Earlier this month, I had the opportunity to speak with Lydia Slaby, the author of what is, without a doubt, one of the most engaging, compelling and important reads of this spring — Wait, It Gets Worse (Disruption Books, 2019). In the book, she writes about her health — or, more specifically, her experience of being a seemingly healthy 33 year-old suddenly diagnosed with cancer, her subsequent recovery and all that entailed — her relationship with her husband Michael, and her career as an attorney — all of which seemed to be faltering simultaneously — and, in short, how her life has evolved since that time. Read on to see what she had to say about how the book came about, the importance of physicians seeing patients as whole people and of being a more active participant in your own healthcare, the importance of learning to listen to our bodies, the need to approach healthcare in a more holistic way and much more.
Andrew DeCanniere (AD): To begin at the beginning, how did the book come about?
Lydia Slaby (LS): I discovered fairly early on in my treatment that writing was a way for me to process what was going on. I first started writing in order to understand and recover from the process I was going through. When it became really clear I was not happy in my chosen profession, and that there was still more I needed to manage as a result of my illness and treatment, I realized the only thing that was going to help me get through it was lots and lots of therapy, as well as writing the story in its complete form. I spent a year-and-a-half — from early 2015 to mid-2016 — writing the bulk of the manuscript. Then, after finishing it, reading it, and showing it to a few people, I suddenly realized it was a book that had a message in it that could be helpful to other people. That was when I decided to go out and find a publisher and put her into the world.
AD: I could certainly see how it could help others going through something similar, but also how it could help you process all of what took place. It does seem like you went through a lot between being diagnosed with cancer, the treatment for the cancer, and the two surgeries, just to name some of what happened — and all within a relatively small window of time, too. I would think it all had to be very jarring, to say the least, being this seemingly healthy person who is then catapulted into this precarious position.
LS: Jarring to say the least, yeah. If we think about our lives as humans in this culture, I suppose we have three main concerns. We have the relationship with our own body — so our personal health and well-being. Then, we have our relationships with others. And then we also have the relationship — and this is a little bit more amorphous — with who it is that we want to be in this world. That last one is usually manifested through our career. So, in my case my priorities were my marriage, my personal health and my career.
All of them kind of fell apart in the same two-year period. My career didn’t fall apart in that I was getting fired or anything like that, but my relationship as to who I wanted to present myself as in this world fell apart. Suddenly, what I thought I wanted in my career wasn’t what I wanted anymore. So, all of that really happened at the same time. It wasn’t just my health — although cancer certainly was the most obvious and easiest one for people in my life to understand — but it really was all three of these things that fell apart at that particular moment in my history. Writing helped me process what happened throughout.
AD: And I can imagine it’s all the more helpful when, as you allude to in your book, you feel as though you have no control over what is happening to you — certainly where the medical aspects are concerned. I feel like everyone likes to feel that they have control over what happens to them.
LS: Yeah. That’s the reason we exercise. It’s thereupon why we eat proper food, right? We all think — and it’s not inaccurate — that when you eat good food and when you exercise, there is a stronger chance that you will be healthy. That’s exactly what I was doing right up until the day I was diagnosed. I was exercising and eating properly. I was doing all the right things and then I suddenly had this grapefruit-sized tumor in my chest. It took a minute, as you noticed in the book — and I didn’t really learn this until after the heart surgery — but I learned that even though I have control over what I do, the cancer just showed up. And it showed up in a body that, for all intents and purposes — and from the outside looking in — should not have gotten sick. It was a really dramatic moment for me to be like ‘Okay. I’ve done everything I’m supposed to do and I’m still sick.’ There are multiple choices you can make in that moment. You can panic. You can blame yourself. You can sort of submit to the circumstances as they’re presented. You can submit and then try and control — which almost seems like an oxymoron, but it’s like ‘Okay. I’m going to submit to this thing, but then I’m going to fix this other thing over here.’ So, it really gave me an opportunity — and an ‘opportunity’ is an interesting word — but it was an opportunity for me to understand I don’t have control over aspects of my life that I previously thought I did. So, I agree with your little assessment there.
AD: And I think it really does challenge the assumption that what you do does, to a fairly great extent, determine what will or won’t happen. Clearly, while there are behaviors that may put one at more or less risk for developing certain diseases — like, for instance, cancer or diabetes or heart disease — I think this certainly underscores the idea that there are also other variables at play as well.
