Strong in the Broken: Thriving through Chronic Illness by Singing and Dancing

Today’s Strong in the Broken essay is by Amy Oestreicher: Thriving with a Chronic Illness By Singing and Dancing About It: How Writing a Musical About My Life Helped Me to Reclaim It. She got me by line 3 because my husband would love it if life were a musical and sometimes he pretends it is. This is a story of turning weakness into strength, using the detour of brokenness to accomplish a creative dream. I love how Amy figured out how to not give in to her sickness but how to be the boss of it and find hope.

It all started with a dream.

I grew up doing musical theatre.

Let me rephrase that. I grew up thinking my life was a musical. Call it the “theatre bug”, call me a “drama queen” or a great big ham – I lived for the world of the stage. For me, singing and acting were ways I could connect with the world around me. When I took a deep, grounded breath from my gut, I sang what my heart longed to express. I found comfort in the words of my favorite composers. I read scripts like they were novels. I would play with my playbills from various shows I had seen like they were my Barbie dolls. Through theatre, I had a place in this world. I could make believe by inserting myself into characters from every era, situation and mindset, while still expressing my own individuality.

I was the kid who got sent to the principal’s office because when the teacher left the room, I would jump on her desk and start tap-dancing. I was the girl who forced every unwilling classmate to join me in a Les Miserables medley, assigning them their designated parts to pass the 30-minute school bus ride.

Even all the way up to high school, I was the theatre-girl. It was my identity, my passion, my livelihood. I sacrificed my social life and gave up many opportunities to immerse myself in what I loved.

I’ve always been warned not to put all of my eggs in one basket, but theatre ran through my veins – it was all I thought about, lived and dreamed. I’d write songs in my assignment notebook as I waited for the school bell to ring, then hop on the train to the next open call I’d read about in Backstage. When I fought with my brothers, I could only debate with them if we could do it in the spirit of a musical theatre duet. They weren’t so keen on that.

So what do you do when you’ve invested everything into your passion and you can’t follow it anymore? I’ve always thought about what would a world-concert pianist would do if he injured his hand, or a dancer breaking a leg…

…but sprains heal and wounds can eventually mend. Dire circumstances felt much more long lasting; when at 18 I awoke from a coma. Although the medical staff—that suddenly became everyday faces—was more concerned about keeping my organs and me alive, I was still trying to grapple with one frightening new concern:

Would I ever be able to sing and dance on stage again?

With a ventilator and a tracheotomy, I couldn’t even talk. From months of bed-rest, the first time I was able to stand up, I was alarmed at how they trembled, as if my legs were Jell-O. I lost the energy to even think about what I loved, and being unable to eat or drink in these new medical circumstances turned my once-steady focus to mush and irritability.

I remember asking every person I could find in the hospital if they thought I would ever be able to sing and dance again. I was faced with many apologetic “I don’t knows”, sighs, shrugs, and awkward changing of the topic. However, I remember one occupational therapist gave me words that to her, felt like words of encouragement. She looked at me compassionately, and said, “You never know – the human body is amazing. I had one patient who showed no signs of hope, and a year later, when he was discharged, he only needed a wheelchair!”

(These were not exactly the words of encouragement I was looking for.)

With time, patience, and dogged determination, I was eventually discharged from the hospital. What I’m glossing over are the multitudes of surgeries, setbacks and frustrations, because what was the most important was my passion – I never forgot how I missed the stage. Even not being able to talk or stand up on my own, I still visualized me singing and dancing. Without theatre, I felt disconnected, purposeless, a has-been. I missed the vibrant girl I remembered being the first to sign up for auditions, now condemned to a realm of medical isolation.

I had always had a dream of combining song and dialogue in a show of my own design. I love the idea of storytelling through theatre, but as a teen, I didn’t really have much of a story to tell. But sometimes, a setback is an opportunity in disguise. Suddenly, I had a tale of hurdles, triumph, and heart.

Eight years after my coma, I was finally headed towards a life of medical stability. I learned through experience that things can heal with time, and that’s not always the prettiest or easiest way. It was an extremely difficult journey, yet when I started to put together a musical of my life, things felt like they had happened for a reason.Now I had a story to tell, a message to share.

My one-woman musical autobiography, Gutless & Grateful, started out as stapled pages of my journal – a few pages from the thousands of journal entries I had completed when unable to eat or drink for years. I selected 16 songs—some of which I had written – that had always resonated with my journey and me, and loosely strung them together to sing for my own therapy. I’d perform Gutless & Grateful for my parents, my dogs, but mostly for myself. Through the songs, I could allow myself a safe place to feel the charged emotions I was still trying to process from years of medical trauma.

