Captain's Blog - Stardate 60414.1
When it comes to heroes, I have many, both real and imaginary. My parents, President Obama, The Flash. And since it's Princess Week on the Captain's Blog, I've been putting the focus on powerful women in fantasy fiction.
But today I want to talk about a real-life hero of mine. We met almost twenty-five years ago through an amazing children's theatre program called CAST. Communication Arts Speech and Theatre. In particular, we worked on an abridged version of Midsummer Night's Dream. I was Demetrius and...I'm struggling to remember but I believe she was Hermia. Or Helena. I'm sure my Mom has a program somewhere. We were in eighth grade.
We continued on to high school, and though we had a number of the same interests, we often moved in slightly different groups. I don't believe we've seen each other since high school graduation. We were reconnected through the magic of Facebook in 2008 but interacted only casually.
In 2012, my grade school friend Sarah Coglianese was diagnosed with ALS, amyotrophic lateral sclerosis, which her website Speed4Sarah defines as "a neurological disease. It means that your brain isn’t talking to your muscles, and, as a result, those muscles twitch in frustration, then atrophy, and eventually become paralyzed. The disease starts differently for different people. Some begin with limb onset: weak legs, feet, arms, fingers. Some have bulbar onset: difficulty speaking or swallowing. ALS is uniformly fatal, usually from respiratory failure, with an average life expectancy of 2-5 years from diagnosis."
This is a devastating diagnosis. The more I've read or seen about this disease I can only imagine what it has the potential to do to one's family, one's heart, and ones's soul.
What Sarah has done is the most amazing response to such a challenging situation. She continues to fight every day. She started a blog and a website where she shares her experiences. These range from the endearingly comical to the introspective, to the downright heart-breaking. She is blessed with a loving and supportive husband and continues to raise a beautiful and independent daughter. She is working with every breath to make every moment as full as possible. On top of her family life, she is raising awareness of this destructive and under-funded illness.
Sarah Coglianese is a hero. Please learn more about her story in this beautiful video.