"In comparison to Stephen, most things would be there. If I wanted him, I had to hurry up" (page 36).
While there were numerous public health topics of interest in this book, I was most struck by the strength, resilience, and creativity that Elizabeth brought to her role as a caregiver. While the focus was on Stephen's health, we also learned how and when she needed to take care of herself. Many of her words have stayed with me, so I'm weaving her eloquent quotes into this review.
Throughout the book, I was surprised by how she could both focus on the present and think about her future. Even though she knew that future would not include Stephen at some point:
"Back then, this was my plan to get through Stephen's death: I'd have a life, a self, I wanted to continue after he was gone. But I couldn't invent that on the spot- it would have to already be there, which meant I'd need to live it while he was here too" (page 79).
Because of this mindset, the reader gets to hear about the risks and adventures they took- both big and small. The big being the trips to Mexico, Hawaii, Scotland, and Ireland- the moves to San Francisco, Boston, and back to San Francisco again- going to graduate school- and getting married. The small being the clandestine escapes to the hospital roof for privacy during a long stay and their wonderful hikes around their homes in Denver and San Francisco. Elizabeth's writing is so vivid that you can see the scenery, feel the air on your face, and sometimes hear Stephen's labored breathing.
When Stephen struggles with a dangerous addiction to his pain medication, we are reminded that caregivers deal with all the side effects and dangers that surround an illness- not just the disease itself. Stephen managed to hide the addiction from Elizabeth for almost a year. Their relationship and communication were challenged as she tried various solutions to the problem- locking up the medications, alerting his physicians. Elizabeth talks about how his withdrawal symptoms and subtle disclosures were often lost on her because she always viewed things within the larger context of CF:
"But that was the great thing, and the dangerous thing, about life-threatening illness- every other problem appeared like a sideshow when cast in its light" (page 108).
When Elizabeth battles depression during Stephen's recovery from a double lung transplant, we are reminded that caregivers have their limits and that self-care is incredibly important:
"And then I crashed. Not in the way that Stephen might have, with none of the magnitude or danger, but in the way of a healthy person, slipping slowly, with the strong sense that it couldn't be happening, I could fix it if I just tried hard enough. Maybe I crashed because I finally could, because Stephen was okay" (page 188).
During her recovery from depression and later- as Stephen's condition worsens, the reader is introduced to Elizabeth's amazing support network. I can only hope that every caregiver has a group of friends/family like hers:
"Back home, my friends converged to take care of me, like incredibly skilled dancers, hiding the work of it, moving so seamlessly that I barely noticed the details, I just felt, underneath me, a solid floor" (page 273).
I would highly recommend this book to public health professionals, clinicians, patients, and caregivers. While some parts are heartbreaking, the theme of resilience dominates. We also get an inside view to patients and caregivers that should help us think about access to health care, quality of life, and the empowerment of patients.
I would also recommend this book because Stephen was one of us. After college, he enrolled at the Harvard School of Public Health to pursue his interest in health care policy:
I would also recommend this book because Stephen was one of us. After college, he enrolled at the Harvard School of Public Health to pursue his interest in health care policy:
"Stephen was most concerned about how people without insurance would be managed, or worse, not taken into account at all. He felt indebted to the California state system that covered CF, and he wanted to give back" (page 103).
I hope this book helps continue this legacy for Stephen. I hope the book ignites conversation about access to care, coverage for the uninsured, and support for chronic illness patients, transplant patients, and their families.
Supplemental Information:
- My Foreign Cities: A Memoir- Facebook Page
- Pew Internet & American Life Project- New data on caregivers and how they use technology to find health information
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