my ostomy for enabling me to live life to the fullest, to my fullest. I call it my Harry Potter thunderbolt scar: a symbol of strength, courage, individuality and life.
27 surgeries later, I’m eating, drinking, married, in college, gutless and grateful for life. That’s why in 2012, I took all of those old journal entries, combined them with song – some I had written, and one that David Friedman and Kathie Lee Gifford wrote especially for me, Still Alive, and created Gutless & Grateful, my one-woman autobiographical musical.
My show dared to explore a very personal topic – what could have been a tragedy – in a comedic, yet poignant musical – the culmination of years of struggling in the dark, and the spark in me that refused to die. It told my triumphant survival tale in a way that inspired many theatregoers and prompted them to rethink the ways they live their lives. Together we experiencing how by telling stories, we can become empowered in any uncertain circumstance and get through anything. To quote a line from my show:
“They say that everything happens for a reason. But that’s not always true. Sometimes, you have to make it happen. I think about my old life, and I miss it. I miss the simplicity and straightforwardness of it. I look at old pictures and I miss the innocence, the joy, the carefreeness in my eyes. I can’t be 13 again but I can be the best 28 I can. But sometimes I wonder what life would be like if this never had happened –This is not the path that I planned for myself – but does anyone’s life ever work out exactly how they plan it? I was led astray, and hurt, and betrayed, and dehumanized, taken apart and put back together, but differently. But my passion never went away. I kept my hunger alive. Now I know that my role in life is still to be that same performer I always wanted to be when I was 13. But now with an even greater gift to give. A story to tell. “
When I started sharing my own story, I realized that I wasn’t alone. Other people were struggling with what Ihad faced in isolation for years – shame, fear, PTSD, anxiety, depression, loneliness- I wanted to encourage people to start speaking up, and bring marginalized voices into the spotlight. Only when I was finally able to share my story could I truly heal, and now I want to encourage everyone to start sharing their stories.
Through sharing our stories, we become empowered, inspired and more comfortable with our life circumstances, as well as with who we are. That is why I turned Gutless & Grateful into a mental health advocacy program. Sharing our stories starts the conversation for others, and brings out the stories that unite us all, to show that creativity is an essential mindset, a survival skill, and a way to see the world.
With every obstacle, stories help us find a new opportunity. Stories saved my life. Sure, I have wounds, scars, and some medical issues that still haven’t been resolved. But if I took away all of the setbacks, hurdles, frustrations and detours, I wouldn’t be who I am today. Telling my story made me realize that. That’s what inspired me to share my story with the world, and call this my “beautiful detour.”
IN fact, it’ the name of the book I’m working on, which hopefully will be out by next year! A detour is many things – unexpected, a nuisance, difficult, hard to grapple with, frustrating, – but it can be beautiful.
Now I want to inspire people to flourish because of, rather than in spite of challenges. That’s why I started the “Detourist” movement, which is also the subject of my TEDx talk on April 16th. #LoveMyDetour aims to encourage growth and healing by sharing our stories; to transform communities by inspiring people to open their minds and reframe their view of “detours” into a new direction for life.
That’s why I’m spreading #LoveMyDetour around the world. I’m trying to start a whole movement to show that we all have things come up in life that may surprise us, but they don’t have to derail us. I’m proof of that myself! And what I’ve experienced is, the more stories we hear about turning an obstacle into an opportunity, the more empowered we are to transform our own lives and have confidence that when life DOES surprise us, we’re capable of getting through anything.
Today, I have used my “detour” to inform who I am as an artist, writer, and performer (and newlywed!). I’ve been performing my one-woman musical, Gutless and Grateful for four years across the country, not only to theatres, but also as a mental health and sexual assault prevention program. This month I’ll be performing it as the Keynote speech for the Pacific Rim International Conference on Diversity and Disability. Performing Gutless & Grateful for nurses, patients, hospitals and support groups has been an amazing way to both share my story and empower others.
We all have detours in life. I hope my detour shows that it is possible to turn adversity into creative growth. On my site, I have a weekly Why Not Wednesday feature, where a Detourist shares how any detour in life has made them who they are today. Although everyone’s detour may be different, I believe we all heal when we share the universalities behind the obstacles in life. Together, we’re stronger.
As a Detourist, I look for where that “wrong turn” in my life may lead me to.
The good part is that everyone has had an unexpected detour one time or another, and the best guides are thestories we hear. Have a detour you want to share? Check out ways to share with the #LoveMyDetour community here!
- What’s a Detourist? Learn more here!
- Share your detour!
- Read other Detourists’ stories
- See the #LoveMyDetour art/photo gallery
- College Detourists: Bring#LoveMyDetourto your campus!
- Like our Facebook Page
Amy Oestreicher is a PTSD peer-to-peer specialist, artist, author, writer for The Huffington Post, speaker for TEDx and RAINN, health advocate, survivor, award-winning actress, and playwright, eagerly sharing the lessons learned from trauma and has brought out the stories that unite us all through her writing, mixed media art, performance and inspirational speaking.
As the writer, director and star of the Gutless & Grateful, her one-woman autobiographical musical, she’s toured theatres across the country, earning accolades since it’s BroadwayWorld Award-nominated NYC debut. As a visual artist, her works have been featured in esteemed solo exhibitions, and her mixed media workshops emphasize creativity as an essential mindset.
To celebrate her own “beautiful detour”, Amy created the #LoveMyDetour campaign, to help others cope in the face of unexpected events.
As the 2014 Recipient of Convatec’s Great Comebacks Award, Amy is a passionate voice in the ostomy community, founding an online community, speaking for National WOCN conferences, and writing for the official publication of the UOAA. She is a regular lifestyle, wellness, and arts contributor for over 70 notable online and print publications, and her story has appeared on NBC’s TODAY, CBS, Cosmopolitan, Seventeen Magazine, among others.
She has devised workshops for the Transformative Language Arts Network National Conference, the Eating Recovery Foundation, League for the Advancement of New England Storytelling, Mental Health America and others, and is this year’s keynote speaker for the Hawaii Pacific Rim International Conference on Diversity and Disability.
To improve student mental health, Amy developed a program combining mental health advocacy, sexual assault awareness, PTSD education and Broadway Theatre for college campuses.
Amy is currently touring the country with her one-woman musical, Gutless & Grateful, keynote presentations, workshops and signature talkbacks, with specialized versions for corporations, college campuses, survivors, healthcare professionals, and artists.
See more at amyoes.com.
Speaking to Healthcare/Nursing or Patient Care: amyoes.com/patient-care/
E-mail Amy at firstname.lastname@example.org
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