It’s a curious milestone to celebrate. Of course, I am deeply grateful to be here. There is so much living left to do. The flip side of the statistic, however, is that half the people diagnosed the same time I was are no longer here. It’s a fact I am acutely aware of far too often… watching others with this disease suffer and pass on is something that has never ceased to cut through me.
Although incredibly hard some days, I can’t stay in that dark space – I think that knowledge is perhaps the most valuable lesson (and skill) I have learned these last eight years. It’s a balancing act between weathering the really hard parts and then getting back up and focusing on the good. In fact, this lesson has been so deeply ingrained in me, I wrote a book on it.
Although incredibly hard some days, I can’t stay in that dark space – I think that knowledge is perhaps the most valuable lesson (and skill) I have learned these last eight years. It’s a balancing act between weathering the really hard parts and then getting back up and focusing on the good. In fact, this lesson has been so deeply ingrained in me, I wrote a book on it.
“Defining the New Normal: A Guide to Becoming More Than Your Diagnosis” is the book I published in November 2014. By 2015 it was on the Amazon bestseller list, a feat that not only shocked (okay, and thrilled) me, but one which left me really humbled. I knew when I set out to write this book, that everyone knew somebody who would need it (it’s for all people rocked by a major diagnosis, not just PH). I just didn’t know how many people would resonate the way they have. It’s just… well, it’s just the best thing knowing that this really crappy PH thing can be turned around for good. I am nothing but grateful for how it has been received, and grateful to the Caring Voice Coalition and PHA for supporting my efforts. And I absolutely love traveling to speak to other patients about how they too can define a life they love, no matter the diagnosis.In addition, I’ve been given the opportunity to speak to the FDA, Women in Government and PH related industry several times. I really believe it is the patients who have to take our stories right to the change makers, and the policy makers. They need to hear how their every decision impacts our wellbeing and survival.
A book is fun, but the most significant thing in my world as of late has been the adoption of our daughter this past July. We started with fostering the tiniest sweetest little four-pound bundle in November of 2014 (oh yes, she was placed with us the same week my book launched – no pressure there!). Eight months later, in a little courtroom, a judge ruled her ours. Forever.
That moment was literally a dream come true. I had wanted to adopt ever since I was in college. For a long time it looked like PH was going to derail that dream. Questions about how sick I might get, and how bad the outcome might be, kept my husband and I from moving forward.
Finally though, it seemed I was going to be pretty stable for a good long time. I have a kick-ass team of doctors and each one of them was 100% behind the idea of adoption – which was incredibly reassuring.
She and my nine-year-old son keep me very busy. They get most of my energy these days. Adopting was the best decision, but caring for an active toddler and a boy on the move is no joke! I’m writing a lot, and coaching clients all over the country to better health on their terms. I don’t think this journey is ever going to be an easy one. But in choosing whether I PHight of take Flight… I choose to stand and PHight… or sit down on the couch and PHight from there if I have to – because let’s be honest, PH fatigue is no joke either. Either way, I’m defining this life on my terms and it’s a life I love.
*This entry is a follow up to Colleen's original #PHighterFriday, which can be viewed here.
