Amy Scher, THIS IS HOW I SAVE MY LIFE
When Amy Scher was told an experimental stem-cell treatment for chronic Lyme disease could kill her, she decided that she wanted to fight to survive. Amy shares with Zibby what she learned during her years of struggling with a chronic illness, how she has learned to reclaim control over her stress, and why we should always listen to our bodies because they will never lie to us. Moms Don’t Have Time to Read Books has teamed up with Katie Couric Media and Random House to give away 100 copies of Sarah Sentilles’ book, Stranger Care! Enter the giveaway by clicking here: https://bit.ly/3jdKctA
Transcript:
Zibby Owens: Welcome, Amy. Thanks for coming on “Moms Don’t Have Time to Read Books.”
Amy B. Scher: Thank you so much. I’m thrilled to be here.
Zibby: Can you please tell everybody about your amazing memoir and why you even decided to write the memoir, your whole trip to India? Give us the whole rundown of the book, please.
Amy: Yes, thank you. This Is How I Save My Life is a book about me trying to save my life, as so many of us do in so many different ways. I am in my twenties, had a mysterious chronic illness that turned out to be chronic Lyme disease, which many more people are familiar with now than they were at the time in around 2006 when I was diagnosed, 2007. I went all over the US trying to save my life. I had brain lesions, neuropathy. I went from a healthy twenty-something-year-old to essentially bedridden. It was me back living in my parents’ bedroom like so many of us end up sometimes. We were really just trying to figure out what would work to not only eradicate my body from the bacteria that causes Lyme disease, but also all the damage that the disease had done over the years when I was undiagnosed or misdiagnosed. Eventually, I found out about a treatment in India that was highly experimental, a stem cell treatment that my doctor said could kill me. At that point, I was in my twenties and I had really tried everything. I had been to the Mayo Clinic. I had been to New York. I had been all over California. I had been everywhere in between to all the best specialists. For reasons unbeknownst to everybody, my body was still failing in ways it shouldn’t have been despite the incredible treatment and the modern technology, the medicine that I got.
I decided that I wanted to take this leap of faith however stupid it might have been. I had no idea. I had a sense it would either kill me or cure me. At that point, to be honest, after seven years of struggling, I wasn’t okay with either one, but I was accepting of either one. I told my parents I wanted to go. They were like, “If you’re going, we’re going too.” My poor parents, they had never been out of the US. They didn’t have passports. I was very well-traveled. I had been everywhere. Here we went off to India for this experimental treatment, which became the unexpectedly family trip of a lifetime.
Zibby: Wow. You were so funny, too, about the person you met who was a quadriplegic who was like, “Oh, yeah, you should just go get stem cells.” You said something like, “As if it were a blowout,” or something funny that you said.
Amy: I met somebody, actually, at a writer’s conference that I barely got myself to. I went to one session of the writer’s conference because I was on antibiotic shots. I had to self-administer them. The hallway from my room to the conference center was too long. I couldn’t do it by myself. It was this whole thing. There, I met a woman who had been for the stem cell treatment and told me about it. She was like, “You should get stem cells. I bet that doctor could help you.” It was like I should just go get a coffee or go get a blowout. Of course, I had to fundraise for the money. There was so much that went into it. The decision was, in part, so easy. When you almost have nothing to lose because you’ve already lost everything, decisions, for me, aren’t as big. I have a harder time now figuring where to go for dinner, the daily things. That will to survive propels you into just doing things when that’s not my personality, necessarily.
Zibby: I related to that so well when you were talking about yourself being a Virgo and how you obsess over menus and all this stuff. I find sometimes the little decisions are the hardest. I could do it this way. When should we leave for this trip? Should we go for the weekend? If we do this, then I have to change this. Then, how should we turn our lives upside down and escape the pandemic? That becomes very easy.
Amy: Let’s just do it. My mom always jokes because I have that. I can’t decide where to go to dinner. She always says, “You’re not buying the restaurant. You’re just eating there. Just pick a place.” It is so true. That’s how I am too with these big decisions. I think something comes through us and we just do instead of
Zibby: I know. Honestly, these little decisions and the time that we spend — I used to think I was indecisive. I’m not indecisive. I’m just trying to make the perfect choice and always optimizing because there’s always a better way. Then I always change the flight or change this or rethink. I don’t think it’s that we’re waffling. It’s not like, I could do this or that. This sounds ridiculous, but each new data point that comes in changes what you might order. What were you going to do for lunch that day?
