What do you do when your world turns upside down? That’s a question many families with diabetes ask themselves after diagnosis. Carb DM turned to Dr. Lucy Kalanithi for answers and inspiration. Dr. Kalanithi is a clinical assistant professor of medicine at the Stanford University School of Medicine. Her late husband, Dr. Paul Kalanithi, wrote When Breath Becomes Air, a New York Times best-selling memoir about his life and battling stage IV lung cancer. Carb DM invited Dr. Kalanithi to speak at the annual Spring Luncheon. At the luncheon, Dr. Kalanithi sat down with Dr. Diana Naranjo, clinical psychologist at Stanford Children’s Hospital. Dr. Naranjo works with type 1 diabetes patients and serves on the Carb DM advisory board. Her husband, Dr. Korey Hood, has type 1 diabetes.
Below are excerpts from their conversation, edited for clarity and conciseness:
The people in the audience have all either been touched personally by a chronic illness, or love someone with a chronic illness, or have a career in the field. So we really want to hear what your own family’s experience has been with a life changing diagnosis.
Tell us about adapting to your husband’s diagnosis before you knew the course, before you knew the end result. Many patients describe it as a trauma. For many patients, it looks a lot like stress disorder, and impacts their feelings about their diabetes care for the rest of their lives.
My late husband Paul was a neurosurgery resident at Stanford, finding meaning and purpose even during this period of suffering. And for what it’s worth, I was in a serious relationship this past year with someone who has type 1 diabetes, and so does his son.
So I can relate with what you said about that moment of diagnosis. When Paul was diagnosed, it was very clear that his physical condition, and the rest of his life, would be totally impacted by his disease. The thing that I felt so strongly, just as much as thinking about mortality, was this real upheaval of identity. We don’t think about how our identity is so tied up in how we perceive we will be in the future. We have these expectations of certain things. I remember Paul and I looking at his CAT scan together when we got the diagnosis. I remember looking at him and thinking, You’re technically the same person you were a minute ago, and yet you’re totally different. That was so profound and intense.
A lot of families describe this as the loss of their healthy child, and with that, the arrival of a sick child. It’s the loss of this idealized vision of what their future was going to be, and what it now will become. It sparks a lot of fear in some of our patients. How did you handle that fear? How did you handle that unknown, in those early moments and throughout the course of his illness?
The concept of acceptance is so simple, but so complicated and challenging. It was really important for me to talk about the things that were really important, and to actually talk about it out loud. Often times families try to spare each other. For our family, though, just giving each other permission to feel all of that stuff was really important. Give yourself space, whether you are a patient or a family member. Talk about that stuff. You’re totally allowed to feel all of that stuff.
I remember Paul saying, “I want everybody else to take care of Lucy so Lucy can take care of me“. It felt like such an acknowledgement of how the whole family is affected. As a doctor, I tried to take the advice I’d give a patient about ways to cope, like exercise, sleep, and finding social connections, mindfulness meditation.
When I work with families, a lot of parents I talk to are so scared. They are so scared of shorter life expectancy, complications, diminishing quality of life, how it will affect the future. It impacts the way they are able to be in the present with their children because they are so afraid of the future.
One of the things so remarkable to me about the book is that the future was already written. All of our futures are already written, by the way. Note to self: I will die. That is the only thing that I know for sure. It’s going to happen, and I think it’s important that you don’t think about that too much. If we all sat around thinking about it all the time it would be hard to function. But that’s the space that a lot of families are in when I see them. How did you work with, get through, and accept that fear? Knowing how things would end, how do you still create value and meaning in your day to day life, and how might that help some of our families?
This is such a challenge. Tolerating the pain and anxiety emotionally, including witnessing Paul go through such a difficult thing, was the hardest part. The practice skill that helped me was mindfulness meditation. I had had an episode of depression when I was resident training as a physician. I ended up learning how to do mindfulness meditation. It really changed the way I thought about things. It made me much less reactive to thoughts of anxiety. I realized that they are just thoughts. It really changed the way I relate to anxiety. I just realized it’s going to be there, it’s with me all the time.
