I first started having problems with my jaw in middle school. I couldn’t open my mouth all the way for a few weeks, and though it eventually passed, it was the start of a lifetime of dealing with temporomandibular joint disorder (TMD, sometimes also called TMJ). In graduate school, I finally got a mouth guard that made a huge difference for me. I hadn’t realized how much pain I had been in until I started using the guard and experienced days without that low-level tension. I was surprised to learn that my insurance specifically excluded coverage for mouth guards to treat TMD. If I had chosen to get a surgery, that would have been covered, but the less-invasive, and for me incredibly effective, mouth guard was not. I dug into it more and discovered that studies about the efficacy of the mouth guard showed it was not linked to a statistically significant improvement in TMD patients’ pain or jaw function. (There may be more studies at this point; I last checked in 2006 or so.) I saw myself as a rational, science-minded person and the lack of a scientific study backing up my treatment bothered me. It bothered me less, though, than chronic jaw pain, and I have happily worn the guard ever since.
When I got my hands on Through the Shadowlands, Julie Rehmeyer’s memoir about her life with chronic fatigue syndrome (also known as myalgic encephalomyelitis; I will follow her lead and refer to as ME/CFS), I expected something that would echo my experiences as a science-minded person who was using a treatment that science said didn't work. It was so much more than that.
I first heard about Rehmeyer when I started writing for Scientific American in 2012. She is also a science writer with a math background, and people often pointed me to her as someone I could look up to as I started my writing career. In 2013 I was excited that I would finally meet her at a conference and disappointed when she ended up backing out. One of the organizers of a session she was supposed to speak at mentioned that entering the building had made her sick, and she had had to leave. I thought that sounded strange but didn't dwell on it. I finally met her in person at another conference a couple years later in a different city. Now I have the privilege of knowing her as both a role model and a friend.
When I first met Rehmeyer, she talked a little bit about ME/CFS. She said that, although science had not proven a link between mold and ME/CFS, she had gotten dramatically better through extreme mold avoidance. Rehmeyer doesn’t have a mold allergy exactly, but she has the unwelcome superpower of being able to detect minuscule amounts of mold in a building; unfortunately, her way of detecting it leaves her almost unable to walk. So at the conference in 2013 where I had hoped to meet her, she had probably entered the building and immediately started to feel paralyzed due to mold exposure.
Through the Shadowlands details Rehmeyer’s descent into illness and journey towards wellness, and to me, it feels like an extension of that first conversation with her. In the book she goes from running marathons, volunteering with a search-and-rescue team, and building her house with her hands to being too sick to roll over in bed and sleeping for days at a time without feeling refreshed. She visits specialist after specialist with minimal results and eventually turns to online patient forums and finds recovery in the sometimes Sisyphean task of mold avoidance.
Rehmeyer deftly weaves in scientific and medical studies, including the controversial PACE trial that she and others have decried as scientifically inaccurate and harmful to patients. She does, as I expected, write about the challenge of having an illness science doesn’t understand and treating it using techniques not approved by scientists. In the end, though, that was a small part of the book. What blew me away was the way she writes about building a rich life in spite of the setbacks and limitations of her illness. As a mathematician, I was also moved by the way she writes about mathematics as a haven and comfort both after losing her mother and during her illness.
Rehmeyer writes of being alone. She did not know her father growing up, and her siblings left the house when she was young, leaving her alone with her complicated mother, who died when Rehmeyer was 18. At the beginning of the book, her first marriage is falling apart, and a boyfriend she has later isn’t able to cope with her illness. So she was without the safety nets of family or partners many of us have. But she is introspective and reflective, open to new ideas and people, and she forges strong friendships with many people around her, including neighbors and fellow science writers. Since reading the book, I've found myself reflecting more on my own emotions and thinking about how to cultivate the kinds of relationships she has with family and friends.
Through the Shadowlands is a gift, and I am grateful that Rehmeyer trusts us with this frank, intimate look into her life. Like her, I hope it helps us understand and advocate for other patients with ME/CFS, who have been mistreated by the medical establishment, misunderstood by friends and family, and devastated by a terrifying disease.
While you’re waiting for your copy of Through the Shadowlands, here are some recommended reads:
An illness observed: A conversation with Julie Rehmeyer at American Scientist
Rehmeyer’s STAT News article about the PACE trial
Reymeyer's Aeon article about meeting her father's other children
The website for Through the Shadowlands