Something was pointed out to me this past weekend which I had yet to really notice; or if I did notice, it hadn’t really made much of an impact.
In nearly 8 years of my living with Epilepsy, my husband has never really spoken at length to anyone who walks in his shoes. His wife lives with a chronic neurological condition called Epilepsy and he is healthy. I know, call me selfish! But, for all these years, our focus-the two of us as parents-has been on making sure that our daughter isn’t affected by my illness, so I guess we sort of forgot to think about him…
It was Friday evening, and the Epilepsy Foundation of Michigan‘s regional conference, ‘Epilepsy Today, Wellness & Epilepsy’ kicked off at Rock Financial Showplace in Novi, Michigan. Andrew, Hayden and I had planned to attend and arrived during the mingling and networking time just prior to the keynote address. Hayden, 5, never has trouble mingling with people, no matter where we are. She jumped right in and spoke to nearly everyone, munching away on the healthy snacks. She spoke to the ladies manning the University of Michigan Epilepsy Program table, telling them what she does when Mommy has a seizure.
“I know how to dial my Daddy’s phone number and my Gaga’s phone number. And, I know how to stay with my Mommy until she wakes up from her seizure.” Of course, I gushed.
And, she talked to the great Detroit Medical Center team, stationed at their booth.
She picked up the Wayne State University Department of Neurology brochure. “This is my Mommy’s doctor,” She told them with a smile, pointing to Dr. Shah, pictured on the cover.
We listened, smiled and applauded as Mighty Mike Simmel entertained the audience of about 200 people. Hayden was eager to ask him her question after the show.
“Do you drive?” I had to laugh.
Then, following the show, we socialized with the bunches of people who were also attending the conference. I lost track of my husband as Hayden and I chatted with a woman and her mother. After about 20 minutes, Andrew walked up and tapped me on the shoulder. He looked wide-eyed and somewhat content.
“Never,” he began. “Never have I had a lengthy conversation with a man, a husband, like me…of a woman with epilepsy. I don’t think I’ve ever heard someone share similar experiences and concerns. It was fantastic,” he said.
I thought about this over and over again all weekend. My husband is my partner, my caregiver, we share parenting duties, he tolerates my venting when I succumb to the stigmas that people hold against those who live with chronic conditions. He smiles sweetly at me when I kick and scream (on rare occasions) because I can’t drive or I want to empty my pill bottles into the sump pump in the basement. He attends events and walks, helps raise money for various epilepsy causes, he has a direct line to my epileptologist, understands so much about the disease, but he’s never really held a long conversation with anyone who shares his situation.
It’s one thing for those of us with Epilepsy, whether we are parents or not, to swap stories and support each other; but is there enough support out there for those who care for and about us? Many times I feel as if I’m dragging him along, forcing him to live this life with me. He only knew me for less than a year as a ‘healthy person’, so in my mind, he could have abandoned the situation when he had the chance!
Still, he assured me that speaking with that gentleman on Friday evening was enlightening and encouraging. We always reiterate to each other that everyone’s experience with Epilepsy is very different, but for a few minutes, his was similar to my husband’s, and they were able to bond.
I’d like to find that man who chatted with my husband on Friday night…and give him a huge hug.
I just can’t help it. I don’t know if it’s the wimp in me, or maybe I’m just simply puzzled by the boldness? I heard a story this week…about someone who was diagnosed with Epilepsy several years ago, has recurring seizures, and continues to drive. In fact, he drove himself right into a major accident this past summer, flipping his car. He survived, thankfully, and he didn’t hit anyone on the road, nor was anyone in the car with him. But he’s just not ready to give up driving.
“I can feel them coming, usually,” he said to me when I questioned the safety of him getting behind the wheel again. And this guy has three children. Still, I’m not one to judge. He claims his world would ‘fall apart’ if he hangs up his keys. ‘There are worse drivers out there than me,’ he told me. That was the line that stuck in my mind.
