Healing

Healing

Transcript for Healing (full episode)

It's 90.1 KZSU.

Every day when I wake up and wash my face, I close my eyes.

This is not to avoid getting soap in my eyes, but to avoid the mirror.

As a child, I had more facial hair than the other girls.

But now at 20, I find myself with a sudden growth of hair on my cheeks, chin and neck.

While I was a teenager, I had different ways of masking this.

But as of last year, I'm a formally initiated sick.

You might have heard it pronounced as seek.

And that means that I've committed to keeping my hair from head to toe intact and untreated.

Last week, I found out that I have elevated male hormones.

It's hard to have signs of an illness on my face.

People look at me differently.

I sense that.

And it's changed the way I interact with people.

It's changed me.

But how do I make peace with this new normal?

How do I experience being whole no matter what physical state I'm in?

How does anyone?

Lately, after I wash my face, I've been sitting in my room with the lights off, my legs crossed, my eyes closed, and reciting repeatedly with each breath, Vaiguru, a name of God in the Sikh tradition.

This is a time when I put my sense of self aside and dedicate my mind and body to remembering God, whose Sikhs believe is in everyone and everything equally, and when wholeness is restored.

You're listening to State of the Human, the radio show of the Stanford Storytelling Project.

I'm Preet Kaur.

Each week, we pick a common human experience, like believing or control, and bring you stories that explore and deepen our understanding of that experience.

Today, we're bringing you stories about healing.

The word heal comes from the old English word, helan, which literally means to make whole.

And before the modern era, this meant treating body, mind and soul in equal measure.

Healing meant more than fixing and referred to more than the physical body.

It meant restoring a sense of wholeness to a person or even a community.

In today's show, we'll hear two stories that explore this older sense of healing.

In our first story, a Bay Area woman diagnosed with breast cancer finds healing through a complimentary medicine modality at Stanford Hospital called Healing Touch.

In our second story, a Stanford student living with an incurable disease finds healing in an encounter with the ocean and one of its creatures.

Each of these stories explores the question, how do we heal when our bodies are irrevocably changed?

When you get cancer, everything changes.

Cancer has a way of cracking normal right open.

Each person's story is different, but most patients go through chemotherapy, radiation or surgery and sometimes all three.

The goal of treatment is to tilt the odds of survival in your favor.

Chemotherapy drugs and radiation kill cancer cells, but they also kill healthy cells, which can lead to all kinds of side effects, nausea, fatigue, hair loss being some of the common ones.

Even so, most people receiving a cancer diagnosis are willing to endure rigorous treatment plans in order to improve their chances of beating the disease.

Patients receiving cancer diagnoses today have better survival rates than ever before, but even with modern medicines, arsenal of treatment options, we tend to fall short on one aspect, healing.

How do patients heal?

Not just from cancer, but from the trauma of fighting it.

To support cancer patients through their healing process, Stanford Hospital offers a complimentary therapy called Healing Touch.

Healing Touch is a kind of energy healing.

Sounds a little woo woo, I know, energy healing, and yet it's being practiced at one of the highest ranking medical centers in the nation.

Producer Taylor Shoolery follows the story of Carolyn Helmke as she explores cancer treatment and the complimentary therapy of Healing Touch.

It was 2005 and Carolyn was working in the office of land management at Stanford University.

It all started when her coworker, Debbie, was diagnosed with breast cancer.

Debbie, Catherine and I, we were all part of this grander department called Land Buildings and Real Estate.

This is Carolyn.

And as a weird coincidence, all three of us played on the department softball team and his co-ed softball team kind of beer league-ish and we would see each other.

So Debbie, I don't believe was playing that year, but she went on a disability and I had run into one of her coworkers on campus who said, well, Debbie has breast cancer.

So Debbie, that's one.

And then it was not that much longer than that, that Catherine did a self-exam and then she worried and got a mammogram and then she found out she had cancer.

Catherine, that's two.

There was a softball team party and Catherine came and she had just gotten her lumpectomy and she was wearing kind of a low-cut shirt and you could see the bandages and stuff.

And that was on a Friday night and I just kept looking at her and I kept thinking, I've got to check my breast and I've got to get a mammogram.

I remember lying in bed thinking, okay, you have to do this thing now, you have to feel your breast kind of thing.

And I found this lump, and I thought, oh, this is not good.

So Monday morning, I called Kaiser, and I kind of felt like I was being a good patient.

I'd found a lump, and I was going in, and they were gonna assure me that that was nothing.

Okay, so this part is really painful.

I'm sitting there, and they get a mammogram, and then they're like, well, you go sit over there.

And then I start seeing other women are coming and going, and I'm thinking, how come I'm still sitting there?

And I just started crying, and somebody kind of saw me and came and said, are you okay?

I said, you think I have cancer, don't you?

Everybody here thinks I have cancer.

And they went and got the radiologist, and she kind of said, I don't like what I see, I wanna do a biopsy, and I think I can get you in sooner.

And I just lost it.

Friday, they called me and said, she said this is definitely cancer.

Debbie Catherine Carolyn.

According to the National Cancer Institute, only about 1.5% of women in their 40s develop breast cancer.

And these three friends all happen to be diagnosed within months of each other.

So I was diagnosed in October of 2005.

Catherine was about three months ahead of me.

