Miguel and Kelly Cervantes Named 2017 Chicagoans of the Year

Miguel Cervantes admits he was distracted while auditioning for the title role in the Chicago production of Hamilton. It was May 2016, and his 7-month-old daughter, Adelaide, had just been diagnosed with epilepsy. On the day of Cervantes’s third callback in New York City, Adelaide was getting a spinal tap to try to figure out the cause. “A friend of mine happened to be outside the studio after the audition,” Cervantes remembers. “I was talking to him and put my head in my hands and got a little emotional, and he was like, ‘Hey, man, I’m sure you did great.’ And I was like, ‘Dude, thanks, but I don’t care about Hamilton that much.’?”

The news got worse a couple of months later, when doctors discovered that Adelaide had what’s known as infantile spasms, a particularly devastating form of epilepsy that can lead to severe developmental and cognitive delays. Says her mother, Kelly: “You go to the hospital and find out you have cancer, and it’s, ‘Here’s the treatment.’ You get an epilepsy diagnosis, and you hear, ‘I’m sorry, there’s no cure. Let’s start throwing darts at a board to see which drugs might help.’?”

Miguel landed the part and moved his family to Chicago, where he and Kelly connected with Citizens United for Research in Epilepsy to see how they could help others in their situation. Founded by Susan Axelrod, wife of political pundit David Axelrod, nearly 20 years ago, CURE is the nation’s largest nongovernmental organization funding epilepsy research.

The Cervanteses have since become a driving force in CURE (Kelly, a former events planner, serves on its board), as well as its new face (Miguel appeared in a CURE commercial). Miguel has put to use the platform his Hamilton role has afforded him. In April, he and members of the cast performed at a CURE gala, helping to raise $2 million. That same day, he released “?’Til the Calm Comes,” a song he wrote about Adelaide, with all proceeds going to CURE. Now Miguel is helping relaunch the My Shot at Epilepsy social media campaign. (Think the Ice Bucket Challenge, but instead of being doused with cold water, participants strike the familiar Hamilton pose—left arm shooting up the sky—to encourage donations.) “The endgame,” says Miguel, “is to put epilepsy in the same conversation as Parkinson’s and Alzheimer’s and ALS.”

‘Hamilton’ Star Begins ‘My Shot at Epilepsy’ to Raise Awareness, Funds

As reported by Chicago Tonight:

Inspired by the song “My Shot” from the musical “Hamilton,” actor Miguel Cervantes, who stars as the title character in the blockbuster’s Chicago production, is challenging the public to take their “shot” and help raise awareness and funds to find a cure for epilepsy.

“A year and a half ago, I knew very little about epilepsy and I was preparing to take on the largest role of my life,” Cervantes said in a YouTube video announcing the campaign. “Two months before opening night my daughter Adelaide was diagnosed with a rare, incurable form of epilepsy known as infantile spasms.”

Epilepsy is a group of neurological disorders of varying types and severities, which are characterized by recurrent seizures. More than 3.4 million Americans – 470,000 of them children – have epilepsy, according to the Citizens United for Research in Epilepsy.

Only 2,500 children are diagnosed with infantile spasms in the U.S. each year, according to the Child Neurology Foundation. The disorder is so uncommon that most pediatricians will only see one to two cases during their careers.

“It breaks my heart when I look into my daughter’s eyes and know there is not yet a cure that can help her,” Cervantes said in a news release. “That’s why I’m inviting everyone to join me in this National Epilepsy Awareness Month in a vital campaign to help raise awareness and funds for a cure.”

Through the “My Shot at Epilepsy Challenge,” participants are asked to take a photo or video of themselves striking the “My Shot” pose (arm raised in the air, with the index finger pointing up), make a donation online and share their “shots” on social media using the hashtag #MyShotAtEpilepsy and challenging three friends to join the cause and donate within 24 hours.

Proceeds from the campaign created by Cervantes and his wife Kelly, a CURE board member, will directly fund epilepsy research.

“The ‘My Shot at Epilepsy Challenge’ is a great opportunity to raise awareness and promote understanding,” said CURE CEO Kate Carr in a news release. “Many, whose lives are not touched, do not understand the severity and impact of this disease. We hope that this campaign will bring attention and funds to this cause and help advance the search for answers that can transform and save lives.”

