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Handle with Care: Empathy at Work


Aug 17, 2020

- Stacey Ballard

I think the most important thing is that 40 percent of Americans live with at least one chronic illness, 40 percent of Americans. So we all know somebody who lives with chronic illness. And so we we know that those people are out there working right now, just like I had to work, whether I felt good or bad. So we just need to be nice to each other even.  You know, we need to understand that we're all going through something, whether it's chronic illness, whether it's addiction, whether you're in an abusive relationship.

We are all we all have our own story of stress and what is causing issues in our life. I just wish we could be nicer to each other, more understanding.

 

INTRO

Today, Stacey Ballard shares about living with multiple, chronic illnesses.  From hyperthyroidism to endometriosis to Crohn’s disease, and more, Stacey has spent most of her life under the shadow of sickness.  There is the revolving door of hospital visits, the grinding exhaustion, and the fragility of a body prone to illness.  Yet, Stacey is also a published author and artist who recently released a book called The Fine Art of Waiting, crafted to help others who are in a season of waiting…and, in the throes of COVID-19, isn’t that all of us?  I am happy to welcome Stacey to the show. 

Stacey lives in the Lake Tahoe region of California, where she likes to walk with her dog in the Desolation Wilderness.   

 

- Stacey Ballard

And so it's really easy to get out in nature. I love kayaking on the lake and but I spend most of my time walking and just enjoying the air and the and the surrounding landscape.

 

These wide open spaces are a far cry from the bustling Bay area of San Francisco, where she grew up.  Life in the Bay was crowded, chaotic, and the pace of life contributed to her mounting illness. 

 

- Liesel Mertes

Would you set the scene for us of what you're growing up years were like? And as you look back, when you first think, oh, yeah, that those were signs of me being unwell.

 

- Stacey Ballard

Absolutely, I was a skinny, nervous, clumsy little kid, and my family pretty much just thought that's the way I was.

 

- Stacey Ballard

And actually I think it might have been coming up to Tahoe, were coming up into the elevation. I started having really bad symptoms, heart racing, vomiting. And so we started going to my doctor in the Bay Area.

 

- Stacey Ballard

I think I was about nine years old and it took some blood tests and things like that. But that's when they discovered that I had hyperthyroid and and started treating me at with my local family physician.

 

- Liesel Mertes

What was that like for you?

 

- Stacey Ballard

Oh, the symptoms of hyperthyroidism, especially in a small child, nervousness, anxiety, sensitivity to emotional situations.

 

- Stacey Ballard

Heart racing, no appetite.

 

- Stacey Ballard

Yeah, so I was I was very nervous all the time, scared of everything, and and so the diagnosis was helpful because the problem did need to be taken care of because it was in a way that I could continue living. It would have caused more physical and mental problems if it wasn't taken care of. But, yeah, it was it was it was scary as a kid to be so emotionally raw all the time.

 

Stacey was emotionally raw, entering a complex medical system and web of doctors. 

 

- Stacey Ballard

that's when I remember one of my first traumas as a person living with chronic illness and living with doctor's appointments and things like that was that I remember being scared of getting my blood drawn at this big hospital.

 

- Stacey Ballard

And I think by that time I might have been 10 or 11 years old. And I remember it took a number of people, probably five adults at least, to hold me down for them to take my blood.

 

Stacey Ballard

And so the diagnosis was a small part of of what happened to me.

 

- Stacey Ballard

It was the trauma of being a kid, going to doctors that really started to affect my life and my mental and emotional state.

 

Stacey’s family was also reckoning with the diagnosis.  She is the middle child, with an older and a younger sister.  And by that time, her parents had divorced. 

 

- Stacey Ballard

Emotionally dealing with a child, going through things like that, I don't know that many parents have the understanding or the coping abilities on how to navigate it.

 

Her dad was working full time and her mom was working part time…and then there were the drives to appointments and all of the uncertainty. 

 

- Stacey Ballard

My parents, I love them dearly, but but nobody teaches you how to deal with a sick child, and so it was very analytical.

 

- Stacey Ballard

There wasn't a lot of there wasn't a lot of like, oh, how is this affecting you emotionally? I think they dealt with the terror in the moments, but then it was more about distracting me onto other things and getting my mind off things.

 

Stacey’s parents did their best, trying to keep her busy, trying to get the medications in balance.  When she was a preteen, she went through a procedure that purposefully destroyed her thyroid through radiation. 

