chronic illness · chronic pain · gen reads · writings

gen reads: how to be sick

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Anyone who knows me knows I am a HUGE book worm. I thought it would be fun to share some books that have changed my life in some way in hopes of them also changing yours. Welcome to Gen Reads, the newest addition to the blog.

About a year ago a friend of a friend posted about a book called “How to Be Sick A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers ” and the title immediately grabbed me.

As a person who is chronically ill I had never once considered the “how to be”, I had been moving through illness without an operation manual for a long time never once considering there could be one. When I looked it up on Amazon, I was intrigued to find out that it was based on Buddhist practices and geared towards both those who are chronically ill AND their caregivers (which is very rare). I have gone through phases of reading books on illness but after feeling like crap all day, the last thing I often wanted to do is focus on on how I am feeling at the end of the day.

I want to escape into someone’s else life more often than I want to spend more time on my own.

I tucked the title into the library in the back of my brain and went on.

A month ago I felt well enough to go to the bookstore and was on a mission to find a Pema Chodron book for a friend. There right above the book I was looking for was How To Be Sick. I felt like the universe was sending me a sign. The night before Sean and I had sat on the couch together and cried about where things were at for me health wise.

To find a book written on the very thing we both were feeling completely suffocated by seemed like the universe/my high power was listening and reaching out.

I took it home and read almost all of it that afternoon.

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The book is amazing for many reasons.

This life-affirming, instructive, and thoroughly inspiring book is a must-read for anyone who is–or who might one day be–sick. And it can also be the perfect gift of guidance, encouragement, and uplifting inspiration to family, friends, and loved ones struggling with the many terrifying or disheartening life changes that come so close on the heels of a diagnosis of a chronic condition or even a life-threatening illness.

Toni Bernhard is a great writer and her story is similar to so many of us. She lead a full amazing life as a law professor, wife, friend and then in a blink of an eye she became mysteriously ill. This illness never went away and she was left to understand and try to survive this new world full of grief and pain with little guidance. Thankfully Toni had studied Buddhism in her “healthy” days and was able to tap into the many practices that come along with mindfulness. This has allowed her to look at “being sick” in new ways, ways that will surprise you and shatter preconceived negative ideas around your illness.

Much of  the beginning of the book centers around grief.

Losing the life that you had along with the body that could do anything it wanted is beyond difficult. There’s grief in trying to find out why you are sick and grief in getting a diagnosis especially if it comes with no cure. There’s grief in trying treatment after treatment. There’s finally grief as the life you had blends into the life you are now stuck with.

The other topic Toni focuses upon is acceptance, the yin to grief’s yang.

She has learned to accept that she will most likely always be sick with her particular chronic illness,  Myalgic Encephalomyelitis (previously known as Chronic Fatigue Syndrome) She has then pushed herself in how to accept the uncertainties of chronic illness along with coping mechanisms and ways of reframing feelings about issues like being unable to work or losing friends/family member’s support. Toni is a Buddhist and applies Buddhist practices to how she deals with her illness but I believe anyone of any faith can find these practices helpful in their own journey with chronic illness.

This book isn’t so much about worship or religious beliefs as it is about making your way through a difficult journey that few are prepared for.

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These passages are some of my favorite and highlight both how beautifully she writes but also Toni’s ability to touch on the multi-layered onion that is chronic illness and pain.

“Each morning you expect to wake up not feeling sick even though for weeks and then months-and then years-that has never been the case. It’s just so hard to,first,truly recognize that you’re chronically ill and, second, to accept that this illness is going to require you to change your plans for life in ways you never imagined…”

“Even in the darkest early days of the illness, when I didn’t understand what was happening to me (was I dying?), I had always had the first noble truth propping me up, telling me “You know this is the way it is. You were born and so are subject to change, disease, and ultimately death. It happens differently for each person. This is one of the ways it’s happening to you”

“I work on treating thoughts and moods as wind, blowing into the mind and blowing out. We can’t control what thought arise in the mind. And moods are as uncontrollable as thoughts. Blue moods arise uninvited, as does fear or anxiety. By working with this wind metaphor, I can hold painful thoughts and blue moods more lightly, knowing they’ll blow on through soon-after all thats what they do”

I would HIGHLY recommend this book to anyone struggling with chronic illness or those who love someone who is chronically ill. This book is also geared towards care takers which I think really sets it apart.

You can purchase this book through Amazon which will help ME pay my medical bills as I am a part of the Amazon Associates Program with Amazon.

Buy this book and help YOU and me out 😉

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