Epilepsy is personal for ‘Hamilton’ star

As reported by CNN:

Miguel Cervantes and his wife, Kelly, welcomed daughter Adelaide in October 2015. They sensed that something was amiss early on.

“She wasn’t developing on a regular trajectory,” said Cervantes, who stars as Alexander Hamilton in the hit musical theater production “Hamilton” in Chicago. Soon after, Adelaide had a seizure.

“Then the terminology ‘epilepsy’ starts coming into the conversation about what’s wrong with her,” he said.

Actor Miguel Cervantes with his daughter, Adelaide, who has epilepsy. Actor Miguel Cervantes with his daughter, Adelaide, who has epilepsy.

When she was just 7 months old, Adelaide started having multiples seizures every day. She was diagnosed with infantile spasms, a serious epilepsy syndrome in infants that is frequently associated with developmental delays, according to the national nonprofit Epilepsy Foundation.

“The doctor said that ‘we don’t have any real treatment for this. We have some treatments that may or may not work, but there is no cure,’ ” he recalled.

While Cervantes was struggling with Adelaide’s care, he landed the lead role in the play. “It is the highest highs and the lowest lows all at the same time,” he said.

Take the challenge

Epilepsy is a disorder in the brain that causes seizures. According to the US Centers for Disease Control and Prevention, the cause is not always known but can be the result of a head injury, a brain tumor, a stroke or an infection in the central nervous system.

Motivated by his personal connection, Cervantes teamed up with Citizens United for Research in Epilepsy, commonly known as CURE, and the Epilepsy Foundation to raise awareness and funding for research during November’s Epilepsy Awareness Month.

Miguel Cervantes, star of the Chicago production of "Hamilton," says he was inspired by the show to get involved in epilepsy awareness. Miguel Cervantes, star of the Chicago production of “Hamilton,” says he was inspired by the show to get involved in epilepsy awareness.

Cervantes created the My Shot at Epilepsy Challenge, which urges people to take pictures in the “Hamilton pose” and donate to epilepsy research. They can share the pictures on social media, tagging friends using the hashtags #MyShotAtEpilepsy and #CUREepilepsy and challenging them to participate within 24 hours.

His aim, he said, is to get epilepsy into the mainstream conversation alongside other severe neurological disorders like Parkinson’s, amyotropic lateral sclerosis and Alzheimer’s.

“That is our goal and hope. We are here to help my daughter and to help other families that are also dealing with this kind of thing too,” he said.

Adelaide is 2 years old, but she functions much more like a newborn, Cervantes said. “She doesn’t sit or stand or talk or babble. We are always watching her to see if there is a seizure. We are always looking at her to see if there is any sign of regression,” he said.

“We have our bars very low for progress right now. Our hope is that if we can keep all the seizures under control, then any progress her brain can make due to whatever it is will begin to see itself,” he added.

Research gap

Epilepsy is the fourth most common neurological disease in the United States, according to the foundation. The CDC reports that in 2015, 3.4 million people were receiving treatment for epilepsy or had had one or more seizures in the past year.

Susan Axelrod, along with other parents of children with epilepsy, founded the nonprofit CURE in 1998 to address a lack of advocacy toward scientific research for the disease. “We looked to the National Institutes of Health and found that the budget there, was sadly, sort of reflected our lack of progress in the area,” she said. “We also looked to the private funders, and there was very little going on, very little interest amongst private donors.”

Axelrod too has a personal connection. Her daughter, now 36, started having seizures when she was 7 months old. “We spent the first 18 years of her life fighting the lack of understanding about the epilepsy disease, the stigma associated with it and most importantly our inability to stop her seizures, even if we were willing to tolerate pretty atrocious side effects from the medications,” she said.

Dr. Ajay Gupta, head of pediatric epilepsy at the Cleveland Clinic, said all epileptic medications have side effects and must be carefully monitored. “That’s why it’s really important when you make a diagnosis to have a very good discussion with the family,” he said. Side effects can include sleepiness, reduced muscle tone, tunnel vision and reduced sharpness of vision, he said adding that they can be irreversible.

Axelrod said that although her daughter has made tremendous strides, she will not be able to live independently and takes multiple medications every day.

“The diseases in which you see progress have strong strong advocacy groups behind them. Epilepsy did not,” she said.

“The awareness component is essential to making progress, to raising the dollars, building a community that will be great ambassadors, will be the people who participate in clinical trials when we get to that point,” Axelrod added.

