Resilience

SNEHA DESAI: The wedding was two months away, and my dreams of walking down the aisle like a Bollywood bride were coming crashing down.

EBONY STEWART: I get in the car, I put my head in my hands, my eyes are twitching, my stomach hurts.

At this point I'm ready to cry big, loud, ugly tears.

BRENDAN BOURQUE-SHEIL: And now it's really starting to seem like the best review of my life is about to be followed by the worst review of my life.

THERESA OKOKON: Tonight's theme is "Resilience."

ANNOUNCER: This project is supported in part by the National Endowment for the Arts.

On the web at arts.gov.

Houston, the largest city in Texas, has surpassed New York and Los Angeles as the nation's most ethnically diverse metropolitan area.

Disasters like Hurricane Harvey in 2017 have taught us this city's ability to bounce back.

So it's no surprise that when we went to Houston looking for stories, we uncovered tales of resilience.

Tonight's tellers are bringing their true stories of moments when life tried to push them to their limits, making them bend, but it couldn't make them break.

♪ DESAI: My name is Sneha Desai, I live in Houston, Texas, with my husband and my dog.

I'm a clinical psychologist by profession.

I was born in Singapore and I moved to India when I was seven and that's where I grew up.

And I'm curious, is storytelling something that you've somehow always had as a part of your life?

Yes, so my, my grandfather was extremely fond of telling stories and he would bring all these little children's books for me and would pay me to read them and tell him the story back.

Um, and so I feel like, right from a very young age, I have been exposed to listening to stories and telling stories.

And what is it that you like so much about telling stories?

I love the fact that you can take people on a journey with you and it's almost like being on an emotional roller coaster.

And you learn so much about different people as and when they tell you stories, and I love to share my experiences with other people-- it's just so wonderful to find all these commonalities, even when we are all so different, you know?

♪ When my husband and I started planning our wedding in March of 2014 for the following fall, one of the top items on my to-do list was to lose weight because I wanted to look like a Bollywood bride on my wedding day.

However, I had not gotten into a gym in a very long time, so I decided to build my stamina by doing some online workout videos at home.

The morning after what I thought I had done a gazillion lunges, I woke up with some pain in my right big toe.

I dismissed it to nothing.

But when, after a week, things seemed to have gotten worse, I went to the podiatrist and he diagnosed me with tendinitis, put me in a boot, and sent me home with some meds.

After two months, when things had gotten worse, I called him again and he said, "Hm, I think you may have a broken bone.

"Okay, so let's make an appointment with the orthopedic doctor."

On the day of the appointment, I show up at the doctor's office.

He's busy, so his medical assistant examines my X-rays and tells me, "I don't think you have a broken bone.

I think you may have gout."

Gout?

Where did that even come from?

I started grieving the loss of my favorite foods and I started questioning, "Why me?"

But then I quickly sprung into action and made an appointment with a rheumatologist.

The rheumatologist took a look at my foot, which by now was swollen, oddly shaped, shiny, and purple, and he said, "I don't think you have gout, I think you have a neurological condition of some sort."

What?

I felt like these doctors were playing hot potato at a children's birthday party, and who was having fun?

It wasn't me.

And by this time it had already been four months.

The wedding was two months away and my dreams of walking down the aisle like a Bollywood bride were coming crashing down.

You see, in the last four months, I had not only worn the boot the entire time, I had also started using a wheelchair, a walker, and the meds that I had been put on made me put on so much weight.

Also did I tell you that this wedding was a DIY destination wedding?

And who was doing all the planning?

I was-- because my fiancé has zero organizational skills.

Besides, his family did not like me, and my mom did not like the fact that they did not like me.

So we had no support from our families for our relationship, or the wedding, or the marriage, even.

Also, I had no idea what was going on with me.

I was getting desperate.

In any case, this DIY destination wedding was weighing on my mind, but I decided to spring back into action and we walked into the neurologist office.

He was convinced that I had tarsal tunnel syndrome, and decided that I needed surgery.

Okay-- so there I was, I walked into the podiatrist office to discuss potential surgery.

Now when this very gentle and calm doctor approached me to touch my foot, I pushed him away with all my might with the anticipation of excruciating pain.

And he looked at me and said, "Sneha, I don't think people "with tarsal tunnel syndrome act this way.

"I think you may have what they call complex regional pain syndrome, CRPS."