I’m not a fool, trust me…I know first-hand how life can be such a drag when you can’t drive. There are days when I force myself to take pride in the fact that I have given up my car due to my illness, realizing the safety issues for me, those I love and everyone else on the road. But, many days, it irritates the hell out of me! I’ve spent more hours waiting to be picked up or dropped off, either by my husband, mother, babysitter or friends who help me out. I always use this line: “Oh, I don’t mind waiting…I have so much I can do from reading my book, to checking my email on my blackberry. So, don’t worry, I’m fine!”
Do you know how much ice cream has melted in my shopping bag while waiting for Andrew and Hayden to ‘run to the car wash’ while I do my grocery shopping on a Saturday morning? Then, the car wash trip turns into a trip to the bookstore and the hardware store…”We thought you could use the extra time!” They say when they pull up and get a glimpse of my scowl!
Those of us who live in cities with crummy public transportation (I do still love you, Detroit), are especially challenged. I think it might take me about 90 minutes if I want to travel downtown for a meeting or a trip to a museum. But, I just can’t seem to get the image of someone with epilepsy, defying the law. It’s downright hurtful to those of us who abide by the rules.
The fact of the matter is, every state has a law that applies to drivers who have seizures. It’s up to our doctors to make sure we are abiding those laws, but it’s also up to those of us who live with Epilepsy to adhere to them. I asked a simple question on Facebook, I wanted to get people’s opinion on driving when you have seizures. There’s quite a difference of opinions. (My thanks to everyone who wrote on the wall)
“If you have ANY uncontrolled seizures you have NO business behind a wheel of an automobile period, no more than a person who is visually impaired. Use public transportation unless or until the seizures are controlled.”
“Just because you have seizures, doesn’t mean you never drive again, that’s living in fear. Someone who has had a heart attack drives again once they are stable. Yet, once you have a heart attack, you are likely to have another. Should that person never drive again in fear of having a heat attack while they drive?”
Obviously, it’s up to you, but is it worth risking your life and the lives of those around you?
I’m a bit delayed, I know. It’s Day 4 of National Epilepsy Awareness Month and this is my first post in November. Geez…where does the time go?! I’m just emerging from my Halloween craze!
So here we are…National Epilepsy Awareness Month; 30 days in which we have a platform to push our message of hope, support and advocacy. We can hound the media for more attention and plead with lawmakers to pay attention to our cause. I admit, I have no definite plans for ‘a post a day’ or ‘an Epilepsy fact a day’. I’m frankly having a ball reading everything all of you write! It seems like in the last year, we’ve become quite a lively community! I’m keeping posted on the ‘Turn the White House Purple” drive. I am thrilled to see so many people talking about SUDEP. I love the ‘Get Seizure Smart’ quiz. I changed my email signature and continue to post the link on my Facebook page and several others.
Overall, I think the pushes and pleas have, so far, been positive. I’m one who believes there is real strength in numbers and in knowledge. The Epilepsy Foundation is hoping 1 million people will take the Seizure Smart Quiz so they can become more knowledgeable about seizures and seizure-safety. I think this is certainly achievable, if we all do our part. But, in addition to those who know nothing about Epilepsy, I think it’s important to unite as a community. There are so many more of us out there who may not want to come forward in support or advocacy. My goal in garnering support, is to ask those affected by Epilepsy who may never have reached out to any organization or support group, to join us and help make us stronger. You’re all pretty cool, but the more the merrier, right?
After all, there are 3 million of us in the United States, that’s NOT counting our family and caregivers. There are 50 million of us in the world.
I know a woman in my area (complete coincidence that I also have Epilepsy); she is a few years older than me and has lived with Epilepsy since childhood. She and her parents are adamant about not seeking support or pushing for advocacy. She sees a neurologist, but that’s the extent of it. I am forever taking information on the Epilepsy Foundation of Michigan and its programs (my local affiliate) to them, and asking for their participation or at the very least, support. But for them, Epilepsy is something that they choose to remain quiet about. It’s their world and they choose to address her seizures in their own way. This is the sort of behavior that I would love to change.