LS: I think it’s also important to note I was working at an incredibly stressful job. I don’t have a body that can support me through 14 hour days that are super stressful without having a problem of some sort. It’s an interesting moment of recognizing personal limits. All humans believe that if they just push and push and push, they can create their own reality. That’s true, to an extent. You can only create the reality your own circumstances permit you to create. Those circumstances might be extraordinary and, in my case, I could only have my body be so healthy while doing so much that was bad for it at the same time.
AD: Another thing that I thought was important is how you stress the importance of physicians treating patients as whole people — not just an illness. I feel like way too often, they can see the illness but they don’t always see the person.
LS: Especially when you’ve already been diagnosed with something. Suddenly, you are a set equation in doctors’ minds. We could have a larger conversation about healthcare in this country, but that would take us off-track. It’s hard for anyone — whether you’re a doctor or lawyer or reporter, we all look at the world from the lens of our own perspective. When a doctor sees someone with cancer in their history, they are predisposed to think of cancer as an ongoing issue. That was clearly what happened with me when it came to my heart surgery. That’s a byproduct of doctors having very little time to treat the patients that are in front of them, but it’s also a byproduct of being human.
The most important thing I learned was to constantly remind doctors I’m a complete person. Cancer is a part of my history, but it’s not my complete health history. That’s the part about being an active patient that I think is very important to remember. Sometimes, we just look at doctors, and we see this vast medical knowledge, and we just submit to their expertise. I’m not saying their expertise is not worthy of being submitted to, but it’s much more of a conversation than I think many people realize when they go to see their doctor. In my case, it’s always a conversation in terms of medications, in terms of protocols, et cetera. There’s a lot of ‘Is this really necessary?’ and a lot of ‘Well, okay. Maybe it is.’ So, there’s no part of me that walks into a doctor’s office anymore and just kind of rolls over. I’m aware that I’m speaking to an expert but, at the same time, I’m aware it’s also a conversation.
AD: And I think not enough people see it that way. It’s good to listen to what they have to say, but it’s also good to question things.
LS: And it helps the doctor to see you as more than a patient. If you walk in with classic symptoms of stress, without so much as looking up from their notes the doctor will be like ‘Okay, exercise more. Learn to meditate. Try and have a less stressful life.’ It’s only when the patient truly engages and tells the doctor everything that has been going on and has an engaged conversation that the interesting stuff starts to come out. I believe the relationship we have with our physicians is very much a two-way street.
AD: Right. It’s more of a partnership than, say, a dictatorship.
LS: Very much so. I also touch on the relationship with my husband in the book. What I’m beginning to realize as I do more work with the book — now that it’s out — is that I tried to control him and his decisions in the same way that I was trying to control my body and my body’s outcomes. As with all coping mechanisms, it works until it doesn’t. At the same time, my body was falling apart, my relationship was falling apart, and my initial reaction was to just try and control it more — work out more, control the conversation more, so on and so forth.
When you’re in a conversation with a doctor, it’s the same thing. It’s very much a give-and-take. You’re responsible for yourself, and then you’re responsible for making sure the doctor sees you in a certain way, and apart from that there’s not a lot you can do about it.
AD: Absolutely. Whether we’re talking about a relationship between oneself and their significant other, or a relationship between you and a medical professional — or, for that matter, you and whomever it may be — you can ultimately only control your own decisions and actions, your own response to what happens and to what other people do. You can’t control others.
LS: That’s why I like to tell people we have one-hundred percent control over our own actions and our own behavior, and zero percent control over anything else.
AD: You also talk a bit about how you have a couple of cats — Ellie and Jake — and how they ended up teaching you as well, when it came to how to listen to your own body and its messages. I just found that interesting, because I think we all get various messages from our bodies, but we often just sort of ignore things.
LS: We do. If I’d really been paying close attention to my body, I probably would’ve caught the cancer three to four months earlier. I had a lot going on at the time. There was all this garbage with Michael. There was my job, which was very stressful. And then there was my body falling apart. We don’t want our bodies to fall apart, so we’re much more inclined to blame health issues on things other than our actual physical health — ‘Oh, it’s stress’ or ‘I pulled a muscle.’ I’m not saying everybody who has the same kind of chest pain I had has cancer. That is not inviting everyone to be a hypochondriac, but there are some pretty major differences between what I thought I had and what I actually had. After I was diagnosed, my cats were very helpful in teaching me how to pay attention to my own body, and they still are.