"What?

What was that now?"

And he said, "It's a neurological condition.

Go look it up."

So we came home and I started doing my research and I found that CRPS is also known as the suicide disease.

It's a dysfunction of the nervous system.

It's a disorder so rare that even medical students learn about it only for 30 minutes in their entire curriculum.

It has no cure.

And most people with CRPS eventually become disabled.

My husband started weeping.

He called his grandparents for support.

But instead they said, "Why would you marry someone defective?"

End the engagement now."

He was heartbroken.

I, on the other hand, started welcoming the thought of gout.

And I started questioning, "Why me?"

But there was a part of me that felt like things were going to be okay.

And in doing more research, I found a doctor in M.D.

Anderson Cancer Center here in Houston who is an expert in CRPS.

Within hours, I made an appointment to get into his office.

The following week, he examined my leg and my foot, which by now had already shrunk into half their original size from a lack of use.

And he confirmed that I had CRPS.

He told me time was running out.

You see, if we receive intervention within the first six months of onset of symptoms, there is a chance that we could go into remission.

And I was at the five-month mark.

In the next three weeks, I received nerve blocks in my back.

I started physical therapy.

I started relearning how to walk in the swimming pool.

And I told myself that if I ever started walking again with no pain, I would never question my weight again.

I knew it was now or never.

I called my bridesmaids and I told them that I wanted to do a secret dance for my husband at the wedding reception, which by now was only a month away-- October 25, 2014.

I walk down the aisle looking like a healthy bride.

That evening, I wore a beautiful purple, green, and gold sari.

My husband and I, we take the horse carriage from the hotel to the reception venue, and there everyone was waiting for us.

And when we entered, they all applauded and my husband and I did a little dance and then we went and sat in the front.

The DJ starts announcing all the performances, the speeches, the songs, and then finally he announces my bridesmaids' names.

They get on the dance floor, they start a dance, and then within ten seconds, they come grab me and I get on the dance floor and I start dancing the secret dance.

My husband's jaw dropped, and that was truly a magical moment for me, one that I will never forget.

What's happening now?

Do I still have CRPS?

Yes, I do.

Do I have good days and bad days?

Yes, I do, I have many bad days.

Have I put on weight?

Absolutely, 15 pounds.

But I am a warrior and I'm going to continue fighting this fight until I win it.

♪ BOURQUE-SHEIL: My name is Brendan Bourque-Sheil.

I'm a writer and theater maker and teaching artist for the Kinder High School of Performing and Visual Arts in Houston, Texas.

That sounds like a very interesting life.

So can you tell us the first time that you told a story on stage?

I think probably I would have been somewhere around the age of middle school, and it probably would have been a story about playing bass in my school orchestra, and, uh, I'm sure everybody was thoroughly bored out of their minds because I didn't know what I was doing yet.

But the actual act of storytelling, I realized, "You didn't nail it that time, but the act itself is thrilling.

So imagine if you did it well, wouldn't that be great?"

And so I've been trying to do it well ever since.

Yes, indeed, wouldn't that be great?

So what is so interesting and thrilling about storytelling for you now?

I think life is so complex and there's something about boiling it down to stories that feels like distilling a lot of complex information into some kind of essence of who you are.

And it helps you not only figure out what's happened, but, you know, how you think of yourself.

I think we are the stories we tell about ourselves and we change when the stories we tell about ourselves change.

♪ So a couple of years ago I was working on this play and everyone in the cast and crew was fantastic, except for the playwright.

He was a nice guy, he tried really hard, but he just wasn't getting the job done and he probably should have been fired.

But I'm kind of glad he wasn't because... he was me.

I was 29, it was my third professional play working for this tiny theater company in Houston, Texas.

The play I'd done right before this one had got me my first-ever rave review from a critic.

And I think the fear that this new play wouldn't live up to the last one just haunted my writing process.

I was terrified of rehashing what I had done last time, but I was just as scared of straying from the one thing I'd ever done that had worked.

And this internal fear turned into an external nightmare for my cast and crew because all through rehearsals, I kept making big, like, tectonic rewrites to the script.

Basically, every time the cast got a new scene under their belt, I would scrap it and throw five new pages at them.

And I half-expected them to quit the show, they had every right to, but instead they showed me all the goodwill in the world.

Still, no amount of goodwill from them could change the basic fact that it's kind of hard to memorize a play that's constantly changing.