I called it my “world in a binder”.   My parents called it “Amy’s little play.” It was no surprise when I had many looks of concern and gentle warnings when I decided to book a theatre in New York for my world premiere!

I performed Gutless & Grateful for the first time in NYC in October 2012. It was a frightening, bold, vulnerable, and breathtaking experience. In it, I told everything – the pain, the medical, the joy, the infuriating – with music, drama, and humor, most importantly. I had played “roles” before, but for the first time, I was honestly revealing my own medical and emotional struggles for hundreds of strangers every night. It was a risk to lay my soul bare, but the reward was in how my own vulnerability caused others to become vulnerable and moved by my own struggles.

Since then, I’ve been performing it in theatres, hospitals, and groups in need of any kind of inspiration and encouragement. When I realized how combining powerful firsthand experience could transform lives, I developed my little-show-that-could into a mental health advocacy and sexual assault prevention program for students. Nearly losing my life at 18 years old, I’m now reaching out to students at that same pivotal point in their own lives.

Medically, my life is far from perfect, but now when a surgery goes wrong, I use it as more material for my show – if we can’t learn to laugh from hardship, we can’t learn anything. And for me, when I learn, I feel alive – that just as trees grow, change and evolve with every season, I can too.

Through Gutless & Grateful, I’m sharing my story and helping others find the gifts and the gratitude in the hardships. And in healing other people, I heal my own self a bit more every day.  I’m not there yet, but just like my show – I’m on the road.

As a performer, all I want to do is give back to the world. Being up on stage and singing is one part of the joy, but what brings the process full circle is knowing that somewhere in the audience, I am affecting someone and making them think in a different way. That is the power of theatre – stirring you to see things differently. Doing what I love, my passion once again can freely flow through my veins, and I’m a person now, not just a patient or a medical miracle. Passion may not heal 27 surgeries, but passion has healed my heart. My passion has re-anchored me in who I am. And for that, I am Gutlessly Grateful.

Amy Oestreicher is a PTSD peer-to-peer specialist, artist, author, writer for Huffington Post, speaker for TEDx and RAINN, health advocate, survivor, award-winning actress, and playwright, sharing the lessons learned from trauma through her writing, mixed media art, performance and inspirational speaking.

As the creator of the Gutless & Grateful, her one-woman autobiographical musical, she’s toured theatres nationwide, along with a program combining mental health advocacy, sexual assault awareness  and Broadway Theatre for college campuses.

To celebrate her own “beautiful detour”, Amy created the #LoveMyDetour campaign, to help others thrive through difficulties.

As Eastern Regional Recipient of Convatec’s Great Comebacks Award, she’s contributed to over 70 notable online and print publications, and her story has appeared on NBC’s TODAY, CBS, Cosmopolitan, among others. 

She has devised workshops for conferences nationwide,  and is this year’s keynote speaker for the Hawaii Pacific Rim International Conference on Diversity and Disability.  Learn more at amyoes.com and sign up for updates on My Beautiful Detour, her upcoming book.

Flying Economy Class

I, like every expatriate who flies thousands of miles a year both domestically and internationally, read the article Paying a Price for 8 Days of Flying in America, in the New York Times on June 9, by Sarah Lyall, about the gross indignities of air travel. 8 days, 12 flights, 1 journalist. All domestic flights.

It was a well written, funny article and I enjoyed reading it.

She seemed a bit whiny. In fact, I’ll go out on a limb here, a lot of people seem a bit whiny about air travel.

Yes, there are indignities involved when traveling and I do think it is ridiculous to see people, myself included, shuffling over filthy airport tiles in bare feet because our flimsy sandals are on a conveyer belt just in case we tucked a weapon between those Old Navy plastic pieces of junk. It is truly awkward to have a stranger give me a groin pat and quick feel under the wire of my bra, in public.

Yes, I wish I could fly while lying on a bed of rose petals, sipping champagne, while a private masseuse rubs violet essential oils into my now germ-ridden feet.

Sure, it would be awesome to have a steak dinner and handmade hot fudge sundae while zooming above the clouds.

We all want to walk on fairy dust and ride unicorns.

We all want to be treated like kings and queens and be first in line and get overhead space for our over-packed roller bags.

We can’t always get what we want.

I get it, air travel is no longer the realm of the exotic and the regal, sometimes it is barely the realm of the dignified. I get it, planes aren’t on time and luggage gets lost.