 

- Stacey Ballard

So once you have your thyroid radiated, you drink radioactive iodine to destroy the thyroid or you have surgery to remove part of the thyroid to help with the hyper thyroid. But what that does is it induces hypothyroidism, which then you go from like, you know, bouncing off the walls to wanting to sleep all day.

 

- Stacey Ballard

I'm gaining weight. I mean, I was I was a stick figure. I was skinny. Even though I didn't have an appetite, I could eat anything and not gain weight.

 

Stacey gained 40 pounds over the course of a month.  She was exhausted and sleeping all the time.  So she began to skip doses of her medication in hopes of losing weight. 

 

- Stacey Ballard

But because my child mind. Saw me gaining weight, saw myself getting more tired and my doctors telling me, oh yeah, this is what's working, this is what's right, I thought by doing the opposite, I was helping myself.

 

- Stacey Ballard

Yeah. And because, you know, my mom, you know, worked full time. My dad was only around on the weekends. They didn't know.

 

There were so many stressors. 

 

- Liesel Mertes

How do you think that you were reckoning with that internally as a kid?

 

- Stacey Ballard

I think as a kid, I was just trying to survive. Yeah. Looking back on it now, I. I see where I, I took on the victim role. And listen, I would never tell anybody else you acted like a victim at the time as a kid, I didn't know any better.

 

- Stacey Ballard

I didn't want these diseases. I didn't ask for these diseases. I was doing my best to survive in the situation.

 

- Stacey Ballard

Every every time my mom or dad would take me to a doctor's appointment, I would get the day off school. Mm hmm. After we go to the doctor's appointment, we'd go out for lunch or breakfast or get a treat.

 

- Stacey Ballard

Yeah. And so I got their full attention.

 

- Stacey Ballard

When your parents are working full time and and and and you have, you know, two other siblings and everyone's fighting for attention, I sucked up that time with my parents.

 

- Stacey Ballard

And so I don't know that I thought of, like, why me? Oh, my gosh, poor me. I think I was thinking, oh, my gosh, I get to see my mom or my dad depending on who I was with.

 

- Stacey Ballard

And, oh, we get to go out for for a treat.

 

- Stacey Ballard

And oh, I get the day off school, which, by the way, I hated school. Yeah.

 

- Stacey Ballard

And so and so. And then when, when my next diagnosis came at 13, 14 years old with endometriosis, although it wasn't a diagnosis, it was just symptoms.

 

Endometriosis is condition that causes pelvic pain and often also contributes to powerful pain during menstruation.  As Stacey began to feel these symptoms, she felt like the little boy who cried wolf.  As a chronic pain sufferer, she had often sounded the proverbial alarm…and now, no one believed her. 

 

- Stacey Ballard

I then got my period and immediately started having symptoms. Nobody believed me.

 

- Stacey Ballard

Oh, you're it's just your period, period. That's just your period. And so, you know. In the back of my mind,

 

- Stacey Ballard

I'm thinking there are some acute pain and discomfort and pain.

 

Yes, that was my main symptom of endometriosis. A lot of people have different symptoms, heavy bleeding and things like that. Mine was severe, severe pain. And so I know that as a young teenager, I did go to a couple of doctors and try to find out if this was wrong, immediately told no, this was normal deal with it. And so then for a couple of years, not understanding that there was something wrong, I just dealt with the symptoms which were horrific.

 

- Liesel Mertes

Yeah. Well, and I imagine as you say that, that it's its own head trip. Right. Of like am I imagining things? Am I crazy? Should I trust my own body? Should I trust these other people? That, I imagine, in dealing with just the physical pain that that sort of mental disequilibrium only compounds that and makes it more challenging.

 

- Stacey Ballard

Absolutely. I mean, I couldn't deny the physical pain.

 

- Stacey Ballard

I would be in pain about three weeks a month if this was going to school as a teenager and also working part time and then as an adult, working full time and tried to go to college.

 

- Stacey Ballard

And so.

 

- Stacey Ballard

The the physical symptoms were unquestionable, so I began to hate my body because I didn't know what else to do, because the medical in industry was saying that's normal.

 

- Stacey Ballard

Right. And I wasn't talking to other girls. I mean, even as a teenager, I had I remember having a few girlfriends in in high school, but I don't remember talking to them about this.