She was very sisterly to me, very open about the pros and the cons, and she's a planner.

She could say, well, this is how they do this and this is how they do that, because I think the reality is most people don't really think about things like disability and how their insurance works unless they actually have to use it.

And then it becomes a different story.

The first thing I remember was, I just broke into tears.

Almost stage three breast cancer.

Trying to grapple with this devastating news.

Heard the news that I am resistant to the medicine that can cure me.

They're at the top of their game, you know, their lives are busy, they've got kids, they've got careers, they've got it all going, and they're, you know, making it happen.

And then bam, breast cancer.

I was okay with me dying.

But the thing that I couldn't, I couldn't deal with is my son not having a mother.

People come and they'll always say, well, I just want my life back.

And very quickly, they realize there's no going back.

There's a new me that's happening here.

It's like a transition no one would choose.

After receiving a diagnosis, the next step is coming up with a treatment plan.

Surgery, chemotherapy, radiation.

Carolyn had it all.

I had actually had an okay experience, as it goes, with surgery.

I'd had an okay experience with chemotherapy, and just as it just happened that radiation was very hard on me and I didn't expect it, I didn't know that was what was gonna happen.

It was around this time, when Carolyn started receiving radiation, that she realized traditional cancer treatment might save her life, but she was losing something of herself in the process.

Radiation, like the first time they mark you up for it, they literally, I mean, I'm lying there, this person marks me up with a magic marker and all that sort of stuff, and they don't even wash it, so you get up and you look in the mirror and there's just all these graffiti on you.

It's like you're this piece of meat or something, like they can't even, they're just like.

Oh yeah, you know, everybody's got some job.

But no one, they're not saying, wow, we just really hope you heal from this experience.

They just are kind of like fix it, fix it, fix it, move on.

But feeling dehumanized was only part of Carolyn's struggle.

As her doctors were moving forward, Carolyn was feeling the side effects of treatment more and more.

Any treatment that's this intense, it's cumulative.

So, you know, the first few days, I right away started feeling tired, and then it got worse and worse.

They said, oh, well, yeah, well, 20% of people have a really bad reaction to radiation.

As Carolyn's cancer treatment moved forward, she noticed other moments when people could fall through the cracks.

There's nobody connecting the dots, and there is just nobody who's part of, are you really going to heal from this?

You know, what's the big plan here?

You know, I mean, they just kind of were like, we'll go home, and they don't even know if someone's with you necessarily.

It was a very long treatment.

I had a double mastectomy.

Most days, I just had no energy.

I mean, I wanted to have some energy every day, at least, to talk to my son, to talk to my family, to talk to my husband.

Six months of hardcore chemo, six weeks of radiation, an 18 inch blood clot, and that blood clot became infected with staph.

I ended up getting shingles, you know, because of such a weakened immune system.

Sometimes my pain got so severe that actually taking more of these pain medicine got me into a more severe pain cycle.

A full hysterectomy with the removal of the ovaries, and that put me into full-blown menopause.

It seems like over-medicating myself just didn't work at all.

So it was a really trying couple of years.

It was during that rough patch with radiation when Carolyn's friend Katherine first told her about Healing Touch.

I was sitting on my bed, and Katherine called me, and we were just chatting about all the different things going on with her cancer and my cancer, and she mostly wanted to convey to me that if I didn't get on this waiting list, I may never be able to do it.

That waiting list was for the Healing Partners program.

Healing Partners matches patients with Healing Touch practitioners.

I grew up in Anne Arbor, Michigan.

I went to college in Madison, Wisconsin.

I lived in Berkeley for many years.

I mean, I've been around these people who want to believe things that I just don't think are true.

That if you blow on a feather every day, that the birds are going to save you or something.

I mean, I've been around that a lot in my life, and I just don't buy it.

Carolyn was soon paired with a woman named Beth, whose studio was walking distance from Carolyn's house.

She was just sort of a quiet person, and the room was very, just kind of peaceful and nice, and just had a really good feeling about it, and we could have a conversation.

Carolyn started working with Beth when she was reaching the most difficult time in her radiation treatment.

Not many people think of me as someone who like sort of shows up somewhere and bursts into tears, and that's what it was like.

I would get there and think, I just can't do this another day.

But Carolyn's healing partner, Beth, gave her some tools to manage the emotional weight of her radiation visits.

The healing partner's person was like, well, wait a minute here.

You are really having a hard time processing all this stuff in you and your body is just shutting down and what can we open up and how can we help you accept this treatment, but also be able to move forward when it's done and feel like it wasn't one big trauma that didn't get healed in any way.

Okay, we're gonna pause from Carolyn's story for a moment to get some of the nuts and bolts.

Healing Touch is an energy healing therapy.

Energy healing is used to address a wide range of ailments from anxiety to heart disease to cancer.

And when we talk about energy healing, it's important to note that we're specifically talking about therapies performed by trained practitioners.

The various modalities have different historical backgrounds, though most of them stem either from traditional Chinese or Indian medicine, and they employ different techniques and vocabularies, but they all seek to tap into the body's hypothetical energy field to facilitate emotional, mental, spiritual and physical healing.

Healing Touch is really about a provider clearing and balancing an energy field so that the person can heal themselves.

