What do you do when life hands you a diagnosis that turns your world upside down?
You re-define everything.
As I went through my schooling and began my business I was often asked, "Oh, do you help people like you?" Meaning, people who were sick.
I always said something of the following, "Well... no. You see, I live that life everyday, managing my medications and doctors and watching for and working around symptoms. It's exhausting. I spend hours a week volunteering for PHA and interacting with my community. I love that part. But I need a space away from that too. I need a job that's just for me. Away from 'sick' all the time."
People would sort of nod. Some would look at me sideways. But the conversation would end.
And there was always this nagging feeling in my head too. I mean, I was doing really really really well. And I had a pretty good idea why. I would share snippits of my healthy living philosophy with other patients as it seemed appropriate, but I pretty much just did my thing. The universe might have been requiring more from me, but I wasn't ready to hear it.
I don't know when exactly the idea of writing a book about my journey and all I had learned came to me. Perhaps it was the jokes, "You should write a book!" Perhaps it was the fact that people kept asking more and more questions about what I was doing and why. Perhaps it was just time.
So, this January I enrolled in a self-publishing class and began what would be the most interesting, excruciating, exhilarating, challenging, fun, maddening, and gratifying process. Yes, it was pretty much more than I could have imagined.
Irony is my shadow. The winter I was writing I spent 28
days intermittently bed-ridden from a variety of illnesses. I hadn't gotten that sick in years, but I sure did while writing about getting healthy!
I also kept up with tenacity at my lifestyle practices... when I could get my head off the pillow. And I had some of the best medical results of my life two weeks after the last health blow that had left me in bed for days. Go figure. (Fingers crossed, I've been up and about a solid five months and counting now...)
The day the big box of books arrived (yesterday), I spent the evening curled up on my side begging the world to stop tilting and spinning. I had a rare hit of side-effects from my medications which left me very dizzy for a few hours. It passed, of course. And this morning as I sit here writing I'm right back where I expect to be. Irony. Always following me.
Anyway, the book... it is called "Defining The New Normal: A Guide to Becoming More Than Your Diagnosis"
It is so easy to let our disease define us. We claim it in how we speak about ourselves, "I am a PHer." or "She is a cancer patient." But, no... we are so much more than our diagnosis. I have PH, it doesn't have me. It is not who I am. Those of us who carry a diagnosis just have to fight a bit harder to create an identity of someone who can be quite well, even though they are sick (yes, it's possible!).
This book takes the reader step-by-step through so many areas of self-care that are crucial to our overall well-being. Nutrition, exercise, sleep, those big ones are in there. But there are some you might not expect too. Like the healing power of connecting to others, and of reaching out. The absolute crucial necessity of being the (humble) leader of your medical team. So much.
Every key chapter ends with a "Defining Moment". A moment when the reader takes a pause and goes through a serious of journal-like questions to apply on the most personal of levels how they can put into actions the lesson at hand.
When you're done with the book, well I hope you're a little healthier and happier for it. I hope you go back to it and read it again and again as you need to. Goodness knows, life is rather a case of "lather, rinse, repeat". I am constantly falling and getting up and brushing off... but at least I have the tools to do so, and I hope by sharing mine with you, you can too.