Living Duchenne: I Love the Internet

Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, Living Duchenne.


Living Duchenne: I Love the Internet 

 

Dear Internet, how I do love thee! Let me count just a few of the ways.

When I had never heard the word "Duchenne" before, I turned to you. And you gave me information. (Wikipedia)

When I felt alone and isolated, you offered me hundreds of friends. (Facebook)

When I wanted to take action, you connected me to ways I could volunteer. (PPMD, FACES)

When I needed reminding about taking care of myself, you were there. (HerselfFirst)

When I was ready for greater depth, you informed me. (DuchenneConnect Direct Access Webinar Series)

When I did my civic duty, you led me. (PPMD Advocacy)

When I stood up to be counted, you added me. (DuchenneConnect)

When I needed an adventure, you drove me. (Darius Goes West)

When I wondered about what an independent, adult life for my son could be like, you taught me. (Life In Moeschen)

When I needed to see those stretches again, you showed me. (Youtube)

When I wanted to talk, you listened. (LivingDuchenne)

Dear Internet, you've been there for me, all the way. You've almost never let me down. You've been there at 3am when I was struggling with new diagnosis fear and grief. You've been there at 3pm when I needed a quick laugh before I was ready to pick up the kids. Dear Internet, you've been my very best friend, through good times and bad, through confusion and existential angst, through birthdays and hospital stays and crises of one kind and another. In fact, whenever I have a question about almost anything, I turn to you for information and advice. Your place is very deep in my heart.

There was a time, long ago, before you were born. In those awful days, people had a much harder struggle. In those days, a family with Duchenne might go their whole lives without knowing a single other person who had DBMD. They might have felt alone, lost, confused. They might have felt helpless. They might not have understood the diagnosis and its implications. They might not have known about the great research that could have given them hope. They might not have known that there were ways for them to help-- clinical trials, support groups, charitable organizations, advocacy. They might not have known who to turn to when they needed help themselves. But, really, though I have struggled with many emotions related to Duchenne, I have never felt these things, because I had you. 

Some people deride the Internet as frivolous, classifying it as a kind of entertainment. But they're wrong. The Internet is all about self education and personal empowerment. The Internet is about democracy. The Internet is about disseminating the vital information of survival, whether that comes in the form of a video clip of Cary Grant demonstrating how to tie a tie or the latest published statistics on how using a Cough Assist machine regularly improves life expectancy. The Internet has been the single most important medical tool of our age. We use the Internet to buy wheelchairs, medical supplies, and drugs that would never be available for purchase locally. We use it to pool our resources and knowledge. We use it to gather data that we then use to force our insurance companies to pay for needed services they want to deny. I've even been witness to an incident where a man with Duchenne was living in a nursing facility and had dropped his call button onto the floor. He was unable to call a nurse directly but he was able to use Facebook. Within minutes, dozens of phone calls came pouring in to his nursing facility, informing his nurses that they needed to check on him right away. That's not entertainment. So the Internet has some videos of kitties. And websites where you can buy obscure action figures. Don't let that fool you.

Thank you, dear Internet. You've been my university, my medical coordinator, my employer, my tool, my ally, and my friend. I want to spend the rest of my life with you.

<3



 

 
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Comment by Patti Frank on February 7, 2013 at 9:25am

Exactly!!

Comment by Carol Keskeny on February 6, 2013 at 7:31am

This is fabulous!  You did a wonderful job with this blog and all of it is so true.  The Internet has been so recently available in our lives and yet we don't remember not having it.  I know when my son was first diagnosed I found a MS group to chat with, (Pat was just starting PPMD),  and they helped me through a lot of tough times.  A single mom, whose son was just diagnosed with DMD, going through a divorce, my father died suddenly, I was so lost that first year.  The internet connected me with people, with help, with information, it connected me to the world.  Through all of the ups and downs, the internet has been a friend, I use it let my family know what's going on when we are in the ICU and they are thousands of miles away. Thank you for this blog, I needed that time and space to appreciate what I take for granted.    

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