Amy: Right. I totally have learned as I’ve gotten older, just choose and don’t look back. You just pick for the sake of picking. Then you move on. It’s so easy when you have that personality to waste hours rearranging things that may or may not be any better than the first option except now you lost three hours of your day.
Zibby: I literally had that this morning. I woke up early so I could write, but I also wanted to go to the gym for the first time in forever. I was standing in the kitchen by the coffee machine being like, should I write first? Should I work out first? Should I post and ask random strangers what I should do first? I was like, well, I’ll tell you what I shouldn’t do. I shouldn’t be standing at the coffee machine debating what I should be doing because I’ve just wasted seven minutes.
Amy: Exactly, or you can have another cup of coffee and then probably speed through both.
Zibby: Even when I was in the elevator going down to the gym, I was like, but maybe I should be writing because it’s early and sometimes I write better. Then I’m like, I’m in the elevator.
Amy: That ship has sailed.
Zibby: Stop it.
Amy: I know. We totally drive ourselves crazy.
Zibby: You had this great line in the book, by the way. This is all from the beginning. “Inside the places that no one knows but me, my heart is split in a million pieces because I am a human being who is lodged in the in between, in between living and dying. I want to be better than good enough.” Then you said, “If I don’t move the goalpost for my own life, who will? I want not only to stay alive, but to be alive, to lead a life. I am more afraid of living in this condition forever than I am of dying from it,” which is sort of reflective of what you were saying earlier, that you were in that liminal space and that any action would be okay.
Amy: It’s hard. This is such a discussion in the chronic illness community. I’ve been well for many years now, but I still have friends in those communities where there’s a part of our lives that is easier when we accept it. Then sometimes, we don’t want to accept the thing. I think there’s sort of an in between where I was able to, at some point with lots of struggle, accept where I was in each moment, in each phase. Also, I was unwilling to be stuck in that phase forever. While I know many people who make peace with where they are as far as struggling with an illness, for me, I was like, no, I don’t want to just be good enough. I want to be able to play with my nephew, who was young at the time. I want to be able to support myself one day. I want to be able to do all of these things. For me, I was glad that I kept pushing because it’s so easy to give up. I totally acknowledge that I have an amazing family that stood by my side, which makes it a million times easier. It’s so different for everybody. For me, it was like, I’m going to live, and I’m going to live big. I’m not just going to kind of slide by. That’s an existence. It’s not a life. That was really tough for me, especially in my twenties, to face.
Zibby: How is it now? Obviously, you’ve had a lot of time to reflect with the book. Looking back and moving forward, having that kind of trauma in your twenties is insane. That is a lot to carry around with you.
Amy: Yeah. Now I’m in my early forties. I have worked through all that. That was actually part of the healing process. Not that illness is ever anybody’s fault, but I was actually able to see how some stressful patterns in my life, like being a perfectionist, being a people pleaser, really stressed my physical body. I really struggled to take care of myself, to be carefree, to live in the way that I wanted because I was so hypersensitive and aware of what was going on around me and how people around me were reacting. The illness actually gave me a real opportunity to look at how I wanted to live the next part of my life if I made it. That was part of my healing process, was to learn how to really live for myself. Of course, there are always things we have to do. We have to work. We have to maybe take care of X, Y, and Z. Those things, of course, when we’re adults, we have to do things. It allowed me a space to actually also ask myself what I wanted for my own life besides helping save everybody. I have helper-itis so bad. I can’t even tell you. It gave me the concept of boundaries. I don’t think in my twenties and even into my early thirties I knew how to say no. I didn’t have the language to say it because I was the rock for everybody and the helpful person. I knew how to get stuff done. I was so good at being that person. The illness gave me an opportunity to see how that actually affected me physically.
Zibby: Wow. I feel like you just waved this big warning flag in front of the camera for people.
Amy: Probably in front of every woman who’s watching, right?
Zibby: Yes.