I have been in a seat with the person behind me wedging their knees into my back so I couldn’t recline. I’ve sat beneath overhead panels that dripped water on me incessantly throughout the flight. I have been in seats with broken entertainment systems on flights lasting more than thirteen hours. I have been delayed so that I missed my connecting international flight which meant a 2-day journey through three continents turned into a 5-day journey, including lost luggage. I have been thirsty and my stomach, dear God, my stomach has growled.

I would not call any of these things suffering.

I didn’t recline. Okay, it made a little crabby but no one died. No one even got cramps. I asked the flight attendant, who was empathetic about the dripping but unable to move me on the full flight, for a napkin and draped it over my lap and shoved another into the crack above me. I read a book and listened to music instead of watching a movie. I, and my two children, turned our epic 5-day trek into a memorable adventure that we now laugh about. I ignored my thirst and didn’t cry because I couldn’t meet my stomach’s needs in this exact instant with organic free-range gluten free paleo something. In other words, I put patience and perspective to work.

Traveling by plane is now for the masses, at least for more of the masses than it used to be. We aren’t treated like kings and queens while traveling and despite what our parents may have told us, we are not all kings and queens.

We pay to get across the country or the globe in a matter of hours and those of us in economy class paid less. So we get less but we still get to our destination. There are many people who have never flown in an airplane. Many people who can’t afford to soar above the earth, duck through clouds, watch lightening from above it, stare down at golden wheat fields and glittering cloverleaf freeway exits, and disembark in a totally new location. Many people never get to feel the surge of power forcing them back into their seat upon takeoff or the drop of their stomach during turbulence.

This is a privilege. Air travel is a privilege.

And, dare I say it, it is a privilege to sit in economy. To know that I have saved hundreds, thousands of dollars, and that I and the person in business class will both get off at the same place but I saved money and, if it is money I actually have, I can donate it to a friend in need, to my child’s college fund, or to a just cause – I find that satisfying. If it is money I don’t have, what have I lost, compared to the person in first class? I have lost ten minutes of time while boarding. I have lost a fancy meal. No problem. I packed a peanut butter and jelly sandwich and, again, I’m satisfied.

It is hard for me to justify paying for a seat that reclines to a bed or a monogrammed pillow on a three-hour flight when Syrian refugee families live in less space (more or less). It isn’t so bad, back here in economy. I’m flying. I’m seeing the world. I’m typing this while I sit here in my seat at the back of the plane. Here, where I have electricity, a movie, running water in the toilet, temperature controls, smiling flight attendants who ask if I want Coke, juice, water, coffee, milk? Almonds? Pretzels? Cookies? They only get crabby when we treat them poorly (don’t be an ass to flight attendants, flying tip #1). In other words, this seat has more amenities than the homes of some people I know in Djibouti.

In saying this, I’m not judging the person in Business Class. I have no idea what they do with their money or how they make their choices and I can feel legitimately happy for their comfort, or I can just ignore them and not let envy or judgment ruin the incredible experience of flight and of my own life. I’m simply saying I can find fulfillment in the lifestyle I can afford.

I realize this makes it all sound hopelessly dramatic, to make these kinds of comparison. But by looking up, toward people who have more and who will always have more, only stirs discontent and Americans, myself included, have become far too good at this. Don’t look ahead, don’t look behind. Look at your own self, your own seat, your own life.

Your brown-haired daughter snuggled on your lap, her head so heavy your legs fell asleep sometime over Chicago. Be glad you are sitting so close together, there aren’t many more years before she won’t want to lean on you anymore. Look at your husband, on the other side, his elbow poking into your ribs as he crosses waaay over his share of the arm rest. He keeps choosing you and your life together, over and over, even when you are mean or selfish or try to shove his elbow back over to his own side of the arm rest. Look across the aisle at those teenagers. They are going to college in a year and they are the best thing you have ever made, the best thing you have ever given to the world. Swallow the lump in your throat. That isn’t from turbulence, that is from contentment.

Yup, that can happen. Even back here, in economy class, boarding zone 3, last row of seats. It is enough.

Actually? We are kings and queens.

Good Things, the First. July.

Reflect, find joy, be thankful, keep track. These are things I want to do more, be better at. I’m battling a season of pessimism and cynicism and my best weapons are thanksgiving, beauty, and goodness. Here are notes I jotted down at the end of the day throughout July.

Taking note of one good thing, one beautiful thing, one thing to be thankful for each day. (Dina Relles, at commonplace, does this with stunning simplicity and gorgeousness each month.)

