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So many writers deal with not just one health issue, but multiple issues. It can feel like our bodies are attacking us or even sabotaging our efforts to write. Guest Lindsay A. Franklin understands, and she’s here to share how God is bringing her through her own health struggles and enabling her to meet deadlines and thrive on her writing journey.

About Lindsay A. Franklin

Lindsay A. Franklin is a Carol Award–winning author, freelance editor, and homeschooling mom of three. She would wear pajama pants all the time if it were socially acceptable. Lindsay lives in her native San Diego with her scruffy-looking nerf-herder husband, their precious geeklings, three demanding thunder pillows (a.k.a. cats), and a stuffed marsupial named Wombatman. She’s @LinzyAFranklin on Instagram and Twitter, and she Facebooks at facebook.com/LindsayAFranklin.

Thanks to our sponsors on Patreon, we’re able to offer an edited transcript of the podcast! 

Karen: Welcome, listeners, to the deep. We’re so glad that you’re here with us today. We have a guest, Lindsay A. Franklin, and Erin, the inimitable, is going to introduce her.

Erin: I can’t even say that word! No, this isn’t a do- over like the Groundhog Day movie. We really do have Lindsay Franklin with us for another episode, because we had so much we wanted to talk about. So, just as a reminder, Lindsay A. Franklin is the Carol Award-winning author of five books. She’s a freelance editor and a homeschooling mom of three, and she’s also been diagnosed with a connective tissue disorder: Ehlers Danlos syndrome.

If you heard our last podcast, you heard part of our interview where we talked with her about that long journey to finding the diagnosis in the midst of starting her writing career. If you didn’t hear it, go back and listen. It’s a good one!

Today we want to continue our conversation with her and talk about the practical side of how in the world she managed all those book contracts in the midst of dealing with the repercussions of her disease that she deals with all of the time.

Welcome, Lindsay.

Lindsay: Thank you so much for having me back. I’m excited to be here again.

Erin: We love having you. You had mentioned in our last show that you had to have knee surgery, and right as we were ending, you were like, “Yeah, I had to do all these books.” We thought our listeners would want to know some of the deal with that, the practical side. How did you do that?

Lindsay: That’s such a good question. I think something all of us who struggle with chronic conditions have to wrestle with that a lot. How am I going to do these things that I want to do? How am I going to accomplish what I want to in life, or fulfill my obligations?

At that point, once I had signed on the dotted line, it was like, I have to. I literally have to do this. I agreed to legally, so how am I going to do that? I think there are a few tips that will hopefully resonate for people in a similar position.

Time management is very key for me because I never really know when I’m going to feel good, and when I’m going to be completely not functional. Because that’s kind of how I swing. I know for some people it’s like their baseline is just constantly sort of lower all the time. They have to figure out how they’re going to make the most of the limited amount of energy that they have all the time.

I’m kind of very up and down with my energy levels. Some days I’m just super way up here, and I can get tons of stuff done. Then other days it’s literally nothing, and my husband is pulling all the weight around the house, taking care of the kids and everything. Because I just can’t do anything because my pain levels are too high.

For me, I do a lot of planning where I will look out at my long-term calendar. I look at my short-term calendar. I’m kind of tactile, so I have a paper planner still. We’ve got our digital family calendar that we put all our appointments in. But for my work, I like to look at it on paper so that I can see the whole month at a time. Then I can see the week.

In those days, when I had five books under contract at once, I had an hourly. You know, like a daily planner that had everything broken down by hour, because then what I could do was block out my days. These are the times I simply have to pick up the kids from school, or these are the times I’ve got a doctor’s appointment or whatever, you know, those appointments you can’t move around. I would block those out first.

Then I would look at what deadlines are coming up. What are the kids’ school deadlines, school obligations coming up that I need to be involved with? It’s helpful that they’re older now. When they were littler, that was a much bigger slice of my daily pie, so to speak.

Karen: Okay, so I have four and a half minutes on Thursday next week where I can write…

Lindsay: That’s pretty much what it was. When my kids were little and I was homeschooling them full-time, my husband would get home. I think it was on Wednesday evenings and Friday evenings, those were my times to write. I would leave the house because that was the only way that I could really disconnect mentally from what was going on at home and all of my obligations there. He would just be like, “Okay, I’m here. I got dinner. Go.”

I would eat dinner out, just by myself, and write until 9 or 10, whenever my coffee shop closed. I wrote an entire, 100,000 word fantasy novel that way over the course of however many months it took me to do that.

