November 2011

Insight: Ask for Support

Welcome to the first edition of Insight--the new monthly e-newsletter for the FACES community. In the past, FACES had a quarterly newsletter. As you may recall this past summer's newsletter had an entirely new look that was much more contemporary in design, with an engaging presentation style. The redesign of the newsletter was the catalyst for creating a shorter monthly e-newsletter. The goal of insight is to communicate on a more regular basis what is taking place within the FACES community; a special highlight focus on a doctor each month at the Comprehensive Epilepsy Center, (this will begin with the December issue), and updates on epilepsy and seizure research. We live in an electronic world that changes so fast. Hence, FACES wants to be at the forefront of keeping you up to date with the latest information. FACES will continue to have an annual newsletter that will be produced each summer in addition to insight.

NYU Langone Medical Center changed their logo design. You will notice that FACES is also pleased to present for the first time with insight our new logo. FACES will now be in all capitals. This new sleek design reflects the critical importance of being relevant in today's social media world. A growing commitment of FACES is to be at the forefront of bringing you the latest news and resources on epilepsy and seizures. The focus of the FACES logo remains on finding a cure with the letter C as the focal point.

Finally, FACES will be launching a new website on December 15, 2011. FACES cannot wait to share it with you! Wishing you and your loved ones a Happy and Healthy Thanksgiving. Truly, thank you for your support and loyalty this past year. FACES would not be what it is today without your friendship

 

Best wishes,

Brian G. Bachand
Executive Director

 

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NOVEMBER IS EPILEPSY AWARENESS MONTH

Help FACES raise awareness about epilepsy and seizures by sharing our YouTube video, "You Can Do This!"


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CARING FOR THE CARETAKER

by Louis J. Alloro, M.Ed., MAPP

Tuesday evening, October 4th, I gave a talk at NYU Langone Medical Center for FACES: a nonprofit devoted to improving lives of people affected by sezures and epilepsy. The program last week, Caring for the Caretaker, attracted 200 people, many of whom were parents of children with epilepsy, and some were patients themselves.

What happened though was quite unlike anything I've experienced before as a facilitator: resistance writ large across a crowd of folks up against real stinkin' conditions. "Who will pay the medical bills?" "Will he ever be able to ever live alone?"

"I never know if my son's next seizure will be his last," one mom expressed to me. I spoke to Jeanne several days prior as I was preparing for this talk, and quickly realized that I didn't know much about this chronic condition; heck, I couldn't even spell it

So, I started the program offering gratitude for their roles as caretakers and asking for forgiveness of my ignorance of what they're facing day-to-day. I had done some research only to find epilepsy affects a lot of people and that there's no real cure for it.

Up front in the program, I told the audience that I didn't have a prescription for their troubles, nor would they, in two hours, have everything they need to be resilient. Learning positive psychology to me is like going to the gym is to your body. It's about building a new muscle, which takes time, intention, attention, and like all good workouts: an open mind and heart.

However, I forgot to mention the "open mind and heart part" at the beginning of the talk as I usually do. And from hindsight, I was able to see other holes that I can own like, not getting clear on what their expectations were coming in. I often do a "check-in", asking participants to tap into what they're coming wanting, which makes a point that carries through the content of the lab: what we expect is what we experience.

There were some in that auditorium who got it. Others didn't. And yet others, couldn't. At one point, a mother said, "Two years ago I wouldn't have been able to hear this message. Now I can." This was one of many insightful moments that came from within this learning lab: that we're all at different places. And so it is.
please visit www.louisalloro.com to continue reading Louis' blog entry

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HOW TO TELL PEOPLE YOU HAVE EPILEPSY

by Emma Davis

Do you ever feel like you have so much boxed up inside of you? Or that your head is going to explode from the constant buzzing of secrets? And are you ashamed of a certain secret that describes part of your whole? Are you scared that this secret defines you as a person? I know I was.

When I was little, my peers never truly understood what I was about. In fact, I was completely misunderstood. When I tried to share and clarify what made me tick, people were confused and hesitant and overwhelmed. After sharing with whom I thought were my best friends I began feeling more alone than ever. I kept being pushed to the outside of their lives. And soon it became something like a one-sided mirror. You know the kind that detectives use when watching a criminal? I could see in, but people never bothered to break free of conformism and try to see me through the foggy glass. I constantly played the role of the observer as I looked on what a "normal" life was. At first I was jealous that these girls had what I wanted most, true friends. Those few people who love you just for you and nothing else. But looking more closely at these girls I knew that they didn't even really appreciate their friendships because they had no idea what life would be like without them. As I grew older and developed more confidence, I thought I was better off because I didn't want to know anyone who didn't want to know me. I turned my back to the mirror and lived happily on my own for years thinking I could handle everything myself.

It wasn't until high school that I realized the difference between being alone and being lonely. I had been alone and independent and strong because I had to be. I was tired of waiting for the possibility of friendship. People are afraid of things that are different. I realized after years of being alone that I couldn't blame my lack of friendships just on others. I was afraid to be social because it meant being vulnerable to further rejection.

Honestly, there isn't a magic wand to wave or a big button to push to make being social easier. You just have to jump. And sometimes I fell and was bruised but ultimately I found these amazing people who adored my humor and my exuberant personality and loved surrounding themselves with me constantly. As I realized that these people were the kind of true friends that I had searched and prayed for, I was nervous to tell them - last time I did so I was ostracized. I also felt guilty for not being completely honest with them about my history because it is a big part of my fabulous whole.

I decided that I would have to open myself up eventually and I did. I couldn't have been happier. They were understanding, inquisitive, caring. Everything I had wanted and more. The minute I finished telling them and they hugged me that gigantic one-sided glass shattered into a million pieces. My trust in them grew immensely and to this day we all stand by each other, despite any differences.

I encourage you to be comfortable enough with who you are to be able to share with the people in your life that you have epilepsy. I'm not saying to tell just anyone and everyone. Be very careful with whom you choose to share this but don't feel so ashamed or nervous or scared that you can't tell your closest friends. They will stand by you and think nothing of it except that it is just another amazing thing that is a part of you. Don't be afraid to bust through that murky mirror!

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On Saturday, September 24th, FACES welcomed a large crowd of young people to Chelsea Piers for GAME DAY. It was a day filled with rock climbing, face-painting, games and just fun. Please enjoy these photos of some very happy smiling faces who participated on Saturday. For more FACES photos, visit: facebook.com/facesfriends.