1 deer bounding through wheat fields

2 pinatas

3 a luscious bounty of u-pick strawberries

4 Minnesota fish fry and fireworks

5 seeing old friends, with new beards

6 raspberry chocolate ganache bars and tea and deep conversation

7 long runs in fresh shoes

8 paddle boarding quietly, ssshhhh, watch the mother loon and her two babies

9 Midwestern Northwoods cabin holidays

10 bike rides on rolling country lanes

11 thunder that wakes me up in the middle of the night, falling back to sleep to the sound of rain on grass

12 teenagers who catch their international flight on time, but barely

13 triathlon training on a still, chilly morning

14 blueberries

15 pulling paddle boards behind the boat while Tom does headstands on them

16 feeling loved by church people

17 fleeing a rainstorm at a restaurant, from the outdoor patio to indoor seating, with a glass of white wine in one hand and my siblings around me

18 Running shoes that don’t pinch my fat toes

19 sisters, all together

20 Family reunions, family Olympics

21 Saying ‘thank you’ in person, for a priceless gift during a moment of brokenness

22 lingering for long, slow Minnesota summer sunsets

23 powdered donuts hanging from strings and eaten with no hands, a timed race

24 nieces who run lemonade stands and offer massages for $0.15/minute

                  24B. full rainbows curved over farmland, one pot of golden wheat to another

25 biking through sprinkling rain and purple-black storm clouds

26 twin birthdays. 17!

27 groups of giggling teenagers

28 sharing the vision for my work

29 my first triathlon, with my brother

30 when my kids and the kids of lifelong friends develop deep friendships

31 overnight, multi-state college tours with twins

 

Strong in the Broken: When Cancer and Life Collide

I’m a couple days late with this post. I blame it all on doing multi-state college tours with twin 17-year olds. It was awesome.

Today’s Strong in the Broken post is by Nicole Baldonado, a story of cancer and weakness and learning to rest.

“God, we can’t do it anymore.”

That was me, whispering in the shower, hoping the steaming water would burn away the headache that comes with crying all day.

My husband, Josh, had just told me he was diagnosed with thyroid cancer.

Shock. God, how can this be happening? He’s thirty years old. We have a three-year old and a baby boy. Fears paraded endlessly through my mind.

People told us, “This is the cancer to get.” It’s one of the easiest to treat. They caught it early on, and the doctors are hopeful that Josh will be fine after treatment.

It still scared me to death. In the past few years, we’ve learned by experience that things don’t always “turn out ok” in the end. Or rather, “ok in the end” doesn’t always mean that someone is healed. Bad things do happen. And they happen to all of us. 

This post is an act of transparency. I’m not complaining or venting, and I can think of so many people who have it way harder than me. I’m telling you I understand life can be awful, painful, maddening. I’m honestly admitting that I get angry, become fearful, wallow in grief…but my God is gracious. And I’ll tell you how I know it…

We moved to Ukraine two and a half years ago. Within two months, we lost a baby to miscarriage. In addition to the grieving that comes with losing a baby, taking care of the medical needs was confusing, embarrassing, and fairly matter of fact. It made healing all the more difficult.

That same week, a dear friend in the States passed away unexpectedly. It was heartbreaking not to be with loved ones to grieve alongside them.

For the next six months, I was treated for chronic health problems and told that we should not try to get pregnant yet. Nothing seemed to work. The due date of our baby came and went, and we were still waiting. Any mom who has lost a baby knows that Baby’s due date is a sort of monument in your mind. That day was sad and full of questions without answers.

Eventually, we were overjoyed to get pregnant again!

At five weeks, I started bleeding. I will never forget laying on my living room floor, tears streaming and everything in me crying out, “Why, God?!” My doctor said it was a hemorrhage and gently informed us that the chance of Baby surviving was extremely small.

I was on complete bed rest for a week in the hospital and then for another month at home. No one knew if Baby was alive or not. We tried to make sense of conflicting recommendations from Ukrainian and American doctors. At the end of that month, the doctors told us it was a miracle Baby had made it, that only God had kept him alive. Medically, he should have died.

The pregnancy was stressful and painful, due to complications, but about eight months later, our precious Titus came along. I can’t express the joy and thankfulness we feel, looking at our little miracle.

When Titus was a week old, I woke up in the middle of the night with a high fever and violent chills. I was diagnosed with mastitis, a severe breast infection and told that I may have to quit nursing and have surgery. For the next month and a half, I battled mastitis three times, was misdiagnosed with thrush (another nursing-related infection), and had severe dermatitis.

Once the health problems were resolved, we were relieved to “get on with life as normal.” But as the weeks passed, “normal” didn’t seem quite right. I struggled with exhaustion and insomnia, woke up feeling like I was in a deep, dark hole, cried at stupid things throughout the day, battled with impatience and irritability. It wasn’t a bad day or even a bad week. I looked at my life – wonderful husband, healthy children, all our needs provided for – there was nothing to say I should be feeling the way I did. When Titus was ten months old, I was diagnosed with post-partum depression.