And Cervantes is trying to do just that. “I can use Hamilton to get the message out that says this is something that needs to be more in the mainstream, more in the forefront and really talked about to see if we can get some better treatment so that people aren’t constantly on guard for, you know, seizures to come back because that seems like a terrifying way to live,” he said.

November is National Epilepsy Awareness Month

More than 3.4 Million Americans, 470,000 children, Affected by the Disease

‘My Shot at Epilepsy Challenge’ to Raise Awareness for Epilepsy Research 

CHICAGO, IL – Citizens United for Research in Epilepsy (CURE) and the Epilepsy Foundation are joining forces with a power player in the Broadway community this November to raise critically-needed funding for epilepsy research. Officially launching November 1 for National Epilepsy Awareness Month, the “My Shot at Epilepsy Challenge” is an awareness and fundraising campaign inspired by the song “My Shot” from the hit musical HAMILTON. Created by Miguel Cervantes—star of the Chicago production—and his wife Kelly, a CURE board member, the My Shot at Epilepsy Challenge proceeds will directly fund epilepsy research.

Miguel and Kelly are driven to fight for a cure because of a deeply moving personal connection to the cause. Their daughter Adelaide suffers from a severe and incurable form of epilepsy known as infantile spasms, the cause of which remains unknown.

“It breaks my heart when I look into my daughter’s eyes and know there is not yet a cure that can help her,” says performer and activist Miguel Cervantes. “That’s why I’m inviting everyone to join me this National Epilepsy Awareness Month in a vital campaign to help raise awareness and funds for a cure.”

Through the “My Shot at Epilepsy Challenge”, Miguel is urging the public to follow three steps:

  1. Take Your Shot– Take a still photo or video striking the “My Shot pose” (arm raised in the air, with index finger pointing up)
  2. Donate– Make a donation at MyShotAtEpilepsy.org
  3. Share– Post “shots” on social media, using the hashtag #MyShotAtEpilepsy, tag friends and challenge them to participate and donate within 24 hours

“Millions of Americans are living with epilepsy,” says Susan Axelrod, Founding Chair of CURE. “This places an immense burden on these individuals, their families and society as a whole. The need to advance research efforts in this field is urgent and long overdue. We are so grateful to the Cervantes family for sharing their family’s story to help all who struggle.”

Epilepsy is a disease with a wide spectrum of severity. More than 3.4 million Americans, 470,000 of them children, have epilepsy. For some, it has minimal impact on daily life, but for more than a million patients, many with seizures that cannot be controlled with existing treatments, epilepsy can have significant lifelong impact on the ability to live independently and even on life expectancy. Epilepsy impacts 43% more people than Parkinson’s, Multiple Sclerosis, Muscular Dystrophy, and Cerebral Palsy combined. Yet NIH funding is 60% less than funding for these other neurological diseases combined.

“This is an exciting time where advances in scientific research appear more promising. The ‘My Shot at Epilepsy Challenge’ is a great opportunity to raise awareness and promote understanding,” says Kate Carr, CEO of CURE. “Many, whose lives are not touched, do not understand the severity and impact of this disease. We hope that this campaign will help bring attention and funds to this cause and help advance the search for answers that can transform and save lives.”

“Seizures in approximately one-third of individuals with epilepsy continue to be uncontrolled today – with no significant difference in patient outcomes in over 50 years,” says Philip Gattone, President and CEO of the Epilepsy Foundation.  “That means, every year, millions of individuals and families suffer devastating impact, including the immeasurable pain of thousands of lives lost. Through the ‘My Shot at Epilepsy Challenge’, Miguel and Kelly Cervantes courageously offer new hope and inspiration that by coming together, we will discover new therapies and research that will end epilepsy once and for all.”

