Living with an indolent systemic mastocytosis (SM) diagnosis for the past 25 years has been hard. The older I get, the harder it is to get through the days. I search daily for reasons to keep fighting hard against this disease, reasons to motivate myself to get moving. One of my recent reasons has a small backstory, and is helping me continue to find joy in life every single day.
In 1992, I packed up a U-Haul and headed for Colorado Springs, Colorado. I was 23 years old and had my whole future ahead of me. I enrolled in an aviation college there and was living my best life. I had a bright future ahead. At least that is what I thought.
I didn’t know it at the time, but it seems the cards were stacked against me. First my mother passed away. After that, my dad had a heart attack and open-heart surgery. I had to leave Colorado and head home to Louisiana to take care of my daddy. I completed my private pilot’s certification and met all the requirements for my commercial certification and instrument rating check rides.
Once I was home in Louisiana, I found a local fixed base operator (FBO for short — a company that provides aviation services). I went to work there on the ramp. The FBO had a military contract, and it was here that I learned to refuel military aircraft, commercial aircraft and private/business jets. In my spare time I went up with flight instructors and trained for my check rides for a commercial license and for an instrument rating, a certification that would prove my ability to fly in challenging weather. It wasn’t long before I passed both tests, and was ready to pursue my lifelong dream of flying again.
I loved flying. I loved being in the air. I was at home in the sky.
But during my flight training, I noticed certain instances where I was feeling bad. Somedays were so bad that I had to call in to work. It was mostly stomach and leg pain. Then it was itching due to a rash that came on my skin and never went away, and brain fog. I got a diagnosis of ISM in 2000.
I took my last flight in 2004. I was never denied a medical certification (a requirement for pilots that confirms they’re in good health). I just knew that I didn’t need to be flying with all I had going on. So, I gave up on my dream because of this disease.
There is a quote that is often attributed to Leonardo da Vinci that I feel sums up my feelings about being a grounded pilot: “When once you have tasted flight, you will walk the earth with your eyes turned skyward, for there you have been, and there you will always long to return.”
Though I gave up flying, no one can ever take away what I did in obtaining my certifications. I still carry my license in my wallet, and my name is still on the list of pilots on the FAA website. My eyes are still turned skyward.
Finding new joy in the sky
Fast forward to 2015, when my first grandchild arrived. At 3 years old she would watch the space launches and was fascinated with planes. As she grew older, all I heard was “I want to be a pilot.” I told her when she was old enough, she could start lessons if she wanted.
There was no letting up. She begged and begged until I said OKAY. The other day — at 9 years old — she had her first flight lesson.
I am in the middle of one of the worst ISM flareups that has lasted for three weeks. I need a mast cell stabilizer, but the medicine is in a national shortage and you can’t get it. I have been suffering this whole time. But I took her for her lesson, and she flew her Mimi around.
I was in the back of the plane with my 9-year-old granddaughter at the controls and her flight instructor. She had to sit on two cushions and a pillow. Just like I did when I was flying. I was filled with joy. I was over the moon with excitement. I watched her smile so big the whole time we were in the air. Even though I was miserable with my symptoms, I found an abundance of joy.
Her turns were coordinated. She had total control of that airplane. The turbulence didn’t even phase her. She listened to every word her flight instructor told her. It was at this point that I realized there is always good, even on a difficult day. You just need to look for it.
I don’t want to miss any of my grandbabies chasing their dreams. I want to live this wonderful life watching them grow and I’ll fight this disease as long as it takes.
She will take flight lessons three or four times a year to keep her motivated as long as she wants to until she turns 16. Then she can apply for a student pilot license and solo. At 17 years old she can obtain her private pilot license. I hope and pray I am around to see that happen. But in the meantime, I’ll be in the back of the plane living my best life watching her do her thing. FLY!!
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