 

- Stacey Ballard

And so I turned my pain towards my own body.

 

- Liesel Mertes

Hmm. Yeah. What did that did that manifest itself in physical expressions or mostly a mental orientation? Tell me more about what that looked like.

 

- Stacey Ballard

Mostly mental. I was very depressed, my thyroid.

 

- Stacey Ballard

I talked to a lot of people about thyroid issues because what a doctor says is a normal level might not necessarily be a normal level for you.

 

- Stacey Ballard

And so as far as like a 16 year old, you know, I'm dealing with three weeks out of the month of being in pain, my thyroid levels supposedly being at normal levels.

 

- Stacey Ballard

And I am sleeping 12 hours a day or at night, you know, and so I'm depressed.

 

- Stacey Ballard

I'm isolating myself.

 

- Stacey Ballard

I did have art in my life, thank goodness I was a photography student in high school at the time, and so I think I would spend a lot of time distracting myself. But it is really hard to distract yourself when you're in that much physical pain.

 

- Stacey Ballard

And so it was just depression. And then I started also having an anxiety disorder.

 

- Stacey Ballard

Yeah. You know, and and I do deal with mental illness, depression, panic disorder. And it took me a long time to not blame myself for it and realize it's a brain chemistry thing. It is not a it's not a lack of drive or a lack of personality. It's it's the chemical factory in my brain that I have no control over. And that was that took me a long, long time to accept, right?

 

- Liesel Mertes

What were some of those those messages of questioning whether it was just a problem with you or just loathing towards your body?

 

- Liesel Mertes

Were those being expressed from external people at all, like, can you look back and think, man, people just they said really, you know, casual or purposefully hurtful things that just lingered with me?

 

- Stacey Ballard

Yeah, I think a lot of people like me who look normal on the outside, we call it invisible illness.

 

- Stacey Ballard

People did not believe me, people did not believe me. And my family didn't believe me. My friends didn't believe me. My boyfriend I had a high school boyfriend for like four years. He didn't believe me.

 

- Stacey Ballard

And, you know, yeah, it is it is tough, especially when you look normal on the outside. And even if people see me curled up in pain crying on the floor, they can't understand that it's happening from the inside because they don't see anything physically hurting me, right?

 

- Liesel Mertes

Well, and just, you know, as this is also for the benefit of listeners to do better in these interactions, I want to drill down a little bit. What did that not believing sound like from your family members or the boyfriend or the community?

 

- Stacey Ballard

Well, you look beautiful. Well, I saw you at the amusement park yesterday, you looked fine then, gosh, you look like you were having fun. Well, gosh, what else do they say?

 

- Stacey Ballard

Let's see. You know, I was I was working full time and also going when I when I left high school, I was working and then commuting into San Francisco to go to the Academy of Art and and.

 

- Stacey Ballard

Because I had to I didn't have any other choice because in my family, you pull yourself up from your bootstraps, you have goals you need to meet because you have to survive this life, you know, and you have to have income. And so, you know, it was just it doesn't matter how you feel. Keep moving forward. Yeah.

 

- Liesel Mertes

Oh, man, I, I resonate.

 

- Liesel Mertes

Well, you and I both can translate some of those messages and have deeply received them. So I hear that because as you think about that, was I

 

- Liesel Mertes

Was there like a breakthrough moment or experience where you can remember thinking, like I just know, like I have to rest. And that is actually more healthy for me right now, like where you were really consciously acting against some of that programming and messaging that like you just got to keep on pushing?

 

- Stacey Ballard

I don't want to start crying, but, yeah, absolutely, I was I think I was twenty two by that time I had not been I had just barely been diagnosed with endometriosis.

 

Stacey Ballard

That took me 10 years. I had not yet been diagnosed with Crohn's, even though I was living with symptoms. And by that time I was also unknowingly living with a rare autoimmune liver disease. And I met my now ex-husband, but his name is Gary and we met through a friend and he changed my life. Yeah. Yeah. He was the exact opposite of everything I had been taught.

 

- Liesel Mertes

Yeah, tell me more about that life change and what what he brought to the table that was really important for you in that season.

 

- Stacey Ballard

So my family, I love them very. Yeah, very driven. My family, we volunteer. We we help other people.

 

- Stacey Ballard

We do our own stuff. I met Gary through a friend.

 

- Stacey Ballard

I am an old Deadhead that says a lot to people who know what that means. Gary.

