E116: Compass Points the Way, a book about living with POTS with author Alexis Kline

Episode 116 February 11, 2023 00:19:44
E116: Compass Points the Way, a book about living with POTS with author Alexis Kline
The POTScast
E116: Compass Points the Way, a book about living with POTS with author Alexis Kline

Feb 11 2023 | 00:19:44

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Hosted By

Cathy Pederson Jill Brook

Show Notes

Alexis modified her own experience with dysautonomia in her book for middle schoolers, "Compass Points the Way." She articulates in this book what most adolescents can't - what it feels like to have POTS during a difficult developmental period. A must read for families wanting to better understand the struggles of growing up with POTS.

You can read the transcript for this episode here: https://tinyurl.com/potscast116

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Episode Transcript

Full Episode Cathy Pederson: Hello POTS patients and lovely people who care about POTS patients. I'm Dr. Cathy Pederson, your guest host for today, and today we have an episode of the POTS Matters. Our very special guest is Alexis Klein, author of a new book for young adults called "Compass Points the Way" about a 12 year old soccer player who develops POTS after heading the ball. Alexis, thank you so much for joining us today. Alexis Kline: Thank you for having me. Cathy Pederson: I was really excited when I read this book and we'll sort of get to that as we go through the interview. But why did you decide to write a book about a 12 year old athlete who suddenly develops POTS? Alexis Kline: I didn't actually set out to write a book about POTS. I set out to write a book about a young athlete who gets sick and gets a dog that helps her overcome the depression and frustration that comes with such a major life change. I didn't actually decide to make that illness POTS until I began writing the book. I ended up going with POTS because I have a lot of knowledge of the disease. I have a similar disease and I know more people are getting diagnosed with POTS as we get more awareness into the medical community. And so I thought that there would be more people who could find this book and hopefully draw some hope and inspiration from it. Cathy Pederson: So you don't actually have POTS yourself. Alexis Kline: I have what they call a undiagnosed form of dysautonomia. I don't quite meet the markers on the tilt table test to be considered a POTS patient. I have a lot of the same symptoms as the other POTS patients that I've talked to and met with. But the Tachycardia is not quite as bad, so they won't classify me as POTS. Cathy Pederson: Okay. So this book is almost 200 pages long. And you wrote it for middle school students primarily. Is that correct? How long did it take you to write the book from your idea stage until publication now? Alexis Kline: Not that long, actually. Once I got going I was probably into the editing stage at about maybe six, eight weeks. And then from the editing to now took the bulk of the time getting the editing done. The cover art and everything else has took longer. But just writing the book came surprisingly quickly. Cathy Pederson: I think editing is the key to writing. I'm a college professor, and that's what I tell my students, you know, getting something on the page. Yeah, that's a good start. But a really good writer spends a lot of time editing and really honing that piece to make it exactly what you want it to be. Alexis Kline: Definitely. Cathy Pederson: So you said that you struggle from a POTS like Syndrome. I know that you mentioned before we started recording, that you have chronic fatigue syndrome. Can I just ask about your particular brand of chronic illness? What symptoms are? Alexis Kline: Yes. So I have small fiber neuropathies and my feet are really bad and it's growing into my legs. My legs have been really bad from the get go. When I got sick almost 15 years ago, the legs were a big thing, touch sensitivity, weakness, soreness fatigue, brain fog. Then all these kind of secondary conditions, the Hashimoto hypothyroidism, the Chiari malformation, the chronic fatigue. So it's kind of a mishmash, but I know most dysautonomia patients are used to that. Cathy Pederson: I think that's exactly right. A lot of our listeners are probably nodding right along. And saying, Yep, I have that too. And the cluster that you're naming, small fiber neuropathy, Chiari, chronic fatigue syndrome, those are all really quite common in the POTS community in much higher numbers than what you would see in the general population. So we're gonna claim you as one of our own. Alexis Kline: Okay. Cathy Pederson: All right, there we go. So this story I think is really gripping and one of the things that I really liked about it is that you were telling the story of the illness, developing doctor's offices, all of that from the perspective of Allie, a young girl who's 12, I think, at the beginning of the book. And I wonder how similar her journey is to what yours was or did you write a completely different scenario for Ally? Alexis Kline: No, the diagnosis journey was very similar to mine. It took me about eight months and lots of doctors appointments. I've always hated doctors long before I got sick and getting sick did not help that. And you just get this constant feeling like they don't know. So why are we spending all of my energy going to doctor's appointments when I have so little energy to spare and it's very frustrating and I think a lot of people, not just in the POTS community, but anyone who's gone through a long