So what I do practically really does vary depending on the season of life that I’m in. I was lucky that when I had all these books under contract, my kids were a little older, a little bit more independent. I was able to focus a little more time on writing.

Being realistic about what I can actually do, not looking at the paper and saying, “Oh, well, if I work every single spare minute that I have open on my calendar, then I can turn this in earlier.”

I’m always tempted to do that. “Oh, I can also take on an editing project while I write…No. Don’t do it, Lindsay. Stop.”

Those are lessons I’ve had to learn because my instinct is to do that. So I would say yes, agree to all these different things and you know, realize that I’d made a mistake and no, I can’t actually do all those things.

Erin: I love that, though, Lindsay. That’s so smart to put that on paper because there’s no fudging. You can’t pretend that those blocks aren’t full when they’re full. I think that helps you have permission to say no to certain things.

Lindsay: Yeah. And to really see it, to see it on paper, and to see how little some of those open blocks are. Like one day, I’m going to have 45 minutes to work. I mean, I simply can’t look at that and say, “Oh yes, I have time for X, Y, Z,” because it’s obvious that I don’t.

Erin: Right. Very cool. I’m curious, you had said that you deal with these ups and these downs. Do you find yourself ever struggling with feeling guilty when you’re in that down and you can’t do anything? And if so, how do you get past that?

Lindsay: Absolutely. That it has been a really big struggle for me. Because I do like to say yes. I like to say yes to a lot of things. So when I say yes to something and then I’m struck down and can’t follow through in the way that I wanted to, or I’m late with following through on something, I really do struggle with feeling guilty about that.

It does give me permission to say no at the outset more when I know that I’m going to feel worse. I hate to say no, I really do. Especially when a young writer contacts me. “Would you maybe be willing to read my book for endorsement?” I always want to say yes to that, because it’s so hard to ask people that question.

I know that feeling, so that kind of stuff, it just kills me to have to say no upfront. But I also know that it’s worse for me and for them to say yes to something like that, and then to have no time to actually be able to follow through with that, because then they’re all hopeful waiting for that endorsement that may come in. Then I have to say, “I’m so sorry. I did not have time in my schedule to be able to work it in.”

Karen: The thing to always keep in mind in those situations, so that you don’t end up falling into guilty feelings, is that God knows the exact right people to be endorsing that person’s book. You can say no with the full confidence that it’s not like God turns around and says, “What did she say? She was supposed to do this.”

He doesn’t do that. And if you say yes when you know you shouldn’t, then you are short circuiting what God is trying to accomplish with someone else.

Lindsay: It’s so true. That’s such a good point. I think it’s really easy, and maybe this is especially true for women. I don’t know, maybe guys are like this, too. But I think it’s really easy to feel like all of this depends on us. That if we’re not doing it, nobody else is going to. I just feel like my female friends are right there in that camp with me, where we feel like we have to be all things to all people or else the world’s gonna fall apart. And that’s just not true. It’s not true.

God has it. He’s got the big-picture plan already laid out. I keep telling myself over and over, “You’re not that important, Lindsay.”

Karen: That’s exactly right.

Lindsay: The world is not going to fall apart if you have to say no to something, it’s really not that serious. So yeah, that’s a good word.

The world is not going to fall apart if you have to say no to something. @LinzyAFranklin #amwriting #Christianwriter @karenball1 Click To Tweet

Karen: It’s way too easy for us in the Christian world for Christian women to feel as though we’re both the cause of and solution to all the problems around us. “It’s my fault. Somehow it’s my fault. I have to do something to fix this and if I don’t, nobody else is going to.”

And God’s like, “Would you mind getting out of the way, please?”

Erin: “I’m trying to do something here. Move over.”

Lindsay: “I’ve got this.” Yes. So true. Relatable. I wish it weren’t so relatable, but it is.

Erin: We understand! The other thing we wanted to talk about was when COVID was shutting everything down last year, that was right about when the third book of your Weaver trilogy came out. You had said, “Yeah, that’s an interesting story.”

We’re like, “Well, now we have to hear that.” So tell us what happened with that.

Lindsay: It’s kind of funny because yes, The Story Hunter, which is book three, released in May of 2020. So a very difficult time pandemic-wise. A tumultuous time politically, socially. There was a lot going on in May, 2020. And I think if my life has taught me anything, it has really forced me to be flexible.

It forced me to be flexible because I’m probably not naturally the most flexible person. This cracks me up. I have to just throw this in here, because I’m such a nerd, but the health conditions that I have make me laugh because I am physically a very flexible person. Because of my disorder, I’m hyper mobile. I’m literally flexible, and yet inside, not so much.

