I am feeling pretty emotional right now.
Maybe it is from spending the day with so many amazing, committed and passionate epilepsy advocates and families either exhibiting or attending the Epilepsy Awareness Day at Disneyland Expo.
Maybe it is pure exhaustion from spending the day talking with epilepsy families about our 365 Caregiving Tips books (we had a booth at the expo).
Maybe it is because I not only got to spend time with Other Brother but also my co-authors and friends, Kathy and Gincy. The screaming, hugging, laughing and more screaming and laughing and hugging with more to look forward to tomorrow.
I suppose it could be because Robert was overwhelmed with activity and stimulation yesterday and today that his seizures kept coming today. Listening to him tell everyone he was “excellently great” between seizures both warmed my heart and broke it in a million pieces.
It could also be because I do love a good underdog story and, while writing this, I am watching the Cubs come within one out from a World Series win. (Although I can’t help but feel bad for Cleveland since everyone must be rooting for the Cubs to finally win a World Series.)
Whatever the reason, my emotions feel a bit raw right now and reading this follow-up interview with Michelle Reichartz made me tear up a bit. She struggles yet she perseveres. I mean, look at that smile!
Michelle got her Master’s degree and is hoping to next work on her Ph.D.! She takes the time to talk with parents of kids with her form of epilepsy because the parents want to know what their kids are struggling with.
She struggles yet she perseveres AND she helps others.
I loved learning about Michelle in 2012 and love seeing that her resilience still shines four years later.
Robert’s Sister: I interviewed you in November 2012 and I am curious what changes have occurred in the last four years. Please remind us how epilepsy has affected your life.
Since last time, I’ve actually taken a new job and moved to South Carolina. I have myoclonic astatic epilepsy, but for the most part it’s inactive. My biggest triggers are stress, strobe lights, and sleep deprivation.
Robert’s Sister: What is the most significant change in your life since our last interview?
Taking a new job and basically uprooting my life to another state. My parents and brother live in North Carolina, so I’m close to my family again. However, it’s been a big shift going from living with my parents or roommates to living on my own.
Robert’s Sister: Has the treatment changed for you or your loved one?
I still control it through diet and lifestyle changes. It’s definitely a struggle still since my job can get really rough stress-wise, but it's worth it. I function better without medication; can clear my head much better. The ketogenic diet is what makes the biggest difference.
When I was on the medication at a younger age, I felt trapped in my own skin. In a lot of ways, it felt like I was stuck in a glass box that no one could hear or see me in. It’s an absolutely awful feeling, but I’ve met a lot of people over the years who have told me they know where I’m coming from. I’m a HUGE advocate for epilepsy research and many times I’ll run into parents of kids with the same form of epilepsy I have. They love asking me questions, probing my perspective so they can better understand how their own kids feel. I love doing it because I know it makes a world of difference for their relationship - it’s something my parents and I always wished we had the access to.
Robert’s Sister: What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?
I’m definitely struggling to keep my progress. The stress is the hardest part - it has such an impact on my ability to think that whenever a little is present in my life, I have a very hard time holding it all together. I have made a really strong point of only keeping people in my life who help me relax and stay calm. It’s not always easy, but it’s become essential to stay seizure free. The people around me have the biggest influence on my emotional and cognitive abilities.
Robert’s Sister: What caregiving help do you use?
None - when things get really bad, I lean on my parents for help. However, that’s far and few between - for the most part, I’m okay with the ketogenic diet alone.
Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?
Stayed the same. It’s always been a roller coaster for me. For a few months, things go really well and I have almost no issues at all. Then for a few months I really struggle to hold it all together and I start to get depressed - that’s when I get seizures again (if at all). I get frustrated still a lot because I wish there was a way to improve my epilepsy, but with all the research I’ve done - I know I’m doing the best I can.
Robert’s Sister: What has been your favorite moment these last four years?
Graduating with my Master’s Degree in Business Administration. It’s something I never thought I’d achieve.
Robert’s Sister: What do you see for yourself or your loved one in the next four years?
I’d LOVE to get my Ph.D. in Organizational Behavior, so best case scenario I’m in school doing that in 4 years!
Robert’s Sister: Is there anything else you want to say?
Like many invisible diseases, epilepsy is a daily struggle. It’s easy to forget that someone is crippled by the disorder when you can’t see the harm it does to them from the outside. Never forget to have patience with anyone who has an invisible disease - it makes a world of a difference to me when someone chooses to take the time and let me figure my way out of the pain. It’s the hardest part about every day and night.
Robert’s Sister: Please tell us how we can contact any organizations you support or if you have a website or business.
Please support CURE - the work they do is so essential to better research into how epilepsy works and without that, we’ll never find a cure for epilepsy.
Thank you for your time, Michelle! I cannot wait to hear when you get your Ph.D.!