diagnosis process can feel that and sympathize with that. Cathy Pederson: Well, and I know when my daughter was diagnosed, I thought the hard part was over. The doctor's visits were over, but it was the diagnosis. We struggled. She saw nine different specialists before we got the correct diagnosis for her. But the treatment saga was just as much visiting, you know, huge numbers of practitioners trying to find some help for symptoms somewhere. Was your journey similar to that? Alexis Kline: Yeah, I mean, because I never got a hard and fast label, there wasn't a lot of treatment. Try this medicine, try that medicine, try this. And then yeah, I'd say, you know, it doesn't work. It just makes me sicker. I wanna go off of that. And they'd say, Okay, we don't have anything else for you. Good luck. So I I haven't had a lot of treatments that way. But I'm still constantly going to appointments to find if we can label something and it doesn't get less frustrating. That's for sure. Cathy Pederson: Right, and especially as a child when there are other things that they would rather do, as you mentioned, it takes energy. This child has limited energy and riding in the car. It may be a couple of hours away to a children's hospital or a specialist that you're trying to see, and then they don't have those answers. It seems futile after a while, right? Yeah. So one part of the book that I really appreciated without giving too much of the storyline away is that the central character Allie who's the 12 year old with POTS was very athletic. She was a soccer player. She had great aspirations in athletics, even at that young age. And then she developed POTS, and within six months or a year, she realizes that she's probably not gonna be a soccer star and she's gotta change her pathway in life. How did you come up with that? Again, is this sort of similar to your own perspective or what happened to you? Alexis Kline: Yes. So that is also part of my story. I was a soccer player. I don't know if I ever would've been as good as she hopes to be, but since I got sick at 12, I can claim that I was, cuz no one can tell me otherwise. But Yeah, so I did, I loved soccer. It was my life and that's what I wanted to do just all the time. So I did have to learn to change the perspective, like, okay, that's done, and we can stop holding onto that. Now it's time to look for something new. Cathy Pederson: Yeah. And I think that's really tough for a teenager. Alexis Kline: I think it's hard for anybody. Cathy Pederson: I do too. But you know, you have so many ideas I think as a kid of what you wanna be and for a lot of folks, the doors haven't started closing yet, and so when an illness closes a door, especially on a dream like that, it's very, very difficult. So can you talk about some of the things you had Allie go through on her way to sort of the other side? Alexis Kline: You know, she definitely deals a little depression frustration with just why aren't I getting better? I should better night by now. I wanna play this next season or the next season. And then some kind of denial, like, you know, I'll just make myself better so that I can play and trying to tough through it and with just more depression, frustration when she realizes that she can't. And just kind of doing what she has to do to get through life, but not having that passion that she had about soccer and she meets a dog Compass, the title character that kind of helps her refocus, reorient herself, and just look for a new passion, a new way to look forward in life. Cathy Pederson: And I thought the way that you introduced Compass was really interesting. So Allie was out with her mom in the book and they stopped into the pet store, not to get a dog, frankly, if I remember correctly, but they were there for some other reason that I don't recall at the moment. And she goes over and sees the dogs and this dog who had been also been depressed right over and seems to just mesh with Allie from the get go. And we're not talking puppy, we're talking 70 pound dog that flops in her lap, right? And so what I thought was so interesting about this is this dog really does change her life. And helps give her that reason to sort of get up and keep going and that unconditional love I think was really important to Allie. But what I thought was interesting was that the dog was not a service dog per se. It was more an emotional support animal who sort of figured out naturally what Allie needed and how to be that physical support and that emotional support for her. Alexis Kline: Yeah. I got a dog about a year into being sick shortly after the diagnosis process, and it was just the family dog. We didn't get it trained to be a service dog, but she had some instincts like running behind me when I was falling down to keep me from hitting my head or whatever. She couldn't keep me upright, but she just cushioned my fall and helped me stay safe. That was just an instinct that she knew to do. But the emotional support and the companionship is what really helped me keep going. It's not like I didn't have support elsewhere. I have a very supportive family, but there's something about that companionship with the dog, that constant companionship that she was with me all the time. That really helped me just get through. Whatever it was that I was feeling and going through and just helped me really change my perspective and give me reason to get up and feed her and take her outside and play with her and love her. Cathy Pederson: Yeah, and you even talk about in the book, you know, is Allie well enough to care for the dog? You know, it's a big dog and, and