Oh, I also have a heart condition where I was born with a congenital defect with my heart, which is not actually related to the connective tissue disorder.

Erin: Is there any disorder you don’t have? Is there anything missing in your family?

Lindsay: Right? And my hair is way too frizzy, so I just don’t know.

Karen: I have a host of medical issues as well, and I went to my parents at one point, laughingly, but I said, “Thank you so much for the shallow end of the gene pool, from which I sprung.”

Lindsay: Right? I joke about this. Because I have one older sister, biological, older sister, and she has none of these issues. I was like, you guys saved it all for me. I got the heart from my dad. I got the connective tissue disorder from my mom. I’m like, “What is going on, you guys?”

Karen: They just think you’re so special.

Lindsay: We joke about my heart, too, because I was born into a family of very emotional feelers. I’m the one person in the family who is a T. You know, if you’re into Myers-Briggs, I’m the only T in my entire family. I’m the thinker, they’re all feelers. So we joke about my broken heart and my lack of flexibility.

It’s funny. God has a sense of humor. He does. I’m just convinced. But yes, the book launch, I have learned to be flexible. Especially in publishing where you can plan and plan, and everybody’s got these great production calendars, and you’ve got all of these dates and everything is lined up. Then the delays started happening, or the problem over here with Amazon, or the problem with the printer, or just whatever. You know, there’s always something popping up in publishing.

With The Story Hunter, I was so chill about all of those things that came up. I was just like, okay, well, if the release is delayed, it’s delayed. Again, I’m not that important. Nothing is going to explode or implode if my book doesn’t release exactly on time, or if there’s a delay in shipping. I mean, that’s hard for my readers because I ended book two on a cliffhanger, and they’ve been waiting for this book for like a year at that point. That’s a bummer for them, and I feel bad about that. But really, we just have to go with the flow on these things.

The second book in the series, The Story Raider, which came out in 2019 actually had a harder, more delay-ridden, more tumultuous journey to the shelf than The Story Hunter did. So I was prepared. I was like, nothing can be worse than The Story Raider. It’s gotta be better. And it was. It was fine, you know?

Erin: Wow. So you didn’t feel like there was really any negative impact or anything like that?

Lindsay: I think that because of the pandemic, I think people were actually reading a little bit more. You know, they were stuck at home, especially at that time early on in the pandemic.

I know that some of my friends had very difficult launches, so I don’t want to minimize any of that, you know, difficult launches in 2020. But right where I hit, I think that people were looking for a bit of an escape. They were looking for novels to read. So I didn’t notice a real big impact sales-wise or just anything.

It just kind of rolled the way it was supposed to, and everything was okay. We had a much choppier experience with Raider the year before. Because there was just business stuff outside of my control, outside of my publisher’s control. That was a really rocky road.

Just like with all my health stuff, I feel like I got prepped with something that was harder. I kind of cut my teeth on something that was harder. Then, when what looks on paper like it would be the big disaster in 2020, when that came along, it was like, everything’s going to be okay. ‘Cause I’ve already been through, as far as book launches are concerned, I’ve been through worse. So it’s going to be fine.

Erin: That’s very cool. So we’re getting near again to the end of our time. Do you have some final words of wisdom that you would want to tell, maybe young writers out there, or people struggling with their own chronic illness, or family members with chronic illness, or anything completely off topic?

Lindsay: I think, and it’s almost cliche at this point in the chronic illness community, we’ve all heard probably the concept of spoons at this point.

Karen: The only spoons I know is a game.

Lindsay: That’s fun too. Oh, yay. I’m so excited to share this. Okay, the concept of spoons is that spoons are like your energy or your capacity to do things, basically. When you have a chronic illness, you just start the day with a certain number of spoons. One day might be like a two-spoon day when you’ve got almost nothing.  Just getting up and getting into the shower to clean yourself, costs you a spoon. Then you’re down to just one, and what are you going to do with that spoon for the day?

This is a really helpful way for me to explain to people who don’t have chronic illnesses what it’s like. I may wake up with say, 20 spoons in a day. And I’m going to spend a certain number of those just being a mom, and being a wife, and taking care of my kids, taking care of my house. Then you’re left with a certain number and what are you going to do with those?

And self-care costs spoons. Working out costs me spoons, which is important for my joints. I have to work out. That’s not like a luxury, you know?

So, that idea of having a limited amount of resources and energy, that is important in explaining to other people what it’s like. And how even the small things that they don’t even think about, like my husband is such a healthy guy and he’s got all the energy, I feel like he has unlimited spoons. Of course he doesn’t, because nobody does, but he starts with so many.

