There aren’t many quality books being written about MS. When I find one, it’s information worth passing along. I recently read “The Inward Empire: Mapping the Wilds of Mortality and Fatherhood” by Christian Donlan. It’s a terrific book and I highly recommend it. To save (my) precious time and energy, I’m reproducing here the review I wrote on Goodreads:
This is a wonderful book. If you have MS, another neurological illness, and/or children, it’s a great read. Caveat to those with MS: Do not take the book as prescriptive. Because of his slavish reliance on medical professionals and his own flawed notions, the author gets a lot of information about MS and its treatment wrong. He does so with such marvelous prose and wit, though, it doesn’t detract from the book’s overall appeal. In a twisted way, it adds to it.
One fact I learned from the book (I already knew it conceptually but had never labeled it as such): A major and dangerous symptom of MS is selfishness. It’s not only a symptom, it’s an exacerbating factor. Early on, the author tells his doctor that he doesn’t want to get involved in any kind of MS group. In fact, he never wants to meet anyone else with MS. This reluctance costs him dearly in unnecessary physical and emotional trauma.
I wanted to sit down with this guy and talk, not only to try to help him with some major misconceptions about MS, but simply because he seems like a great guy to sit and talk with. Thus, the double whammy of selfishness: He misses out on important insights from others who have limped down the road he is on and he deprives the rest of us of his insights, of which he has many that would benefit others.
Note that he isn’t alone in this attitude. It’s almost impossible to get the newly diagnosed MS patient involved in a support group. If he thinks he’s being counter-cultural, he’s wrong. He’s a caricature in this respect. And that’s sad. It truly takes a village to deal with MS. And not just a village of medical professionals. What ends up happening in many cases, including the author’s, is they end up using their immediate family as their support system, for those who are fortunate enough to have a family to rely on. That’s unfair to the family. And it’s less effective. Again: selfishness.
He’s spot on about his view that MS is unprecedented for everyone who gets it. Each person becomes the only expert in her case. He adds: “In some crucial way, you have to be alone with this.” While there is truth to that statement, it’s misleading. In a more crucial way, you have to get help from (and lend help to) others.
Strangely, the author seems to recognize his mistake when toward the end of the book he says, “MS turns you inwards, I think… It is time for a change of focus.” He reflects further (but not far enough, I think) on this error in the final pages of the book.
The final problem with the author’s story is his willingness to do whatever his doctors tell him. Obviously, I don’t know the fine details of his case, but it’s hard to comprehend a doctor recommending the powerful drug Tecfidera (his unnamed but clearly understood first drug) as a first line treatment. That’s almost unheard of in my experience. Then to move right to Lemtrada, a dangerous chemo drug and a huge hammer, is frightening!
But all that is speculation on my part about the way the author has chosen to follow his path. If his selfishness is his worst enemy, his curiosity might be his best friend. Followed closely by his thoroughly enjoyable writing (it doesn’t hurt that he chose to quote a great short story by one of my favorite authors, Mark Helprin, in one of his anecdotes) and his adorable daughter, Leon. And lest I forget: the British health care system, which has the US “system” beat hollow.
All that said, I loved the book and highly recommend it, especially to my MS friends. You will nod your head in agreement with the author, shout epithets in disagreement, and laugh out loud along the way. You might even shed a few tears.
Great book. Christian Donlan is welcome at my support group meetings any time.