This is a short video that I shared online yesterday. Some of you may have already seen it. If not, it’s where I explain what EDS is and how I cope with it daily and manage my writing life around it. I really wanted people to understand that though I talk about it to raise awareness, I am not going to be stopped from having some kind of life by it, though obviously as you will see, a completely functioning life isn’t what is on offer, but having a disability means you have to adjust and make the most out of what you have and people need to accept you for who you are and not make pre-determined decisions about you.
If you haven’t already seen it, I hope it explains and raises awareness a little, and shows you that this bendy is still going to be a crime writer!
Margot Kinberg says
Rebecca – What a powerful video! I really respect you for being open about what you cope with, and how it all impacts you. I also respect you for determining to have a good life and accomplish things. As you say, it’s not a matter of whether you can do things, but how and when. I know this will be really helpful to others who have to cope with disabilities. And it’s helped those of us who don’t know as much about EDS get a clearer understanding of it.
readingwritingandriesling says
Rebecca I hope the collar brings you some relief. I enjoyed hearing your voice on this video – it makes the connection a little stronger than that with just typed words 🙂 EDS is something that I had not heard about till I started reading your blog – you are a great spokesperson and a great writer – you are not defined by EDS but it does allow your strength to shine through .
Alex J. Cavanaugh says
Yes, I do hope the collar helps. Didn’t realize EDS literally affected every part of you. However, it can’t touch your spirit!
Jacqui Murray says
Wonderful video. It makes EDS so real. I appreciate the bravery it took to post this. I have several handicaps that I hide for the very reasons you discuss. I am invited to present at conferences (in my area of expertise) which I regularly turn down because I never know when I’ll feel good. I suspect you’re the same. It’s nice to know a kindred spirit.
crimeworm says
Thanks for that Rebecca – I’d never heard of EDS until reading about your experiences. I really admire your determination to do what you want to do in life and not let this stop you. You’re one tough lady!
nancyrae4 says
Thanks Rebecca for sharing this part of your life. Your creativity and bravery are an inspiration. How and when rather than whether are words of wisdom for everyone!