 

- Stacey Ballard

We started dating and there was no drama in our relationship my whole life, I had spent becoming what other people needed me to be to make them happy.

 

- Stacey Ballard

I never knew what I wanted because I didn't there wasn't space for that in my life up till then, I was kind of a loner.

 

- Stacey Ballard

And so when I when I'd meet somebody who'd want to be friends with me, I'd be like, OK, you know, what do you like? OK, I like that too kind of thing.

 

- Stacey Ballard

And and and until I met Gary and got in that relationship, I had never known or looked at what I wanted.

 

- Liesel Mertes

Yeah, and he was able to open up some of those questions, what did you discover about yourself in your 20s?

 

- Stacey Ballard

Well, unfortunately, three months after we started dating, I ended up in the hospital going under emergency surgery.

 

- Stacey Ballard

So I didn't have a lot of time to find out very much.

 

- Stacey Ballard

But what I did find was a soft place to fall. He he didn't necessarily ask me questions, but he said, look, I don't need to be fixed.

 

- Stacey Ballard

There's no situation around you that needs to be fixed, you need to figure out what you want to do with your life, and that was both wonderful.

 

- Stacey Ballard

And hard, yeah. To be left in that space of like, oh, wait, who am I now? And it wasn't until I was like twenty two that I had had that space to find that out and then Boom immediately went into surgery.

 

We will come back to that near-death experience in just a moment.  But I’d like to take a second to thank our sponsors.  Our first sponsor is FullStack PEO.  I am an entrepreneur and a small business owner.  And I know the annual hassle of shopping around for a health insurance plan.  Hours lost trying to navigate different options.  This is where FulLStasck PEO comes in.  They manage benefits for entrepreneurs and small-business owners, taking away the headache and providing great benefits for your people so that you can focus on growing your business. 

 

We are also sponsored by Handle with Care Consulting.  It is hard to know what to do or say when someone is going through something hard (you already realize this, podcast listener) and sometimes, you need some extra help.  At Handle with Care Consulting, I offer targeted workshops, interactive keynotes, learning cohorts, and personal coaching options, empowering you to show care when it matters most. 

 

Alright, bask to our story.  Stacey has just met Gary a few months earlier.  Before we hear about Stacey’s hospitalization in her early 20s, it is helpful to hear about another story.   

 

- Stacey Ballard

I, I don't know why I forget about my near-death experience, because that was the thing that changed my life first.

 

MUSIC UNDER THIS SECTION PLEASE, PERHAPS EMPHASIZING SOME OF THE ROCK/DRAMA

 

Stacey and her sister went to a Skid Row and Bon Jovi concert in Sacramento. 

 

- Stacey Ballard

I was like 18 or 19 years old, it was probably 90 or 100 degrees in Sacramento, and I had been illegally drinking in the parking lot and was pretty hammered by the time we went in to to get our our selves situated in front of the stage so we could be at the first part of the stage for the concert.

 

They were exhausted, hammered.  It was hot and the concert began.  Immediately, people began pressing towards the front.  It’s heavy rock music, and Stacey braces herself against the stage. 

 

- Stacey Ballard

And there's a lady next to me who's really, really drunk and she starts collapsing. And I know that if she collapses, she's going to be trampled.

 

Stacey struggles, with a few others, to hold her up.  And then, a man comes pressing through the crowd. 

 

- Stacey Ballard

I'm only five foot one, so he may have been like six two starts coming through the crowd, punching people out in the face with his fists.

 

He punches the lady she’s holding and, finally, security drags the woman away.

 

And by that time, I am drenched in sweat and I put my hand back on the barrier to steady myself again, and there's a girl in front of me and she rips my hands off the barrier.

 

- Stacey Ballard

And at that point I start falling and I realize that I'm going to be trampled to death. And I have the classic near-death experience.

 

- Stacey Ballard

I went into the light.

 

She experiences a sensation of unconditional love, of seeing her life in review, experiencing her actions through the eyes of others.  This is the end.

 

- Stacey Ballard

And then all of a sudden I was back in the concerts and somebody was pulling me out of the crowd.

 

The experience causes her to delve into different religions, meditation, metaphysics for the next year or two.  Exploring the deeper meaning in the life she has been given.  She meets Gary and, a few months later is on a women’s spirituality trip when she starts to feel awful.  Her chiropractor recognizes signs of jaundice and sends her directly to the emergency room. 