in the book they talk about, well, you've got a fenced in backyard and you can throw the ball. You may not run the dog for three miles every day, but you can throw the ball and let the dog get the exercise. Alexis Kline: Yes. Cathy Pederson: So I think that's an important perspective. You also talked about how Compass would just lick away the tears, so there's something I think about that unconditional love of an animal like that where they're not judging you. They're not saying, Hey, it's time to stop crying. Alexis Kline: Yes. Cathy Pederson: And I think that was a really sweet part of this story. So did you ever do any training of your dog or was it all instinct for her on how to help you and protect you? Alexis Kline: So for Maddie, my first dog, who this story is based off of, we didn't do any training. It was all instinct. Passed away in 2019 and we got a new dog. And I did some training with her, she could open doors and put away her toys and pick up certain items, but we had never got her certified as a service dog. And she was a lot larger than Maddie, my first dog. And one of the things that she would do was lay across my legs, which would really help the blood pooling. So I think that there's a lot of ways that you can have your dog help you around the house or whatever without actually getting them trained to be a service dog and have to go out with you everywhere. Cathy Pederson: Well, and that training can be very expensive Alexis Kline: Yes, very much so. Cathy Pederson: Exorbitantly expensive, and so there is a middle ground, I think depending on that person and the needs that the individual has. Alexis Kline: Certainly some people may need more than that and it's great if you're able to get a service dog to help you. But if you don't need that all the time, but you need somebody at home to support you and maybe do some little things for you and a dog might be a good option. Cathy Pederson: Absolutely. So your book has just come out, how are you hoping that it will impact the POTS community? Alexis Kline: I hope that it will help some people adjust to the shift of getting sick and having to find a new normal in their life. That can be the hardest part, I think is just accepting that the old normal is gone and a new normal is coming in. But once you accept that, you open up a lot more opportunities and then it's easier to move forward with some hope and bring back some of that joy in your life. Cathy Pederson: I think that's the key, and it's way easier said than done. Accepting the new reality that's very, very difficult to let go of the dreams of your healthy life and adjust your dreams or your goals to your new physical reality. Alexis Kline: Yes, definitely. Like I said, I've been sick for 15 years now and I still often think of myself as an athletic person that likes to do manual labor and not someone who needs to take a nap every day and needs to use a wheelchair to go to the zoo. It's not the way that I tend to see myself. And so making that shift and that mental adjustment is hard and it does take time. But when I do realize that, you know, I'm not gonna be able to go out and work 12 hour days, then I can think about what I can do and I can write a book. Cathy Pederson: Yeah. Is that part of the reason that you've decided to write? Because it's something that you can do on your own time when you're thinking well your good days. Alexis Kline: Yeah. I've always enjoyed writing, but I never necessarily thought of it as what I was going to do with my life because I did like to be active and I wanted to do something active. But when I realized that my ability to be active is limited, I went back to, okay, so what can I do well and what do I enjoy doing? And I realized that writing would be a reasonable path forward for me. Cathy Pederson: I just absolutely love that. And let me say to our listeners, I did read this entire book. I was so honored, she asked me to write a little blurb on the back of the book. I wish that this book had been around when my daughter was going through this, so a decade ago or so, because I think not only should the teenagers who Alexis is really aiming at should read this book, but I also think that the family members, the parents, the siblings should also read it because it's written from the perspective of a child who is struggling with this new reality. And I was near tears several times in this book, sort of thinking about my own daughter as I was reading about your main character, whose name was Allie. And I just think that's so important that we can try to understand the other perspective. It's hard to be the parent when your child's getting sick, but it's really equally hard or or more difficult for that child who's adjusting to all of these things. So I just would really encourage folks to go out and get their hands on this book. Where would people be able to find the book? Alexis Kline: They can get it at Amazon or on my website underthesunpublishing.com. Cathy Pederson: Underthesunpublishing.com and her name is Alexis Kline and the book is called Compass Points the Way. So this is something that I really do hope a lot of folks in our community read. I think this is a real service piece and frankly, I hope you write some others, some other books that are in this realm. I think it is so necessary. Alexis Kline: Thank you. Cathy Pederson: Okay, listeners, we hope that you enjoyed this discussion. We'll be back again with a new episode next week. Until then, thank you for listening, remember you are not alone, and please join us again soon.

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