AD: Right. I mean, I definitely don’t want people to start logging onto WebMD and begin diagnosing themselves.
LS: No. Nine times out of ten, it really is just a pulled muscle. But if you’re dealing with something for much longer than it should be taking to resolve, that’s when you actually have to start paying attention to it.
AD: Not that it’s bad to do a bit of research yourself, particularly when it’s necessary. That said, I feel like at least half the time, when you look something up on WebMD, you come away from that whole experience convinced you have some sort of super rare or super serious condition.
LS: And that’s sort of coming from the perspective of fear. The Internet does a good job of feeding our fears. That’s one of the reasons I never Googled my diagnosis. There was no point. I was going through what I was going through, and it was going to be the experience that I had. The Internet wasn’t going to tell me — one way or the other — if I was going to have a different experience.
AD: Right. It’s not a fortune teller.
LS: But we do sometimes treat it that way.
AD: You also talk a bit about this desire that you had to go back to your old life — how you saw that as the solution or way out of the situation you found yourself in.
LS: It’s a very human reaction, right? When you’re uncomfortable, the first thing you want to do is go back to the last time you were comfortable. The very obvious form of that is if you stick your finger in a fire, and it hurts, you immediately pull it out of the fire because that was the last time your finger wasn’t hurting. It’s much harder to do that with life, especially when life is changing around us all the time. There is no real back. We’d like to think that there is. There are environments that are familiar and comfortable — like when you go back home or back to work or back to the gym — but who you are, when you walk in that door, is a different person after an experience like this.
What I learned is that it was trivializing the experience to think I could just slide myself back into the life I used to have. First, it was impossible. Second, it wasn’t taking advantage of the possible lessons being presented to me as a result of the experience — but I tried. As you know, there’s a whole section of the book when I tried. I tried to do it when it came to my body and I tried to do it when it came to my career, and it failed, but that’s what we try to do. As humans, we crave comfort. We crave that comfort of the last known. Many times, it’s why people stay in abusive relationships. The discomfort of the known is, in some ways, more comfortable than whatever could be happening out there in the unknown. In some respects, I wrote my book to try and help people to take that step, to jump off that cliff and say ‘Whatever it is, it’s going to be different, and different is always interesting, and what is the point of this life if we’re not learning, exploring and trying different things?’ In my case, it turned out to be a brilliant idea. My health is better than it ever was. My marriage is better than it ever was. How I’m expressing myself in the world is exactly the way I want to be expressing myself. At the end of the day, I think trying to shoehorn our way back into a life that doesn’t exist anymore does more harm than good.
AD: And I know that I can sometimes be a creature of habit. I’ve also been told as much by some who know me. It’s not that I don’t like trying anything new — and, in fact, one of things that I like most about what I do is that, to some degree, I’m always working on something new. That said, it does seem there is value in being ready, willing and able to explore things outside of one’s comfort zone, and it does seem that it is often outside of one’s comfort zone that one can experience the most and learn the most — and ultimately grow the most. I think it’s just taking that initial step that can be a bit daunting at times.
LS: And I’m not suggesting people go quit their jobs and relationships and move to Saskatchewan. It’s more just that if the current is uncomfortable, but the idea of leaving the current is more uncomfortable to you, then maybe there’s an opportunity there, right? But if the current is comfortable — if the relationship you’re in is lovely, the career you have is great, and your health is fantastic — that’s phenomenal. Live your life and pay attention to the moments where that could change. However, it’s a rare person who is really thriving on all three of those counts. So, when you’re not thriving on one of those counts — or perhaps even two — it’s an opportunity to think about your life in a different way.
AD: Although I think it’s fair to say that nobody ever wishes to be ill, you also talk a bit about how you had this sort of desire to go back to the hospital because, as you say, you felt as though the hospital was the only place in which it was possible for your to live in the present moment.
