Tag Archives: cystic fibrosis

Book Review: Salt in My Soul

It’s an interesting feeling to pick up a book when you know how it ends.

When I agreed to write a review of Salt in My Soul: An Unfinished Life by Mallory Smith I wasn’t thinking about that part. So, when the book arrived and there on the cover was a picture of a very alive-looking person doing a headstand, I was hit with a gut-punch realizing I’d promised to write a review about a book by a person who was already dead.

Mallory Smith dies at the end of her book. Mallory Smith is dead.

Now that you know how it ends, too, read it you must! Because it’s 303 pages full of a quarter century of life that was not wasted.

Here’s a deeper reason: it’s achingly human. Salt in My Soul is a raw, unfiltered coming of age story with all the things you’d expect of a child growing up in the ’90s and 2000s through the lens of being sick, incurable, and ultimately terminal. This book inserts humanness and normalcy into sickness, with an inside glimpse into the inner-workings of the mind of a girl growing up, living, and dying with cystic fibrosis.

Cystic fibrosis, from the Cystic Fibrosis Foundation, is “a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time.”

I do not have cystic fibrosis, but I do live with an incurable, progressive disease. I knew I would find Mallory’s story relatable, so I jumped at the chance to read a first-person narrative of life with a disease I’m still learning about. Plus, I love memoirs.

While Salt in My Soul summarizes a life with good periods of health punctuated by unpredictable emergencies and long hospital stays that get longer and closer together as Mallory tacks years on – her doctors becoming like family – the thing that resonates most is this: people living with incurable progressive diseases tend to show a superhero-strong shell, yet live complex and difficult lives on the inside. And Mallory gives us a brave glimpse of the inside. Continue reading Book Review: Salt in My Soul

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When you see me I’m acting

When you see me in public I’m putting on a show. Curtains and…action. Seriously. All the world’s a stage.

Especially when you’re sick. And I mean sick.

Whether you have cancer, ankylosing spondylitis (AS), multiple sclerosis (MS), lyme disease, amyotrophic lateral sclerosis (ALS), fibromyalgia, gastroparesis, vitiligo, rheumatoid arthritis (RA), depression, anxiety, post-traumatic stress syndrome (PTSD), etc etc etc, or a mix of more than one extreme disease, you’ll probably relate to the desire for “normalcy” in this post.

Continue reading When you see me I’m acting

Pain is my fishbowl

Many of us are aware of the U.S. Marine Corps tagline, “Pain is just weakness leaving the body.” There’s also a similar, often-referenced quote by Lance Armstrong:

Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.

By these definitions, my body is a tomb of never-ending weakness and I’m in a perpetual state of temporary pain (and in my case it doesn’t matter if I keep fighting or quit, the pain is still right here with me). Don’t believe everything you think, it was created by someone else’s perspective first.

When people freak out about bruises or scrapes on my body I have never understood the reason. What’s the big deal? Only in these aesthetic instances can I spout the “pain is temporary” mantra and people will understand that I’m just good at sucking it up, so to speak, and they leave it at that.  Most people do not understand that there is deeper, unseen pain that can last forever in our temporary bodies.

©2015, Glenn Jones/Ikona Photography H/MUA Ashley Caudron
©2015, Glenn Jones/Ikona Photography
H/MUA Ashley Caudron

Continue reading Pain is my fishbowl