We can discuss and then shun the use of the word, ‘stigma’ as it relates to Epilepsy; we can yell and kick and scream that no celebrities (other than a few wonderful athletes and Greg Grunberg) come forward and reveal their Epilepsy; we can spot any and all poor references to Epilepsy in entertainment. But what are we if we aren’t a united community? Can we really accomplish what we need to achieve…support, hope and advocacy for those who live each day with Epilepsy? I think it’s a question worth asking this month.
It’s something you’ll see a lot during the next 3 weeks…make sure you click on the banner below and take the ‘Get Seizure Smart Quiz’!
It’s a blog post that’s received a ton of attention since it went viral on Tuesday. Writer Maura Kelly’s take on overweight people on TV, and frankly in life, was posted to her Marie Claire blog. As of this morning, the post has received thousands of comments and a story on the Today Show, among other things.
Kelly writes, “I think I’d be grossed out if I had to watch two characters with rolls and rolls of fat kissing each other … because I’d be grossed out if I had to watch them doing anything.” She’s referring to a popular new TV sitcom on CBS, “Mike and Molly”. Never mind that Kelly has a history of anorexia, she goes on to lend advice to overweight people. “I’m happy to give you some nutrition and fitness suggestions if you need them — but long story short, eat more fresh and unprocessed foods, read labels and avoid foods with any kind of processed sweetener in them whether it’s cane sugar or high fructose corn syrup, increase the amount of fiber you’re getting, get some kind of exercise for 30 minutes at least five times a week, and do everything you can to stand up more — even while using your computer — and walk more.”
You have to wonder how many other biases Kelly has, or how many she would endorse? The TV sitcom she references is really the one and only that centers on obese characters. The two met in an Overeaters Anonymous group, and the storyline delves into their dating life. But Kelly’s opinion aside, this post is an example of stigmas and how people tend to relate to imperfection.
So much of what we talk about when it comes to Epilepsy advocacy and awareness centers around erasing the stigma of living life with seizures. Collectively, we wonder over and over…why don’t we, as people who live with Epilepsy or care for someone living with Epilepsy, receive attention…attention we think we deserve? Call it what you want; paranoia, bias, ignorance, prejudice, misunderstanding…it all must fuel the need to make people more aware of this neurological condition. So often we pay more attention to the negative aspects of our world; Why don’t we have more celebrities in our corner to speak about Epilepsy? Why isn’t there more federal funding for research? Why doesn’t the White House turn purple next month? Perhaps if we remain positive and commit to teaching others about this, we’ll make more progress.
So often, I’m guilty of this. It irritates me when a school refuses to do a seizure safety course or when media refuses to do a story on Epilepsy awareness. But then I wake up and realize that there’s no progress if we remain bitter and negative. Unless I do my part to help shed the stigma and spread awareness, we won’t move forward. We all know the ugliness associated with Epilepsy, but we also can point to so many positives, like a wonderful Boston-area woman I spoke to yesterday who lives with her Epilepsy, cares for her family and is a marathon runner.
Is the blog post on Marie Claire wrong? It depends on how you look at it. Some might say it’s the writer’s push to make people more aware of obesity in America. Or perhaps she’s exercising her right to free speech…she’s truly grossed out by heavy people. But, as we approach Epilepsy Awareness Month, I believe we can all learn something from this. We can’t help erase the stigma that Epilepsy carries by pointing finger, accusing others and citing a lack of attention. It’s only making people more aware that there is indeed a stigma. Let’s fight to educate and tell positive stories. Who knows, maybe some day we’ll be watching a popular TV show that involves someone with Epilepsy. It’s a dream, but anything can happen!