People oftentimes asked Paul if he ever asked himself, “Why me?”. He responded, “Well, why not me?“. I found that really helpful too. These things happen to everybody. It turns out this is our thing that’s going to happen to us. Something about that helped me.
Also, having such an uncertain future made me more attuned to the moment. It was clear that Paul’s illness was incurable, and we had this little child. I used to wish away time: I can’t wait until she sleeps through the night. But Paul is here now, and she is here now, and I am here now. How great is it to have this crying baby that doesn’t sleep through the night! We’re all together.
I’m married to someone with type 1 diabetes. I also got gestational diabetes when I was pregnant with my son. That point at which I became the wife of the patient and the point at which I became the patient really changed the way I talked about diabetes. It changed the way that I helped train people and the coping skills that I offered. You don’t know the lived experience until you’ve lived it. It has fundamentally changed the way that I practice. How did this experience change the way Paul practiced as a physician, and how did it change the way you practice as a physician?
Can you tell us the ways it changed you?
I am a lot more accepting and empathetic with the trials and tribulations that don’t sound like a big deal but are a such big deal. In diabetes, I talk to families and ask them to accept things that are really challenging. I talk to teens who really hate the tubing because it comes off every soccer practice and soccer is a huge part of their life and affects their quality of life. My experience now gives me a different perspective and allows me to empathize in a way that I wasn’t able to before.
Paul went back to work as a neurosurgeon for a little under a year after his diagnosis. He had always been really interested in the big questions that come with deciding whether to have neurosurgery. He used to talk about risks and benefits of a surgery, especially the serious risks like bleeding or infection or death. After his diagnosis he talked about not just the risks but what it will feel like: what it’s going to feel like when you wake up, what your head is going to look like, when you can go home.
I think a lot about going to the doctor. As a doctor, you see 25 patients a day and you have this ticking clock in your mind. But as a patient you’ve been waiting all day. I think about the ways the healthcare system isn’t set up to think about us and our real lives.
There is a study that came out of the University of Pennsylvania that looked at Yelp reviews of hospitals. Researchers read the reviews and categorized them, then compared them to hospital surveys (Medicare mandated patient experience survey). 7 out of 11 issues in the hospital survey were on the Yelp reviews. However, the Yelp reviews had 12 other things that the hospital surveys did not have, like feeling compassion from people and having the family addressed and taken care of.
I think about clinics being open 8:00am-6:00pm. Human bodies are not scheduled that way. A patient may come to me for a cold, wondering whether they need antibiotics. I could tell them how they don’t need antibiotics, give them the reasons why, and tell them the downsides of antibiotics. But really, they don’t care. They just want to know if it is pneumonia or whether they can go on their business trip tomorrow. I think a lot about understanding the real reasons that patients come in for healthcare in a way that is deeper and different, from having felt that vulnerability too.
I’m curious about your daughter. What is she like?
Our daughter is Cady is 3.5 and she’s smarter than I am. She’s one of those people with her own moral compass. She’s going to be a very cool adult. It’s not clear that she’s going to be too much fun to raise but she is neat. She was 8 months old when Paul died and she was not in any pain when he died.
The challenge for me in part, as she grows up and gets older, and she knows he’s not here, is to help her get to know him. I made a book about Paul so she can get to know him and grow up into the knowledge of who he is.
She knows that Paul died. Child development specialists say to use the phrase, “His body stopped working”. She saw a dried up dead worm the other day and said, “His body stopped working”. She found this little bell that was a party favor at our wedding. I was telling her about the wedding and she asked, “Where was I?” I said, “You weren’t even born yet”, and she said, “I was dead”. It is really interesting to see how a kid makes sense of all this stuff.
Dr. Naranjo (to the audience)
If you haven’t read the book yet, read the book. It’s terrific. Read the book at different times in your life, and read it with different lenses on. For the families here, tying it back to Carb DM, let Carb DM be and mean different things to you at different times. Reach out when you are diagnosed, or when your kids are diagnosed. Then as they grow up and become teens, when they are going to college, reach out again. Really think about wherever you’re at. We are all different and open to new experiences.
Photo from Carb DM’s 4th Annual Spring Luncheon