LS: That speaks very much to the fact that I was still trying to figure out how to live more in the present. The only example I had of that was the time that I spent in the hospital. I didn’t have any examples of that in my day-to-day life that I could hold onto. So, that anguish was real. Getting thrown out of the hospital and back into a life I was supposed to be excited to be living was one of the hardest things about recovery. I had so many questions. Having the brain that I have and the education that I have, my brain is always chattering at me. It’s always throwing out different opinions, different ideas. That’s one of the reasons meditation is so soothing for me. It calms my brain down. It makes it a little less manic. The only time I’d lived my life in that same way was when I was in the hospital. The hospital was super nurturing for that side of my personality. It was super nurturing for me to learn how to live quietly in the present. Now that I have a little more experience with being quiet and present outside of the hospital, I don’t crave that anymore. But it took practice to learn how to be that way and not also be sick and panicked all of the rest of it in the meantime. It was probably the hardest part of being told I don’t have cancer anymore — just being thrown back into the cacophony of my life without any kind of life preserver.
AD: I think that, in general, many people could relate to that thing of finding it hard to just be in the present moment — perhaps more so now than ever before. You spoke about how writing helped you to process what happened, but it also seems like your writing — your blogging about your experience, to be precise, also ultimately ended up helping others. You created meaningful change within the hospital through your blog.
LS: That was a pretty amazing moment for me. Until someone says ‘Hey, this isn’t working for me and I can’t be the only one going through this,’ nobody is going to bother to try and change it because if it ain’t broke, don’t fix it, right? So, the fact that I was capable of writing about the experience in such a way that when someone who had the ability to change things read it and changed it, that was incredibly satisfying. It was a nice moment.
AD: And I think it goes to prove that one person can change things for the better. Or, at least, one person can set the necessary change in motion.
LS: Yeah. This issue was affecting perhaps 20 women a week. Still, if we improve the situation for those 20 women that week, that’s something to write home about.
AD: I think so. And, when you stop to think about it, it really adds up over time.
LS: I was really surprised. And the thing is I didn’t actually approach the hospital administration. But maybe this was the way to handle it. You never know, but it worked and I’m so happy about it.
AD: In your book, you also touch on the concepts of ‘dismemberment’ and ‘re-memberment,’ and this need to approach healthcare in a more holistic way. You argue it’s important to address the energetic or spiritual side of things as well.
LS: I don’t consider myself religious, but I do consider myself spiritual, so that’s sometimes a bit of a dance for people to understand. I do believe our bodies are not just our bodies. I firmly believe our bodies and our spirit and our energy and all the rest of it is all intimately connected. I believe that because I’ve seen things like acupuncture work and had the experience that I had in the sweat lodge. This kind of medicine works. Especially after my heart surgery, my body needed more than healing on a physical level. It needed a great deal of healing on a physical level, but my body was in such anguish that the rest of me wasn’t doing well. It’s a bit like dissecting a frog in middle school science and then you just leave it on the table and expect it to put itself back together and hop off the table. That’s not possible. Without help, we can’t come back together. This whole idea of ‘dismemberment’ — how medicine dismembers, how surgery dismembers and how extreme moments of trauma dismember — and then this idea of ‘re-membering,’ or bringing things back together, I do think it’s vitally important for medicine to think about this stuff. I even mention it obliquely in the very beginning of my book when I quote that Picasso quote of ‘Every act of creation is first of all an act of destruction.’
The one beautiful thing about dismemberment and re-memberment is that if you’ve been taken apart, you can put yourself back together in kind of any way you want. Obviously, you can’t connect your knee bone to your neck bone, but you can recreate a life that, in some respects, you want to work better for you. So, that’s what it’s about. I do think it’s a subtle way of thinking about healing that Western medicine completely misses. I think it’s doing patients of Western medicine a disservice, and I believe it’s also doing physicians who practice Western medicine a disservice, because we are spiritual beings and I think it is important to treat our bodies in that way.
AD: It seems to me, just from some of the interactions I’ve had, that many doctors can be all too dismissive of those other aspects that make us who we are. It just doesn’t make sense to me.