 

- Stacey Ballard

I was completely neon yellow. I think I was twenty two years old.

 

She arrives at one hospital and has to leave because of insurance issues.  Next, to the county hospital. It is Thursday before the 4th of July weekend. 

 

- Stacey Ballard

I am so thankful for Highland Hospital. They saved my life.

 

- Stacey Ballard

And so I was literally freaking out in the hospital because this is the first time I had ever been hospitalized. And they had me all hooked up on tubes and they said this was Thursday and they said, we're going to wait till Monday and we're going to do surgery on Monday.

 

- Stacey Ballard

At this point, I had a tube down my throat because the bile in my stomach, I think, was causing problems. And so they were trying to drain fluid and stuff out of my stomach and having a tube down your throat. Is so traumatizing,

 

- Stacey Ballard

I cannot even tell you I. I can't the people that are on ventilators right now, Jakovčić. And the people that are out there wearing masks, they just don't understand the trauma that all these covid patients are going through.

 

- Stacey Ballard

I wasn't even on a ventilator at this point. I just had a N.G. tube down my throat.

 

- Stacey Ballard

And and I begged the doctors at Highland Hospital, please don't make me wait four more days. I can't do this. I can't do this.

 

- Stacey Ballard

Please don't make me wait four more days. I had doctors and nurses volunteer to skip their holiday weekends to come in on Friday and perform my surgery so I didn't have to suffer for more days.

 

- Stacey Ballard

So I've seen the good and bad of doctors for sure, and so they took me into surgery on Friday halfway through surgery, things went really bad. I was under anesthesia. They pulled me out.

 

- Stacey Ballard

My mom, they pulled me out into this room. My mom was standing on one side of me. Gary was standing on the other side of my surgery bed. And they showed an X-ray image up on the light board and they said, see this spot on her liver right here. If it's cancer, she'll have a year to live. If it's not cancer, she has a rare disease.

 

Ultimately, it was the rare disease, not cancer, and in the course of surgery, there was a breakdown where bile started leaking into her abdomen. 

 

- Stacey Ballard

which then started my almost 20 year journey of being hospitalized or having the surgery. Every year. On or around 4th of July for the next 15 years. Hmm. Because I believe when I was partially under anesthesia and the doctor says she might only have a year to live, I think my subconscious. Did something, and every year for the next 15 years, I'd be in the hospital or undergoing surgery on or around 4th of July, huh?

 

- Liesel Mertes

Yeah, I think there are so many things that, like, science doesn't doesn't yet have language for about how our bodies keep the score and remember and hold things in our subconscious in ways that are profound like that. Absolutely.

 

In the course of these hospitalizations, Stacey is admitted and has to be put on a ventilator.  This was one of the traumatic experiences that still causes her PTSD. 
- Stacey Ballard

They use something called a cuff when they are weaning you off a ventilator to get you to start helping you to breathe on your own, regain your strength. But I had a big note up on my board saying, you know, don't put her on the cuff in the mornings because that's where the anxiety is at its worst.

 

But one morning, a nurse comes in on her rounds and wants to put Stacey on a cuff.  Her mom, who was there, objects, directing the nurse to the note.  Stacey, of course, can’t talk

 

- Stacey Ballard

And this person did not have time to listen. And so she pulled me off my ventilator. She put the cuff on me, and I started banging on the the hospital table in front of me. And I started going into full blown panic attack like I was drowning because I couldn't breathe.

 

- Stacey Ballard

And she stood there and watched me gasping for breath for a number of minutes.

 

- Stacey Ballard

My mom froze, she she was in such terror at what was happening, she did not know what to do.

 

- Stacey Ballard

And I think eventually she ran out of the room and got somebody. But it went on for a number of minutes until I was put back on the ventilator.

 

- Stacey Ballard

And this is with me to this day when I wear a mask outside, it brings it up.

 

- Stacey Ballard

And so I understand when people say they don't want to wear a mask outside and it's bothersome. And guess what? It bothers me, too. But I wear it because I do not survive getting COVID, so. Well, I guess what I was going to say is that a lot of people who live with chronic illness also deal with trauma that has happened to them if they have spent any time in hospitals or or long term care or dealt with doctors.

