Wednesday, December 7, 2016

Epilepsy Awareness Month: Grateful and Inspired

November is the “official” Epilepsy Awareness Month but epilepsy and seizures and caregiving don’t stop just because it is December. People live it every day, every month, every year.

Every moment.

The people I was able to interview this year know what I am talking about. These people have epilepsy or care for someone with epilepsy and somehow find time to also advocate and educate others. They still have time to follow their dreams, go to college, get advanced degrees and continue to live their lives day in, day out.

Epilepsy does not stop these people. There may be stigma and lack of awareness about epilepsy or what to do when witnessing a seizure but people who have epilepsy in their life don’t let that hold them back.

These people have grit!

I absolutely loved following up with the people I interviewed in November 2012. These people and their stories of resilience, persistence and tenacity are as inspiring as anyone could be.

I also was delighted to interview people I missed the first time around! These people are just as resilient, strong and persistent in their fight against epilepsy. (And, heads up, you know I’ll email you for a follow-up interview in four years). J 

My heart hurt to read the struggles that so many people face with epilepsy but I was also overcome with emotion when these same people persevered through terrible obstacles.

I was so inspired by these people who think of others, are kind and who do not give up. Ever.

Below is a brief recap of these exceptional people. Please click on their name to read their full interview.

Cathi Shaw, author and mom, has found that delicate balance of caring for her daughter who has epilepsy without being overprotective and is, in fact, extraordinarily supportive. Cathi has watched her daughter struggle with reactions to medications, start her own non-profit and win the Terry Fox Humanitarian Award.

Michelle Reichartz was first interviewed in 2012 and she has since moved to be closer to family, got her Master’s Degree and plans to pursue her Ph.D.! Epilepsy definitely does not stop this woman from following her dreams and finding success along the way.

Tiffany Kairos is a strong, relentless advocate for those with epilepsy. She educates others, shares her personal story and was nominated for the WEGO Health Awards, Best in Show: Twitter – which she won! Congratulations, Tiffany! Oh yeah, she’s also a badass.

How many people start a non-profit to help support families with children who suffer from epilepsy? There are several. How many do so without personally having a child with epilepsy? Probably one: Susan Noble. Susan and her foundation, Epilepsy Warriors, are doing great work for families with a child who has epilepsy.

Eileen Murray’s story struck a chord with readers. She cares for her son, Will, who at 23 years old has had epilepsy most of his life. They have tried numerous treatments for Will which is all too common of an experience for families. Will is a gentle soul with a fantastic sense of humor and, as Eileen shares in one of her stories, a heartwarming empathetic side.

The absolute brutal side of epilepsy is shared in painful detail by Christy Shake. Christy was interviewed in 2012 and she graciously gives us an update on treatments and progress over the last four years. Her personal blog, Calvin’s Story, is a must-read.

Teresa Stallone not only has epilepsy herself but cares for her mom who also has epilepsy. We followed up with Teresa from 2012 and do you know what her favorite moment has been these last few years? Finding a compassionate dentist and getting much needed dental work done. (Do not even get me started at the lack of adequate dental care for those who cannot afford it yet need it most. Anti-seizure medications can do horrible damage to teeth and general oral health.)

Sometimes epilepsy takes away our loved one, too. While epilepsy was just one piece of a whole host of issues that Mike and Lorraine Kimball’s son Mikie had, his health did not define who he was – or who they are. Mike and Lorraine are devoted parents and gave Mikie lots of love and protection in his 43 years here.

Then there is Connor Doran who has inspired me since I first saw him on America’s Got Talent. Connor continues to follow his dreams in spite of his epilepsy and the medication and epilepsy induced side-effects and has graduated with an AA, found the love of his life and was recently accepted to the University of Puget Sound (he had his fingers crossed for such a positive outcome when we interviewed him.) Congratulations, Connor!

Leslie Hammer’s story is one that rips my heart apart. She has overcome so many obstacles and sometimes that means just moving one foot in front of the other. But she does it and she does it every single day. Epilepsy needs a cure so Leslie and people like her can just be given a break.

Amy Schlenker has had to make some very difficult decisions in order to get her daughter, Paige, the treatment she needed to control her epilepsy. Can you imagine having to put your eight year old through her third brain surgery? And this one was a complete right modified functional Hemispherectomy! But it worked! I am not really in charge of these things but I hereby declare Amy Schlenker Mother of the Year!

Of course, I had to interview my brother, Robert Wright. I was just today having a conversation about Robert and his “excellent” attitude. Robert has somehow managed to live in the moment and to be content and happy with simple things. He also stays optimistic and is convinced when I interview him again in four years that “Probably I’ll get healed completely.” His faith is unwavering and he inspires me every day. I still have a lot to learn from him.

I also interviewed my husband and co-caregiver extraordinaire. 
Richard Kreis is just what Robert needs: a fellow jokester and Mr. Fix-It. I am delighted every day when I hear the two of them laughing and joking around. It drives me nuts sometimes when I’m trying to get a word in edgewise or talk about something serious but I couldn’t care for Robert without Richard. Plus, he’s a relentless advocate for caregivers!

Laurie Adamkiewicz is another mom who deserves Mother of the Year (for several years running now). Since I’m not really in charge of that award, I think it’s okay to give it away to several people. Laurie takes care of her son Kyle and has seen him and their family through some very difficult times. She was happily caring for two sons when one, at age six, started having seizures and ended up having up to 100 a day. That is life-changing. Laurie is a devoted mom and strong advocate and also a very talented photographer. Check out her website!

My last interview was with me (which is quite a trick!). I mainly wanted to answer the same questions I asked of others and to share how Robert has changed in the last four years. There has been a significant decline in his health but Robert lives with us now and it has been the best possible solution for all of us.

I am extremely grateful to have been a part of these interviews and to share these amazing people with you.

If you ever need a reminder of some of the inspiring people in this world, please re-read these stories and know that if you have epilepsy, you are not alone. If you care for someone with epilepsy, you are not alone. If you advocate for those with epilepsy, you are not alone.

Please share their stories so others know they are not alone.

Let’s change how people think about epilepsy and let’s do this together.

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