We were recently in California for my mother-in-law's memorial service. During our time there, we made a quick stop in Malibu.
More photos.
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I am face blind (prosopagnosia). This is not a matter of
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.
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.
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.
My husband and I recently attended a conference in Maine. (One of two states I haven't been to. The other is Louisiana.) Here are some photos from a hike we took.
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| Rugosa roses |
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| Winslow Homer's home. Canon rock is nearby. |
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| Purple sand!! |
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| The sea always calls to me. :) |
But her increasingly erratic
behavior is unsettling. And Helen’s not the only one who’s noticed. Her friends
and family begin to suspect that her strange new friend may be linked to their
shared history in unexpected ways. When Rachel threatens to expose a past crime
that could destroy all of their lives, it becomes clear that there are more
than a few secrets laying beneath the broad-leaved trees and warm lamplight of
Greenwich Park.
My review:
Greenwich Park is a psychological thriller with an unreliable narrator. And even though psych-thrillers are my favorite guilty pleasure, I approached the novel with some trepidation because the genre is hot and many psych-thrillers have become derivative. Happily, Greenwich Park is fresh and engrossing.
The novel is written from three
different viewpoints, which is a hard thing to pull off. But Katherine Faulkner
does it well. Each character (Helen/Serena/Katie) has a distinct voice but
still remains nuanced and intriguing.
The plot is well-crafted and satisfying.
And the pacing is spot-on—I had a hard time putting the novel down.
Bottom line, I give Greenwich Park a
five-star review, and I’m eager to read this debut author’s next novel. I do
need to add a trigger warning: Part of the plot includes the traumatic aftermath
of a rape, though the crime itself does not occur within the scope of the book.
Note: This novel will be released
January 4, 2022.