 

MUSICAL TRANSITION

 

- Liesel Mertes

So in the midst of all of these ups and downs and, you know, the regularity, what what are you doing or learning for yourself in order to maintain any semblance of equilibrium? Like what? What is becoming important for you to just be living each day?

 

- Stacey Ballard

One of the many things that is a continuing story through this is creativity.

 

- Stacey Ballard

As a photographer in high school and I've also been a potter and now I do mixed media, I've always done some sort of art and I'm literally talking coloring books and crayons. Tinkerbell, Mickey Mouse, it didn't matter. I was doing something because for some reason, being creative in whatever way I could help me.

 

- Stacey Ballard

And now I understand because there are studies out that prove why being creative and doing art helps, you know, lower cortisol levels helps reduce pain and stress.

 

- Stacey Ballard

But back then, intuitively. I just it just helped and I was also at the same time learning about meditation and learning about alternative medicine and different ways to treat myself.

 

- Stacey Ballard

And finally, at about 23 or 24, winding up on my therapist’s floor in a fetal position, being diagnosed with panic disorders and depression and being put on appropriate medication was a huge help.

 

- Liesel Mertes

Yes. Yes. I think this you you talked a little bit about art and its importance in your story. That's something that you have segued into some of your professional involvements and a recent book that you have published. Tell me about what you have created for others out of your own experience.

 

- Stacey Ballard

Thank you. Yes, my book is The Fine Art of Waiting Wellness through Creativity, and because I've lived most of my life with health issues, I've used art to help in my own healing.

 

- Stacey Ballard

And I've created this book to help people decrease stress, change your relationship with illness and pain, and transform it into one of possibility and hope.

 

- Stacey Ballard

It is, it's challenging right now for everybody. Everyone has different stress and everyone has different stories.

 

- Stacey Ballard

Whether you live with addiction or the stress of of a health issue, we need to find ways creatively to deal with the stresses that come with life. Even more so right now. And that's why I created this book, is because art has been so helpful to me.

 

- Stacey Ballard

And over the years, I created these little projects like My Monster, which is a project that you actually are drawing a monster, which at times have been my disease or my stress of the week.

 

- Stacey Ballard

And then I tear it up or I stomp on it or I burn it and it gives me a feeling of sense of control. And so I've tried to put some of those projects in my book.

 

- Liesel Mertes

Well, and you showed me some of the pages. It looks like there's a wide diversity of types of projects and ways of engaging. And I resonate like that, that the physical expression, sometimes there's so much that is going on within our heads or within our bodies. And to be able to, like, externalize some of those things is really powerful.

 

- Liesel Mertes

Yes, I love that your book does that and you really want to make it accessible to all kinds of people. Tell me about the buy one. Give one that you're doing also with this book.

 

- Stacey Ballard

Absolutely. So there's a couple different versions. I specifically wanted to have a spiral bound version because I know being in the hospital, even just coloring and coloring books, is hard to hold down one side of the page and color on the other when you have IVs on both arms and things like that. So one of my books specifically is a spiral bound version and that one is twenty one ninety five.

 

- Stacey Ballard

It has a color, it has a sample page in color, so you can look at it and get some ideas. I do have a version on Amazon that's not spiral bound and it's nineteen ninety five.

 

- Stacey Ballard

But for any book that is purchased I will give one to somebody who's living with chronic illness who can benefit from having a book.

 

- Stacey Ballard

There is a section on my website where you can nominate yourself or somebody else for a free copy because I've lived with chronic illness most of my life and have lived with disability as well. I've been low income and so I may not have been able to afford this book when I needed it. And so for anybody who can't afford it, come to my website, nominate yourself. Or if you know somebody who needs a book, please go to my website and we'll give that information and nominate them for a book.

 

- Stacey Ballard

I will be happy to send one to them.

 

- Liesel Mertes

I love that I'm struck, even as you say, that, you know, like for most of my life, I've been low income and this is something that I like to ask about any range of disruption.

 

- Liesel Mertes

But that is perhaps, you know, that statement is a stepping stone into the question of

 

- Liesel Mertes

what are some of the things that you feel like people who have never dealt with chronic illness, they just don't understand about what it's like to live with chronic illness? What are some of the things that would be helpful for you to give voice to?

 

- Stacey Ballard

I think the most important thing is that 40 percent of Americans live with at least one chronic illness, 40 percent of Americans.

 

- Stacey Ballard

So we all know somebody who lives with chronic illness.