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About CURE — Citizens United for Research in Epilepsy (CURE) is the leading nongovernmental agency fully committed to funding research in epilepsy. It was founded by Susan Axelrod and a small group of parents of children with epilepsy who were frustrated with their inability to protect their children from seizures and the side effects of medications. CURE is dedicated to the goal of “No seizures. No side effects. End epilepsy.” CURE works relentlessly to find a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease. CURE has the distinction of being a 4-star charity on Charity Navigator, the highest award, recognizing sound fiscal management and commitment to accountability and transparency. For more information on CURE, please visit www.cureepilepsy.org

About the Epilepsy Foundation — The Epilepsy Foundation, a national non-profit with over 50 local organizations throughout the U.S., has led the fight against seizures since 1968. The Foundation is an unwavering ally for individuals and families impacted by epilepsy and seizures. The mission of the Epilepsy Foundation is: to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. The Foundation works to ensure that people with seizures have the opportunity to live their lives to their fullest potential. For additional information, please visit epilepsy.com. The Epilepsy Foundation’s SUDEP Institute works to prevent Sudden Unexpected Death in Epilepsy (SUDEP) and support people confronting the fear and loss caused by SUDEP. (www.epilepsy.com)

‘Hamilton’ star praises Chicago support as daughter struggles with epilepsy

Miguel Cervantes, star of Chicago’s production of “Hamilton,” tearfully opens up about his young daughter’s epilepsy on Wednesday’s episode of “Rachael Ray.”

Adelaide was diagnosed with epilepsy after she began having seizures at seven months old. Cervantes and his wife Kelly, who appear on Ray’s daytime show via Skype, discuss their work with CURE, an epilepsy research organization founded by Susan Axelrod, who is married to David Axelrod, former adviser to President Barack Obama; and the support they’ve received since they moved to Chicago.

“Moving from New York at the time that we did, we were in a pretty tough spot with (Adelaide). Being able to come here and set up our family here and the medical care here has been just unbelievable, and the community has been great. My family in ‘Hamilton,’ they have been nothing but supportive,” Cervantes said.

“People after the show are always asking me, ‘How’s your daughter, how is she doing?’ So, it just feels like this is the right place for us, this is the right place for my family. It’s a hard journey with her, but being somewhere like this, it feels like this is going to help us to move forward.”

Ray surprises the couple with a $10,000 donation to CURE from Happy Family Organics, an organic baby food company. “Rachael Ray” airs at 10 a.m. weekdays on WGN-Ch. 9.

The Stigma of Epilepsy

Reprinted with permission from Voices from the Heart: Lifting the Veil on Epilepsy, compiled by Louis Stanislaw, with a foreword by Susan Axelrod.

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I come from a family of epileptics. My father had it when he was younger, my two older sisters had it, followed by me and my younger brother.

My oldest sister, Paula, was the first of my siblings to exhibit signs of epilepsy. She first took a seizure when she was 2 or 3 years old while walking alongside my mother. This was in the late 1970’s and my mother had never been exposed to it so she did not know what was happening. She brought Paula to the hospital and my father soon arrived too. The doctors were asking my parents all sorts of questions about their medical history and specifically about whether epilepsy ran in the family. Both denied ever having it. It all only started to make sense when my paternal grandmother showed up and very casually told my mother not to worry, as my father had had it when he was younger.

My father was too embarrassed to say he had a history of epilepsy. Having grown up in Ireland in the 1950’s, he had experienced first-hand the stigma of epilepsy. His father, my grandfather, always told him never to talk about it. To this day he still doesn’t.

Times have changed since then and people are more aware of epilepsy, but to say that the stigma is gone would be a lie. I suffered with epilepsy until I was 7, and although I was never embarrassed to say that I had a history of it, I did feel that I was on the lower end of the scale when it came to the illness. There was a girl who lived around the corner from me growing up and she suffered from a severe form of epilepsy—so severe that she had to have surgery as medication could not control it, or so the neighbors said. She would lose her temper a lot and get into trouble with the police and people would make fun of her because of it. At the time, my view, as someone who also suffered from epilepsy, was that I thought she was unhinged. Everyone else thought so too, and that it was because she was epileptic. And I thought it too. But that didn’t apply to me, I thought, because I was on the lower end of the scale. So not only was she being judged by people who had no exposure to the illness, she was being judged by people who HAD the illness.

I had a mixed form of epilepsy. I had the typical epileptic seizures at first but then it got milder and it would manifest itself in other ways, such as staring, eyes rolling, and falling down. It became so frequent that my mother made me wear a helmet when I was outside playing. We lived on the top floor of an apartment block and she was afraid that I would fall down the stairs because of it. Another misunderstanding about epilepsy is that anyone who suffers from it has full-on seizures. From speaking with people I knew over the years about my epilepsy, I found that the majority of them were surprised to hear that having epilepsy doesn’t necessarily mean that you’re going to collapse and go into a full-on seizure.

