Monday, May 19, 2008

Introduction: Stuck or Un-Stuck?

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!

Thursday, May 15, 2008

Uh-Oh. Pregnant Again!

Hi All!

Well, it's pretty obvious to me that I am not good at this whole "blogging my life" thing. So much has happened but I just never seem to have the motivation to sit down for a blog recap. This is precisely why I didn't write a memoir! I just don't like to recount my doesn't appeal to me much. (I like reading memoirs, just not writing one.)

So a few little announcements before I tell you about my pregnancy! I was on NPR last weekend, "The People's Pharmacy," and it was lovely. I was very nervous and you can tell in the first few minutes but I eventually hit my stride and go. I have had a great response and am forever grateful to Joe and Terry Graedon for giving me the opportunity to be on national radio!! Now, I'm inspired to make up a cool media packet and shop it around--getting press really helps sell books! Who knew? :)

I will be posting an excerpt from my interview on my website so keep an eye (ear) out for that.

Also, in Sick Girl Speaks Inc. news, I am proud to say I am now officially a member of the Duke Healthcare Patient Advocacy Council! How great that Duke even has a council like that and how great it is that I get to sit on it!!! I feel so fortunate. Life is good.

Ok, speaking of life being good--let's get back to me being pregnant. Well, as you all know, I gave birth in October 2007 to a bouncing baby book by the name of "Sick Girl Speaks!" Like so many Moms, I have been fretting about making sure my child gets the attention it deserves and the love it needs to grow. I am still tired from giving birth and raising my little baby who is growing into a fine little toddler. Being a Mom is exhausting!

But, like so many Moms, I just discovered this morning that I'm pregnant again--and so soon after the birth of my last child! Oops! Oh well, hopefully there's enough of me to go around!! :)

I have a new book in my mind, my guts and my soul. It has been slowly emerging through all that I have been doing and learning these last few months but it just became fertilized after a conversation I had yesterday. (So, I suppose if I don't want to get pregnant again after this, I should abstain from conversations as that seems to be one of the major ways I get pregnant with book children!)

So "Sick Girl Speaks" is about the medical system primarily and navigating the medical and emotional mazes. This new baby is about the individual and family systems. It's already got a name: "Victimized: Illness and the Stories We Tell Ourselves."

This theme of Empowerment vs. Victimization or Healing vs Curing--these are big themes that keep popping up over and over. The stories we tell ourselves and the stories that we are told from others have a major impact on how we will cope with diagnosis, chronic illness, serious illness, death and grief. I will tell my story but I will also be telling a lot of other people's stories.

I see the format being very similar to that of "Sick Girl Speaks!" You know what that means, don't you? Yep. I'm back bloggers!!! I'm blogging a book again!!!! Yea! I am so excited!

I can't wait to get started. I'll also be looking for stories from you guys. Up for it?
My self-determined deadline is October 15, 2008. I'll give birth right around the same time as last year!!

Victimized: Illness and the Stories We Tell Ourselves....
Like it????

Tuesday, May 6, 2008

But, Don't You Know Who I Am?

Wow. What a crazy month! April flew by with barely time for a blogging "hello"! I have been to NYC, Wisconsin and all over North Carolina this month. I have been so happy to have great opportunities to speak at really exciting venues, begin my "Finding Your Voice" series for patients and families and I'm thrilled to say I was able to get certified in the "Respecting Choices" Advance Care Planning Facilitation and Instructor technique. I keep booking "gigs" and the book continues to gain momentum. Now, the key is finding balance! Isn't it always, though?

In between all of these things, I have attended quite a few CF fundraisers and similar events. One of those was this past Saturday night. Parents of a CF girl (Dad was quite the rock star in the 80's and 90's) threw an amazing concert a local hot spot with all of the money going to the Cystic Fibrosis Foundation. It was awesome--my kind of fundraiser!! Congratulations Amy and John for putting together such an amazing two nights of fun and raising tons of money for CF research!!

My story is more about the opening band, however. I had never heard them before but my friend who came with me had. They were almost done playing when she casually mentioned the lead singer's name.
"Did you say Chris Stevens?" I asked with my mouth agape.
"Yea" she said excited at the connection, "You knew his band the Delboys?"
"No!" I proclaimed beaming, "I know his dog Coco from the vet hospital where I used to work! Coco was my favorite!!"

So what, you ask? It was just one of those moments when I really understood the limits of our perceptions. I saw this man dozens of times and knew him as a middle-aged guy with a wife, kids and the cutest Powder Puff Chinese Crested I had ever seen. There was nothing there to ever give me the hint that he was a musician and a rock star of sorts.
I wondered if it was frustrating for him to go about his day and know that people had no idea about his hidden "coolness." Who knew he was hip?
I could almost feel my brain twist when I was trying to align my previous perceptions with the man I was watching rock it out on stage. We make so many assumptions--how often they are wrong!

I suffer from Misunderstood-itis. I really don't like it when people make quick assumptions about me based on how I look, my educational background or where I live. 99% of the time, I feel like their perceptions are wrong and yet, how often do I stop to check my own? Rarely.

From now on, instead of assuming that what stands before me represents a person in entirety, I will assume the opposite. After all, the guy with the with the dreadlocks could be an accountant. The guy with the mini-van could be a rock star. The girl with the 2.5 kids could be a CEO of a Fortune 500. The girl with the fancy business suit driving a Lexus might live at home with Mom and have a drinking problem!! The person who stands before me is only a sliver of who they are.

I, for one, would love it if people would assume that I am much more than they can see. I will now try to extend the same courtesy to those I meet.
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