My goal this month is to have people tell their stories from the perspective of either living with epilepsy themselves or of knowing someone with epilepsy or from the perspective of an organization – it’s goals, mission and what it hopes to accomplish for those with epilepsy.
On Wednesday, we interviewed Michelle Reichartz who was diagnosed with epilepsy at age 12. Because she is such a private person, she didn’t share her diagnosis with people outside her family until she was 21.
That’s a long time to keep something that is such a part of you a secret.
Then we met Alex DeYoung. Alex is Michelle’s best friend and, by his own admission, her fierce protector. I suspect Michelle felt safe with Alex which is why she opened up to him about her epilepsy. From what I can tell, the two of them make a terrific team.
So much so, they co-founded the organization Calm The Storm Within. They both told Robert’s Sister a little more about their organization. (There I go again with the third person!).
Robert’s Sister: Tell us what you do with regards to epilepsy – are you an advocate or medical professional or run an organization?
|Calm The Storm Within|
Robert’s Sister: How did you get involved in epilepsy advocacy? Do you have epilepsy or know someone who has it?
One of our founders, Michelle Reichartz, has epilepsy. The birth of our organization comes from her frustration that no one in the medical profession has been able to explain why she has MAE, and the realization that the majority of research being done today is based around case management rather than cause discovery.
Robert’s Sister: What is your mission with regards to epilepsy (treating it or advocating through the organization)?
Our mission is to begin providing grants to research specifically geared towards determining the root causes of the various types of epilepsy. We believe that truly effective treatment and, hopefully, one day a cure, comes from understanding how a disease begins. As we fund grants we will continue our current public education efforts.
Robert’s Sister: There are so many stories – many sad stories – about those with epilepsy. How do you continue to be passionate about your cause in spite of these stories?
Those stories are the stories that fuel our passion. We are working to restore hope to the epilepsy community. We work in the hope that we can start telling stories of survival rather than the stories of those whose lives have been shattered by the effects of their disease.
Robert’s Sister: How has epilepsy affected your life?
For the two of us, I would say it's definitely affected our dynamic with others. Whenever we're together, people immediately notice how protective Alex is of me. I've been dealing with this since I was young but Alex is still getting used to the little things that can cause my hand tremors or even a seizure. In many ways he's become more reactive to it than I have but in a few situations that's actually been a life- saver. We definitely have become closer through it than I think we normally would have.
Robert’s Sister: What do you see as the greatest need for epilepsy awareness or research?
The greatness need for epilepsy awareness is that the community needs to make its voice heard. The portion of the public that hasn’t had their lives touched by epilepsy in a tangible way needs to be educated. As far as research goes, there needs to be more funding. In companion with that, the funding we do have needs to be utilized more efficiently and more effectively. The focus needs to be shifted away from making one more drug, or adding one more pill to an already oppressive regimen, and towards providing a regimen that is manageable, effective and affordable for all patients. We cannot achieve that without shifting the focus, at least in part, away from drug research towards tangible disorder research.
Robert’s Sister: What do you want people to know about epilepsy?
People with epilepsy are not their disease. It does not define who they are. It is terribly important if you know someone that does have epilepsy that you don’t treat them like a “Monster.” Because they have a largely misunderstood condition, they already feel like “Monsters” and every effort should be made to prove to them that they are not.
Robert’s Sister: Is there anything else you want to say?
Above all else, we are driven by the stories from others that we hear. My story has been very mild compared to others with epilepsy and for us; we've been driven by that. Because my case is so mild, I want to do more in the epilepsy community to further the understanding of the condition for those who can't stand for themselves. We want to find answers to why some cases are life-threatening and damaging compared to others like mine who are slow, easy to maintain, and take their time eating at your psyche at moments.
Robert’s Sister: Please tell us a bit more about your organization and how we can contact and support you.
Calm The Storm Within already has a website and a Facebook page. The best things you can do for us right now is to go to both of them, share them and our cause with your friends and family – complete strangers even. We are a very young organization yet and getting everything set up is a long process, particularly when we both work full time. Eventually we will have ways for you to support us beyond sharing our message with the world.
To learn more, visit us at: www.calmthestormwithin.org and ww.facebook.com/calmthestormwithin
Robert’s Sister: Thank you, Alex and Michelle, for sharing your passion for epilepsy education and awareness!
Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.” Check back tomorrow for our next story! If you’re interested in telling your own story about epilepsy, please contact me at email@example.com.