He doesn’t even think about stuff like going and taking a shower, that that would cost any kind of energy for him. He just does that. For me, that does cost me some of my spoons.

I find that very helpful in helping people understand, but also in reframing the way I think about my day. My time, my life. It’s just acknowledging that I have a limited number of spoons. What am I going to say yes to? What do I want to spend those spoons on? Because it’s not unlimited.

I want to spend my spoons doing things that I love, not just things that I like. That really helps me to decide what I want to say yes to. I want to say yes to being a fantasy novelist.

I want to spend my spoons doing things that I love, not just things that I like. That really helps me to decide what I want to say yes to. @LinzyAFranklin @Karenball1 #amwriting Click To Tweet

Do I want to say yes to being a volunteer over here? Or doing this other kind of book? Or you know, any of the other opportunities that come up to me. I really have to weigh that. Do I want to spend however many spoons it’s going to cost me for whatever period of time on that project?

So it’s helpful to explain to other people, but it’s been really important to me in reframing how I think about my life.

Erin: I love that.

Karen: Lindsay, it’s been so good to have you on again, to talk through all these things. And it’s encouraging because it helps remind us that we can only do what we can do. We shouldn’t be trying to get in there doing other people’s jobs. We shouldn’t be trying to get in there and do God’s job.

These things that are in our lives that come to us, health, family, all of it, it comes for a reason and God uses them for these amazing tools to teach us and refine us. I went from being a high energy level, type-A personality “gotta do it, gotta be the best,” to being, “Oh, well, God’s got this.” And I’m very comfortable with that.

I’m comfortable with saying I can do what I can do, and the rest is up to God. It’s not on me. I think more of us need to come to that place, as you have with what you’ve learned. Thank you so much for sharing with our listeners today. We really appreciate it.

Erin: We do!

Lindsay: It’s been my pleasure. Thank you so much for having me back on.

WE WANT TO HEAR FROM YOU!

Do you feel like your body is sabotaging your writing journey? What helps you keep writing?

THE NOVEL MARKETING PODCAST

For the next few months, we have a sponsorship from the Novel Marketing podcast.

This helps you guys and us because we’re going to bring you Novel Marketing’s 10 Commandments of Book Marketing. We highly recommend this podcast with host Thomas Umstattd Jr., who is a genius on marketing and all things publishing. You can find the podcast at novelmarketing.com.

Today we’re covering commandment number four: Thou shalt measure thy marketing.

It doesn’t do you any good to spend time or marketing dollars on tactics that don’t generate sales for you, and the only way you’re going to know that is to measure it. You’ve got to look at the data. We have limited resources. Our time, our money. So we have to be wise in how we invest.

You also have to be careful about copying someone else’s tactics that might’ve worked for them. They might not work for you. Or worse, maybe it doesn’t work for them, either, only they don’t know that because they didn’t measure their data.

Another bonus to measuring your marketing is that it frees you from blindly following any marketing fads or superstitions that may be out there. You don’t have to feel guilty about not doing some new hot marketing thing that everyone else is doing if you know it’s not going to work for you.

For more book promotion and platform help, listen to Novel Marketing in your favorite podcast app or at novelmarketing.com.

BOOKS MENTIONED IN THE PODCAST

The Story Raider by Lindsay A. Franklin

The Story Hunter by Lindsay A. Franklin

(All product links are affiliate links. Using them helps support this podcast. Thank you!)

THANK YOU!

Thanks to all our patrons on Patreon! You help make this podcast possible!

Special thanks to our April sponsor of the month, Tammy Partlow! She’s a speaker at women’s retreats, and her debut novel Blood Beneath the Pines, a suspense set in the deep South, is now available. She’s hard at work on the next book in the series!

Many thanks also to the folks at Podcast P.S. for their fabulous sound editing!

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So many times on our writing journey, and in our lives, we find ourselves waiting…and waiting…and waiting for answers we need. It can even feel as though God has forgotten us. Guest Lindsay Franklin shares her experiences with waiting for answers and what amazing insights God taught her as she waited.

About Lindsay A. Franklin

Lindsay A. Franklin is a Carol Award–winning author, freelance editor, and homeschooling mom of three. She would wear pajama pants all the time if it were socially acceptable. Lindsay lives in her native San Diego with her scruffy-looking nerf-herder husband, their precious geeklings, three demanding thunder pillows (a.k.a. cats), and a stuffed marsupial named Wombatman. She’s @LinzyAFranklin on Instagram and Twitter, and she Facebooks at facebook.com/LindsayAFranklin.

