Wednesday, September 22, 2021

Face Blindness and a Flood of Love


I am face blind (prosopagnosia). This is not a matter of
I-forget-peoples’-names. This is a matter of I-don’t-recognize-my-husband-or-my-children. And, as incredible as this sounds, I don’t recognize myself. At a large function, I thought I saw someone I knew, turns out it was myself—in a mirror.

 After a recent family funeral, I shared photos with relatives who weren’t able to attend. My daughter said, “Tell Jacob his beard looks great!” I thought, “Jacob has a beard?” So, I looked up a picture. And there was my son Jacob standing next to me, with a full beard. It did look nice.

 Anyone reading this probably thinks, “How sad.” But there’s an upside.

 A stranger stood in a driveway I needed to drive into. I waited for him to move, and when he did, I recognized him. Jacob. In that moment, an incredible love flowed through me—this “stranger” is treasured in my heart and soul.

 I don’t think “normal” people experience the same flood of emotion. And I’d never give up this experience—a reminder of how cherished my loved ones are.

 NB: I do have ways of recognizing people. I recognized Jacob by the way he moved. I also recognize people by the sound of their voices. But if someone is silent and standing still, they are a stranger to me.

Friday, September 10, 2021

Friday Five: Living with a Nasty, Incurable, Rare Disease

Yes, living with a nasty, incurable, rare disease is horrible. It is also very funny. Or, perhaps, I have a gallows sense of humor.

 (Before I start this, let me say, since I’ve received my diagnosis, all my doctors have been infinitely kind and caring. I wish all the doctors before the diagnosis had been the same. But that’s another story.)

 How doctors respond to me and Ehlers-Danlos Syndrome.

 When I meet a doctor for the first time, they usually have not looked at my chart. I understand—too many patients, too little time. After greeting me, they say, “So what brings you in today?” I smile my I-hate-to-do-this-to-you-smile and say “I have Ehlers-Danlos Syndrome.” Doctors respond in many ways.

 1. The doctor blinks. He/she blinks because the diagnosis rings a vague alarm bell in their mind. But only a vague one. The doctor makes polite conversation and excuses themselves. While I wait, they are Googling EDS on “Google for Doctors.”

 2. The doctor is disconcerted by getting stuck with an Ehlers-Danlos Syndrome patient. “So, you have ED…”

I try really, really hard not to laugh. In some alternate, doctor world, maybe ED is an acronym for EDS. But in the patient world, ED stands for something else, and I don’t have it.

 3. They pale. My favorite response is the doctor who said, “I read about it in medical school. So, um, why don’t you tell me whatever it is you need, and I’ll greenlight it.”

 4. They try to fix me before they know what’s wrong. These are the doctors who look at my medications list before they look at my diagnosis.

 Doctor: You are on a lot of medications. How do you feel about that?

Me, I feel @#!#? about it, but I say: Well, I have Ehlers-Danlos Syndrome.

Doctor: Oh, right. Good. So, these medications are propping you up.

Me: Yep.

5. The doctor pulls up my x-rays: Doesn’t say a word because he/she is gasping. A second later, he/she is figuring out how to pretend they didn’t gasp.

 I know it’s a Friday Five, but this is your lucky day because I have six.

 6. The doctors perform a procedure (or surgery): These always go wrong. Really, really wrong. When I am awake for the procedure—not often the case—but when I am, I hear the assisting resident say to the other doctor, “Did you see that? What the *%#* happened?”

I tried to warn them beforehand. Honest, I did.

Nota Bene: I included the cute zebra photo because zebras are the mascot for EDS. The photo is from Wikimedia Commons.

Wednesday, September 8, 2021

Cloud Cuckoo Land Book Review

 I was eager to read Cloud Cuckoo Land because I loved Anthony Doerr’s previous book, All the Light We Cannot See. While Cloud Cuckoo Land is a very different type of novel, it is just as beautiful and will stay with you for a long time. In fact, I wish it were already widely available because I want to discuss it with others.

What makes this novel consuming? Again, the novel is beautifully written. The sentences are lyrical without drawing attention to themselves. The plot is well-crafted, and the characters are engaging. But what sets this book apart is that it asks the reader to consider deep philosophical questions about truth, suffering, and the value of story. It has been a long time since I have read a novel that has raised so many thoughts and questions.

That said, CCL starts off a bit slow—in spite of a compelling opening—because the novel has four point-of-view characters, excerpts from an ancient (fictitious) Greek epic, and multiple times periods. While that can be hard to absorb in the beginning, all the characters and settings are fully realized and engrossing. I loved traveling between 2020 America, 1453 Constantinople, and a futuristic spaceship.

I won’t attempt to summarize the plot, but you can read a summary here.

Bottom line, I highly recommend this novel both for the story itself and its profundity. Five stars.

Cloud Cuckoo Land will be available on 9/28/21.

Nota Bene: I received an ARC (advanced reader copy) of this novel from Scribner.