Amy: We all grew up like, physical body means something’s physically wrong. Of course, that is true, but I think there are deeper things. Science has sort of caught up with this idea that our emotional health really does impact our physical body and our immune system and our nervous system. We all know that from this last year and a half, don’t we? That was a lesson I learned earlier. It’s not just the physical body. We look at everything when we’re looking at wellness. That really, really helped me reach my full well-being.
Zibby: I had dinner with a girlfriend who has a new, very big-time stressful job. Suddenly, her back — she’s in the emergency room and this and that. They couldn’t figure it out. I’m like, “Do you think it might be stress? What do you think?” The body, we can’t fool ourselves completely.
Amy: The body doesn’t lie either. Your body will keep coming up with symptoms. I used to be really annoyed at my body because I missed so much of life for an entire decade while all my friends went on — I never went to college. There were so many things I didn’t do, which all turned out okay. There were so many things that I was ten years behind. I was so mad at my body for failing. At some point, I had this epiphany. What if my body’s trying to talk to me? What if the symptoms are the only language it has? The body doesn’t lie. As a perfectionist and people pleaser, I was so good at lying to myself about so many things, about relationships that I was in that weren’t good. I used to be a marketing director for Harley Davidson, which was so fun, but it wasn’t the thing I wanted to do. I was doing it because it was cool and fun. I was lying to myself about so many things in my life, but the body doesn’t lie. It just keeps speaking up and speaking up and speaking up for better or worse until you listen. It was something that was really essentially for me to learn, especially with my personality. Yes, your friend’s back is probably trying to tell her something.
Zibby: Right? Yes. That’s such good advice. You know when a dog shakes? Your only communication is — you can only do so much with what you have.
Amy: Yes, it’s so true. What are our bodies supposed to do when they’re under an immense amount of pressure? Again, we can’t do everything about every adult thing we’re responsible for, but there are plenty of things we can do for ourselves that we don’t do because it’s easier just to ignore it.
Zibby: What are some of your go-to things now to make sure you keep in the moment and doing this and being aware? Do you do yoga? What are your things?
Amy: I don’t. I wish I was a yoga person. I’m not a yoga person.
Zibby: I’m not either.
Amy: I’m not a meditation person. I wish I was all these things. I’m a long walks person. I read. We all know reading’s the best therapy. I do different tapping techniques. I don’t know if you’ve ever heard of Emotional Freedom Technique. Tapping on acupuncture points on the face and body is a really great technique to release stress from the immune system and the nervous system. I really give myself the permission now to do nothing at all when I can. I’m such a doer. I love to have a million projects at once and writing books and all of that. I also just take the pressure off myself. I can do that for myself. I can decide that if I have forty things on my list and only ten get done, it’s not going to be the end of the world. A lot of it, for me, has just been owning that I have more control over the stress. I think I can be, and many women can be, martyrs. We take it all on. We can do it better. I know so many things I can do better than other people in my life, but I just let them do it because then it won’t affect me. It’s just about really letting go in the way that you can, caring a little bit less. Who cares if it doesn’t get done perfectly if it’s something that doesn’t matter? Who cares if I scratch this off my list and I never get to this blog post? If it’s been on my list for forty years or whatever, maybe it’s okay that I don’t write about that or whatever it is. It’s just taking stuff off my own plate that I can.
Zibby: I reference sometimes, this time management expert I interviewed at one point. She had this theory of mod, max, min, or something like that. You can choose what effort level you want for each task. You should be deliberate. Is this a minimum, moderate, or maximum? In the book, she talks about it being in terms of a child’s birthday party. Maybe I was the one who interpreted it for a child’s birthday party after the fact. Basically, you can call and have somebody do the whole thing at one of these kids’ places or you can calligraphy your own invitation. There’s this whole range. I use that now a little bit for, okay, does this have to be done to the best of my ability, or can this be one of those things where I can do it well enough? I think part of the challenge is knowing which of the tasks it’s okay to take the lesser route on.
Amy: That’s so true. That’s absolutely true. It sounds bad to say care a little bit less, but it is so true. Can you care just a little bit less about this thing that nobody will notice? I do that. I used to, when I had people over for dinner, cook everything and make sure everything was done. Now I’m like, I’m just going to run to Zabar’s because they won’t care. I’ll earn back five hours of my day. The things that you can let go of, I think it’s so important to remember, I’m my own boss on so many things. I’m not a very nice one sometimes. I can be. I can just let it go. I can just take it off my own list.