Thanks to our sponsors on Patreon, we’re able to offer an edited transcript of the podcast! 

Karen: Welcome, listeners, to the deep. We have an exciting show for you today because we have a guest, Lindsay A. Franklin, and Erin is going to introduce her.

Erin: I love it when I get to introduce somebody. I first met Lindsay at the Mount Hermon Christian Writers Conference way back before she was published, and now she’s a Carol-Award winning author. Yes, indeed. Her first book, The Story Peddler, which is a YA fantasy, published by Enclave, won the Carol Award for debut novel. That was the first book of a three book trilogy, and that third just came out I think last year, when COVID was shutting everything down. So that may have been interesting. We may even talk about that a little today. Lindsay is a freelance editor as well, and a homeschooling mom of three. And this is my favorite thing, guys: she would wear pajama pants all the time if it were socially acceptable.

Karen: She’s wearing them now.

Erin: I’m wearing them too.

Karen: I’m so out of it with my jeans.

Erin: Well, Lindsay, as you can see, we are glad to have you. Welcome!

Lindsay: Thank you so much for having me. I’m so excited to be here.

Erin: In your pajama pants.

Lindsay: When I can get away with it.

Erin: Lindsay, our first thing we always want to find out from listeners is what does the deep mean to you?

Lindsay: Ooh, that’s a really great question.

To me, the deep is like an intense, quiet place. Does that make sense? Does that description kind of capture it? The places that are the deep places for me are the ones where it’s just me and it’s God and that’s it.

I’m really excited to talk to your listeners today about some of these things, because I feel like I spend half my life pulling from the deep. I’m sure many of your listeners can relate, and you guys probably can too.

Erin: Yes we can, in fact. Let’s start from the beginning. We met, I mentioned, at a writer’s conference. So what were you doing there? What made you pursue writing to begin with?

Lindsay: I think like a lot of writers, maybe especially fiction authors, I always wrote stories. That was just something I did. I didn’t realize that was unusual. I was like 11 years old writing a novel, and I just didn’t know that wasn’t a thing that a lot of people did as a pastime. Honestly, it never occurred to me all throughout my childhood, my adolescent years, I didn’t realize that it could be a career.

Obviously, I knew people did that, but it never occurred to me that that could be something I would get into as a career. I wanted to be an attorney. I thought about being an English teacher. Those seemed like careers to me. Writing books, telling stories, that was just the thing that I did.

I didn’t think about it very seriously until I wrote a book as an adult. I wrote a fantasy manuscript as an adult and thought, “Maybe other people would want to read this. I should look into what publishing is all about. That might be a thing I should do.”

This was like in 2009 or so. There wasn’t the information out there about indie publishing that, if I were doing those searches now, there would be a whole different world for me to discover as a young writer. Maybe I would’ve pursued that avenue. But in 2009, indie publishing was  certainly gaining steam, but it wasn’t quite the thing that it is in 2021.

I ended up researching what traditional publication was like. I found out that literary agents were a thing. I was very green, let’s put it that way. I found my future agent on online through various searching and clicking and all of these different things. I just really connected with her bio on the agency website.

I saw on her schedule that she was planning to be at a writer’s conference coming up in two weeks. My husband said, “You should do this.” He booked me a flight and I went. We had little children at the time. Looking back, it’s like, what in the world were we thinking? But that’s how I ended up at my first writer’s conference.

I pitched to that agent. I had no clue what I was doing, and she saw potential. Let’s put it that way. She told me to submit. So I went home and rewrote my entire manuscript because I learned about point of view. I learned about “show, don’t tell” at that conference.

I knew I needed to rewrite my draft because it was such a mess. But I did that and then submitted the full to her some months later. By the end of that year, I was signed with her.

Karen: Very cool. That was the Mt. Hermon Christian Writers Conference, and your agent is Rachel Kent.

Erin: I remember one of the visits that I had at Mount Herman, where you and I met each other, I remember we had a conversation about some health issues that you were dealing with. What happened with that?

Lindsay: This is a complicated question because my family is a medically complicated family. We may have talked at the time about my son’s issues. We may have talked about my issues.

Erin: I think you were still looking for answers for your issues.

Lindsay: Yes. That’s probably accurate given the timeframe. I have Ehlers-Danlos Syndrome. That is a connective tissue disorder. It basically means that the collagen in my body is put together in a structurally unsound way, if that’s a helpful description of it. My collagen is faulty.