The other morning, after the house ‘cleared out’ (in other words, Andrew left for the day and Hayden left for the morning), I walked upstairs to straighten up, make beds, etc. I noticed an empty toothpaste box in the trashcan in our bathroom. Panic took over. That night at dinner, I asked Andrew why in the world he opened a new tube of toothpaste and didn’t tell me we had to ‘re-stock’. “What if I hadn’t seen that empty box in the trash?” I asked him.
To which he replied, “You are kidding, right? We have 6 more tubes of toothpaste stashed in the linen closet. I don’t think we’ll run out of toothpaste until Hayden is in college!”
True. I have Epilepsy, therefore I stock up.
Call it a side effect of living with Epilepsy, or call it a behavioral disorder. I admit, I begin to lose it if we don’t have a 6 month supply of toilet paper in the house. A zillion things go through my mind if I notice we are getting below the 15-roll-mark in one of the bathrooms. What if I can’t get to the store for the next month? What if something goes horribly wrong with me and I end up in the hospital (again)…this time for months at a time? What if I have some disastrous seizure and I can’t remember what kind of toilet paper we like? There’s NO way my husband and 5-year-old would know how to find their way into a store to buy paper towel or toilet paper…let alone bars of soap or trash bags!! How about Hayden’s bubble bath, or her shampoo? And trust me, it’s not because I like to shop.
I know, insane. But it’s just one of those quirky little nuances of living life with this thing we call Epilepsy. I think the other reason why I stock up, is that the inability to drive makes me paranoid that I might run out of something…alone…and I can’t jump in the car and get to where I need to go. But toilet paper? Toothpaste? It’s sort of laughable, but a reality of my life. I think stores like Costco and Sam’s pump a certain gas into the air to attract people like me. You live with this chronic condition…make sure you buy 24 rolls of paper towel during your visit. And, have you seen our 18-pack of yogurt?
So, I can promise myself that I’ll try to avoid the seizure-triggers (sugar, stress, lack of sleep), but I’ll never, ever give up my need to stock-up. You show me a cure for Epilepsy and I’ll show you a girl who is OK with only 6 rolls of TP in her vanity!
So, it’s been an absolutely crazy couple of weeks. Andrew is always, always begging me to limit my stress and how much I take on, but I think this week put me over the top! Simply put, it was self-induced.
I planned this super cute (at least to me it was super cute–not sure what everyone else thought of it!) birthday party for Hayden’s 5th birthday at the cider mill. You see, Michigan is known for its cider mills, and since moving back ‘home’ 3 1/2 years ago, I can’t get enough of them and I’ve taught my daughter to appreciate the gooey, warm, fried donuts and the tangy cider, as much as I do!
Her actual birthday was on Tuesday, October 12th, and on Wednesday the 13th, we had 21 little 4 and 5 year-olds, and parents, for a two-hour party at Yates Cider Mill. What a blast! The birthday week included burgers one night with my Mom (Hayden’s choice for a birthday dinner with Gaga), Chinese food with Daddy and Mommy on Friday night (you’ve never seen a child slurp down Won Ton soup like mine can!), pizza and ice cream after the last soccer game with her two best buddies on Monday, and finally…yesterday, her 5-year-checkup. That’s where I pretty much stepped over the edge.
For whatever reason, my child is absolutely petrified of shots. I know so many kids have these fears, but I can never figure out why a child who has endured her mother’s 5 brain surgeries, has actually helped my neurosurgeon peel the bandages off of my bald head…why does she freak out when she’s getting her flu shot, not to mention hyper-ventilating when she gets her finger pricked for the hemoglobin test? This is a little girl who knows seizure safety better than probably 95% of the world. She has ‘a special pillow’ that she puts under Mommy’s head when I have a bad one and can dial my husband and my mother, if need be. But, when she sees that little plastic bin of shot paraphernalia, she freaks out. Yesterday was no exception.