Around that time, we found out that my husband’s remote job, which had been our primary income, was being moved back to the States.

And then Josh went in for a routine physical. And they found cancer.

Thirty years old. A three-year old and almost one-year old. Married for six years. Cancer.

“God, we can’t do it anymore.”

Throughout all this craziness, my responses have not always been…well…ideal. I’ve gotten angry and questioned why God would allow things to happen. I’ve whined and complained and had little pity parties. I’ve given in to crippling fear and wanted to do nothing but lay in bed and hide from the world. I’ve wanted to quit…whatever that means.

On the other hand, I’ve also tried to do all the right things. Read my Bible, pray, go to church, have faith in God. Exercise, try to rest, eat well.

I grew up hearing about God’s grace, how we can’t do anything to deserve His love. But, still, throughout all these challenges, I’ve often thought, “God, You must be trying to teach me something. I’ll get it. I’ll read my Bible more. I’ll pray. I’ll have a good attitude…Then things will be ok.”

And then Josh said to me, “It’s cancer.”

And after a long day of impossible fears, I laid my head against the shower wall and whispered, “God, there’s not an ounce of strength left in me to believe. I can no longer “be strong and of good courage.” I’m tapped.

The next morning, I sat down with my Bible and devotional and actually thought: “Let the bartering begin.” “God, if I read my Bible enough, will you heal Josh? If I have enough faith, will everything be ok?”

And I began to read:

FAINT NOT!

How great is the temptation at this point! How the soul sinks, the heart grows sick, and the faith staggers under the keen trials and testings which come into our lives in times of special bereavement and suffering.

“I cannot bear up any longer, I am fainting under this providence. What shall I do? God tells me not to faint. But what can one do when he is fainting?”

What do you do when you are about to faint physically? You cannot do anything. You cease from your own doings. In your faintness, you fall upon the shoulder of some strong loved one. You lean hard. You rest. You lie still and trust.

It is so when we are tempted to faint under affliction. God’s message to us is not, “Be strong and of good courage,” for He knows our strength and courage have fled away. But it is that sweet word, “Be still, and know that I am God.”

Selection, Streams in the Desert: 366 Daily Devotional Readings– May 10

Speechless.

Nothing had changed. Every circumstance was the same. Josh still had cancer. We still had no idea what would happen. But, it was like a tangible sense of sweet relief passed over me – in all my fear, all my exhaustion, all my anger, I didn’t have to be strong. God says, “Just rest.”

I’m not going to lie and say from that moment I stopped being fearful or sad or even angry at times. I’ve had my rants and freak-outs and burst into tears in the most public, embarrassing places.

But that’s the point. It’s not about us being strong or being a “good Christian” (whatever that is!). It’s not even that we don’t have to do those things…we literally can’t. There’s a blessing in that, because we know the One who can be strong – who is strength personified. The One who gave His very life so that we – in these moments of desperation – could hear Him say, “Be still. Know that I am God. Just rest.”

Nicole Baldonado is a social worker in L’viv, Ukraine with her husband and two kids. They’re part of a church plant and serve in pastoral support, community building, and discipleship. Nicole also has experience in human trafficking response work. She loves travel and is always on the hunt for a new cultural experience. Having grown up abroad, she’s now fulfilling a lifelong dream of raising her own kids inter-culturally. Nicole writes weekly about life at jnbmission.com and can be found on Facebook at facebook.com/jnbaldonado.

The Mother Writer

Quick link: Blood, Sweat, and Words

I had a piece published in The Sunlight Press this week. I was traveling (college tours, yipes!) and am finally able to share it with you now. It is about my first published essay, a bloody nose, and being a mother trying to write.

My first published article arrived in my PO box in Djibouti three months after being printed. Rats had gnawed the corners of the box to get at Easter chocolates inside but the magazine, Get Born, was untouched.

The cover photo pictured a Djiboutian mother and baby standing in the downtown market in the pouring rain. I was in awe. My first story and it earned the cover photo. And, a photo of rain in Djibouti. Djibouti is a small, desert country in the Horn of Africa and at the time, it was in the middle of a drought. I wasn’t sure if my article or the rain was the greater miracle.

I stood in the post office’s open doorway to catch small wafts of steamy breezes and tucked the box and the rest of the goodies my mom had mailed between my elbow and my side. I held the magazine between my fingertips so I wouldn’t leave sweaty palm stains on the pages. I stared at it for a few seconds, then climbed into the car and drove home.

To read the rest, click here Blood, Sweat, and Words