You don’t think about collagen probably unless you have a collagen disorder, but it’s in everything. It’s in your bones, it’s in your eyes, it’s in your skin, it’s in your organs. I mean, it’s just everywhere in your body. You can imagine that if your collagen is even just a little bit wonky, it affects everything. Everything in your body.

I was someone who was chronically ill or in pain or struggling with something health-related. But doctors looked at me, they ran tests on me, and there would be indicators of illness and indicators of, you know, something, but I was healthy by most of their standards. So they would notice like severe vitamin deficiencies, but never really have a reason why I was severely vitamin deficient despite having a healthy diet or supplementing.

So there were indicators. I mean, I ended up in the ER one time because I was sitting there watching TV and half of my face went completely numb. I thought I was having a stroke. My tongue even went numb. It was so bizarre, such a bizarre feeling.

I ended up in the ER, but you know, they did all of the tests. They did MRIs. My brain looked fine. They couldn’t figure out what in the world had happened. Ever since then, I’ve continued to randomly get transient numbness in certain parts of my body for no good reason, really, except that everything is just not put together quite the way it’s supposed to be.

Karen: Yeah.

Erin: How do you deal with that and be a writer at the same time? And how did it come to be known as the disease that you now know you have?

Lindsay: Because this is something that I’ve always lived with, and I’ve always had plans and goals and interests and things that I wanted to do with my life, maybe that’s one—this is going to sound very strange when I first say it—but maybe that’s one kind of benefit of a chronic illness that you’re born with. It’s part of your existence. Either you’re going to let that swallow everything about your future and everything about what you want in life, or you’re going to adapt and find some way to still pursue your dreams, to still have the things that you want, that you’re able to pursue in life.

Either you're going to let chronic illness swallow everything about your future and everything you want in life, or you're going to adapt and find some way to still pursue your dreams. #amwriting @LinzyAFranklin @karenball1 Click To Tweet

Sometimes our illnesses do take things off the table for us. That’s a very real fact. I’m definitely not trying to discount that. There are certain things in life that I would love to do that I just won’t or can’t. There’s a grieving process with that sort of thing.

But on the other hand, I’ve always been driven. I’ve always had goals, so I just need to keep pressing forward, recognizing that my life doesn’t belong to me. My source of energy and strength is coming from elsewhere anyways. So I’m just going to use what’s available to me in any given moment and keep pressing forward. That’s how I approach things.

I also try to be really realistic about what I am able to handle. That varies for me during different seasons. Sometimes I have a ton of energy. I’m feeling really great. If I’m not having a cycle of migraines and cluster headaches, for example, I’m doing great. I can work eight hours a day like anybody else and stay on top of my work life.

Other seasons, it’s not that at all. I have to build extra time into deadlines, extra time into pretty much everything because my illness is unpredictable. I don’t know when I’m suddenly going to go numb or have a migraine or be dealing with joint pain or any of those things. So I have to plan to not be able to plan.

Karen: You’re not the only one in your family dealing with this, though, right?

Lindsay: Correct. It’s a genetic disease. My mom and I actually laugh about this now. For so many years throughout my later teens—I got married when I was 18, so I was out of the house fairly young—I’d be calling up my mom in my late teens, or throughout my early to mid twenties and telling her, because this disease progresses as you age, your body is a little less resilient. So if you have hyper-mobility issues, which comes with Ehlers-Danlos, you might have a bunch of dislocations as a kid, and then as you get older, you have dislocations and subluxations, but they might result in ligament tears because you’re getting older. So it’s progressive in that sense.

I would call my mom up and say, “You know, this weird thing happened…” I remember one time I was just standing there doing something and all of a sudden a blood vessel bursts in my hand. For no reason. I didn’t hit it on anything. I was just like, what in the world? I called my mom and she goes, “Oh yeah, that happens sometimes,” because she has the same genetic condition that I do, and she didn’t know it. We kind of became this self- perpetuating cycle of affirming that these strange things happening to our bodies were normal because it was happening to both of us. But it’s because I have her genes.

She has EDS. We think she got it from my grandpa. Then I have three children and my two younger children have also been diagnosed with EDS.

Erin: How did it finally get diagnosed? Who discovered this finally?

Lindsay: I want to say, I guess it would have been in 2016. I was in a yoga class, and because I’m hyper mobile, I’m very flexible. So I was doing some show off-y kind of pose. I did the pose just fine but didn’t very gently come out of it, so something happened with my leg, and my knee cap actually dislocated for the second time. That happened to me when I was 18 and the paramedics had to come and pop my knee back into place. But I recovered okay from that because I was 18.