This is Carolyn's friend, Catherine, Catherine Palter.

Catherine's hair was still growing back when she decided to become a Healing Touch provider herself.

Actually, this is pretty common.

For many people, the experience of Healing Touch is so transformative that they take the classes and the patients become the healers.

We have electrical fields and magnetic fields in our bodies and there is energy that surrounds us.

The chakra system really deals with the seven major chakras.

You may be familiar with these if you do yoga.

When they're open, they're more able to accept energy from the outside and when they're more compromised or closed, they can't take that energy into the body.

And the body does want to use that energy to self-heal.

Once a practitioner has a sense of a person's energy flow, there are a few techniques they can use to clear the blockages.

We usually start with a full body technique which connects energy from chakra to chakra.

And there's also another technique that is a sweeping motion through the field, it's off the body, hand over hand, and that can remove whatever is congesting in the field.

If you take your thumb and your first two fingers and you point them out together, and you treat that as sort of a pen, and you draw it across the palm of your other hand, but not touching.

Generally, you can feel energy in the palm of your hand that's coming from your fingers.

When I describe Healing Touch to my friends, they always give me this look like, oh yeah.

They were very left brain and scientifically oriented and never would have considered doing anything like this.

You know, I know that we're a matter of blood and skin and bones and muscle, and you can fix problems by moving things around.

My background in terms of education is hardcore science, geology, chemistry, physics.

My life before Healing Touch was very academic.

Data, data, data, and data being used to prove the existence or the non-existence of things.

Totally foreign to me, totally.

I come from a family of scientists and all of this seemed very woo woo and very unreal.

The person receiving the Healing Touch remains fully clothed.

They usually take off their shoes and glasses.

A Healing Touch session begins with a conversation to check in, and lasts about an hour total.

The session itself is sprinkled with these little moments, moments that add up to structured emotional care.

I'd be wearing, let's just say, sweatpants, and I would lie down on the table, and invariably one of the legs would have written up a little bit, they would literally take the pant from maybe the knee and pull it down, and straighten it, and pull up your sock a little bit.

If you think about it, it's very uncomfortable for an hour to be lying on a piece of fabric that's jammed into your shin.

So it's just sort of a nice way to sort of, okay, we're getting you together, we're starting this.

None of your clothes are bunched up under you in an uncomfortable way.

It's just all very comfortable, and pleasant, and orderly.

I immediately felt this trust.

One of the tough things is when your hair falls out, if you're doing chemo.

And part of the Healing Touch techniques involve touching the head.

It is often a very intimate experience because you're vulnerable.

And a sense of being allowed to be totally vulnerable, totally seen, totally myself.

And getting to the place where you're no longer bothered and you can trust and you can reveal, and it is a totally safe space.

That's huge.

It is huge.

And some of it is what we call healing presence.

So just making sure that you are in the right place, centered and grounded, because whatever is going on with yourself is what you're bringing to other people.

And I think that's probably the biggest part of it all.

One of the revelations for me about Healing Touch is the difference, I always get emotional about this, between healing and curing.

We're not curing someone.

We're allowing them to let their bodies do what their bodies need to do.

After Carolyn's cancer treatment was over, she decided to have her ovaries removed to reduce the risk of reoccurrence.

You know, it's a big deal having your ovaries taken out.

I mean, I was pretty convinced I was never gonna have children, but you know, it's another surgery, it's another going in there, it's another signing a bunch of forms that say, oh, you might die if they're in the surgery.

Guess what?

If you read the fine print.

Carolyn asked her friend, co-worker, softball teammate and Healing Touch provider, Catherine, to help prepare her body and her mind for surgery.

We talked about the surgery, I asked her if she would help me, she agreed.

We kind of came up with sort of a treatment plan of how many times I would come and what we were focusing on and definitely strengthened our relationship and I'm sure I told her things I haven't told anybody else about the experience of losing my ovaries and making this choice and being afraid of another surgery.

Catherine was giving Carolyn a Healing Touch session to prepare for surgery.

She was doing something rather and it had to do with my heart and I don't really remember why I was focusing on my heart but kind of when she was done, I said, this is the weirdest thing, Cathy, but I feel like there was some kind of thing going in a circle and she's like, oh yeah, that's what I was doing.

I was making it go in a circle and it was just so weird to feel in my body that there was this circle happening around my heart and that she actually did that and it wasn't just this thing that I made up in my head.

I mean, she didn't say, did you feel that little circle?

And she said, no, that was what I was trying to do, was get everything moving.

It's almost as if they leave their body to get through the treatment.

Oftentimes they'll just close off that part themselves and not feel it anymore.

Like all my muscles that were tensed up because of the pain just seem to be able to relax and the pain will just subside during a session.

Because so many of us in this culture have a lot of chronic stress and a lot of chronic holding, of course, the more you get over time, the more it becomes kind of ingrained in your system.

Before Healing Touch, I actually didn't realize that there's a lot of resources within my own body that I could tap into to help myself.

Going through some sessions of Healing Touch, people feel as if they've reconnected with themselves.

They feel self-empowered.

I wake up of the session very, very relaxed, no stress.

For one hour, I forget what I have, okay?

It's that feeling that in that hour, I'm normal again.

The firsthand accounts we've heard tell us a lot about the impact Healing Touch has on the healing process, but we were also curious what the scientific community thinks.

