Posts

Stop all this hate?

As I was browsing social media the other day, I saw the most baffling post -- so much so that I'm still perplexed by it. A hometown acquaintance posted something crass enough that I don't actually feel comfortable repeating it because, frankly, the opinion doesn't deserve any weight. However, I'll share a few of the contradictory hashtags: #growup #getoveryourself #stopallthishate.
The post in itself was offensive, hands-down. If you don't believe me, I'll just tip you off that it included the terms "butt hurt" and "vagasil" (spelled incorrectly). Although I didn't agree with the opinion or the means of conveying it, I didn't do a double-take until I got to the hashtag #stopallthishate. After reading one of the more hateful posts I'd seen in quite some time, the irony of the hashtag was not lost on me. 
I didn't take the bait and respond to the post, although maybe I should have. Some posts seem clearly intended for shock va…

When the fight ends

After a 22-year battle with cystic fibrosis, my friend Darcey passed away on Wednesday, August 3. I first met her when I was an intern at the Make-A-Wish Foundation in 2006. I was preparing some wish stories to use in marketing pieces, and I came across a girl with cystic fibrosis who had recently been granted a wish. In the coming weeks, she attended a Make-A-Wish event, and I had the pleasure of meeting her face-to-face. Darcey was 13 years old when we met, which tends to be a particularly rebellious time.

After we met, I tried to take her under my wing, checking in on her and even bringing her surprises in the hospital. Attending CF camp as a child, I had the luxury of meeting other CFers that were my age, but I hadn't gotten many opportunities to meet people in different age groups.  As an adolescent, having CF can be especially isolating, so I wanted to be a friend -- and even a role model -- to Darcey. CF or no CF, 13 isn't an easy age. 
I remember I had a necklace that …

Equality: Worth every penny

I have never considered myself a very political person. For as long as I can remember, I've always felt that politics were much bigger than me and, despite being a pretty regular voter, I have often focused on being a contributing member of society. Feeling that politics are somewhat beyond my control, I try to make a positive difference by showing compassion in my daily life. I make it a point to be friendly, I seek ways to help people, and I try to use my voice for good.

Having grown up with cystic fibrosis and an abbreviated life expectancy, I realized and accepted that my life would be measured by its intensity rather than its longevity. For me, life hasn't been about money or career advancement or retirement. Instead, it's been about making a difference, a cliché that I am constantly working to define. As a child, I wanted to do something incredible that the whole world would know about, thinking success was largely measured by fame. However, as my childhood dreams ev…

Keep on keepin' on

(Wow, the word "keep" just got really weird. You know how that happens sometimes?)

My goal this weekend was to watch every episode of The Keepers. Lofty goal, I know, and I am proud to say I succeeded. I am a documentary kind of gal, so this was right up my nonfiction alley. I won't say anything spoilerish -- not that I really could, anyway -- but it got my little brain wheels turning.

Most of the time, when I think about social media, I think about all of the people who have been given voices and widespread reach despite no interest in using it for positivity. If you are curious as to what I mean, take a look at practically any comments section, and you'll see some of the most hateful, misinformed dialogue that you can imagine.

However, those are just the voices that get the most attention. Some people take the bait and argue back. Others try to have an educated discussion. Then you've got the person attacking grammar. Next thing you know, people are calling nam…

Walking the path

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This picture will be forever etched into my mind and my soul. The year was 1998, and I was at the annual cystic fibrosis camp, Camp Wak-N-Hak. As a child, camp was the one place where I was surrounded by people who understood what my life was like. For one week each year, I felt normal. We all had an early wake-up call for breathing treatments and airway clearance. We all had to take the same handfuls of pills. We all coughed at any time without concern or commentary. And we all knew the gravity that comes with a disease like CF.

I created some of my most precious memories at camp, but it has also been the source of much heartache. In the above photo, we were walking back to the cabin after dinner. I’m holding a carton of chocolate milk, Ashley has her hair in little twists, and Teresa is wearing a backward adidas hat that so nicely complements my Nike hat. I can’t imagine what we were discussing, but I can assure you that we were carefree and laughing because that was what camp was …