We made it through the exam in perfect form. She told our pediatrician everything she wanted to know…her favorite foods, how she’s doing in school, the fact that she and Daddy are working on the no-training-wheels thing, her love for skiing. And then, the nurse walked in with THE BIN and all hell broke loose. I seriously think you could hear her screaming all the way to Indiana. I hugged her, all 46 pounds of her, and tried to calm her down. She jumped off of the table and crumpled up into a little ball on the ground–just in her underpants and the paper gown–screaming, “get the shots away from me…get me out of here!!” That’s when I picked her up and tried to get her back on the table, and she kicked me in the stomach–then, it happened. Sight in my left eye went black, my head spun, my hearing went…and I couldn’t remember her name. Oh…and I pretty much fell on top of her, which made her even more upset. I vaguely heard the nurse articulate ‘a plan’–to just stick her in the thigh while I was seizing on top of my 5-year-old shrieking daughter. Of course, I don’t think the nurse knew what was going on…but someone in the hall got it (probably our pediatrician who knows of my Epilepsy), and sent my Mom in, who was reading a magazine in the waiting room.
“Why didn’t you ask me to come in earlier?” my Mom asked, as she held Hayden and tried to calm her down, post shots. Hayden was telling her, through her gasps and tears, about the trauma she had just endured.
Good plan, huh? I guess I was so determined to make it through this on my own–as a ‘normal’ Mom…one who doesn’t have seizures, or at least doesn’t let seizures rule her life. I think I know now that I should never look a gift horse in the mouth…or in this case, a way to prevent a seizure.
I’ve mentioned this before, but I’m not ashamed to say it again…I love prime time TV! Seriously, fall is not only my favorite time of year because of the gorgeous colors, the cider and donuts, the pumpkins and Halloween. It’s also the start of the new TV season, and I am an addict! Maybe it’s because of my former TV life?! I strategically plan my day to make sure I can catch my select shows on the nights they air. (You’re probably thinking right now…what a terrible example she sets for her daughter!!)
Anyhow, one of my favorite shows is “Parenthood”, which airs on Tuesday nights on NBC. The characters are diverse, the stories are impeccable and I’m so fond of how they tackle some pretty tough issues. If you watch, you are probably familiar with Christina and Adam’s son, Max. He lives with Asperger Syndrome, which is described by some doctors as “high-functioning autism.” It is a very real condition that can have a significant impact on affected families, like the fictional Bravermans of “Parenthood.”
In Tuesday’s episode, Adam came to the realization that Max doesn’t know he has Asperger’s, and as he said to a group of parents gathered in a circle for a support group meeting, he dreads the day he must tell Max about his condition. How will he explain it? What will he call it…A condition? A disease? A disorder?
I began to think…does the same hold true for children who are diagnosed with Epilepsy at a very, very young age? When exactly do you tell a child about his or her condition and everything that comes along with it? Granted he knows when he’s not feeling well, but as a young child, can he understand what it is that’s making him sick? I know all of you who are parents of children with Epilepsy can pass along many stories of how you eased your child into this life of understanding his or her Epilepsy.
As a parent with Epilepsy, who has a healthy child, I didn’t hesitate. My thought was, she was ‘born into’ this life, so to speak. It won’t do me any good to hide any of this from her. I’m sure there are some who would disagree with my approach, but for us…it has worked.
When I was diagnosed, it was devastating, at least at first. I had NO idea what Epilepsy was, nor did I understand anything about seizures. It was a total learning experience for me, my then-fiance/now husband and my Mom, not to mention the friends that stuck with me. It seemed that with every seizure came knowledge.
Lots and lots of resources are available from the Epilepsy Foundation of America. Also, you can contact your local affiliate for help and guidance in talking to your kids about their Epilepsy. There are some very good books that over the years, I’ve had doctors recommend to me. “Mommy, I Feel Funny, A Child’s Experience with Epilepsy” is one of my favorites. It’s even helped me explain to my 5-year-old daughter who doesn’t have Epilepsy, what exactly it feels like to have a seizure and how it affects her Mom.