 

- Stacey Ballard

And so we we know that those people are out there working right now, just like I had to work, whether I felt good or bad. So we just need to be nice to each other even.

 

- Stacey Ballard

You know, we need to understand that we're all going through something, whether it's chronic illness, whether it's addiction, whether you're in an abusive relationship.

 

- Stacey Ballard

We are all we all have our own story of stress and what is causing issues in our life. I just wish we could be nicer to each other, more understanding.

 

- Stacey Ballard

And and and for me, as far as seeing people out there not wearing masks, I just keep saying 40 percent of Americans live with chronic illness and a lot of them are out there working because we have to we have to work because we have to pay bills and we don't have a choice because a lot of us also have to be on medications that we cannot live without.

 

- Stacey Ballard

And, yeah, it's it's it's a desperate situation. And that's why I'm also trying to get politically involved with what's going on as well.

 

- Liesel Mertes

Does it does it make you but I'm putting perhaps my emotions into it. I was going to say, does it make you really angry to see people who are not wearing masks? But maybe anger is not your go to what you feel when you see people who are not wearing masks?

 

- Stacey Ballard

It's heartbreaking. And it does make me angry. I was in CVS picking up a prescription and I haven't been to a store in months because I can't after my transplant, when I almost didn't survive, I was on a ventilator for three months and I have lung damage due to that and also due to a doctor's. Mishandling of another treatment I had I also have lung damage from that, but I looked normal and that's the problem is that we don't we don't wear our stories on our faces.

 

- Stacey Ballard

And so we can't see how we're hurting people. And I think people are just being selfish. Wearing a mask is easy. Doctors do it all the time. Nurses do it all the time. And I worry about the doctors and the nurses that we're putting in danger, too, because they're load of patients is is continuing. And the stress of that is is not helping as well. And I worry about our our people working in grocery stores and banks and the places that have to be open.

 

- Stacey Ballard

I live in a tourist town. I live in Lake Tahoe, California.

 

- Stacey Ballard

We are busier than we would be on a normal holiday weekend. And we have people up here not wearing masks traveling up here from the Bay Area. I don't know what to do. I don't know what to say, I just say to the people who are living with chronic illness, take care of yourselves because nobody else is going to do it for you.

 

- Liesel Mertes

Yeah, I hate that sense of. Of isolation, but there's there's a truth to it, you know, we we would like to we would like to think that we had more of a sense of community of care around those that needed it. But.

 

- Liesel Mertes

Well, thank God for you, though. People caring it is exceptional. Yes. Because and it's and it's worthy of being called out and praised because there is there's so much of that that has frayed around the edges in our social discourse and expressions.

 

- Stacey Ballard

And that's what's so important about what you're doing, is that you're creating this community of understanding with your podcast and and listening to your other podcasts.

 

- Stacey Ballard

No, I don't share the same stories as your other interviews or listeners, but what understanding I gain from listening to their stories.

 

- Stacey Ballard

And so by by having this podcast, you you are you're destroying the isolation, which I love.

 

- Liesel Mertes

Well, thank you. I that is definitely part of my aim. And man, I get to I get to receive some really important reflective stories. So I'm I'm always thankful to be able to help hold them. So thank you.

 

- Liesel Mertes

I'm struck that there's the there's the the toxic like don't do these things.

 

- Liesel Mertes

What are things that would be helpful if somebody is listening and they go, wow, yeah. I do know that person who walks with a chronic illness and maybe they're even thinking to themselves, oh my gosh, I've done some of the stupid things I've said, like, well, you look fine, you know, but and they want to do differently what is meaningful to you?

 

- Liesel Mertes

What are like good ways that people have supported you, that you think, man, that was so good.

 

- Stacey Ballard

What a great question. First, if you ask me, is there anything you could do to help me, I'm going to say, no, I'm OK. Mm hmm. But if you bring me over a casserole, I will love you forever. And when I'm feeling better, if you need me to change tires on your car, I will do that for you.

 

- Liesel Mertes

Yeah, I'm just showing up. Showing up.

 

- Stacey Ballard

If the person doesn't have an advocate, if the person doesn't have someone to go to doctor's appointments with them, I think that's one of the most important things that I tell people who have friends or even people living with chronic illness who go to doctors appointments by themselves.

 

- Stacey Ballard

Don't you are not in the state to hear everything you need to hear and you need to be prepared.