Epilepsy is such a common illness, yet I personally don’t know many people who suffer from it, or better yet are willing to talk about it. There is still a stigma, even in these times, over 50 years on from when my father was growing up.

Our Rollercoaster Ride, by Cheryl Fyock

Reprinted with permission from Voices from the Heart: Lifting the Veil on Epilepsy, compiled by Louis Stanislaw, with a foreword by Susan Axelrod.

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Athough ours is not a story of epilepsy, seizures have now been added to the long list of challenges in our daughter’s world. As a mother of a child with “complex medical issues” I often wish it were me, and not my daughter, who would have to deal with the everyday difficulties that life brings her way. It just doesn’t seem right that a child, now only 11, should have to endure these challenges, and yet she does it with such grace.

My daughter was born with a muscular myopathy that impacted her heart. She went into heart failure at four weeks of age, but a cocktail of medications allowed her heart to strengthen and stabilize. She quickly demonstrated her fighting spirit, amazing her doctors as she pushed through her myopathy, continually getting stronger. As a toddler she fought to eat, crawl and ultimately walk, always persevering through countless hours of doctor appointments and therapies.

Unfortunately her heart couldn’t keep up with her body however, and at 4 1?2 she went into heart failure while at the hospital for her quarterly check-up. Sarah was put on a heart bypass machine and for seven months we lived in the cardiac ICU of Philadelphia’s Children’s Hospital. There we battled infections, viruses and other complications, tweaking treatments and medication until she finally received her perfect new heart. While she gained a strong new heart, she also left with a spinal cord injury and weakened lungs, the types of issues that come with the traumas of chronic illness.

When I was first asked to write this piece, I wasn’t sure how our experience tied to epilepsy. Although I realize all complex medical conditions have a physical and emotional toll, I wasn’t sure I could fully understand what it was like to live with something that interfered with one’s cognitive ability. My daughter has always been able vocalize her pains and, although stressful, we’ve generally felt we had time to think through a plan. Unfortunately, we can now add seizures to our list of surprises. Her seizures were caused by a condition known as PRES, brought on by a sudden and unexplained spike in her blood pressure. Other than seeing her heart stop for the first time, this may have been the most frightening experience of our lives. As her eyes veered off to the side and she went basically unresponsive, I felt helpless. I had no idea how to respond and believed my worst fears may have been coming true. We watched her stare off into space and knew her cognitive function was being compromised for some unknown reason, so we weren’t sure we’d ever again see her spunky spirit or smile. Thankfully the “R” in PRES stands for reversible and with her blood pressure under control, we can hope to avoid future episodes.

As I reflect on this path we’ve traveled, two analogies often come to mind. At times I feel as if we’re fighting a war. As we manage through the stress and face difficult decisions, we must trust and depend on our officers (medical staff) and we have become close with the fellow soldiers (families) around us. Families in a pediatric ICU come from all walks of life, and like soldiers, we deal with our stress in various ways, but all are there for a common cause: to care and protect their children. We feel their joy but we also bear their grief. I’ve also thought of myself as one of those toy punching bags that takes the punch but keeps popping back up for more. Just when we pull ourselves back together, we get punched down again and the air slowly leaks out of us. It’s the simple messages from friends or smiles from our daughter that fill us back up and restore our strength.

This world has opened our eyes to many things both good and bad. A life with chronic illness prevents you from ever being able to truly relax. It’s a rollercoaster ride and you know you’ll never get off it. We worry about what the next day may bring, and are often afraid to plan too far into the future. I firmly believe there is no pain greater than watching your child suffer.

However, we do our best to focus on the positive. I am continually humbled by the goodness in people. We have doctors and nurses who are like family, seeming to care for Sarah almost as if she were their own child. I’m struck by the everyday stranger who looks past the wheelchair and trach tube and talks to Sarah like any other child, bringing a big smile to her face and helping her see how special she truly is.

As I watch celebrities dump ice water on themselves or hear that On The Edge: Living with Epilepsy will be broadcast to millions of PBS viewers, I’m also driven by hope. Over the course of Sarah’s short life she has benefited from new medications, therapies and medical devices that have enabled her to live a happy and productive life. We hope to see continued focus and progress treating spinal cord injuries, managing transplanted organs and treating the many other illnesses such as epilepsy. We know there is so much progress yet to come.

— Written by Cheryl Fyock

My Sister’s Voice, by Dylan Seff

Reprinted with permission from Voices from the Heart: Lifting the Veil on Epilepsy, compiled by Louis Stanislaw, with a foreword by Susan Axelrod.