And that's how we found ourselves on the night of final dress rehearsal, still never having made it all the way through the show.

So we all left just praying that opening night would be our first time to get to the end of the play, but just in case something went wrong, the actors came up with this backup plan.

The plan was if they ever got totally off track, one of them would be like, "Guys, I'll be right back, I have to get something from the kitchen."

And then she'd run backstage, she'd check her script, she'd figure out where they got lost and she'd get the show back on track.

The very fact that they felt like they needed to plan like this was terrifying.

But I was like, "All right, guys, do what you gotta do, you got this, break a leg..." Ah, sweet Dionysus.

So who shows up to watch opening night?

No one, really, just like friends and family of the cast, a couple theatre staff and oh, wait, a professional critic, probably the only critic this show is going to get.

So whatever they write is going to be the official public record of this play, and now it's really starting to seem like the best review of my life is about to be followed by the worst review of my life.

I decide I'm too nervous to watch, I go backstage.

As the show starts, I'm listening with every part of my body clenched, but it's actually sounding okay.

The first 12 minutes go chugging along, and then something happens-- an actor answers a line from page 12 with a line from page 35.

And the other actor, not knowing what to do in the moment, answers with the next line from page 35 and the first actor, not realizing anything's wrong yet, answers that with the next line from page 35.

So now... We're doing page 35, which means we just jumped clear over the entire middle of this play.

And if things keep going like this, the show is going to be over in about 15 minutes along with my career.

So we need to find our way back to page 12.

But with every new line spoken from 35, it becomes harder to fathom how.

By this point, the actor who initiated the line jump realizes something has gone terribly wrong.

I hear this fear creep into her voice.

She's in the middle of a monologue and she just sort of trails off for maybe three, maybe four, maybe five days is what it felt like.

And at this point I think, "Okay, there's no walking this back, "we're going to have to stop the show, we're gonna have to refund everybody's tickets."

But before we can do that, I hear her say, "I'll be right back, I have to get something from the kitchen!"

And she runs backstage to where I am and she leans in and whispers to me, "What do we do?

And I whisper back, "I have no idea."

Because I am not the playwright of this moment, she is.

I see her realize this and when she does, this wave of calm washes over her.

It's like watching the eye of the storm.

She looks at her script, she figures out where she got lost, she knows what to do, she's ready to go back out there-- but remember she has to invent a reason why her character went to the kitchen, so she scans the backstage area, she locks eyes on this giant like human-head-sized grapefruit, she grabs it and she sprints back out on stage and for a second, I'm not even scared anymore.

I'm just curious, like, what is she going to do with that grapefruit?

I don't know what play this is, but I think it might be better than the one I wrote.

I hear her plop it down and say, "See this grapefruit?

"It's from a tree my dad planted when I was a kid.

Anyway..." And then she goes back to page 12 where she jumped.

Phew.

So now the show is back on track.

Only one question remains.

What happens when we get back to page 35?

Are they just gonna repeat all those lines again?

Somehow no, in a brilliant on-the-fly edit, they jump clear over them, they get to the end of the play, and I get to tell them that a professional critic was watching and now it's their turn to have a mental breakdown.

I watched one of them start laughing hysterically and the other one just crawl under a table and stay there for a while.

I look at this group of artists who have bent over backwards for me and who are now about to get publicly roasted because I put them in an unwinnable situation.

And I feel like tonight I've blown up all of our careers.

But the next day I get a text that says, "Hey, congratulations on the rave."

I'm like, "What kind of sick joke is that?

Congratulations on the rave..." but no, I check the review.

It's actually good.

The critic calls the play, "an undeniably compelling character study that hints at entire worlds of emotion."

She praises everyone involved.

She does mention it sounds like somebody dropped a line at some point, but that's like half a sentence in an otherwise glowing review.

We got away with it.

(exhales) It's been about two-and-a-half years since this happened, and I still have that review posted at the top of my résumé.

I find it keeps me proud and humble at the same time.

I think about this story more than any other in my career because it's the reason I know I'll never get bored with theater.

Because when you're watching a play start, that's like watching an airplane take flight.

Whether or not that plane is going to make it back to the ground is not in doubt-- guaranteed, it will.

The question that keeps things eternally interesting is how.

♪ STEWART: My name is Ebony Stewart.

I'm 38 years old.

