When I was five years old, my parent’s received a devastating blow. They learned that me, their only child, had Cystic Fibrosis, a genetic lung disease that would gradually progress making it difficult for me to breathe and take part in activities like other children. It would also shorten my lifespan.
In the ‘70s there was very little hope and not much in the way of advanced medical treatment for cystic fibrosis. Some doctors actually told my parents, “you should institutionalize her, she won’t live past twelve.” My parents were medical professionals, mom was a nurse and dad a dentist, and were not about to listen to any of the doom and gloom predictions. In fact, growing up, my parents insured my illness would not define me. They made sure I was extremely compliant with my medical treatments, but never sheltered me from a normal childhood. A typical day meant that I got up; I took my medicine (which at the time included twenty pills before I ate each meal and two breathing treatments); then I put on my ‘play clothes’ and rode bikes or went sled riding until it was dark.
By the time I was ten, I was in gymnastics and jazz, tap, and ballet. Medical treatments were a reflexive part of my daily routine, and I continued to live life as a normal kid. By the time I turned twelve, my doctors changed my “expiration date” to 21.
Twenty-one was a milestone year. It was the first time I had to have aggressive medical treatment in the form of intravenous antibiotics for a respiratory infection. I recovered, but the drugs damaged a nerve in my inner ear. To this day, I still have challenges with balances, which is comical and humbling as a yoga teacher, but that’s what laughter is for. Although it was a trying time, I blew right past my second “expiration date.”
Today, the average lifespan for someone with my chronic illness is thirty-seven. I came to Atlanta in 1996 after the Olympics to pursue a job opportunity; all the while remaining a supremely compliant CF patient. I found enjoyment in tennis and joined ALTA, but, no matter how “normal” a life I continued to lead, it was (and still is) a surreal experience to have an average lifespan number looming.
I discovered yoga at Peachtree Yoga Center in 2000 as a way to improve my tennis game and manage anxiety. I quickly discovered, serendipitously, that the rhythmic flow of vinyasa and pranayama helped increase my breath capacity, something with which I always struggled. That first step into the studio changed my life forever.
After 34 years of quarterly doctor’s visits without fail, I’ve had a very real sense of my physical body’s mortality. As medical treatments advanced and I continued to remain stable, I came to realize that I am here for a reason, and that my purpose was to become a yoga teacher and share the gift of yoga with others. I recently passed my 200-hour yoga teacher certification, and am teaching yoga around Smyrna,GA. Me – a kid with a chronic lung disease who wasn’t supposed to be here – teaching others how to achieve inner stillness and balance with breath. What I got most out of training is that a complete yoga practice is now as much a part of my daily routine as my treatments. I get up at the crack of 4:30 am every day, so I have time to take my 45 minute breathing treatment, do my morning asana, and meditation before heading to work. I’m an interactive marketing manager during the day, and a yoga teacher / blogger by night and weekend. I am inspired by the clockwork tweets of birds in the morning, I am grateful for every moment and I’m blessed with breath.
People often say, “I just want to live a normal life,” but normal is relative. What may seem completely unmanageable for one, is completely routine for another. I know my purpose, I know my normal. Do you know yours?
Lisa Agostoni is a Yoga Alliance Certified Instructor (200-RYT) in Smyrna, GA, and writes a regular blog under the name A Charmed Yogi. Lisa lives in Smyrna with her two rescued dogs Hattie and Ivy.
Hi Lisa- I found your info on the BEF website with a link to your article. My 7 month old son Brady has CF. It’s been a very emotional 7 months since he was diagnosed but reading stories about people like you is so inspirational and gives me so much hope for my son’s future. Thank you for sharing your story.
A friend of mine sent me this and as a fellow CF Woman I am greatly inspired to continue my own journey…thank you! I recently signed up for a 305 hr Yoga Teacher Training and began to think it was a mistake… especially since I am now pregnant. Yes that’s right pregnant with 52% lung capacity and doing great! Life is truly miraculous. Thank you for the motivation; it is reassuring to know this too is possible. Best wishes for more milestones.
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As another gal with CF, I love the fact that you don’t let it hold you down. I had never thought of trying yoga as a compliment to my breathing but will be checking that out right away.
You just keep right on breaking theose ‘expiration dates’! With the recently approved meds that target the genetic cause of the disease, it will hopefully become a thing of the past in the near future!
Keep inspiring others to reach for the sun & the stars!
I have always been, and continue to be amazed and thrilled to have Lisa in my life. I can’t imagine a world without her in it. As a medical professional, I have a deeper understanding of her challenges than most; and yet, some days she still blows me away with her knowledge, insight and inner sense and awareness of her own body and disease.
Cheers to The Charmed Yogi, for we, her friends, and truly the charmed ones.
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