When this happened in 2016 I was, I don’t know, mid-thirties somewhere in there. I’m 38 now, so we can do the math backwards. When that dislocated, one of my ligaments in my knee tore. I had to have surgery to correct that, and EDS tissue doesn’t always heal very well from surgery. My recovery was complicated and long. I just thought, “Something is not right here. Something is off.”

My physical therapist, who was working with me after that surgery, I was seeing her three times a week for months. I had a weird complication with my recovery where I developed adhesions all over the place in my knee. So I had to go back under anesthesia, and the surgeon had to manually break the adhesions. He’s this orthopedic surgeon, and he says, “You’re my youngest patient. You’re my healthiest patient. I don’t know why you are the one having this complication.” He’s like, “These kinds of things keep me up at night. What is the deal with you? I don’t get you.”

I’m like, “Me either. If you can never figure it out, let me know.”

It was actually the physical therapist, because we chatted so much while she was torturing me during therapy, trying to get my knee to bend again. We would talk about my headaches, and we would talk about some of my other symptoms. She was actually the first medical professional to look at the whole picture of my health, honestly, in the way a general practitioner probably should be looking at the big picture.

So I don’t really have an explanation as to why it went under the radar for so long when I did seek help for a number of different things. You’d think somebody would be thinking at some point that there’s a systemic issue here and we should be looking at those kinds of things.

I think that we’re just sort of now catching up in the US. The UK is a little bit ahead of us in regard to connective tissue disorders, so there’s a lot more information out there and help. The NHS is a little more aware of these conditions for whatever reason. They’ve done more research there. With my son’s rare condition, we’ve done more research here in the US, so it just kind of depends.

So, my physical therapist was the one who said, “You really need to talk to the surgeon about this again and see if he’ll refer you out to a rheumatologist or geneticist or somebody.” Because she’s like, “I think you’ve got something going on with your connective tissue.”

It was the geneticist who finally diagnosed me, but it was that physical therapist who set the wheels in motion.

Karen: I listen to you and being able to hear all that and look back, it’s as though God oversaw the whole thing. Well, of course he did, but you can see his hand in all of it. That you wanted to be a writer and not an Olympian. That you had a mother who was able to affirm to you that, yes, this happens to me as well. Even though you didn’t find a medical professional who got it until 2016, that person was there for you and had the wherewithal to look at it and send you where you needed to go for a diagnosis.

As somebody who has a number of health issues that weren’t diagnosed, because there wasn’t a lot of information. Like for fibromyalgia, I have fibromyalgia, so does Erin in fact, and you know, being told it’s all in your head, you’re a hypochondriac. All those kinds of things. You know, the proof is there. They can’t deny the physical proof. They just can’t explain it. So God’s hand, was there providing all along the way for you.

How did your faith develop in the face of all this? I remember being so angry when I didn’t know what was going on. My body was working against me , and I couldn’t figure out why. I couldn’t figure out, if I’m wonderfully made, then why am I so messed up? Am I a hypochondriac? And just really having wrestling matches with God and saying, “I trust you, help me with my lack of trust.”

Lindsay: I love that verse—I think even before I was actually a believer and I was sitting there as a teenager with my first student Bible or whatever, and it was in Mark, it may be also in others of the gospels, but the one that I saw specifically was in Mark and it was, “Lord, I believe. Help me with my unbelief.” I was like, “Right here, my man. I understand. He is my heart friend. I feel you, sir.”

I think by the time my own diagnosis came, I had processed so much related to chronic illness because of my oldest son. My one son who does not have EDS was born with a rare lesion on his brain. So my husband is the only healthy, whole person in our family. He’s just like, “It’s fine. I will take care of all of you. It’s totally fine.”

But yes, our oldest has what’s called a hypothalamic hamartoma. If I can get those words all out, it’s a mouthful. From the time he was an infant, he was having seizures. There’s a whole host of issues that come. You can imagine having any kind of lesion in your brain can lead to a lot of different things. For some kids they’ll get precocious puberty. So you have like babies going through puberty because of where the lesion is on their brain.

That didn’t really happen to my son, but he was shaving by the time he was nine or something. It happened a little bit to him, but it wasn’t as bad as like the infant going through puberty. But he had a really difficult time with seizures. He’s on the autism spectrum. There’s just a lot of stuff that came with that.

I was 18 when I had him. My husband was 20, so we were very young parents dealing with a kid who was sick. I was new in my faith. Our marriage was new. It was an intense season for sure. He did not get diagnosed, my son did not get a full diagnosis, until he was 13 years old. He’s 20 now.