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Cortney was two years younger than me, but in many ways she appeared much younger than that. After a tough delivery at birth, Cortney went through a series of infantile spasms as a baby and had developmental issues during most of her childhood. Doctors even told my parents she might have to be institutionalized. I never knew about these things but always noted that she hadn’t achieved certain intellectual milestones that I had hit at her same age just a couple years before. But, she wasn’t so different that it was ever necessary to make it a big deal and she was otherwise a mainstream student.

When my sister hit her early teens, though, her slowness had developed into social difficulty and she found herself often being made fun of and having trouble fitting in. Not too surprisingly, this ultimately led to an eating disorder as her childhood complexities evolved into body dysmorphia—meaning an abnormally negative view of your body—in her teenage years. Finally, her rapid weight loss and frailty gave way to teenage epilepsy, begetting a string of seizures not seen since she was an early infant.

Cortney began a series of medical treatments, largely relying onvarious drugs to help her control her epilepsy. On the plus side, the severity of her medical situation seemed to detract her from her eating disorder, but the seizures, combined with heavy medication, made it even more difficult for her to adhere to social norms in her behavior and appearance. Unfortunately, drugs that ease the kind of frequent seizures that Cortney had also cause body hair growth, slowness in thought, and difficulty in clear communication. Put another way, Cortney was made to be even more different—hardly something that a teenage girl who was already uncomfortable in her own skin could ever want. In the haze of constant medication, she couldn’t do math, complete sentences in a normal conversational speed, or follow basic instructions. But I could see in her eyes she knew that—she just couldn’t process it quickly enough on the surface. It must have been terribly frustrating, like not being able to fully wake yourself from a dream.

But, at the same time, my sister had begun to develop her own interests and ambitions by this point, and even with the troubles epilepsy brought, Cortney entered a four-year academic program in gerontology, dedicating her life to the care of the elderly, a group of people who she always found kind to her and thoughtful beyond her peer group. Cortney also found a love of singing. This was particularly interesting. She was a terrible singer. She took after my mother in tone and my father in rhythm. Poor girl.

And so, with a path laid out for her to have a life with some of the independence we never thought she’d have after her difficulties as an infant, it was impressive to think Cortney would potentially have a future beyond any you would forecast for her as a baby. But it did not turn out that way.

*

Cortney died on October 6th, 2001. She drowned after slipping into a lake during a seizure on a nature walk in Connecticut. She was 24 years old.

Cortney’s funeral was held in Great Neck, New York, where she was to be buried next to her grandfather. We had a modest funeral. We had options for music to be played prior to the ceremony at the funeral home. My mother had also found some tapes of Cortney singing with her music teacher that we were able to play over the sound system at the home.

Cortney’s voice was beautiful. I don’t think I‘d ever heard her so clearly and unencumbered by challenge as I did that cold autumn day.

— Written by Dylan Seff

Dear Universe, by Lia Turner

Reprinted with permission from Voices from the Heart: Lifting the Veil on Epilepsy, compiled by Louis Stanislaw, with a foreword by Susan Axelrod.

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Dear Universe,

I am writing to you because I have been recently reminded that you sometimes need to be acknowledged. In addition, I know it is time for me to make a small contribution to the vast energy that is life.

Because of the natural unpleasantness of my neurological state, I generally try to stay as far away from sad movies, books and stories as I can. However, finding myself experiencing waves of emotion surrounding my epilepsy recently, I figured it was only fitting to cleanse my emotions with a good, long, hard, cry.

I recently indulged myself in what my mother calls a “purification novel”. This is the type of novel that makes you cry the whole way through the book because of its sadness and beauty. Going about this task is difficult though, because it is crucial that the right catalyst for purification is chosen. Something too sad will only leave one unmotivated, and something not sad enough does not last long enough to create the post-cry inspiration. The novel that was most fitting for this particular purification was a novel that I picked up in the teen fiction section (often times where I go to avoid the realities of my epilepsy, not dive into them). The novel I chose is titled “The Fault In Our Stars” by John Green. I mixed feelings about the probability of this novel being a good purifier, but I was not let down.

When I began reading this novel, I quickly identified with the main character, Hazel. She, too, was dealing with the miracle of life while balancing the curse of suffering. Of course, she had a self-multiplying virus called cancer, where I merely experience seizures.