One literature review, which was published in the International Journal of Behavioral Medicine, synthesized the research from studies on biofield therapies, including Healing Touch.

The review concluded that, quote, There is equivocal evidence for biofield therapy's effect on fatigue and quality of life for cancer patients.

There's also evidence that these therapies have an impact on reducing pain and anxiety.

The review evaluated studies based on things like strength of data analytics and methodology and determined that the studies overall were of medium quality.

From a scientific perspective, there are a lot of unanswered questions about biofield therapies.

So what is it that motivates hospitals to provide Healing Touch as a resource to their patients?

I'm Jim Batterson and I was the Executive Director of Women's Health in the Stanford University School of Medicine.

Medical executives like Batterson emphasize the value that therapies like Healing Touch can have in supporting patients through the treatment process.

For something to be important, doesn't necessarily require that it aim to be a cure for something.

There are a lot of things that can benefit patients as they're dealing with a diagnosis.

Thank you for watching.

Carolyn received Healing Touch from a number of different providers during her cancer journey.

By 2008, Carolyn was in remission.

She had just moved to Chicago and was about to have a session with her most personal Healing Touch provider yet, herself.

I moved to Chicago, and I moved my dog, and I moved all my stuff, and I was leaving on one day and starting a job on another day.

So I chipped everything to my cousin's house where I was gonna be living.

I got in bed and I was just shaking, and I thought, okay, okay, I can do this thing.

Back when Carolyn was working with her providers in California, she learned to perform Healing Touch on herself.

I would touch my ankles and then touch my knees and like, you know, for a few minutes each time and just kind of bring everything home.

But when I was in this very low spot, I was like, there is a way to calm down.

There's just this thing, and it was so calming.

And I walked through it, and then I was able to fall asleep.

When Carolyn was first diagnosed, she turned to her friends who were in the midst of similar battles Debbie and Catherine.

We asked others for advice as well.

As long as the energy allows, try as many things as you possibly could, and stick with the ones that work for you, and just try everything.

It will be that one protected hour each week that is your own.

I think it's vital.

And I don't think it's just sort of an extra, and it's a little luxury, and I think it's vital.

You can take your game face off.

You don't have to be brave for anybody else.

You can even take your wig or your scarf off, if you choose.

You get that hour each week to receive.

Part of what we do is we teach people how to take care of themselves.

But the one thing that is always going to be true is that the love that you're going to receive is going to be a tsunami of love, and you're going to have to learn how to accept it.

You know, think of it as one day at a time.

It's not a mountain.

It's simply a precious moment in each day, where you disengage from out there, and it slows way down.

So much about cancer is unpredictable.

Even with all of the Google-able statistics about survival rates, there is just no crystal ball to tell what the future holds.

And the very difficult reality is that cancer claims a lot of lives.

In 2013, Carolyn and Catherine's friend and co-worker Debbie passed away.

Carolyn and Catherine found each other at her service.

You know, we stood next to each other.

Debbie's husband read this thing about how Debbie had said that something good that had come out of her cancer experience is that she had created two survivors, and that was me and Cathy.

And we just both started crying because we just felt so sad.

This woman who we had started with, she helped us get help and find our cancer and get it taken care of, and then her cancer took a different path than ours did, and we both cried a lot at that event and felt really sad.

It's just the way things happen.

My mother had died when she was 54, and I grew up with breast cancer, and I spent my whole life thinking I was probably gonna die when I was 54.

About two, three years ago, it dawned on me, I don't think I'm gonna die when I'm 54.

And it really was like this epiphany, I'm not even in treatment anymore, they don't wanna give me anything else.

And I sort of thought, what am I gonna do?

It's been a decade since Carolyn's initial diagnosis, and she's not just a survivor, she's thriving.

She's asking the questions that so many of us rush right by.

What exactly do I want out of this life?

Healing Touch helped Carolyn learn to tune in to herself, and to open up to the expanse of possibilities ahead.

To me, the Healing Touch experience is the healing side of it, which in our culture, in our medical system, it's not part of the story, it's something you just have to deal with yourself, and figure out if you can take the time to have ways to take care of yourself.

And this is someone helping you with that.

You're learning how to help yourself understand what these energy centers are in your body and why they should be open and not closed.

So it's a way to learn about your body, and a way to consider healing beyond what typical medical world thinks.

This story was produced by Christy Hartman, Taylor Shoolery, Bonnie Swift, Alka Nath, and myself, Preet Kaur, with help from Julie Morrison and Will Rogers.

It featured original music by Man of Suit, and additional music from Chris Zabriskie.

Thank you to the patients, families, and providers who share their stories about Healing Touch.

Carolyn Helmke, Catherine Palter, Elizabeth Helms, Sue Kegel, Diane Wardell, Margaret Schink, Maggie Burgett, Margot Baker, David Wolf, Maria Cacho, Rosa Fuerte, Katie Telemontes, Melissa Anderson, Marilyn Guitas-Byrne, Laura Pexton, Anne Proctor, and Jim Batterson.

With most types of cancer, there's usually some hope of beating the disease, of survival, but with some diseases, there isn't a cure yet.

Cystic fibrosis is one of those.

It's a genetic disorder that slowly erodes the health of the lungs and other organs.

