Thank you everyone, for the kind comments about the aolhealth.com article that posted late last week. As always, I was honest, frank and direct when asked to talk about living life with Epilepsy.
I heard from SO many readers, both new and old…and your compliments were very encouraging, not to mention, welcome! I also received lots of advice, questions and words of encouragement. It’s why I’m doing what I’m doing with this blog!
For the most part, the comments were sort of these, ‘right there with ya’ statements. I think when you have Epilepsy or when you care for someone with Epilepsy, you share this significant bond with others who live with it. We can swap stories of medications that work and don’t work, treatment options, doctor preferences, means of support, etc. Friendships that develop, whether in person or virtual, can be so strong and are frankly the means that get us through this thing we call Epilepsy.
What puzzled me though, were the few negative and almost bitter comments about me or Epilepsy in general. I’m tough, but when it comes to being critical of this disease, I can’t help but react. And, the comments came from both those living with Epilepsy and those who don’t. It’s crazy to re-hash negativity, but I wanted to say a few things about this because it’s been lingering in my mind all weekend. Yes, I’m troubled! And, let me say that the following points are absolutely my opinion, but I hope you’ll give this some thought.
So, here goes…
1. We won’t move forward in terms of bringing Epilepsy out of the shadows if we don’t remain positive. In other words, wondering why other diseases like cancer or arthritis get more public funding or more attention won’t help our cause. We all know it’s a huge issue, but put that energy into raising awareness and talking facts about Epilepsy! It’s that simple. And, we will get results if we all stick together. It will take time, but I’m confident it will work.
2. Each person CAN and will make a difference. Whether you support SUDEP awareness with a foundation like Danny Did or your Epilepsy Foundation affiliate, you can be heard. But, we shouldn’t resent those who don’t want to support a certain organization. There’s a group, or even multiple groups, out there for everyone. Personally, I select my affiliations carefully and with pride. I know I can make a difference with the Epilepsy Foundation of Michigan, and it’s right here in my backyard. But, that doesn’t mean I don’t lend my support to other groups that have a mission I believe in. I look for strength and presence in an organization.If you must contact an organization and request that they clarify their mission, do so! Whether you support a group financially or with your presence, it’s your right to know exactly what they stand for, and it’s your right to choose who you’d like to back.
3. We all have VERY different struggles with Epilepsy, and as my Dad used to say…’you don’t know what’s going on behind someone’s front door’, so in other words, we shouldn’t judge! Many of us share challenges with medications, family struggles when it comes to support and understanding, setbacks in terms of schooling and driving, employment issues, and overall tough times. But, we can help each other by understanding, suggesting and accepting, not resenting.
4. Finally, connect! In other words, there are literally millions out there who share this struggle. The web can help us do this, so really…it’s not too hard! If I can help someone and even comfort her by detailing how I felt during my pregnancy and what my Epilepsy was like during those 9 1/2 months, I’m thrilled to do it. My life with Epilepsy is everything BUT perfect and never will be, and I’m encouraged when I swap stories with someone and we can discuss how to solve our similar issues. We can all call ourselves advocates if we understand and accept each other.
So, call it a rant…or say I’m simply getting a few things off my chest. I wanted to make those 4 points on this Monday morning. I hope you’ll give this some thought and move forward with your own push for awareness and advocacy!
By the way..all comments welcome!