The Invisible Kingdom: Reimagining Chronic Illness

January 16, 2023

The Invisible Kingdom: Reimagining Chronic Illness by Meghan O'Rourke
Published by Riverhead Books
Publication date: March 1, 2022
Genres: Book Clubs, Non-fiction, Health, Memoir

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I don’t often discuss personal issues in this blog, but for those of you who have been around long enough, you know I have multiple sclerosis. Recently, I read a book that resonated so deeply with me I knew it could have the same impact on other readers. The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke is a memoir of sorts about the slippery, nasty nature of the kinds of diseases more and more Americans are experiencing. Auto-immune diseases such Type 1 diabetes, lupus, rheumatoid arthritis, IBD, among others; invisible diseases that cause intense pain and discomfort, but without the visible effects found in traditional illness.

The Invisible Kingdom is about the decades it takes O’Rourke to get a diagnosis for her illness and what she goes through. It’s hard to express how the opening chapters made me feel, but it’s like finally being seen and understood, even though O’Rourke doesn’t have MS. If you’re living with a chronic disease there’s tremendous comfort in that because even the most compassionate people can’t understand what they can’t see and the toll it takes. More importantly, doctors don’t like problems that can’t be labeled and solved. To be fair, neither do patients. We want an answer, a pill, whatever will make this stop. All of which is exacerbated by a healthcare system that only allows doctors 15 minutes with a patient and encourages speedy, traditional solutions.

O’Rourke is a writer so she’s able to convey a lot of research and jargon in an easy-to-read way. She explores chronic illness on a macro and micro level and her writing is beautiful. The book is split into 3 parts: Obstacles, Mysteries, and Healing and covers so many important elements of living with chronic illness. There’s her journey, the research into auto-immune diseases, the medical community and how women are treated (according to most fatigue is almost always a sign of depression or anxiety), what it’s like for caregivers and loved ones, and finally, what she’s learned for her own life.

Reading The Invisible Kingdom was a journey, one where I initially found myself falling into the traps of a sceptic. Why couldn’t O’Rourke feel better? Did she have buried emotional issues? She was in her late 20s and 30s, how could she be so debilitated without answers? Her blood work, gallons and gallons of it again and again, shows no major signs of anything that would cause such problems. What I learned is that for as much as the medical and scientific community knows, there are still undiscovered universes hidden in the human genome. The easiest example: two people, same race, age, social and economic status get COVID in 2020. One has a bad cold, the other ends up on a ventilator and dies. Why? Because we don’t understand the impact of viruses on the individual genetic structure.

All of which means there’s a lot of work to be done. As O’Rourke points out:

In chronic illness, the patient does not have a problem that can be solved quickly but a disease to be managed, physically and psychologically. Such illnesses can be intractable, messy, mysterious. And doctors don’t like to manage; they like to fix.

This leads me to the only caveat I have for anyone who wants to read The Invisible Kingdom: it’s not a book of answers. The key takeaway is there are NO answers. They don’t know what causes multiple sclerosis; my symptoms may or may not match up with another’s. Additionally, auto-immune diseases travel in packs and once one settles in, it’s very likely others will follow and their symptoms can mimic or compound other issues. They’re sneaky bastards. At best, O’Rourke posits that the old healthcare model needs to be thrown out and a new one created. One based on uncomfortable, unsettling concepts such as uncertainty. The entire medical and scientific community needs to accept that just because they don’t have all the answers doesn’t mean they can’t help. For anyone whose life is impacted by an auto-immune disease The Invisible Kingdom is reading I highly recommend.

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Brain on Fire: My Month of Madness

December 5, 2012

Brain on Fire: My Month of Madness by Susannah Cahalan
Published by Free Press
Publication date: November 13th 2012

You are an outgoing, ambitious journalist already writing for The New York Post at age twenty-four. Suddenly, you start feeling a little off—no appetite, fatigue, and you’re pretty sure people are talking about you. The physical problems increase as do the mental ones—you know people are talking about you and you can see things that no one else can. Your confidence ebbs and flows and your behavior becomes increasingly erratic. Finally, you have a seizure but even then the medical community is not sure what to make of you as all your tests come back normal. Even after a second seizure one neurologist persists in diagnosing you as going through alcohol withdrawal and the rest lean towards a psychiatric problem. You’re admitted to the epilepsy ward of a respected New York hospital and monitored via camera 24/7 but there are still no answers and your condition deteriorates. If this sounds like a journey into hell, it was for Susannah Cahalan.

Finally, through a test as simple as drawing hours on a clock face, a new neurologist was able to move towards an answer that was confirmed after Cahalan underwent a brain biopsy. She had anti-NMDA-receptor autoimmune encephalitis, a disease so rare that, in 2007, she was only the 217^th person to be diagnosed. In essence her body was attacking her brain and causing inflammation. Like many autoimmune diseases, its cause is still unknown but is thought to be a combination of virus and genetic predisposition. In Brain on Fire: My month of Madness Cahalan recreates her month of madness as best she can, given the fact that she has no memory of that time. Instead, she relies on the copious notes, journals, and medical records of family and professionals.

