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.

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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

The Courage to Share, by Sandra Kinsella

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 first encountered Louis Stanislaw and his family in 1989. Louis’ father, Joe, was my boss—and at the time, Managing Director of a rapidly expanding company in Paris, France.

The Stanislaw family was down to earth, warm, kind and generous. I had no idea that Louis began to have seizures during this time. The proof: this tight knit family of five, with mum Gussie at the helm, embraced life with unquestionable joy and unwaveringness.

The outside world never knew of Louis’ struggle, nor of Joe and Gussie’s anguish.

It was only about five years ago that I reconnected with the Stanislaws after learning of Louis’ film “On the Edge: Living with Epilepsy.”

At first, I was pained at the thought that Louis has suffered in any way—irrespective of the malaise being triggered by seizures relating to epilepsy.

However, on reflection, I came to the realization that only Louis, being the special soul he is, could carry this particular cross.

Armored with a determined will, using his God-given gifts of creativity, Louis took on the impossible: to raise awareness, understanding and empathy regarding epilepsy and to open up honest and frank discussion with both learned and nai?ve people.

I will be candid in admitting that, to date, I have yet to witness anyone—whether family, friends or strangers—suffer an epileptic seizure. Ironically however, I now find myself, within just six months, working alongside new colleagues who have either had epilepsy since childhood or endured seizures later in life.

Epilepsy, it transpires, does not choose age, ethnicity, religion or social status. Epilepsy, to put it simply, just happens.

My contribution for the reader of Louis’s book is inconsequential, except for one acute detail: within five years of exchanging periodic correspondence with the Stanislaws, I have observed Louis valiantly telling his story, at times when the darkest hour before dawn lingered for far too long.

Louis, thank you for your unselfish spirit, for helping and encouraging children, young adults, parents and families—sufferers and non-sufferers alike—to fearlessly walk the road less traveled.

— Written by Sandra Kinsella

‘Hamilton’ star fights for people with epilepsy (including his own daughter)

Al Roker and the TODAY Show came to Chicago to profile Miguel Cervantes – star of the Chicago production of HAMILTON – his wife Kelly, and their daughter Adelaide’s challenging journey with epilepsy. Also interviewed was Dr. Charles Marcuccilli, MD, PhD, director of pediatric epilepsy at University of Chicago Medicine Comer Children’s Hospital. The segment also reports on Miguel’s original song “’Til the Calm Comes” from which all proceeds from iTunes downloads go to support CURE.

Click here to view the TODAY Show segment.

Click here to download the song.

‘Hamilton’ star to put spotlight on epilepsy during North Barrington fundraiser

As reported in the Chicago Tribune:

Despite being one of the most lauded musical stage actors in the area right now, Miguel Cervantes, who plays the title role in Chicago’s production of “Hamilton,” remains humbled by the outpouring of support for his 1-year-old daughter.

And on July 10, Cervantes will be at the Wynstone Golf Club in North Barrington rallying additional support for his daughter, Adelaide, who was diagnosed with infantile spasms, according to the group Citizens United for Research in Epilepsy (Cure).

“It”s amazing to hear from people all over the world,” Cervantes said. “People are reaching out.”

At 10 a.m. July 10 at the golf course, Cervantes will start a day-long fundraiser for Cure and try to turn the spotlight on his daughter’s diagnosis.

Cervantes said epilepsy typically does not receive the same media coverage as other diseases, such as Parkinson’s, Alzheimer’s and ALS.

“So, people thank me for putting epilepsy on the map,” he said. “If my small piece of fame can help, then I’m happy to use it.”

Cervantes said his wife, Kelly, worked in event sales and also helped host events for epilepsy research in New York City before “Hamilton” came to Chicago last fall.

Their daughter has experienced ups and downs since her diagnosis, which is typical in the “the world of epilepsy,” he said.

“This is the hand we’ve been dealt. This is our new normal,” Cervantes said. “We keep fighting. We don’t have a choice.”

