Hello, my name is Colleen Brunetti and I live in the US. I’m so pleased to talk to you today about how you can tap into creativity as a way to cope with living with pulmonary hypertension.
I was diagnosed in 2008 as the age of 28. Prior to diagnosis, I had been very active. I was a dancer with 13 years of lessons and plenty of time on dance floors. In my 20s, I was going to the gym taking long walks. I was a teacher with degrees in special education and children’s literacy, and I loved my job. But after the birth of my son, I couldn’t do any of that. What I blamed on postpartum challenges would in fact turn out to be pulmonary arterial hypertension. For a long time, I mourned what I thought I had lost. And this isn’t a bad thing. If I’ve learned anything over the past 17 years with the condition it’s that the emotional toll is real.
You have to feel it and go through the processing of it, but most importantly, you can’t let yourself stay in the dark places. You have to find new ways to look for the light. So for me, this started with writing. One of the ways I began to cope with pulmonary arterial hypertension was to start a blog. I called my blog “Defining the New Normal”. I chose this name because in the early days of diagnosis, a patient is often told by other patients, “Welcome to your new normal.” I hated the phrase. To be clear, this is always followed with messages of support, information, and affirmation. It’s a kindness, but it still never sat quite right with me. There was nothing about this journey I was in the mood to welcome, and I didn’t like the normal that was being presented to me as my future. So I decided to define it for myself.
I used my blog to raise awareness about the disease, what I was going through, and to process the hard parts and the sad parts, and even the sometimes ridiculous situations I would find myself in while getting medical care. After all, there isn’t anything about a right heart catheterisation that isn’t a little compromising and strips you of your dignity. It was the series of invasive medical tests I had that I learned that dark humor is also a coping mechanism for me. Much to my surprise, the blog was very well received. For a tiny blog in a tiny rare disease community, it had a pretty wide readership and people kept telling me I should write a book. I didn’t want to write a book, but as time went on, I realized using my voice and writing was giving me power, power to process what I was going through, power to educate, even power to change things for the better.
So I came across a self-publishing class and I decided to take it. And in the end, the book, “Defining the New Normal, A Guide to Becoming More Than Your Diagnosis” was Born. It turned out I really liked writing and publishing, but my life is often pretty serious and stressful with pulmonary arterial hypertension. I didn’t want to focus only on heavy stuff. I had gotten to the point in my journey where I wanted the condition in the background as much as possible, not the all-consuming thing. So I pivoted. Remember I said I was a teacher. I loved children’s literature. The stories and art brought me so much joy even as an adult. So I decided to turn my attention to trying a kid’s book. This one I wrote to help my son cope with his own challenges, food allergies and intolerances. And that was so much fun. I did another book and I was hooked (see photos below of Colleen’s books).
I had found my creative outlet, one that pulmonary arterial hypertension couldn’t take because I could work when I felt like it and rest when I needed to.
And then COVID hit. We all went through our own stresses with isolating and navigating the pandemic. As a critically ill, rare disease patient, the mental toll of the worry and stress was especially high. Plus I was homeschooling an eighth grader and a four-year-old. I was a bit of a mess. One of the things I had always wanted to do was illustrate my own book. I was very artsy in high school, but never took it anywhere. So I began to teach myself digital illustration. My goal was to illustrate a poem I had written for my kids about all they could be in this world. It was called “Share a Little Kindness”, and it seemed like it was a message the world could benefit from write about that.
I told myself if I could do just 10 minutes a day on my new book, it was something. Those 10 minutes added up more and more, and in the end, I did have a self-illustrated book, and it has been my bestseller.
I’ve gone on to illustrate another, and I’m working on my third self-illustrated project now. I’m recording this video from what has become my office as an author and my art studio right in my home.
When I think back to that scared, sad, confused, young adult facing down so much uncertainty at diagnosis, I just want to give her a hug. I want to tell her that life can still be beautiful even with pulmonary arterial hypertension. Another really powerful lesson I have learned is to live fully while you can and accept with grace the things you can’t change. There’s no doubt that pulmonary arterial hypertension is really hard, but there’s also no doubt that you can live a full and vibrant life on your own terms, even when it’s hard and even when you have to change course, maybe many times.
You may not feel like you have an artistic bone in your body, and that’s okay. There are variations of creative expression of all kinds. You can move your body to yoga. You can take in a live or a recorded performance. Get a coloring book and some markers, put on some music and check out for a bit in the meditative process. Sing. It’s good for your lungs no matter how off-key you are. Throw paint on a canvas and see where it lands. The possibilities are endless.
I did not land here on purpose. This is a life I had never imagined. I just adjusted because I had to, yes. But also because I think that living fully is something we all can achieve if only we define what that looks like individually and take a chance on ourselves to try new things and forge new paths. Thank you.
