Have you ever been stuck? Better yet, have you ever loved someone who was stuck? (It's much easier to see when other people do it!)
You know what that means, don't you? When life isn't going just right and you start spinning your wheels. When you just can't seem to find a detour around the obstacle. When life's fast-balls hit you in the face and you just can't seem to get back up again. When the supportive people around you start to take a few steps back, become inpatient and start saying things like, "Isn't it time to move on?"
When being stuck relates to the world of illness, you might find a label attached to your lack of mobility: "victim."
In 2007, my first book, "Sick Girl Speaks!" was released. Since then, I have had the pleasure of spending my time giving talks and workshops to patients and families about navigating the medical system. As a person with cystic fibrosis and having received two double lung transplants in my first 30 years of life, I had a lot to say about life in the medical maze. "Sick Girl Speaks!" is a series of complaints and love letters about the ups and downs of life "on the inside"--a battle memoir filled with tips on being an effective patient advocate. It was a book born out of years of difficulty and the joy of survival.
I'll admit, I wasn't terribly interested in the professional perspective when I wrote "Sick Girl Speaks!" What happens on the other side of the curtain has always seemed mysterious and beyond my grasp. Since then, however, I have been able to get a glimpse into the medical professional's perspective and I find it both humbling and fascinating. It's almost as if we are two different species--professionals and patients--and we find each other equally elusive and difficult to understand. I could never have predicted the enthusiasm and hunger I have found when I speak to students and health care providers about life in The Sick World. They really want to know what makes us tick (patients, that is) and I have discovered great value in learning more about the landscape of the world in which they reside.
What does that have to do with this book? Well, it is through my conversations with doctors, nurses, chaplains and social workers that I have come to discover a question worthy of us all pondering. I am often asked by those in healthcare how it is that I was able to avoid becoming a "victim." They see it over and over in their practice--the patient who faces illness with grace and purpose contrasted with the patient who never seems to find peace and lives life with resentment and anger. How does this happen? Why does this happen? How can one patient find joy despite suffering and another never recover from the trauma of a scary diagnosis?
I would be deceptive if I didn't mention that these questions often come wrapped in a fair amount of judgment and disapproval. After all, if Bobby can be positive, the fact that Jonny is negative means he has made a choice to remain a victim of circumstance, right? And dealing with Jonny and his "bad attitude" is much more difficult for everyone involved. Naturally, this could lead to resentment on the part of Jonny's loved ones and caregivers.
So, it appears this is a question that would be worth spending time thinking about. For Jonny himself, Jonny's family and for Jonny's healthcare providers. We all need to know, why is Jonny stuck and how can we help him get un-stuck?
I propose that we all have internal monologues that play in the theater of our mind. A movie reel containing a story that we might not even know is back there. It isn't until we understand what story it is that we keep telling ourselves that we can then begin to change the film and tell another tale.
What is Jonny's story? This is what I want to know. What is my story? Your story? Was does it mean to be a victim and how does that differ from "normal grief"? The illness story always begins with grieving so why do some most past the pain and others stay locked inside it? How do the stories of the people around us influence our internal monologue? What can medical professionals do to help us tweak our story, if anything? Does having a "bad attitude" have any impact on our physical outcomes? Can language help shape our story to one of empowerment?
These and many more questions flood my mind as I prepare to embark on this journey. And, unlike the creation of "Sick Girl Speaks!", I will not be on this journey alone. I will be using stories outside of my own to help me decipher these intricate questions.
This is not a book intended to place blame or create labels. On the contrary, this is a book intended to remove the fog from the mystery of living with illness. We can not be compassionate until we understand. It is not until we understand that we can make a different choice. Often, we can not make a different choice without believing there is another one to make.
There is a universal goal among patients, loved ones and professionals. We all want to live the best life we can, don't we? Likewise, we want to walk through this life with people who are also living the best life they can, right? In exploring these questions, perhaps we can get one step closer to living well with illness. Let there be healing through exploring illness and the stories we tell ourselves!