 

- Stacey Ballard

Ask a friend or a family member who you trust, who you can feel comfortable with to go with. You have a list of questions you want answered, but have that support with you. So if you know somebody who lives with chronic illness, ask them, do you need somebody to go to your appointments with you? If they go, oh no, don't worry about it, go away.

 

- Stacey Ballard

You know, can I go and take notes for you or, you know, do you need me to drive you to get your blood drawn?

 

- Stacey Ballard

A lot of us who live with chronic illness feel like a burden not only financially because we struggle so much with our income, but emotionally and mentally because I am not going to get better.

 

- Stacey Ballard

This is my life, and that's OK. Healing doesn't always mean you survive.

 

- Stacey Ballard

But it means you can walk the path with as much. Of an open heart as possible, and and so if you have friends living with chronic illness, just ask tell me more.

 

- Stacey Ballard

Tell me more.

 

- Liesel Mertes

Yeah, that's a that's a good thing to take way of thinking if if someone if somebody already experiences themselves as a perceived burden, you know, what am I doing to reinforce that or alleviate that?

 

- Liesel Mertes

You've said this kind of throughout, but if there's someone who is listening, who they are, you know, they're walking a journey with life long chronic illness, what words would you offer to them?

 

- Stacey Ballard

Find support. I'm sorry you're not alone.

 

Stacey Ballard

It's hard, not everyone understands.

 

- Stacey Ballard

I don't know if I can mention this and you're welcome to edit it out, but

 

- Stacey Ballard

I have found a wonderful support group for people living with chronic illness called Beyond My Battle.

 

- Stacey Ballard

And actually, they also have support groups for your caretakers, which would have been a huge resource for me and my ex-husband as we were going through this, if he had more support as a caretaker.

 

- Stacey Ballard

So please reach out for support. If you don't find the right support, it doesn't mean to you it could mean it's them. I've been in some pretty negative support groups that I was like, oh, no, I am not staying with this one.

 

- Stacey Ballard

So keep searching because there are people out there like me who we have pity parties for ourselves.

 

- Stacey Ballard

And I have really bad days where I can't get out of bed, but I am going to suck every beautiful piece of life out of this life that I can. And I, I invite anybody who wants to do that to join me.

 

- Stacey Ballard

And, you know, well, that's that's where art helps me.

 

- Stacey Ballard

And, you know, I can take that and turn it into a really dark piece and I have and because it gets it out of my head and gives me some sense of control over it because I can't, I can't, I can't do anything with it because it's in the past.

 

- Stacey Ballard

I can't manipulate it any more because it's already been experienced.

 

- Stacey Ballard

But I can manipulate the feelings I have from it that at times get get, you know, hard

 

- Liesel Mertes

That's powerful, that I mean, it's not revolutionary. But even just the way you said it, like something has happened to you, it exists as it.

 

- Liesel Mertes

But even that like the physical act of being able to render and manipulate it in a certain way. Yeah. Has its own power in experiencing it.

 

MUSICAL TRANSITION

 

Here are three take-aways from my conversation with Stacey

  • As a person living with chronic pain, Stacey could often experience herself as a burden:a financial burden, a logistical burden:  someone who would not get better.  My first-takeaway is just a question:  If you know someone that is living with chronic pain, are you subtly or explicitly reinforcing those messages?  Perhaps the messages are subtle.  Do you sigh loudly when they express bodily pain?  Roll your eyes?  Or do you give positive messages:  you are important, you are more than your pain, you have a place here. 
  • Offer to come along to doctor’s appointments, to take notes, to drive.The flow of information can be overwhelming, and company is often appreciated.
  • If you are living with chronic pain, finding a support group can be really meaningful.Perhaps that is locally or through the Internet.  Support groups can also be helpful to care providers as they shoulder a particular burden.  And, as Stacey noted, not all groups are created equal.  If the group isn’t working for you, don’t be afraid to move on and seek out another support group. 
  • And this is a last, bonus take-away.If you don’t know what to say, “Tell me more,” is a great prompt.  Stacey noted the importance of this phrase.  You might have noticed that I unconsciously did this earlier in the interview.  I don’t know a lot about chronic pain…which meant that I didn’t really even know what to ask.  However, by just opening myself up to her story with an open-ended question, I learned a lot. 

 

OUTRO

 

Link to Stacey’s Blog and Work:  https://fineartofwaiting.com