The fundraiser at the Wynstone Golf Club in North Barrington includes lunch, a reception dinner and awards, as well as live and silent auctions, organizers said.

Registration is open to the public. For information, call (312)-255-1801 or email events@CUREepilepsy.org.

Chicago’s HAMILTON Miguel Cervantes Debuts New Original Song ‘Til the Calm Comes

Miguel Cervantes, who plays Alexander Hamilton in Chicago’s HAMILTON, is releasing a new original song ‘Til the Calm Comes about his family, wife Kelly, and their personal journey with their baby daughter Adelaide’s struggle with epilepsy.

The song and music video will be debuted live at the 19th Annual Citizens United for Research in Epilepsy (CURE) Benefit in Chicago on May 15th, 2017, alongside the Misericordia Heartzingers Choir. The song will be available for purchase on iTunes, and all proceeds will be donated to CURE.

Miguel is raising funds for CURE on behalf of his one-year-old daughter Adelaide. Adelaide suffers from Infantile Spasms (IS), a rare childhood epilepsy syndrome that can have profoundly negative long-term consequences. Starting at 7 months, Adelaide began having dozens of seizures per day and, as a result, has severe developmental and cognitive delays.

The CURE benefit will also feature Miguel and actors from the Chicago cast of HAMILTON performing pop hits and selections from some of Broadway’s greatest shows. More than 1,200 supporters attended last year’s benefit to celebrate CURE’s impact and helped raise close to $2 million for research. The organization was founded by David and 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.

This year also culminates their successful campaign for My Shot at Epilepsy, a fundraising effort led by Miguel and Kelly Cervantes.  The My Shot at Epilepsy campaign raised over $75,000 and released a widely seen PSA and Rap Video from Miguel.

Hamilton Star Opens Up About Daughter’s Epilepsy – “My Shot at Epilepsy”

As covered by The Chicago Tribune, Miguel Cervantes—the lead in the Chicago cast of “Hamilton”—and his wife, Kelly, are opening up about their struggle with epilepsy, teaming up with CURE to raise funds to find a way to defeat epilepsy. Cervantes, who performs seven shows a week, has recorded a public service announcement about epilepsy and, along with fellow “Hamilton” cast members, is offering to go caroling with one set of raffle-winning donors, host another set of raffle winners backstage during a holiday performance of “Hamilton” and perform a private cabaret for a lucky charity auction winner with deep pockets (bidding starts at $25,000).

Read more: Click here to participate in the campaign, see the prizes and view the PSA

Athlete Helps Opponent with Epilepsy Finish Cross Country Race

October 11, 2016 — As reported by KABC (Cedar Rapids, IA) a high school athlete showed what sportsmanship really means when he helped an opponent, who has epilepsy and autism, cross the finish line. Evan Hansen, a sophomore at City High, was running in his cross country meet when he saw Adam Todd from Cedar Rapids Washington, who plays for a competing school and has epilepsy and autism, was distracted by an ambulance. When he veered off course to check it out, Evan came to his rescue. Adam’s father said his son was thrilled to finish the race and knows he has a special buddy on the course.

Read the full story

Tim Loesch and Blake Cunneen Appear on ABC 7 Chicago’s Morning News

Chicago, IL – On Saturday, Sept. 3 Tim Loesch of RE: Epilepsy and Blake Cunneen on the CURE Board of Directors appeared on ABC 7 Chicago’s morning news to discuss RE: Epilepsy’s upcoming Silent and Live Auction and the research it will support. RE: Epilepsy started in honor of Tim’s daughter Maggie, who was diagnosed with epilepsy at age 8. Over the years, they have raised more than $75,000 for CURE and hope to hit $100,000 by the end of 2016. The auction is Saturday, Sept. 10 at The Toadstool Pub in Highwood, IL. Items available for bidding include signed memorabilia from Mike Tyson, Jimmy Butler, and Ernie Banks, as well as experiences such as a suite at the United Center for a Bulls game.

Watch the interview and read the full article