Epileptic actress attempts to induce fit on stage

An actress, Rita Marcalo, who has suffered epileptic seizures in private for 20 years is attempting to induce one for a public performance.

By Paul Stokes
Published: 6:19PM GMT 19 Nov 2009

Ms Marcalo suffers around two seizures a year even with medication Photo: ROSS PARRY

Ms Marcalo has stopped taking medication ahead of next month’s production entitled Involuntary Dances which she claims is to raise awareness of the condition. But she is facing criticism for putting herself at risk and the voyeuristic nature of the 24-hour event which is being funded by a 13,889 Arts Council grant. People will be invited to film her at Bradford Playhouse, West Yorkshire, where she will use strobe lighting, fasting and raising her body temperature to try and bring about a seizure.

She said: “One of the reasons I am doing this is because epilepsy is an invisible disability. As an artist I am very interested in this idea of doing something in my art that is the opposite of what I do in my life. In my own life it is private but in art I make it public. If you Google or YouTube `epileptic seizures’ you come up with all kinds of mobile phone footage which has been filmed without the patients' consent. Part of me doing this is to address the voyeurism. I am saying, I am choosing to let you do this.”

The charity Epilepsy Action has expressed concern at the potential danger of a patient stopping medication and a spokesman said: “What kind of example is this to other people?”

Details of the stunt emerged at a time when Auvryn Scarlett, an epileptic, was jailed in the US for killing a British couple with his dustbin lorry after failing to take his medication because it interfered with his enjoyment of alcohol.

Ms Marcalo, who directs the Leeds-based dance theatre company Instant Dissidence, suffers around two seizures a year even with medication. The audience, restricted to over-18s, will be provided with sleeping bags and breakfast - but will be woken by a siren the moment she suffers a seizure and can record it on their mobile phones.

Eleanor Barrett, director of Bradford Playhouse, said: “I think it will shock people. I think it's her right to express herself and if people find it distasteful they do not have to see it.”

Philip Lee, chief executive of Epilepsy Action believed many of the charity’s members would consider the performance “inappropriate”.

“I am concerned about the potential danger of a patient stopping their medication to induce a seizure," he said. “Seizures can bring with them the risk of injury from jerking or falling or in the worst cases, death. It is also concerning that the performance could influence others to do something similar. At the very least, the performance should carry a health warning advising people that they should not attempt this themselves.”

Dr Sallie Baxendale, a neuropsychologist at the National Society for Epilepsy, said because seizures were unpredictable, it was unlikely someone would be able to induce on at will even when off medication. She added: “If a seizure happens in front of an audience it is likely to make them feel very uncomfortable. Will this help reduce the stigma which still surrounds the condition? I doubt it."

Source :www.telegraph.co.uk/culture/theatre/theatre-news

""It is so important to keep seizures under control with medication or through surgery. Ms Marcalo is truly dicing with her life by skipping her medication and attempting to induce a seizure in her play. It is my opinion that her intended daredevil and frightful act is extremely distasteful, degrading, disrespectful and embarrassing to people with epilepsy. If she so much wants to be seen in a state of seizure publicly, she can fairly well have some family members record her and post it in YouTube for the purpose of awareness.

I hate to think that her act will be a strong precedent to others. Copycats are everywhere. Epilepsy activists, advocates and epilepsy societies everywhere are preaching tirelessly about the importance of regular medication intake and no thanks to Ms Marcalo who is about to make a public appearance staging herself in a highly revolting act.""

MEDIKIDZ FOUNDATION



Medikidz puts complicated medical concepts into simple language, so that all patients (no matter what their age) can understand what is happening inside their own bodies.



How do you go about explaining medical conditions to young children? Do you hide, brush off or put aside efforts in attempts to explain complicated medical conditions to young children under your care? Young children, like adults, also desperately want to know and understand what is happening to them and why they are feeling unwell. We as caregivers must bear the responsibility of enlightening our sick children about their medical condition lest they suffer in ignorance and in silence.

It is unfair and unjust to allow young children to go through sicknesses in the dark. They deserve all the rights to know and understand their illnesses. Medikidz Foundation has designed and created superhero characters in medical comic books to be distributed to kids who are ill worldwide. These medical comic books will appeal to young children and it's contents are pictorial with easy to digest medical information about various types of illnesses.

Please visit Medikidz Foundation at http://www.facebook.com/pages/Medikidz-Foundation/27690241212 to find out more about the Foundation and the range of medical comic books catered for young children. I am looking forward to receiving my copy of epilepsy comic book catered for young children between the ages of 10 - 15 years old.

Medikidz Foundation will be giving away 100,000 HIV books as part of World AIDS Day on 1st December 2009.

HANDLING OUR LIMITATIONS
(November is Epilepsy Awareness Month)

"Jump, survive or die thoughts" flooded my mind at this moment. Too late to look back.

No regrets. Weeeeeeee.........I am gliding and flying like a bird. Greatest feeling in my life.

For this epilepsy awareness month, I wish to share my personal views as a person living with epilepsy for close to 40 years. Living with epilepsy comes with limitations to some extent. No driving. No swimming alone. No climbing heights. No late night parties that deprive sleep. No alcohol consumption. No over stressing myself over everything in life. No parachute jumping. No, no, no.....the list goes on.