That was quite a long journey, and I went through all of the emotions that you’re describing. I had that with my son’s condition where, you know, there were moments where I felt like, “God, why are you being so mean to my baby? Why is this happening to him?”

I can recall trying to make deals with God. Like, “Okay, I will do this, this, and this, if you will just give some relief to the situation.”

I definitely went through all of that. In a season so intense where my husband and I had so few tools at our disposal because we had no clue what we were doing. We were kids ourselves raising this baby. So it was like, okay, we are going to rely on God completely, because there was no sense that, “Oh, I’ve got this, I can handle this on my own.” I didn’t even know how to change a diaper when I had my baby. So, when you already feel that clueless with the basic stuff and then you’re like, “Oh, and my kid’s having seizures. That’s great.”

We just didn’t even have a choice except to absolutely rely on God to just show us the very next thing that he wanted us to do. I am a long range planner. I like to see the whole picture. I like to consider all of the options and then make really good choices based on everything I see. That’s how I’m built.

God was like, “No, we’re not going to do any of that. I’m going to teach you. Trial by fire. I’m going to teach you to only look at the very next step and make the very best choice that you can in that moment, relying on me, on the Holy Spirit. We’re just going to move forward through your life. One stepping stone at a time.”

Sometimes I felt like I was just getting enough of the next stepping stone to put my toes on. Then the fog would clear a little bit more, then I could put the ball of my foot on the stepping stone.

That is how I lived my life for so many years that it almost becomes habit when you don’t have a choice except to trust. So, by the time my diagnosis came along, I was very like Zen about the whole thing. We finally have a name for the dragon that we’ve been fighting for…I think I was 35 when I finally got diagnosed.

I was like, that’s awesome. Great. You know, bonus.  Now I can actually name this condition. I can research it. I can figure out what’s the best thing I can do for myself. What’s the best thing I can do to help my two younger kids prepare for their lives, lived and spent with EDS and, you know, really equip them so that they will have more tools.

I didn’t have any tools. They will be able to have tools. I just always have to make sure that with them, because they’re going to have a much better leg up into this stuff than I did, I always make sure to point them back to, “Look at the tools that the Lord has given us so that you guys don’t have to be in as much pain.” Because man, I don’t wish the kind of early adulthood that I had, that my husband had, on anybody else. But it really did force us to trust and make our faith the center of everything. I hope that my kids will have that experience too, maybe without so much of the hardship, but we’ll see. Sometimes we need hardship.

Karen: Yeah. Sometimes I think, in fact I know, it’s the hardships that drive us down to, “I know nothing but Christ and him crucified.” That’s the only thing I have to hold on to. And that’s everything. I mean, that’s sufficient, but in our minds we say things like, “I can just trust God,” or, “All I can do is pray.”

When you come on the other side of it and you look at it, you’re like, “You guys, you can pray!” I mean, can I just tell you how powerful that is?

Lindsay: You know, we talk about prayer like it’s passive and it’s not.

Karen: Exactly. It’s warfare. Prayer is warfare. I wish people saw it that way more often. Well, we have hit the end of our time in being able to talk with you. We’re going to have to have you back on, because Lindsay, I want to know how in the world you wrote in the midst of all this. Everything that you were going through sounds to me like pretty much a full time occupation. So how you wrote in the midst of it all, I really want to know that and how God led you in that. So we’ll have you back on.

Thank you so much for what you’ve shared with us today, and that powerful truth that when we finally recognize we are not able, that God is able and he gives us just what we need. He doesn’t give us beyond that, but he gives us what he knows we need to keep moving forward.

I’m so grateful that God has been with you and that he has shown himself to you in the way he has. That’s very encouraging to me and I’m sure it is to our listeners as well. So thank you for being here and for sharing all this with us.

Lindsay: Thank you so much for having me. It’s such a privilege to be able to talk to you ladies and your listeners about this.

WE WANT TO HEAR FROM YOU!

What do you do when you’re waiting for answers? How has God proven himself trustworthy in your waiting times?

THE NOVEL MARKETING PODCAST

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This week we’re talking about commandment number three: Thou shalt persist in thy craft. Let’s face it guys. We all learned to write somewhere in grade school, right? We can make sentences and paragraphs, and sometimes we even punctuate properly. But writing well is another story altogether. Really communicating well and knowing how to create a good structure for a book, or even that there is structure, takes time and practice. To say someone who can make sentences on a page can write a great book is kind of like saying anyone who can talk can win an Academy Award for acting.

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Books mentioned in the podcast

The Story Peddler by Lindsay A. Franklin

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