LS: Well, it doesn’t make sense — especially since doctors see miracles all the time, and they call them miracles instead of what they are, a form of spiritual healing. A miracle implies it’s not replicable, whereas this kind of healing is vastly replicable, but we choose not to engage in it because, in the Western tradition, if we cannot see it with our own eyes then we don’t believe it. That said, I am grateful for Western medicine. Chemotherapy one-hundred percent saved my life, but putting Lydia back together again after Chemotherapy was a much more subtle process that I wish my doctors had been more engaged with.
AD: Right. I don’t think you can just send someone home after an ordeal such as yours and everything is all fixed. In a way, it would be nice if everything were that simple, but it really isn’t.
LS: It’s like ‘Oh, wait. The disease is gone. You’re cured!’ And it’s like ‘Well, I’m cured of that, but what’s happened in the meantime?’ I have a wonderful relationship with my oncologist who is an extraordinary woman and yet we still have these arguments of whether all of this stuff I’ve done after my treatments was necessary or worth it. It’s hard to have this argument and have it actually end in any particular way, because we don’t know what the alternative would’ve been. I firmly believe I’m as healthy as I am because I went through the physical and emotional and spiritual healing I had to go through afterwards — not just because she cured me of the cancer back in 2012. So, you know, we have that argument.
AD: I just think that your book really is such a well-written one that touches on so many important aspects. Is there anything else you wanted to touch on?
LS: I do think that we, as a culture, suffer from being too serious. It’s really important to have serious conversations be serious. The conversations I had about my medicine and treatment were serious conversations, but they lasted for 20 minutes. For the rest of my treatment time in the hospital, I was basically just waiting to see if the medicine would work, waiting to see what side effects would show up, and all the rest of it. During that time, when it wasn’t necessary to be having a serious conversation, you’ll notice I didn’t. I laughed a lot. I had my friends in the hospital. We played games. We joked. I wrote about it with humor. So, I do think there’s an aspect of keeping serious where it belongs and then otherwise letting joy come in, and finding the opportunities to have joy. Even when you’re in a shit situation — and I was in a shit situation being in the hospital and having all of these surgeries and all the rest of it — I had to let joy come in because otherwise I was going to lose my mind. I did that with the book, too, and I did that on purpose. I’m sure there were moments where you yo-yoed from being really upset about something and then, suddenly, you found yourself laughing and weren’t quite sure how that had actually tumbled out. I think that’s a really important way to be as a human.
AD: And last — but certainly not least — what have you been reading lately, or what book recommendations might you have that you would like to share?
LS: I’m actually in the middle of reading a wonderful piece of fiction called Afterworld by Lois Walden. It’s beautifully written and has a little bit of the mystical lyricism that — It reminds me a lot of Love in the Time of Cholera in the way it’s written. It’s lovely. I’m also reading Braiding Sweetgrass by Robin Wall Kimmerer, which is a book about indigenous wisdom and the wisdom of plants. I’m also reading a series of essays called We Are Never Meeting in Real Life by Samantha Irby. It’s a wonderful collection of really honest essays. I read Becoming by Michelle Obama. Of course, everybody has read Becoming. I’m actually in the middle of reading a new book called No Archive Will Restore You by Julietta Singh. It’s a very little book and it’s personal essays but written in this sort of mystical lyricism way as well. My husband got an advance copy of Michael Bennet’s book, The Land of Flickering Lights — the Senator from Colorado who is part of the gang of 45 Democrats running for President — and I like it. I like what he has to say. It’s been an interesting read.
Lydia Slaby is an advocate, speaker, and writer focused on empowering people, communities, and organizations faced with daunting change. She is an advisor to Chicago’s 2nd Story; serves on the board of I AM THAT GIRL, an organization that helps young women around the world take ownership of their self-worth; and was a board member of Critical Mass: The Young Adult Cancer Alliance. She lives with her husband Michael Slaby and their two beautiful cats in Rhinebeck, New York.
To find out more about Lydia and Wait, It Gets Worse visit her website. You can also find her on Twitter and Instagram.
Lydia, I want to be you when/ if I grow up!
What a marvelous interview that was , and personal insights that all of us should read and heed
My daughter in law, Cory s wife has breast cancer
in progress and when she s less tender physically, I shall give her your book and this interview piece
You are an extremely insightful person and I feel fortunate to know you
You have always been my personal favorite among Annie s friends as well as the most beautiful inside and out.
You certainly have earned a tough lesson or two that all of us should appreciate