Carly Medosch is a designer, long-time friend, and is one of the wittiest people I know. Not only was she enrolled in the JMU Graphic Design program with me, we were also dorm neighbors only living a few feet from each other. Carly has Crohn’s disease and since a recent newspaper featured her story, she is now more openly expressing what it is like to be chronically ill via Twitter.
The article explains the difficulties that Carly faces as she struggles with a chronic illness but appears to be a perfectly healthy, hard working, successful (not to mention hilarious) adult. Not only does she look fine, but she doesn’t normally want to explain her situation because it can sometimes be embarrassing. Carly has additional day to day struggles on top of everything most healthy individuals have to deal with.
Sure, some of us may know someone with Crohn’s or a chronic illness but do we really KNOW what they are going through? Do we understand the pain, the embarrassment, the obstacles, the frustrations, and the fear? How can we have compassion when we don’t even really know we should?
Social media and Twitter are creating a new opportunity for those who are misunderstood to explain, giving all of us who may never know the ability to be more compassionate.
As I am typing this Carly is tweeting from the ER. I am on edge, watching to see if her account updates, seeing what she has to deal with, hoping she is okay. I realize the feelings of anxiety I am
having and the effort I am making pales in comparison to ACTUALLY being there (her amazing mom is always by her side)… but now I know. I know that it’s happening, and I sympathize, I think about the situation differently and wonder how she balances all the same things in life as me… plus Crohn’s. Carly is a superhero. Thanks to twitter, it’s not just me, but many others. It’s friends, other designers, colleagues… and in Carly’s case… Nick Dawson (@nickdawson) at Bon Secures (@BonSecoursRVA), the healthcare system that runs the hospital she is in.
You can follow Carly at @CarlyRM
Please consider donating to Carly’s CCFA (Crohn’s and Colitis Foundation of America) Take Steps Walk Team.
For More information please visit the CCFA Website.
3 Comments
Samantha:
Thank you for your compassion and friendship to Carly. Both of the things she needs to most! You are a true friend and I appreciate that immensely. Thanks also for getting the word out about Crohn’s Disease. Hopefully one day people will know as much about that as they do cancer. And maybe one day there will also be a cure. Love, Mary Jo (better known as Carly’s Mom, my prefered name!)
— January 28, 2010
Samantha, Thank you for this wonderful post. It is clear that you are a good friend and a caring person. We share your enthusiasm for the web and social media and how those connections can make us all more compassionate.
Thank you again for the thoughtful post,
Nick Dawson - Bon Secours
— January 28, 2010
My hats off to Carly. I can honestly say I know what’s she’s going through. I was born with a rare endochronological disorder called Klinefelter’s Syndrome. I also appear to be a perfectly healthy and from all outward appearances fine, but in truth KS effects every aspect of my life.
Example: where a normal person can get dressed and brush their teeth easily with me this takes about an hour or more since I have to stop occasionally and rest. Along with the fatigue comes loss of concentration and sporadic memory.
My heart goes out to Carly and I hope she is doing well. One thing I have learned being handicapped is that whatever doesn’t kill you makes you stronger. With those of us like Carly and myself that just happens to be a daily event.
— January 30, 2010