From here on, I remember only very few bits and pieces, mostly hallucinatory, from the time in the hospital. Unlike before, there are now no glimmers of the reliable “I”, the Susannah I had been for the previous twenty-four years. Though I had been gradually losing more and more of myself over the past few weeks, the break between my consciousness and my physical body was now finally fully complete. In essence, I was gone.

Cahalan’s journalistic skills serve her well in Brain on Fire. She is thorough and self-aware, even about the fact that there was a time when she was completely lost to herself. She covers a lot of territory, much of it medical but, while that is interesting and informative, it is her personal story that is at the heart of the book. There is the descent into madness which is frightening enough but also the very long and slow recovery process. Despite diagnosis and treatment there was no guarantee she would recover completely. It is this painfully personal prose that connects the reader to the author and keeps Brain on Fire from being a dry scientific text. Instead, it is scary, intense, and profoundly human.

Does This Church Make Me Look Fat?

October 10, 2012

Does This Church Make Me Look Fat?: A Mennonite Finds Faith, Meets Mr. Right, and Solves Her Lady Problems by Rhoda Janzen
Published by Grand Central Publishing
Publication date: October 2nd 2012
Genres: Humor, Memoir, Non-fiction

I missed Rhoda Janzen’s first book, Mennonite in a Little Black Dress: A Memoir of Going Home so jumping into her newest book, Does This Church Make Look Fat?, was a bit like going to a new high school your sophomore year. Yes, they speak the language but you don’t know any of the backstory or the cliques. Also, I’ll admit it. I wanted to read the book because the title made me laugh out loud. If you read her first book, you’re a little ahead of the game but even if not, Janzen has enough going on in this one and is kind enough to sprinkle references to book one throughout, that you’ll be just fine. In fact, Does This Church, is so front loaded with action, you’ll be at page 100 before you can draw a breath.

Janzen is a Mennonite by birth and upbringing, but like many with an intellectual bent, eventually found the lack of answers to her questions to be problematic. Her love of reading and diagramming sentences led her to a PhD and a career as an English professor and intermittent church attendance with the Episcopals. That’s where this story begins. Within the first three chapters Janzen, coming out of a divorce from a fifteen year marriage, is dating a behemoth named Mitch, who despite a misspent youth is now a fervent Pentecostalist. Janzen approaches this with an academic’s curiosity and open mind, largely drawn in by his caring nature and protective personality. However, after only a month of dating she is informed that she has a large, inoperable tumor in her breast and that the cancer has spread to her lymph nodes.

It’s not clear whether her relationship with Mitch or her devastating diagnosis is the propellant, but Janzen begins to immerse herself in the Pentacostal faith—and in faith period. She lets go of much of her questioning mind and opens herself to…God. At the time of my diagnosis I saw faith in God not as a belief in a real external entity, but as a useful cause-and-effect strategy for managing heartbreak, anxiety, and blame. This can make for unusual reading, especially if you are not prepared for (or expecting) a religious awakening book but Janzen’s humor is such that it is not as off-putting as it could be. Her first experience with someone speaking in tongues?

Even if those gorgeous waves of foreign syllables had come rolling out of my own mouth, I still would have tried to understand the experience as a foreign language. Indeed, is Rosetta Stone offered a course in Holy Ghost for Beginners, I’d have ordered level 1-5 to work on my verbs.

Does This Church covers a lot of territory, largely about relationships. Ours with each other and ours with God. Despite the very dire prognosis, Janzen and Mitch decide to marry and begin to prepare for a life together in Mitch’s home, with his son, and his father. At the same time, Janzen is dealing with cancer and its impact on every aspect of her life. Her tumor does not respond to chemo and it becomes apparent that she may be facing the end of her life. It is now that she realizes how firmly faith has taken ahold of her:

It became clear that prayer really did make a difference. If I hadn’t surrendered to divine will, I would have been fretful, maybe even angry. But it wasn’t like that. It was a season of full rich presence, of mindfulness in the moment, even as the moments ran out.

There is the possibility that in the wrong hands Does This Church Make Me Look Fat? could become a religious treatise but Janzen retains enough of her intellectual leanings so that even as she is submitting to faith and acknowledging it, she is not proselytizing. This is her journey, not one she demands the reader take with her. This religious awakening, mixed with the very important process of marrying a man from whom she is almost diametrically opposed,

Mitch’s and my relationship continually pitted his literality against my metaphoric imagination. Our personalities, our career choices, and especially our spiritual experiences had been shaped by this selfsame divide, and we would have been fools not to see the ramifications of such a fundamental division.

means there’s a lot to process. What makes it possible is Janzen herself, coming through on each page. A wicked sense of humor and a pragmatic mind means Does This Church make Me Look Fat? will be inspirational for those who are inclined towards organized religion and deeply faithful, and still a good read for the rest of us. It’s uplifting without being treacly and an interesting, engaging slice of one woman’s life journey.