Nobody will like to lead a life filled with too many "No" but don't all of us have some kinds of "No" in our lives? Some people have to say no to certain types of food because of allergies. Some will say no to outings because of lack of accessibilities for wheelchairs. Many will say no to luxurious shopping and eating because of tight financial budgets. Saying no is part and parcel of life. Same goes with saying yes.

How successful we are in living our lives to the fullest depend on how we juggle and cope with the "No" and "Yes" in our lives. Are you the type that allows "No" to downgrade your life or do you take "No" as challenges to improve yourself and your life?

I view life as very fragile and unpredictable. Anything can happen in life. Tragedy does not pick and choose it's victims. Two young boys ran and hid themselves under a tree but was struck dead by lightning. A young toddler laughed to her death. A 17 year old student was permanently blinded by acid. A couple looking forward to marriage was killed in a tragic car accident. A pregnant mum had her handbag snatched from her while she was riding a bike. She fell and injured herself seriously on the road. She was sent to hospital but died in a coma.

With so many uncertainties looming in our lives, it no longer bothers or troubles me that I am epileptic. I have learned to accept and cope with whatever life has to throw onto me. Is it worthwhile to worry excessively over the situations and conditions you are in or does it make more sense to take full charge and control of your life. Manage your life as best as you can and be content with whatever life has to offer. Your life is whatever you make it out to be.

EPILEPSY IS MANAGEABLE AND CONTROLLABLE. IT IS NOT AS TERRIFYING AS IT SEEMS.

LIVING WITH FITS

Wheel Power
By ANTHONY THANASAYAN

Celebrating my son's 21st Birthday

EPILEPSY is a condition of the brain which causes a person to become unconscious. This happens for short periods of time where he or she will move about in an uncontrolled, and sometimes violent, way. Such movements are called “seizures”. They are caused when there is a sudden and involuntary surge of electrical activity in the brain. No one knows why this happens and so there is currently no cure for epilepsy. The person experiencing a seizure goes through a motion that alters the way he or she thinks, acts or feels.

Now, anyone reading these few paragraphs may be terrified of the disease, especially if it were to affect them or their loved ones. Not Serene Low, however, who lives in Bangsar, Kuala Lumpur. The 49-year-old wife and mum of a 21-year-old son is convinced that having epilepsy is neither a death nor life sentence.

“Life is still beautiful with epilepsy,” she told Wheel Power last week. Low is in the best position to know this as she has epilepsy herself, a condition she has lived with for nearly 40 years. In that time, Low has experienced more than 100 attacks.

“The good news is, today, there are many types of anti-epileptic drugs available,” she said.

“With proper diagnosis and the right medication, seizures can be fairly well, if not, very well controlled,” added the prominent epileptic awareness activist whose blog www.epilepsylegacy.blogspot.com won a top health blogger award in February this year. Low pointed out that when taken regularly and as prescribed, anti-epileptic drugs can prevent seizures in a majority of people.

It has been estimated that at least 50% of all patients with epilepsy gain complete control of their seizures for substantial periods of time. Another 20% enjoy a significant reduction in the number of epileptic attacks.

“I have lived with epilepsy for most of my life and I’m fortunate to say my seizures are very well controlled. I would also like to point out that without epilepsy, I would not be the epilepsy activist that I am today. My experience with the disease has helped me stay connected and in touch with other leading epilepsy activists, caregivers and people with epilepsy (PwE) not only in the country but around the world as well.”

Low stressed that being an epileptic does not make her feel different from anyone else. In fact, her epilepsy blog has been a huge plus factor for her. "It has opened a whole new dimension in my life,” she explained. “I have loyal followers and readers, many of whom are PwE who leave inspiring and motivating comments for me. In fact, if not for epilepsy, I would still be the shy and quiet person that I used to be.”

Low had her first seizure as a child after a high fever. Then she stopped having them for about 10 years until they recurred when she was 18. Her last seizure occurred in March.

“Epileptic seizures can be extremely dangerous for PwE, especially when they happen in dangerous places,” explained Low. “Once it happened when I was swimming in Port Dickson where I almost drowned. Another time, I was at a traffic light waiting to cross a busy street and the seizure caused me to fall down on the five-foot way where I broke the whole upper front row of my teeth and needed extensive dental surgery.”

Despite those difficult times, Low said that life has to go on for everybody and especially for PwE. “In my case, I have learned to look beyond epilepsy. The way I see it, the horizon beyond epilepsy is colourful, beautiful and captivating like the artworks of Vincent Van Gogh and his divine paintings. His paintings have inspired me in my art which is one of my greatest interests.”

Low said that although her art may never find a place in art galleries, painting has become a therapeutic pastime for her. Three weeks ago, she submitted 13 paintings to Jim Chambliss, who calls himself “a reformed attorney” after successfully rebounding from traumatic brain injury in 1998. He is currently doing research on the influence of human conditions such as epilepsy and migraine in art at the University of Melbourne and St Vincent’s Hospital in Australia.

Low was delighted that her works were picked as part of a study by Chambliss, entitled Epilepsy and Creativity. Chambliss, incidentally, is also a PwE.

Source: thestar.com.my

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