Robert’s Sister: When was your loved one first diagnosed? Tell us about the process of getting the diagnosis.
Michelle was first diagnosed in 1999, well before we had even met, so apart from what she’s told me about the process of getting her diagnosis, I know very little. We met in the winter/spring of 2008, and she first told me about her epilepsy in June or July of 2009. The day she first told me we had gone out to dinner on the lakeshore. She didn’t have a drop attack, but the combination of an unusually strong margarita and her epilepsy put a quick end to what was usually a very long evening for both of us.
Robert’s Sister: How did you feel when Michelle was first diagnosed with epilepsy?
Understandably, seeing her that way scared me. The way she revealed it was actually very casual but as she’d tell you, I was extremely protective of her until I dropped her off again. As a person who, like most, knew very little about what epilepsy actually looks like, to not physically see her having a seizure was confusing to me. I have another friend who also has epilepsy as a part of a larger condition, but he has Grand Mal seizures and has never had one around me, so while I was aware of epilepsy as a condition, I only had what I knew of his seizures to go on as to what a seizure looks like. I had no idea they could appear to be harmless until I met Michelle.
Robert’s Sister: Did your family treat Michelle differently after the diagnosis? If so, how?
I don’t necessarily know if MY family has treated her any differently since I’ve told them about her epilepsy. I’ve always made a point to treat her as if she doesn’t have epilepsy. Having that revealed to me later on in our relationship, after we had grown much closer as friends, has always made that easier because I had a good basis for the person I know she is. I do feel like learning to live with her epilepsy as it progresses and changes has brought us closer together though.
Robert’s Sister: Did the kids at school treat Michelle differently because they had epilepsy?
For the few classes we did have together; I know they didn’t treat her any differently in college. Before then, I can’t really speak to, but I know you interviewed her too so I’ll let her answer that. [Editor’s note: Michelle does answer this question so check out the interview yesterday for her answer.]
Robert’s Sister: What treatments has Michelle tried? What has worked? What hasn’t worked?
Since I’ve known her, she’s been inactive and off of any medications, so that’s another thing she knows more about than I do. For a while she had very little to control her seizure activity but in the last couple years, her tremors and other little subtle things that would tell you something isn’t quite right have become more pronounced. She switched over to the Ketogenic Diet and it has made a huge difference. I really notice a difference between when she’s off the diet and when she’s on the diet. There are a lot of little things that strangers don’t notice but I pay particular attention to.
Robert’s Sister: Do you think the medications affect how Michelle feels?
I know they have. She’s off of them now but because she was on them through the majority of her teens, a lot of her ability to express how and what she’s feeling effectively is really hampered. I’ve seen a lot of healing and progress along those same lines though in the short time I’ve known the extent of her story. The aftermath of her medications is something we spend a great deal of time coping and learning to live with.
Robert’s Sister: Have you done any advocacy work (individually or with an organization)? What made you want to be involved?
I hadn’t until Michelle came to me with this idea in late 2011. I’ve always been one to tell her that she’s never had a truly “crazy” idea and this was no exception. She called me kind of hoping that I would tell her she was crazy for thinking it, but that’s not my style. What made me want to get involved in helping Michelle co-found Calm The Storm Within was passion in her voice when she talked about it.
Robert’s Sister: How has epilepsy affected your life?
We deal with her epilepsy on a daily basis and it’s an eye-opening experience. I’ve learned to pay more attention to her body language and the look in her eye than to the words that are coming out of her mouth at times. It’s taught me to be way more patient with most people. It’s certainly taught me the importance of prayer and patience. I pray every day that we’ll continue to have patience with ourselves and each other as we learn to deal with what today has brought us. Every day is a brand new experience.
Robert’s Sister: What is your favorite memory of Michelle?
I try not to focus on which one is my “favorite” because I still have the gift of being able to create new memories with her. She would be the first to tell you that I’m a hopeless romantic at heart and she’s right. Every day I get reminded of how much she means to me.
Robert’s Sister: Do you ever wish Michelle didn’t have epilepsy?
Every day but it’s a very pragmatic wish. I wish she didn’t have it but the reality is that she does and we both have to live with that. I don’t love her any less because of her epilepsy and that won’t ever change. I know that there are many people out there who aren’t as fortunate as I am to have a loved one whose epilepsy hasn’t crippled their ability to lead a normal life. So rather than wish the situation was different I choose to live in hope that she will continue to be blessed with the ability to live a largely normal life.
Robert’s Sister: What do you want people to know about epilepsy?
People with epilepsy are not their disease. It does not define their life, and it shouldn’t color your opinion of them.
Robert’s Sister: Is there anything else you want to say?
In order to cure a disease, it takes three things; education, understanding, and effective funding. We need to educate the public about the reality of the scope of epilepsy, then we need to focus on funding understanding the causes so that we can more effectively and efficiently treat patients, as well as ensure that no one has to suffer the burden of mystery that Michelle has. Everyone who has a medical condition should at the very least be afforded the courtesy of being able to understand why this has happened to them.
Robert’s Sister: Please tell us how we can contact any organizations you support or if you have a website or business.
Michelle and I have co-founded a non-profit called Calm The Storm Within. Through it we hope to fund grants focused on understanding the root causes of epilepsy. We have both a website and a Facebook page. Our website is www.calmthestormwithin.org and our Facebook is at www.facebook.com/calmthestormwithin.
Robert’s Sister: Thank you, Alex, for sharing your epilepsy story!
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 firstname.lastname@example.org.