Friday, March 24, 2006

Hope, Part 2

The first time I read The Anatomy of Hope by Dr. Jerome Groopman, I was pretty much at rock-bottom. It was at the end of my second year with CFS, and I was in a terrible relapse. I was feeling that my health and my life were entirely out of my control. This book had an immediate positive impact on me (to see my full review, check out my book blog).

Although Dr. Groopman is an oncologist and the patient stories in his book deal mainly with cancer, his conclusions about the nature and power of hope are relevant to anyone living with chronic illness. In addition, Dr. Groopman recounts his own 20-year struggle with debilitating back pain. He describes living with pain and restrictions in a way that is familiar to anyone with CFS:
"The boundary of my life was like an electrified fence at the perimeter of a prison; if I ventured too far and tested it, I was thrown back from the shock of its force into my confinement. If I stayed inside the fence, I was somewhat safe. So, I assessed each movement and task of the waking day for its distance from that perilous perimeter."

Dr. Groopman carefully defines hope as just one aspect necessary for healing, not a miracle cure. He echoes my own feelings when he points out that many of the popular books on the power of positive thinking blame the patient if positive thinking alone doesn't cure them. If you're still sick, you must be doing it wrong.

Instead, Dr. Groopman defines true hope in words so comforting and encouraging that I have hung them over my desk:

"Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion. Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them.

There are real options and I have genuine choices.

What I do can make a difference.

My actions can bring a future different from the present.

I have some control over my circumstances.

I am not entirely at the mercy of forces outside myself."

I found these words so empowering at a time when I felt I had no power over my body. It helped me immensely to realize that, no matter how debilitated I felt, there were always some things I could do to help myself: read an uplifting book, watch a funny movie, get outdoors for some fresh air, take better care of myself, and rest when I needed to.

I've always felt strongly that life is all about choices, that you need to take responsibility for your own life and not be a victim. Now I realized that I had fallen into a victim mentality since becoming ill. It's pretty easy to do, when such a debilitating illness suddenly seems to take over your life.

Groopman's book made me recognize that I still had choices, within the confines of my illness. I could decide when to rest more or when an activity was worth risking a crash. Even at my worst, I could decide to stay in a positive frame of mind rather than wallow in self-pity. Besides feeling better spiritually, replacing negative emotions with positive has some real physical benefits. We know that people with CFS don't respond to stress well, that our brains don't produce the right amounts of stress hormones at the right times. It's reasonable, then, to accept that reducing stress and negative emotions will at least help to prevent a worsening of our symptoms.

So, after succumbing briefly to despair one evening this week, I reread The Anatomy of Hope and tried to make the best of my bad week. I read a lot, wrote on the laptop when I was able, watched a great movie (Elizabethtown), and listened to some favorite music. I also made myself go outside each day, even if I could only make it as far as the front yard, to feel the sunshine and fresh air and watch my boys play. It may not seem like much, but just knowing that I have some control over my life helps a lot.


Ciara said...

Hi Sue,

I have just discovered your blog.
It is excellent and moving.

I have had CFS (or ME as we call it in the UK) for 20 years. You express how I feel so well.

I'll be a regular reader from now on.


Michelle said...

That visual of an electrified fence is a good one. Though I find that the fence is constantly moving. Indeed sometimes it feels like the fence zaps me without me even touching it!

But yes, there are times when you just have to take back control, even if that fence zaps ya. :)

Sue Jackson said...

Michelle -
Yes, you're right. CFIDS has that added challenge that we often don't even know where our limits are on any given day. It can be very frustrating. In some ways, you have to give up a little control to the illness and "go with the flow" in order to gain more control over your life. Thanks for visiting!