She had experienced a near death situation where she had her family around her, praying for her life, which is something that I, too have experienced.

Hazel had to have a constant reminder of her condition in the form of medication, which is something that I have dealt with for the past 8 years.

It is interesting that Hazel should come to contemplate concepts like the vastness of consciousness, when I attempt to relate the idea to my own life every day.

It is funny, Universe, that no matter the condition, the effects don’t differ that much.

Crying my way through these parts was the only way to fully understand the depth of Hazel’s triumph, and the only way to truly plant the seed of hope that I may one day experience a similar soul-altering appreciation for experiencing even a small and fleeting portion of the infinite love that we all crave.

You see, what made Hazel’s story so triumphant was not that she just got to experience real love with the boy named Augustus Waters, but rather it is that she got to do it with such vulnerability and awareness that it is fleeting that she completely opened herself up to the pain that soon followed. She did this with such grace, that as she let the tide of emotion representing loss flow into her soul, she was able to stay strong, and understand that everything would be all right.

If there’s one thing that I would like to be able to accomplish in regards to my epilepsy, it is that. I will learn to regard it as a dear friend, a trustworthy companion and a teacher with endless lessons. Only then will I be able to be completely open to accepting the physical and mental pain that accompanies this.

Only then, dear Universe, will I be able to have a say in how my epilepsy hurts me.

— Written by Lia Turner

Coming Out the Other Side, by Bill Maier

Reprinted with permission from Voices from the Heart: Lifting the Veil on Epilepsy, compiled by Louis Stanislaw, with a foreword by Susan Axelrod.

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I have a unique understanding of what it is like to have epilepsy. I had seizures for 50 years before surgical intervention by those who I call my angels at Massachusetts General Hospital put an end to the chaos that was destroying my life.

While having seizures, I couldn’t understand what was happening to me but now, with a clear mind, I can look back over all those years and understand what it is like to live with epilepsy and the damage done to the individuals having the seizures, as well as to those close to them.

Epileptic seizures occur when the mind goes to war with itself. There are different intensities of neuron warfare, ranging from cold war skirmishes and firefights to all-out assaults. As in any warfare, there is always damage done. Some memory is always destroyed while the fight rages on, and this alters our perception of realty. At times, memory loss may be minute and other times significant memory loss may occur. When we come back into reality from a neuron battle that raged in our minds, we will receive your gifts of love, compassion and understanding with heartfelt thanks. Witnesses or first responders to someone regaining consciousness after a seizure should understand this and always act in a gentle, caring, non-threatening manner.

All of us must endure difficulties, some more than others. For people with epilepsy, it is very damaging when we are made to feel like we did something wrong. Remember that we did not do this on purpose or do something wrong. We couldn’t help it. Our damaged brains made us do it. Try not to make us feel worse than we already do. We are burdened with so much guilt knowing that something happened to us that is incredibly disruptive to others. No matter how groggy we are, we appreciate and are comforted when met by a gentle, caring person.

To some people, this may sound selfish. However, I can’t help feeling the way I do. The more I think about what it is like to endure the full fury of a seizure, the easier it becomes to humbly ask for help from others.

When I was in the epilepsy ward at Massachusetts General wired to fire, having seizures monitored to trace their origin and determine if I would be a good candidate for surgery, I was always greeted by a kind and caring person when coming out of a seizure. Feeling comforted and secure helped make the monitoring ordeal bearable.

There are many other difficulties that often plague a person with epilepsy. Like many others, I have been diagnosed and treated for anxiety disorders, depression, PTSD, ADD, just to mention a few. Other psychiatric and psychological disorders are too complicated for me to describe. I used alcohol as self-medication to control stress and anxiety that often triggered my seizures. Alcohol helped for a while but inevitably led to alcoholism, which aggravated my anxiety disorder and pushed me into depression. When I stopped drinking and no longer took my medicine, my seizure activity increased dramatically in both frequency and intensity. The seizures could not be controlled by prescription medications and I eventually ended up at Massachusetts General in the care of my angels who intervened to fix my brain and save me from the disastrous place I was headed to. I think of it as starting my life over with a new, fixed and improved brain. I no longer must live with the conscious and unconscious fear of having seizures. Epilepsy has a huge negative impact on both the victim of the disease as well as others associated with the unfortunate.

— Written by by Bill Maier