Zibby: Are you in the city? You said Zabar’s.
Amy: I am in the city, yeah.
Zibby: Oh, my gosh, you should’ve come over.
Amy: I would’ve loved that.
Zibby: I have to start, in my emails when I book everything, finding out who’s nearby so I can start doing them in person again.
Amy: I’m on the Upper West Side.
Zibby: Shoot. I’ll be there later today.
Amy: Perfect. Wave when you come over here.
Zibby: Going for vaccine number two for my daughter.
Amy: Congratulations.
Zibby: Thank you. Tell me more about writing now. Tell me about writing this book and selling it and all of that. What’s coming next for you and your whole writing world? All of that good stuff.
Amy: This book has had so many incarnations. This book, I originally self-published in 2013. It started as a series of blog entries. I self-published it. It ended up getting picked up by Simon & Schuster in 2018 and came out in hardcover. This is one of those stories that, as an original self-published author, you always hope will happen, but everyone tells you — my agent was like, “It’s a long shot. You never hear of it,” but it actually happened. It was a series of blog entries. Then when it was picked up by Simon & Schuster, I rewrote it in a narrative format. It got picked up by Simon & Schuster. It came out in 2018 in hardcover. It just came out in paperback. This book has had so many incarnations, which I think is sort of like my life, weirdly. I am in my early forties, but I feel like I’ve lived a million lives because of this story. I really never had the urge to write about this. I always wanted to be a writer. This was my first book. I’m on my fifth book now. This was my first book. I always wanted to be a writer, but I never knew what I wanted to write about. This was just the thing that happened to me that I ended up writing about. I’m so thankful that this story became my story because so many brilliant, amazing, life-changing, wonderful things happened from it. When I was in it, I couldn’t see that coming. To work on this book, as difficult as it was, was such an honor because it really allowed me to see how what we move through helps us move through life and get to, even though it was the windiest, most confusing road in the world, get to all the places that we want to be.
Now I’m a writer. I write books. It’s really my dream job. I’m sure I would’ve gotten here some other way, but writing this book was sort of my way in. This book was really cool to write, but I had a huge challenge in that this book was heavy in topic, chronic illness and the destruction of so much of my life. Anybody who struggles with ongoing illness will understand how it affects relationships, the guilt you feel for screwing up everybody else’s life, all of these things. I had to find a way — I knew that I never wanted to write a depressing book. I knew that nobody going through a chronic illness wanted to read a depressing book. Also, nobody who was healthy would want to read a depressing book either. I didn’t want to write one. My challenge with this book was finding ways to make it funny, finding the levity in it. I think and hope I did that. My family is very much like — we survive on humor, which we really needed during this time period. The writing process for that book was, how can I make it lighter? How can I give it the weight it deserves because it’s a serious topic, but also, how could I not make it depressing? That’s a tough thing to do with memoir. I love memoir. I read tons of it. It can be a downer. That’s because our lives can be at some points. I was determined to find the levity in it. That was a big part of the writing process of this book.
Zibby: It’s so crazy. Half the stuff you say, I feel like you’re me on the West Side. You’re reading my mind. It’s crazy.
Amy: We’re East Side-West Side twins. We do really have to get together in real life.
Zibby: My mom is also named Ellen, by the way.
Amy: That is so funny, oh, my gosh.
Zibby: I never meet anyone whose mom is named Ellen.
Amy: I don’t think I’ve ever either.
Zibby: You described her as — what’d you say? One part Jewish, two parts badass?
Amy: Yes.
Zibby: I love that. Oh, my god, you’re so funny.
Amy: From Brooklyn. Really, that was my writing process, just trying to find levity. Also, with all of my books, I have to say for all the writers out there listening, my writing process is a disaster. I’m writing my first fiction book now, a YA novel. I finally realized that that’s just the process. This is going to be my fifth book. From the first book, the one we’re talking about, all the way through this one, it’s a struggle. I am not one of those people — I do have friends who sit down and they’re like, “I can’t stop writing.” That’s never me. Never. I write in snippets. I don’t ever write a story in order. I write five to fifteen minutes at a time. I have like fifty thousand things to put together at the end of the book because everything’s in pieces. I finally this year realized that’s just my writing process. Always, always, something good comes from the mess. It never starts as a story. I really have to write my way in. Even for nonfiction when I know the story, I have to write my way in to find the story. When we’re talking about writing process, I have to say, I feel like I have to be that transparent author who’s like, it’s a mess. It’s not easy for me either. I think that helps to hear.