Mallory Smith was diagnosed with cystic fibrosis when she was three years old.

She lives in a time and place where technology and medicine can significantly lengthen her life.

But even so, there's still no cure for cystic fibrosis.

Mallory has had to learn how to heal, mentally, emotionally, in spite of her steady decline in lung function.

In our next story, Mallory Smith investigates the relationship between her illness and the place where she finds peace.

In the process, she finds the strength and grace to ride through the turbulence of her disease.

It's 2014 in Stanford, California.

My lung function is 40%.

Now big breath in, blow.

Keep blowing, just a little more, just a little more.

Breath in deep.

In my room in the B1 ward of Stanford Hospital, I've just finished my pulmonary function test.

A mural of white butcher paper hangs on the wall reading, We love you Mallory, with marker decorations of flowers and squigglies and spirals.

I pick up a book and listlessly turn a few pages before putting it down again.

I'm waiting for the infectious disease team to do their morning rounds and for the pulmonary team to see the results of my lung function test.

I've been in the hospital for 19 days now.

When I was three, my mom was pregnant with her third child.

I was pushing to name her Chomperina after my favorite character in The Land Before Time.

But one day, my mom told us that Chomperina wouldn't be coming to live with us.

Her doctors had told her to terminate the pregnancy.

My would-be younger sister had cystic fibrosis, the number one genetic killer of children in the United States.

The doctors said it wouldn't be fair to bring a child into this world, knowing that it would suffer and probably die within a few years.

I was three at the time.

The next day, I was tested for cystic fibrosis.

And it turned out I had the disease too.

When you have CF, it's like the inside of your body is the battleground for a war of aggression that's waged at the level of your DNA.

Since it's a progressive disease with no cure yet, CF usually becomes a stronger and stronger foe as you grow older.

Over time, it expands its military occupation to more organs and causes worsening damage to the native physiology it's attacking.

It operates like this.

A defective protein caused by the cystic fibrosis mutation interrupts the flow of salt in and out of cells, which makes thick, sticky mucus build up in the lungs, pancreas and other organs.

In most cases, the vicious cycle of chronic infection, inflammation and scarring in the lungs eventually leads to death from respiratory failure.

CF isn't a disease that you can forget about until you get sick.

It's the kind of disease you're fighting every minute of every day.

Its armies gain on me with each passing year, with the quantity and severity of complications snowballing as I get older.

When I was three, when I was diagnosed, I started doing hours of chest percussion therapy and breathing treatments every day.

Okay.

By the time I was six, I was an expert pill swallower, stomaching 40 to 60 pills a day.

There were antibiotics, inhaled bronchodilators and mucolytics and corticosteroids, digestive enzymes and other drugs to protect my lungs, sinuses, pancreas, intestines, liver and bones.

My parents tried to make all of this fun.

They called the treatments astronaut because the contraption looks sort of like a spacesuit.

And we played board games and had friends over to pass the many hours I spent hooked up to a machine.

My life changed forever with the diagnosis, but in 1998, when I was six years old, we discovered something that seemed to work better than any drug.

It was 1998 in Maui, three years after my diagnosis.

My lung function was still 100%, even though I had the typical CF symptoms and needed to follow the full treatment regimen.

I was with my family for our annual vacation.

It was mid-morning, and my older brother Micah and I were sitting in the wet sand.

He would reach into the muck to collect sand crabs and then present me with the crawling handful to watch my squealing reaction.

We were digging our hands and feet down and holding on each time a wave broke so the rushing water wouldn't knock us over and carry us away as it sloshed farther and farther up the beach.

Each time the water swept around us, we yelped, a little bit cold and a little bit exhilarated.

My dad came down to the edge of the water.

It was time for him and Micah to go swimming, out really deep, my brother called it.

Micah asked, will you come with us?

And I said, yes, but daddy, you can't let Micah try to push my head under water.

I was a really good swimmer, but I had two equally rational fears.

First, that the salt would burn my eyes.

And second, that an evil sea creature would pull me beneath the surface and bury me.

When we got to the out really deep part of the ocean, a whole 10 feet from the shore probably, I swam around with my neck craned up toward the sky to stay above water.

When the first wave came, Micah and my dad went, awoo-ga.

In my family, that means they dove under the wave and held onto the sand until the wave passed.

I was anxious when they stayed under the water for a few extra seconds to hear the humpback whales singing.

That day, my dad convinced me to put my head underwater and go awoo-guying with him and Micah for the first time.

From the first wave I dove under, the underwater world felt like some place I was meant to be, a place I needed to be.

I dived down to the bottom and grip onto the sand with all my six-year-old might and stayed just long enough to hear the whales.

And then I'd emerge coughing and sputtering and blowing the saltwater out my nose.

And when we got out of the water two hours later, my parents noticed something I wasn't even conscious of at the time.

That I was coughing more than usual, a rattling, wet cough.

But by the end of the trip, after being out in the really deep every day, I wasn't coughing at all.

I was symptom-free.

We didn't understand why at the time, but we kept going back.

Because there was something about being there that just seemed to make me healthy.

In the early 1990s, researchers figured out that surfers in Australia, with CF, live 10 years longer than other patients, and they wanted to know why.