It’s a very tough subject, and I know we all have different methods of tackling it when it comes to our family. Watching a program like “Parenthood”, although fictional, is eye-opening and somewhat helpful. I respect and admire NBC for tackling Asperger’s. And I know I’ll keep watching!
For information on Asperger Syndrome, click here: http://www.aspergersyndrome.org/Home.aspx
OK, I must confess. I dread open houses and any sort of large meetings at Hayden’s school. My sincere apologies if this offends anyone who might be associated with my child’s life at school, but I have to come clean. And, it has absolutely nothing to do with Hayden, or the school. It’s all about me, and my Epilepsy.
Hayden attends a remarkable school in suburban Detroit. It’s been sort of a secret dream of mine to give her the chance to go to the same school that I graduated from, back when Ronald Reagan was in the White House we were all boogying to Madonna and going gaga over the movie, Dirty Dancing. I feel as if I have thus far, and will continue, to put my daughter through many hardships, since she lives this life of Epilepsy with me. Many of my fellow alumni also have children attending the school. And, I’ve been thrilled, to say the least…until I realized something the other night.
It’s heart-wrenching and completely uncomfortable to be somewhere, in a group of people, and so many of them look familiar, but you just can’t seem to remember how or why. And, it’s even worse when a person approaches you and greets you, but you can’t remember a thing about that person; how you know him, how long you’ve known him…or your connection to him. And, it gets pretty obnoxious when you’re sitting in a room full of people and you’re trying to discreetly text your closest friend from high school (who is sitting at home), describing the ‘mysterious’ person, hoping she will realize who you are talking about and give you a quick reminder. This is when I truly hate my Epilepsy, and I’m the first to admit it.
I have read countless pieces about tackling memory loss. Heck, I’ve written about it here on this blog. I like to think that I do everything right; I carry a little notebook in my purse, I carefully log everything; every date, number, event, important information, in my smartphone. And yes, I get enough sleep. But, there’s no sure way to help with so many aspects of memory loss. Sometimes I think I should just wear a t-shirt that says, “I have Epilepsy and my memory stinks, so please…when you approach me, remind me how I know you!” I think they’d get the message.
I do have some allies in all of this. My Mom is a good resource for digging into my past. I have some friends from different eras of my life…high school, college, careers, life in Maryland…who I can turn to. If I’ve done it once, I’ve done it a thousand times with two of my friends who live there, “Who is so-and-so and how do I know her?” And, my husband has a memory like a steel trap, so he’s the one I look to more often than anyone.
The reasons for memory loss are there. It can be anything from side effects from the medications to lack of sleep to stress to just plain damage to the brain. And really, there is no great solution for the suffering, at least from my standpoint; I guess I can just hope for honesty with those I encounter and hopefully some understanding (I’ll keep my fingers crossed).
I love movies. And, I should add…I’m lucky that sitting in a movie theater and watching a movie, however loud or abrupt the action, does not trigger seizures for me. I love most every type of movie, whether it’s based on a true story or a complete fantasy. I love comedies and so-called ‘chick-flicks’. I love crime dramas and historic films.
I love the stories, the characters, the messages, the atmosphere of a movie theater, not to mention the buttery and all-too-fattening popcorn! I can always lose myself in the movie plot, and for that two-hour block, I seem to forget about everything negative in my life. I can put the complexities of my world on hold for just a while, and soak in the plot-line of the movie.
Tuesday night, the three of us attended a preview of Secretariat, the new Disney movie based on the true story of the 1973 Triple Crown winning racehorse. Not only was the movie wonderful, the messages were superb. I was just 4-years-old when Secretariat captured the attention of the world, and I didn’t have Epilepsy back then. I can vaguely recall the excitement he created, even for those who were not really horse racing fans. But, like so many people, I never knew much about the background of the horse and its owner.