Zibby: Totally. I love what you just said, by the way. Always, something good comes from the mess. I feel like that is the whole thing, not just for the process, but the story behind the process.
Amy: Exactly. It comes out of it eventually. You just have to stick with it and move your way through. I’m not an outliner. I start an outline. It’s half done. Then I go to do the book and I’m like, it doesn’t even match the half outline I’ve done. Mine is a mess. Now I just let it be. I’m like, that’s what it’s going to be. If I just know it’s going to be a mess and I don’t try to fix it and I don’t get super upset that it’s a mess, eventually, some book will come out of it. It always does. It makes it so much easier to know.
Zibby: What were the other books about?
Amy: My other books, I have a series called How to Heal Yourself When No One Else Can, which is a series about all the things you can do to actually work on those patterns we talked about. I had a book that came out a couple months ago called How to Heal Yourself from Depression When No One Else Can, which is obviously such a relevant topic. I signed the contract long before the pandemic, but all of the ways that we can reconnect to ourselves to come out of that depression energy and move more into feeling who we really are. It’s been a memoir and three self-help books. Now I am so ready for fiction.
Zibby: That’s exciting. Amazing. That was already a ton of advice for authors, but do you have any parting words of wisdom aside from the fact that we should live in our mess and it’s totally okay?
Amy: Yes, I actually do. Here is my very best trick that will be so life-changing if you do it, but you have to do it. Whether you’re working on an essay or a book or a speech for your brother’s wedding, whatever project you’re working on, you have to, have to, have to — I’m giving this homework — connect with it daily. You cannot try to pick it up once every three days, once a week, once a month. You have to work on it at least five minutes a day, seven days a week. I don’t care if while you’re working on it, you’re reading what you did yesterday or you open it up and you’re looking at it and thinking about it. The daily connection to your project is the most magical recipe for making writing easier. When we’re working on a project and we only pick it up every few days or once a week or once a month, we have to restart our creative flow every time. When you connect with it daily, it becomes a part of the momentum in the writing process. When you get there, you already know it. You’re already familiar. You don’t have to recenter yourself. You don’t have to think, what was I doing? What did I write two weeks ago? You’re never catching up. Even if you’re not going to produce anything, even if you’re not going to do anything productive, working on it, writing for five minutes a day, reading it for five minutes, whatever, thinking about it is the key to keeping your creative flow going. I want to hear from all the people who tried it and were like, five minutes a day, that’s not enough. Five minutes a day is so much better than two hours a week or whatever it’s going to be. It will change your writing life. You have to try it. You can’t take weekends off. As soon as you start taking days off — sometimes it’s midnight and I’m in bed doing my five minutes half asleep with the printed papers. That five minutes a day just really makes the hugest difference in the world.
Zibby: Okay, I’m wrapping my head around that one.
Amy: You’re going to try it, right?
Zibby: I sit down and write for two or three hours.
Amy: You’re amazing. I can’t do it.
Zibby: No, I’m not. I’m not amazing. I have to get in that focus mode or I can’t do it. I don’t think I could do five minutes. I could definitely read it for five minutes. I do have what you say when you go back in and I’m like, where was I? What was I even writing about? What is the style of this? What is this? I do have that problem, but I still
Amy: On the days you don’t have two or three hours, still look at it for five minutes. You’ll get so much more done in those two to three hours that you do have. You may be amazed.
Zibby: That’s probably true. Excellent. Amy, thank you so much. It was so great chatting with you. I feel like now we’re friends, so I hope you feel the same way.
Amy: We are friends. Yes, absolutely.
Zibby: Okay, great. We’ll stay in touch and meet in person and all of that. Congrats on the book in its new iteration. Good luck on all the other stuff.
Amy: Thanks so much, Zibby.
Zibby: Bye.
Amy: Bye.