They discovered that saltwater actually hydrates the thick, sticky mucus in the lungs we spend hours a day trying to get out, which makes it easier to keep the lungs clear of infection.

Now, I inhale a saltwater solution through a nebulizer for 45 minutes a day.

It's one of my most important treatments, and I feel it when I skip it.

But throughout my life, I've also used Hawaii as a natural delivery method for one of the most effective therapies that exists.

Since I learned how to dive under the waves and listen to the humpbacks that day when I was six, I've spent my life in the ocean and in the outdoors.

It makes me live better and longer.

And these were the only sources of healing I thought I could rely on forever.

I'll never become resistant to the weather the way the ocean penetrates my deepest airways and rattles the sticky phlegm.

A mega dose of clean, warm air has no harmful side effects.

It was 2004 in Los Angeles, nine years after my diagnosis.

It was the day before I was set to start seventh grade, and my lung function was 90%.

I was walking with my mom down Sunset Strip, looking for a location for my upcoming bat mitzvah.

It was kind of a hazy August day, and the night clubs looked grimy and seedy to me during the daytime.

As we passed the House of Blues, my mom's phone rang.

Hello, she said.

I was waving at her to draw her attention over to something, and she just shot me this scathing look, and I stopped in my tracks.

She was silent for a little while.

And finally, she just said, oh, ****.

****.

The street was humming with people, but I had this sensation where all I could hear was the tinny voice on the other end of the line, which was the voice of my doctor.

My mom asked if we needed to come now, and I heard my doctor say, yes, yes, right now.

I asked her what's wrong, and she made this guttural noise, a noise like when you're just about to speak, but the words get tangled in your throat and you can't choke them out.

And I said, what, what?

That was Dr.

Ponchai, she says.

Your sputum culture results came back.

You have...

And she just looked at me, and she paused, because she couldn't say it.

We got in the car to drive to the hospital, and she cried silently the entire way.

We found out that day that I was colonized with Burkholderia senosapacia, otherwise known as B sapacia.

It's the deadliest strain of the deadliest bacterial infection known to CF lungs.

A lot of whispering took place while I slept, tossing and turning and coughing with a force and depth I hadn't known before.

That hospitalization, my first one ever, everyone was trying to make me feel the heaviness of a mortality consciousness.

But I couldn't.

How could they explain to an 11-year-old child that the trajectory of her entire future has changed because of one virulent and highly resistant pathogen?

That her health could rapidly deteriorate at any time?

That she could never be around other patients with CF because of the danger of transmitting the infection to them?

That she might never be able to get a lung transplant?

I didn't realize that my chance encounter with an opportunistic pathogen was like walking up to the devil's vending machine.

I gave up my trust, my life as I knew it.

And in return, I left with the sinking and undeniable reality of my mortality.

The devil's vending machine is no stranger to Hawaii.

Like my encounter with a colonizing pathogen forced me to trade ignorant innocence for a cold, hard dose of reality, the islands have been trading ecosystems for exploitation since their encounter with a very different colonizing pathogen.

Westerners.

The island ecosystem of Hawaii is like a house of cards.

The most biodiverse places are also usually the most vulnerable, in part because they have the most to lose.

Introducing non-native species pulls a card out of the system and the whole web can come tumbling down.

The survival of each individual species depends on the health of the ecosystem as a whole.

A sinister example of the cascade of damage invasive species bring to a fragile system is the story of the o'o bird.

The Kauai o'o was an iconic honey eater bird endemic in subtropical forests in Kauai.

Habitat change, non-native species and mosquito-borne diseases drove them to extinction.

It was most known for its beautiful hunting bird song.

A song that can no longer be heard ringing through the trees.

Westerners didn't just bring invasive species.

They themselves acted as invasive colonizers on the islands akin to the B sapacia colonizing my lungs.

Just as the B sapacia bacteria erode the health of the biome within my lungs, Westerners eroded the health of the biome on the islands.

When the islands were colonized with their macroscopic version of B sapacia, a permanent change in the trajectory of the ecosystem's health was set in motion.

The arrival of Westerners in Hawaii ushered in a new wave of ecological disruption that has been shaking the house of cards ever since.

You could argue it's already crumpled and fallen.

Hawaii now has the highest rate of extinction per square mile on earth.

The body of a CF patient is also like a house of cards.

The tiniest changes can rattle the system, and the accumulation of these little assaults can make the whole house crumple and fall.

The year I turned 17 was one of those years when my body suffered a new wave of ecological disruption.

A few months of disordered eating was enough to give my B sapacia infection the upper hand and permanently alter the trajectory of my health.

It was 2010 at UCLA Hospital.

It was the spring of my senior year of high school, and my lung function was down to 60% from my then baseline of 75%.

I was also 15 pounds underweight.

I was in the hospital for a triple threat cocktail of IV antibiotics, four chest percussion treatments a day, and 2,000 calories of pure milky fat pumped into my veins daily through my central line.

I'd been battling my B.

Sepatia for six years at this point, and that day, I was losing.

I woke up on my eighth day in the hospital to a knock on the door.

It was my doctor, Dr.

Ponchi.

In a low voice and his thick Thai accent, he said, Mallory, your weight has dropped yet again today, and your white blood count has climbed to 19,000.

The lipids are not working.

You're not responding to the antibiotics, and I'm very concerned.

