Thursday, July 4, 2013

reading notes, entry 9...

A Delicate Balance: Living Successfully with Chronic Illness by Susan Milstrey Wells.

It's been a while since I've had a reading entry. I've actually been reading a lot...but finishing little. Yep, lots of books on the go right now.

The title of this book, A Delicate Balance, refers to the delicate balances that people with chronic illnesses must find. The balance between medical treatment and self-care. The balance between acceptance and giving in or giving up. The balance between being productive and taking care of oneself. All of us in this life have to find balance in numerous ways--some of us seem to master it more easily, but I think it's something that we all deal with. This book deals with the particular issues that people with chronic illness face.

Anyway, I'm not quite sure why it took me so long to finish this one. My dear friend Eva recommended it to me, and I immediately put a hold on it at the library...and then it took me all my renewals to actually finish it. It wasn't that I didn't enjoy it, because for the most part I did. But I'm guessing that with any sort of book like this, some parts will be more relevant to oneself than others. Honestly, there were some bits that annoyed my cranky, skeptical side. Not annoyed enough to want to throw the book across the room or anything (thank goodness, as it is a library copy), as I do understand that she wanted to include a broad range of people's experiences, but annoyed enough to set down the book for days at a time before diving back in again.

Thing is, the parts that were relevant, well, they made up for the rest. I don't think anyone would deny how much it can mean to simply feel understood. There is great comfort, and sometimes, great empowerment, in that feeling. And even if this book had nothing else to offer, for that alone I'd recommend it anyone trying to learn to live with chronic illness.

And for me, there were other benefits. I had a breakthrough of sorts. As one woman put it, "...I believed it intellectually, but on an emotional level, I did not accept what the diagnosis meant for me. I went on trying to live like a normal person." While I don't like the use of the word "normal," the point of this section of the book is that so many people with chronic illness try to pretend to the outside world that they are still the healthy person they were before. Hell, not just to the outside world but to themselves as well. Unfortunately, while the act can be maintained to a greater or lesser degree for a period of time, clinging to that act is only making things worse. I'd sort of been coming around to realizing this on my own in the last few months, but it was really helpful to read this right now. Ever since I was diagnosed, I've been able to tell people I have fibromyalgia and I've been able to admit to the pain and the fatigue and the cognitive issues...yes, intellectually I got it. But I have consistently refused to admit that I need to adjust my life. Or even when I could admit that I needed to, I couldn't actually *do* it. I'm hoping this book will help me don a brave, but not false, face and make some changes.

Maybe my favorite aspect of this book was its ultimate positive outlook, while not ignoring or minimizing the sucktacular aspects of chronic illness. And my favorite line, a quote by Edith Wharton from the beginning of the final chapter:

In spite of can remain alive long past the usual date of disintegration if one is unafraid of change, insatiable in intellectual curiosity, interested in big things, and happy in small ways. 

I think that is the way I'd like to live, chronic illness or no.


Jean said...

"Unafraid of change, insatiable in intellectual curiosity, interested in big things, and happy in small ways." Sounds a lot like someone I know. Someone named Debi. Cue fireworks.

DesLily said...

I think we all seem to live with something cronic! be it back pain or other illnesses... but not sure I want any reminders and read about them lol...

ps. mailed the books for Max and you! be there by friday they said.

Kailana said...

I like that quote. I hope you do live like that. :)

Eva said...

I'm sorry parts annoyed you! I honestly read it years ago (pre blogging I think, so 2005 or 2006) so I wonder what I'd make of it now.

But I'm glad the relevent parts connected with you! The bit you mentioned is exactly the bit that affected me so much.

I love that Edith Wharton quote too & like Jean I think it sounds a lot like you!!!

Snowball said...

Wow! I have learned so much from the book blogs I visit over the past few years, treated to delights I would not have otherwise discovered. But this is the first time I found something I really needed.

After more than fifteen years of a relatively stable condition, I am dealing with something new and as yet unnamed. It's frustrating, demoralizing, and many times nearly overwhelming - not to mention frightening.

Thank you so much, and I hope you find all the help and inspiration that you need.

Susan said...

Hi Debi, I just saw this post. I'm happy the book helped you, and even more that it is helping you understand yourself with your chronic illness. I have mine that I am wrestling with, and this year is full of setbacks. And it's me, I want to live normally, I resent that I have to count every thing I eat again for the rest of my life. Fingers crossed we are all able to come to live like that lovely quote has. Thank you!