I grew up in Baytown, Texas, but I live in Houston, Texas.

I'm a poet, a playwright, a writer, a performer.

I'm also a recovering perfectionist.

And as a professional performer, what do you feel like is the significance of storytelling in society today?

Yeah, I really want for storytelling to be relatable, and it is.

I love that you can feel someone, you know, through their words, through a screen, and, you know, just being in an audience.

Storytelling has a way of bringing everybody in, and really exposing us to emotions that we needed permission to have or stories that we didn't ever think we would hear or tell.

So, yeah, I really appreciate that storytelling does that.

When you consider the story that you're telling us today, what is one thing that you hope the audience takes away from the story?

One thing I would like for people to take from this story is... to take care of yourself.

You deserve it.

♪ The life of a performance artist, playwright, poet, writer is so fun and exhausting.

On average I perform about 50 to 80 shows per year nationally and internationally, which is a lot of traveling.

I remember I was coming home from one of my trips and my partner of six years broke up with me.

He was walking into the living room the same time as I was putting my bags down and taking a seat.

He sat across from me and I could tell something was wrong.

Without even looking me in the eyes, he said he's not happy anymore.

I'm never home and whatever time I made for us wasn't enough.

He was so matter of fact.

Like I didn't deserve any more thought.

I do so much for everyone, so... to hear that what I'm doing isn't enough hit different.

One moment you're sharing your life with someone and then all of a sudden... you're not.

I remember responding with, "I just want someone to commit to not giving up on me."

I was really sad, I cried a lot.

But the thing about high-functioning depression is that you just have to keep going.

In my mind, my life and all of its balancing acts, was no different than that of a teacher, a surgeon, a stay-at-home parent, right?

Like, who doesn't have a to-do list and their goal isn't to get the things on their to do list done?

So on top of my regular scheduled program, I now also have to pack, move, find another place to stay.

Two months later, I have a miscarriage and I don't tell anyone.

Not my mom, not my best friend, not my therapist.

No one.

I thought they would think it was my fault because I don't get enough rest and I didn't want to hear that.

Sometimes, my idea of resilience is to suffer in silence.

I tell myself it's not the right time for kids.

I don't know if I can afford kids.

I don't even know if I want kids anyway.

Plus, how is this not yet another reminder of something else telling me I'm not good enough?

I go to the urgent care and the physician tells me to rest and follow up with my OB-GYN.

But I don't really have time for that.

Sitting still makes me feel guilty because there's always something to do and someone to prove wrong.

About a month or so after that I started having car trouble and my heart sinks into my stomach because car stuff can be pretty stressful.

Plus, I have a really complicated relationship with money, like, I know I have money, I just never know if I have enough.

My mom comes to pick me up from the repair shop and I get in the car, I put my head in my hands and my head is spinning, my eyes are twitching.

My stomach hurts-- at this point I'm ready to cry big, loud, ugly tears, but... before I can, my mom says, "Sometimes I want to stop and have a pity party too, but it never fixes anything when you still got stuff to do."

And I just want to have a moment to fall apart.

But I don't.

I tell myself, "Even though being a Black person can be taxing, "unprecedented amounts of stress should not keep me from succeeding."

I'm thinking, maybe it's through hard work that I, as a Black woman, also get to exist... and survive.

I sit up, I take a deep breath, I stuff the tears back down my throat... And continue my life on autopilot.

A few months after that, I find myself Googling "how to know if you're having a nervous breakdown" because I'm fighting back tears and... the headaches are getting worse and lasting longer.

My blood pressure reads 142 over 96.

By medical definition, I'm currently at risk of having a stroke.

The physician this time tells me, "Even though resilience comes as a result of adversity, "stretching yourself to capacity is not a healthy or sustainable measurement of self worth."

The repeated trauma and stress are having real effects on my physical, emotional, and mental health.

Resilience isn't always about how much you can overcome.

Sometimes, it's how much grace and patience and time and love you can stop to actually extend to yourself.

Okay, so I don't know if I've learned the lesson, but now I don't just consider, "What is the worst thing that can happen?"

Now, I think about, "What is the best thing that can happen if I just give myself more than a moment to rest?"

Because the saying, "Whatever doesn't kill you, makes you stronger" is a lie.

ANNOUNCER: This project is supported in part by the National Endowment for the Arts.

On the web at arts.gov.

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