Your case is very complicated.

His voice broke on complicated, and his eyes started to water.

In 10 years as his patient, that was the first time I ever saw him look scared.

Healthy people have thousands of bacteria species present in the lungs.

It's a microbial ecosystem that remains healthy because the diversity of species means no individual bacteria can gain too much traction.

But cystic fibrosis makes this type of polyculture impossible because once you're colonized with a bacteria like B sapacia, that strain outcompetes the other species and resists eradication by even the most powerful antibiotics.

The diversity of bacteria present in a healthy polyculture disappeared when the B sapacia settled in the biome of my lungs.

Now I'm stuck with a monoculture system perched atop airways that are growing increasingly fragile from the endless assault.

Dr.

Ponchai was running out of ideas for what to do, so he performed a bronchoscopy to suction mucus from deep in my lungs.

He directed the tube into the fragile, thin airways toward the bases of the lungs, but the scope accidentally punctured one of the airways.

As I recovered from anesthesia, my body started shaking violently and erratically as my temperature rocketed to 106 degrees.

The B sepacea bacteria had leaked into my bloodstream through the puncture in my airway, causing sepsis.

I struggled against five nurses as they held my convulsing limbs down and covered me with ice packs and cold towels.

It felt like the infection was this Tasmanian devil raging through my body, and the only way I could get rid of it was to shake it out.

People with B sepacea, especially my strain, can randomly get what's called sepacea syndrome, an untreatable pneumonia that can lead to death within weeks.

That night at UCLA Hospital when I was 17, my parents and doctors thought I had sepacea syndrome.

They thought that night was the beginning of the end.

But eventually, my fever broke.

It took a few more weeks in the hospital and a few months of home IV antibiotics for the pneumonia to resolve and my weight to climb back to a healthy number.

But I got better.

I still felt robbed, though.

My infection ransacked my body.

It was an aggressive act that advanced me into a new chapter of the disease, pulled a little bit more control over my health away from me and forever altered the landscape of my lungs.

And the experience of it, even though it was surreal, made me visualize the inside of my body in a completely new way.

I hated it for failing me.

I hated it for making me struggle.

I hated it because when I pictured the little green armies of bacteria and mucus versus the little red and white armies of my immune system and the drugs, I saw my team losing.

And as my armies started losing, I lost confidence that we could win the war.

The initial colonization of Hawaii had created a mortality consciousness for the islands themselves, just like my colonization with B sepacea at age 11 had done for me.

My health was being threatened before my sepsis and pneumonia of 2010 catapulted my progression to another level.

Just like that, elements of the Hawaiian environment were already being threatened before the Kingdom of Hawaii fell.

The survival of the very soil that yielded their sustenance, the water they fished, the volcanoes and craters so deeply embedded in Hawaiian mythology.

In 1893, insurgents in Hawaii led by Americans overthrew the Hawaiian monarchy.

The overthrow of the monarchy was an aggressive act that catapulted the progression of destruction onto a completely different plane.

The islands, when healthy, supported thousands of species within its forests and mountains and waters.

Agriculture was diversified in small scale, with many crops existing together on each farm.

But Western colonization made this type of idyllic polyculture impossible by making the islands susceptible to virulent cash crops, sugar and pineapple.

Changes in land ownership laws in the late 1840s solidified a new economy based on plantation production and cash crop exports.

Rainforests collapsed to make room for monoculture plantations, huge swaths of land with just one crop, whose growth is stoked using chemical fertilizers and pesticides and industrial machinery.

Agribusiness dictated the direction of the islands and biodiversity was not on the winning side.

Worldwide demand for sugar made the industry spread throughout the islands as rapidly as a septic infection until they were plagued with plantation syndrome, a rapid pooling of money and non-native crops in the hands of the few, a progressive ecological pneumonia that's untreatable.

The symptoms?

Irreparable wreckage of natural habitat and forest, the loss of biodiversity, dependence on powerful pesticides that keep the crop from failing but fight chemical warfare against the natural flora and fauna, the crumbling of soil fertility, and the disintegration of the native practice of existing in harmony with nature.

Gone were the healthy, diversified farms present in a healthy polyculture.

From that time on, Hawaii was stuck with a monoculture system perched at top soils that are, to this day, growing increasingly fragile from the endless assault.

It was 2012 in May, my sophomore year of college.

My lung function was 50%.

For the past year, I'd been slammed with complication after complication, and I'd been in the hospital five times just that school year.

It seemed like every organ system of my body had suffered abuse.

For the first time, I was diagnosed with depression.

One day in the middle of this Maui trip, I woke up and everything felt heavy.

My body felt heavy.

My head felt heavy.

My heart felt heavy.

Driving to the beach, I had a hard time looking at the sun.

The day was too bright.

The sky too blue.

And when I got there, I went straight for the ocean and submerged underwater, trying to hold my breath as long as I could so I could stay there because it was the only place where the pieces of myself came close to coming back together again.

I started to cry underwater, and the salty tears were mingling with the salt water of the ocean, and everything was clear and blue and quiet, and I was completely alone.

But then I wasn't.

I had exhaled all my breath so I could sink down below the surface a bit, and I was lying face up looking at the sky through the water.

And all of a sudden, I saw something appear in my right field of vision.

