The Encore

[Michelle]

Did any of you read this after the podcast? I bought it and read it over the last weekend. I was floored. I'm going to have my in-person book club read it. While it was such a personal accounting her own experience, I thought it beautifully crosses over into helping me understand how many people with terminal illnesses and difficult surgeries must feel. And the wear on the family! Was anyone else just AMAZED at her family—her siblings and mother—and everything they sacrificed for her? Honestly, I think her large family, her plethora of sibling support, ended up saving her life. Her care was so exhausting. I appreciated how matter-of-factly she included her faith throughout the book without ever sounding preachy. I cried so much in this book. This book makes me glad I'm an organ donor.

[Michelle]

I imagine this scene being enacted repeatedly throughout the world as people share their tragic medical news with loved ones:

"After sending the three youngest siblings downstairs to watch TV, Dad calls a family meeting. Ignoring my entreaties to hold off until we have a firmer diagnosis, he announces my condition to the family—resolute that we're going to face this trial together. But I know this is my cross to bear. Not my brothers' or my sisters'. I don't cry in front of them. I won't. I've already given everyone enough to worry about. 'It could be worse!' I quip. 'I still have my looks!' But the stunned, numb silence persists. I try on more time—'At least PH isn't contagious?' Nobody laughs.

Hours later in the dead of night, Mom crawls into my bed. She holds me in the darkness and we weep together. Even without an official diagnosis, we both know that this is the beginning of a goodbye that could last a few months or a few years. Regardless of the pace of change, this disease will shape our family's future and, ultimately, end my life."

[Michelle]

Can anyone picture themselves at sixteen being able to handle what was asked of that sister?

"Initially, I improve, but I feel myself slipping into exhaustion much more quickly in recent weeks—relying on Liberty to cook and run errands because I can't muster the energy to do so myself. Some nights, I wake up to her sitting by my bed, just watching to make sure I'm still breathing."

[Michelle]

"Now it's like that one Christmas when Santa obviously didn't get my letter. I have to grateful for gifts I never asked for in the first place. Someone else has to lift my bags and hail my cabs. I need special food and perpetual hand sanitizer. I'm in a place of unending gratitude, and it can get exhausting. Some days, I'm not grateful that my sister carries in the groceries; I'm not grateful that my siblings are alone in Denver while Mom sleeps in my hospital room. I'm not grateful for the tubes coming out of my neck, my arms, and my chest—even though they're saving my life. I wish I had my own lungs. I wish I was back in Europe singing. I wish Mom was home in Denver sleeping in her own bed. I wish I caused less hardship and sorrow. I wish that, instead of giving me so many little miracles, God would have just given me the one miracle I most wanted. Wouldn't it have been simpler to just cure my PH? Or not give it to me in the first place!"

[Michelle]

This book was an homage to hard working doctors and nurses.

"'The first time I ever saw PH was in the early eighties. The patient was so sick, so young, and no one could figure out what was wrong with her. Everyone had given up, but I stayed beside her all night. She died in my arms after three days. The next time I saw the disease, I was able to diagnose it. I explained that the patient needed to be careful, but we'd treated some of the symptoms and he was feeling better. The night after he was released from care, he went out dancing with friends and dropped dead. When I got that call . . . ' Tears begin to well in her eyes. 'These patients—they just wanted to live their lives, but I was so scared for them. They didn't have to do anything wrong. Just being normal was enough to kill them. I decided I never wanted to see another young person die because of this disease. There were no treatments approved for PH at that time, but I dedicated my life to changing that. Today, there are ten approved and another twenty in the pipeline. Patients have choices now. But being so close—sometimes I couldn't see what it was like to live with a disease like this; with a sickness I know is going to . . . ' she trails off."

[Michelle]

This felt very applicable to regular life.

"The only reliable difference between a music major and a performer—the amateur and the professional—is in their ability to face rejection. It's not the callback that makes you a singer. It's what you do when the callback doesn't come. Do you give up, or do you head to the next audition?"

[Michelle]

And this from the acknowledgements. I hope we all have a sister or friend like this.

"Mercina, when I came home after cancer surgery on my face to find every one of my mirrors covered in comics, I woke down into a soppy mess. You understand the details that make a person . . . feel cared for."

[Jennifer]

Oh, good heavens. I don't think I could handle a read like this. I'm emotional just reading these excerpts!

[Michelle]

Jennifer wrote: "Oh, good heavens. I don't think I could handle a read like this. I'm emotional just reading these excerpts!"

It's intense, but surprisingly positive. In a life where cancer is practically a footnote, you know she's been through IT ALL. I definitely recommend it if you don't mind crying a lot.

[Amy]

Oh I thought about ordering it, now I will have to

[Michelle]

A. wrote: "Oh I thought about ordering it, now I will have to"

Oh, yes, do! Definitely one worth reading and having on your book shelf to read every decade or so and have your kids read some day. It was an eye-opening novel for life with terminal illness and after organ transplants.

[Shawn]

I’m so glad I read this thread before I got this book! I don’t think I can deal with a crier. I’m sure it’s great, but I tend to cry over the silliest books, I don’t really want to get one I KNOW in advance is gonna make me cry.

[Michelle]

Shawn wrote: "I’m so glad I read this thread before I got this book! I don’t think I can deal with a crier. I’m sure it’s great, but I tend to cry over the silliest books, I don’t really want to get one I KNOW i..."

Gah. You know your own limits for whether you want cry-fest novels, but I really want to say again how much I enjoyed it and found it worth reading. (But I also understand your point. It's why I've never seen the film "Titanic.")