As a 29-year-old musician, teacher, writer, and founder of Breathe Bravely, Ashley Ballou-Bonnema strives to get the most out of a life lived with cystic fibrosis. Originally, Ashley found her voice in a personal blog called, “Breathe Bravely” – a blog reflecting Ashley’s beautiful journey with CF. But through the voice and support of many, Breathe Bravely grew into an impactful nonprofit organization – one dedicated to giving voice to CF. Ashley continues to write her personal blog, while serving as the executive director of the nonprofit. Recently, Ashley also released her first book entitled, “Breathing Bravely: Giving Voice to Cystic Fibrosis.” Ashley remains dedicated to improving the quality of life for those impacted by CF through awareness, education and the sharing of her own beautiful journey.
Ashley and I connected through Instagram and have discovered many synchronicities in our lives on opposite sides of the world. I adore Ashley and her work so much so it is a great honour to be able to share some of her CF experience with you. Breathe Bravely has some exciting things coming up in the next few months so be sure to connect with her over on Instagram, Facebook or her website.
Ashley, tell us a bit about what having CF has meant for you?
Having CF has meant living a life upon a road less travelled. It’s filled with bumps and unexpected wrong turns, but it’s also filled with the most beautiful vistas that would cease to exist if my life and CF would have never intersected. This life I’ve been gifted is filled with the most incredible relationships, opportunities, and experiences that would have never existed if not for CF. Are the rough roads of CF that are incredibly difficult at times? Of course, but as in all our lives, we can choose to see the beauty that has come from adversity. CF has meant learning to truly live and appreciate all that is meaningful in my life.
What does your daily CF superhero routine look like and how do you make sure you stick to it?
I have found it’s about making it a part of my “normal life.” It has become such a necessitated habit that I don’t even question when I need to do a vest, meds, etc. Do I always WANT to do it? Of course not, but I know a life with CF is not about wishing it away, it’s about assertively taking care of myself and being proactive.
I feel mornings are my worst enemy. It always takes me a bit to get my lungs and joints going in the morning after a night of sleep. I wake up, take my medications, eat breakfast, then do a morning VEST treatment along with 4 different nebulized medications. I do a total of 3 VEST treatments a day along with nebs. I carefully schedule my day to ensure that I make time for my afternoon treatment. Sometimes it gets pretty cramped, but I know it’s something I cannot sacrifice. Since I am a bit of a night owl, my last treatment is later in the evening. I always procrastinate going to bed as my lungs are finally warmed up and working at full force for the day.
Beyond your treatments and medications what other things do you believe are important to staying well and being a CF superhero?
I sing. I sing A LOT. Singing has been a great form of airway clearance for me. It has also strengthened my respiratory muscles, posture, and core. It has also made me very self aware of my respiratory system and the use of my breath. I feel I best know my body through singing and can easily tell when an exacerbation is just beginning by the way my respiratory system feels. I also feel I am very connected to my breathing and know that I am maximizing every ounce available in these CF ridden lungs.
If you were stranded on a desert island which five treatments would you want to have with you?
Ibuprofen, Inhaled Acetylcystien (so, I guess I need my neb machine!), Prednisone (not by want but by necessity), Enzymes, and Cayston.
As a CF superhero how do you stay motivated and positive?
It’s a way of life I choose. There is goodness and beauty in every detail of our lives, even in adversity, we just need to see it. My life is a culmination of the kindness and love people have shared with me and I just want to reflect that back to the world.
What is the hardest thing about being a CF superhero and what strategies do you have for dealing with it?
The most difficult thing I find is the guilt and uncertainty that comes along with a chronic disease. I feel guilty for the pain my life with CF can cause those I love. I feel guilty for others with CF who are suffering more than me. How do I deal with it? By reminding myself this is the life I’ve been given and I can choose to wallow in and be consumed by fear of CF’s uncertainty and guilt or be empowered by it – to share goodness and give voice to CF.
What is your favourite CF superhero quote?
Find the beauty in every breath that you are gifted.