This Honu, this green sea turtle, swam up, and it got really close to me and just sort of stopped and hung there and stayed close.

And I was probably imagining this, but it felt like it was looking at me, not just looking at me, but really seeing me.

And I looked back at this creature with its brown shell and its cracked skin and its large dark eyes.

And I'm not a very spiritual person generally, but I thought to myself that I'd come along at that moment for a reason.

That one sea turtle helped set me on the path to being whole again.

It sounds crazy, but it did.

I still struggled for a long time after that, but I'll never forget that moment, looking at that turtle and imagining that it was looking back with compassion.

That turtle made me see that I did have the strength to ride through the turbulence of my disease with grace.

The sea turtle is a sacred animal, an ancient Hawaiian symbol for longevity, safety, emotional strength and wisdom.

Hawaiian legend has it that the Honu guided Polynesians to the islands.

So many Hawaiians revere the Honu as a guardian spirit and aumakua, which protects them.

The Honu is iconic to the islands and symbolic to the Hawaiian people, but they're also important to the health of the marine ecosystem because they do things like control the spread of algae in coral reefs.

But the habitat sea turtles have lived in for over 100 million years is changing.

All species of sea turtles in Hawaii are endangered, threatened by coastal development and urbanization, hunting, toxic runoff, boat strikes, pollution, marine debris, habitat loss and infectious disease.

Historically, green sea turtle populations were in the millions, but now there are fewer than 200,000 nesting females.

With the sacred Honu endangered for so long by threats to the ocean and the islands, it seems like the islands have faced abuse to the point where every type of habitat is affected, forest and mountains and land and sea.

At the critical turning point, the question was whether the future of the islands would be one of continual decline until irreversible abuses happened, like the Honu going extinct.

The course of my life so far has been tumultuous, to say the least.

I've progressed through the mild and moderate stages of CF to the severe stage.

I've lost control and faced permanent alarming damage to the internal landscape of my body.

My lungs are an ecosystem forever altered that will never return to how they once were before the inflammation, the infection, the scarring.

The course of Hawaii's history so far has been tumultuous as well.

The islands have progressed through mild and moderate stages of environmental damage and alteration to the severe stage.

Native Hawaiians have faced a loss of control and alarming, perhaps permanent damage to the environment they depend on.

The islands are an ecosystem forever altered that will never return to how they once were before Western colonization, invasive species, industrial agriculture, tourism and development.

But this is not a story without hope.

Even though I live today in objectively worse health standing than ever with a lung function of about 40%, I've never felt more hopeful, more resilient, more empowered.

I'm fighting for the future health of my body.

The Hawaiian islands have experienced abuse and destruction from the tallest mountain peak to the deepest part of the ocean.

But for many people who care about Hawaii, there's never been more hope, more promise, more empowerment.

Many native and local communities are rallying to fight for the future health of the islands.

I never asked to have CF or to be colonized with B sapacia.

It's not my fault that both my parents were carriers of cystic fibrosis transmembrane regulator mutation and that I was blessed to get both recessive alleles.

But that doesn't absolve me of the responsibility to fight this disease, fight it with everything I have every day.

I didn't ask for illness, but I own it, because if I don't, no one else will.

Hawaii never asked to be colonized.

It's not the native people's or the islands' fault the Westerners arrived in Kauai in 1778 and set in motion the disease of environmental decay.

But it's up to every person who lives in or visits Hawaii to fight for it and protect it with everything they have every day, because if they don't, no one else will.

But at the root of it all, this is not about Hawaii specifically.

The destruction of the environment the world over parallels the disease processes within my body that are eroding the structures my survival depends upon.

It may not be the current generation's fault that our planet is suffering from the disease of modernization, the infection of human overpopulation, the symptoms of climate change and pollution and ocean acidification and mass extinction.

But like it or not, it's the current generation's responsibility to take ownership over the trajectory of this planet's future.

If we don't, no one else will.

Mallory Smith graduated from Stanford with a bachelor's in human biology and a concentration in environmental anthropology.

This story was part of a class sponsored by the Stanford Storytelling Project called Your American Life, and through the Senior Reflection Program in Biology.

Mallory was supervised by Jonah Willing-Gantz, Andrew Todd Hunter, and Sue McConnell.

Thanks to Natacha Ruck for help with production.

This story featured music by The Album Leaf, The American Dollar, This Will Destroy You, Minnelli Jamal, Antoine Dufour, and Tommy Gauthier, and Josh Woodward.

Today's program was produced by Christy Hartman, Bonnie Swift, Taylor Shoolery, Claire Schoen, and Jonah Willing-Gantz, with help from Julie Morrison and Will Rogers.

For help with production, thanks also to Nina Weill, Joshua Hoyt, Rachel Hamburg, Natacha Ruck, Mallory Smith, Eileen Williams, Nina Foushey, and Rosie Lapoma.

For their generous financial support, we'd like to thank the Vice Provost for Undergraduate Education, Stanford Continuing Education, the Program in Oral Communication, and Bruce Braden.

Remember that you can find this and every episode of State of the Human on iTunes.

You can also download them and find out more about the storytelling projects, live events, grants, and workshops at our website, storytelling.stanford.edu.

For State of the Human and the Stanford Storytelling Project, I'm Preet Kaur, trying to heal into life.