Secretariat, all 1200 pounds of him, was owned by a very sharp and determined woman, who inherited her father’s horse farm. She was gritty and resolute, and she was committed to that horse from the moment she witnessed his birth. I won’t go into each detail of the story. I’ll let you see the movie so you can re-live it (or learn about the story if you were born after 1973). But the messages were so defined and have stuck with me.
Penny Chenery, Secretariat’s owner, took chances and she believed in her risks. She made sure she put confident and capable people on ‘her team’, the team that would eventually lead her and her horse to the Triple Crown win. She defied the odds and listened to what doubters had to say, but she didn’t let their negative thoughts and opinions bring her down. She had so much vision and poise, I was captivated. So, you’re probably asking what in the world this has to do with living with Epilepsy? Well..simply put…a lot. For me, discouragement and negativity are inherent when it comes to living with a chronic condition. There…I said it! We speak so much about how depression is related to Epilepsy, but how often to we do things to tackle the negative aspects of living with it?
If you’re like me, it takes inspirational stories to motivate us and to keep us going. There are so many times when I would like to just give up…crawl into my bed and hibernate under the covers for a few days, whether it’s after a day of seizures or some negative reaction from others about my Epilepsy. You don’t have to admire someone because she paid for the training of a champion horse…she did everything she could do to save her family’s farm and her father’s legacy. I admire her determination and her ability to defy the odds. So yes, I think this movie has a lot to do with living with Epilepsy!
It’s one of my favorite evenings…the Epilepsy Foundation of Michigan‘s Flame of Hope Awards. My family and I attended the event on Thursday evening, and as I expected, it was just as moving and inspirational as I expected it to be.
For me, the night is about about catching up with friends (in more than 3 years back ‘home’ in Detroit, I’ve made some very deep friendships in this Epilepsy community) and connecting with some of the amazing volunteers, donors, families of kids with Epilepsy, EF of M staff-members. But more than anything, hearing the stories and the efforts of the award-winners is awe-inspiring. I was so moved, and I continue to think of everyone I spoke to that evening.
We sat at the table with ‘Winning Kids’ award-winner Brittney Taylor and her family. Her mom asked me question after question about living life with a VNS since it’s something they are considering for Brittney. Brittney is sweet, energetic, courageous and very understanding of her life with Epilepsy.
I listened to some of the other kids…winners of various awards…speak on how grateful they were for the recognition and the opportunities they’ve been given. Many of them are campers at Camp Discovery, the Epilepsy Foundation of Michigan’s summertime camp for kids with Epilepsy.
I listened to Jeff Wilson, a staunch supporter of the Epilepsy Foundation of Michigan and its programs, speak about why he puts forth so much effort in raising funds and awareness. He lost his 19-year-old daughter Gen in June 2007, to a fatal seizure, and it seems he will never give up hope that someday, we might have a cure for this thing called Epilepsy.
I was particularly moved by Todd Hohauser, the chair of the board of directors, who spoke of the wonderful programs and events that so many of us participate in. Todd brought up something that I’ve yet to realize until that night. What does the red flame of the Epilepsy Foundation stand for? In doing a bit of research, I discovered that the red flame signifies the Foundation’s mission of working for change so that people with seizures are able to participate in all life experiences. But really, can’t we all identify and define the red flame with our own meaning?
For me, the red flame is hope; it’s the forever-burning light that means there will someday be a cure. It stands for never giving up, for making sure others understand and recognize what Epilepsy is and what it can do to lives. The flame also means survival and perseverance; even in my darkest and most seizure-filled days, I still must push myself to fight this and to raise awareness. The flame inspires me and assures me that I can live with Epilepsy. If you look closely, you’ll see that the flame has three parts, and that’s incredibly significant to me since Epilepsy truly affects three people in my life; me, my husband and my almost-5-year-old daughter, Hayden.
I hope everyone gets the opportunity to recognize those who make such an impact on Epilepsy awareness…and if you get the chance, look closely at that flame. What does it mean to you?