So instead, tonight, I leave you with this post. I did an interview with the fabulous Catie Talarsky from WNPR Connecticut, and the show "Where We Live," which is ironic because, you know, I don't live there- but I think they mean the grander sense of WE. You know, NPR-style. We talked through so many topics in 2 hours! Some of those topics are covered in this article I wrote for the CF Newswire. Take a peak, and look forward to another post tomorrow. Through the sadness of my two prior posts and all the news, it was actually a quite lovely weekend of seeing old friends from my old OLD job, (like 2005-2008 style), talking shop with theatre folks, having sparkling this and that on my front porch, and sleeping a lot.
Cystic Gal: The gal, the myth, the legend
(ok, that was not really the title, but I'm all anonymous up in here lately!)
I am proud to be part of a generation of CF patients that is always right in pace with science – When I was born in 1980, the life expectancy for a child with CF was about 10 years old. Now that I’m almost 30, it’s about 37. This strange race against time and facts has given CF patients who are my age a willfulness, determination, and almost arrogance in their ability to beat this disease. For better or worse, I was handed this cocky attitude by my parents, who never let CF scare them into raising their children differently. I was always expected to grow up strong, go to the best college I could get into, and start a career. I am grateful to have surpassed even these childhood dreams by earning my Master’s Degree, moving to
Getting to age 30 has not been without struggles. I had much worse health in adolescence. I missed a great deal of high school, but still maintained good grades by continuing my work diligently from home, and attending classes enough to remain involved with my high school’s drama program. I learned that I had to keep my health up to par in order to do what I loved. Though I was not a competitive athlete in high school, I swam for my main form of exercise. At school, I performed in plays while maintaining a crazy, active lifestyle like any so-called normal teenager. In the summers, I swam and worked as a lifeguard and swim instructor through college.
Here’s the catch- I’m no star athlete. I’m no marathon runner. I don’t even like to exercise in front of other people. However, I work out every day. I think it’s important for CFers to know that exercise is a necessary part of taking care of yourself, but it’s not an all or nothing proposition. You don’t have to prove to the world that you’re overcoming your disease through extreme exercise goals. You just have to take care of yourself and live the active lifestyle that you choose.
Some people told me that I was crazy to pursue a career in the theatre – the crazy schedules, the late nights, the unpredictable income. However, theatre is my passion. I found that pursuing my true passion, with all of its active demands, was actually the best thing for me, personally and even physically. Now, I am able to do much of my work as a playwright, director or producer from the first row of a theatre if I need to - so I can be as active or passive as I need to be on a given day, while still living my passion.
I am also a poet, and invite you to check out my new publishing group, Patient Press, at patientpress.blogspot.com. I wrote this poem, No Dragon Slayer, during a fundraiser for the Cystic Fibrosis Foundation called “Unleash Your Story.”
No Dragon Slayer
I am a dragon.
I fly through the sky though heavy with wings like steel, never tiring.
I land upon the sea perched on delicate feet, never sinking.
I plunge to the deepest depth of the ocean, never gasping.
I do not need to breathe like you.
I do no need to breathe.
I am a green white pink white purple white dragon.
I float into clouds and am invisible.
I climb among trees and am a giant.
I balance on the mountaintop only to witness.
I do not need to rest like you.
I do not need to rest.
I am a mythical, imaginary, remembered and forgotten dragon.
I do not fly among you, but I would.
I may not fly forever, but I could.
I will not fly in silence, though I should.
I am not defeated by you.
I am not defeated.
I am a dragon. .
# (c) MEP
At Patient Press, we are coordinating a poetry contest: "Putting It In Words: Poems About Cystic Fibrosis.” The contest is open to all ages, Kindergarten through 110 years old! We like funny poems. We like sad poems. We like goofy poems. We like angry poems. We like poems. You can win a nifty t-shirt and a small cash prize! WINNERS will be announced on the Patient Press Blog and on CysticLife.org. Check it out! http://patientpress.blogspot.com/