Steph is sharing her story of hope and resilience as part of our “Thriving with LAM” series for Worldwide LAM Awareness Month 2020. Lymphangioleiomyomatosis (LAM) is a rare lung disease without a cure.
Steph was diagnosed in 2012. We’re grateful to her for telling her story and offering her advice for living and thriving with LAM.
My name is Steph Dreyer and I am a Lammie. Lammies are not bound together only by the 11-syllable disease we share, but by strength of character, commitment to supporting one another, courage through harrowing medical challenges, and relentless positivity. It’s as if these characteristics come with the Lymphangioleiomyomatosis (LAM) mutation itself.
My LAM story starts in July of 2012. Pregnant with my baby girl, and making dinner for my toddler Henry, I suddenly had pain down my left side and couldn’t breathe. Having worked as a marketer for the Bayer Aspirin brand, I was certain I was having a heart attack, and (like a moron) drove myself to the hospital. I’d later find out that my heart was fine, but my lung had collapsed. Worse, the doctors lobbed a very strange diagnosis my way, along with a 7-year prognosis. My baby girl would be 7, and I’d be gone.
I did not accept this deal. I searched for information about this new lung disease that was attempting to take hold of my life and redefine my future. With help from The LAM Foundation, I connected to doctors, clinics, and patients to learn more. I was met with some bad news and some good, and I hungrily accepted the good. I decided that I’d be like the Lammies I met; powerful, positive, and completely undefined by disease. It was that easy. I made a decision to live in the good.
Years later, I’ve had four major lung collapses, so many surgeries I’ve lost count, and jagged scars that document my journey (and my strength). I now see them as badges of honor. I am stronger than my pain, and I am stronger because of LAM.
Each time LAM rears its head, I learn a valuable new lesson. I’ve learned to appreciate the little things, and yet not sweat the small stuff. I’ve learned that we are braver than we think we are, that people are mostly good, and that empathy and love go a long way. I now know that thinking about the good can make our bodies feel good, and that meditation, yoga, singing, and other activities I once thought too woo-woo actually have a direct impact on my health.
Now each time LAM throws me a challenge, even those as consistent as the daily lung pain or shortness of breath, I see it as a reminder of all the lessons I’ve learned: be brave, be positive, be grateful, and just breathe. That little flip… from seeing something as a challenge to seeing it as a gift… has made all the difference.
This realization has been able to get me through the rough stuff, and it has emboldened me to pursue my purpose: to enable others to turn negative things into good ones. I call it the Flip. When we dare to see the good, and live in the positive, we can overcome mighty challenges, and even find a way to be grateful for them. We can enjoy more, live more, learn more, and even help others more.
In fact, LAM and the Flip have opened doors for me to be a keynote speaker at the National Institute of Health, get published in The Lancet, serve on The LAM Foundation Board of Directors, speak on podcasts, and the biggest honor, to call myself a coach to hundreds, offering me a chance to improve people’s lives.
My advice to anyone receiving a LAM diagnosis, or experiencing any hardship is first, to get support. Knowing you’re not alone can make you brave, and speaking your fears out loud takes away their power. Use your support network, or build one… just reach out to someone.
I would be nowhere without the love of my family and friends, support of The LAM Foundation, and incredible sisterhood of the Lammies. Second, try the Flip. Ask yourself what’s good about the situation, and what’s possible. Hard as it may be at first, you will find something. Lean into that thing, and you will be amazed what you discover.
Steph Dreyer is a Lammie, mom to Henry & Daisy, a marketer, and a coach on a mission to share the incredible power of positivity with as many people as possible. She enjoys spending time with family, date night with her husband Ken, playing with her adorable pups, reading on the porch, and enabling others to persevere through challenges with friendship, perspective, coaching, and terrible jokes.