Speakers Corner

Do not quit!

31 January 2015
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By Lesley Donnelly, South Africa

I was a champion swimmer and springboard diver at the age of 12; hit a diving board at the age of 14 and my epilepsy started at the age of 16, possibly due to the hit on the diving board but also due to stress from exams and changes in the hormonal system, i.e. puberty.

Forty-one years later at the age of 57 (still with epilepsy), I have my own Facebook Page (https://facebook.com/EpilepsyMotiveQuotives), am a Member of the National Board of Epilepsy South Africa (www.epilepsy.org.za), and also counsel, give guidance, faith and support to anyone with epilepsy worldwide, both on Facebook and Twitter!

When diagnosed, one doesn't understand the effects this diagnosis can have, i.e. during and after a seizure depending on the type of epilepsy one has. There are so many different types of epilepsy; these all have an effect on immediate family and friends. One has to visit neurologists regularly, understand the chemical reactions of all medications, perhaps experience bullying and discrimination, employment (unemployment) issues and just too many others to mention.

During this time, my mother was my 'pillar of strength'. She pulled me aside and gave me four words to follow when trying to gain my independence at the age of 18... 'TIME, PATIENCE, WILLPOWER AND UNDERSTANDING'.

  • Have TIME for friends and family
  • Be PATIENT with oneself, one's diagnosis, one's doctor together with the effect of medication
  • Have the strength and WILLPOWER to accept your epilepsy.
  • UNDERSTAND one's possible limitations, stay safe in one's environment and know the risks involved when driving, swimming, mountaineering and so much more.

Remember, strength comes from within. Be positive, live for today and communicate with others with epilepsy in order to find out more information that could help you either now or in the future. It is hard to ignore the discrimination and the stigma of epilepsy, but you can do it!

There are so many others who have the same problem, who need friends and information yet very few will reach out to one another to share one's thoughts. One is embarrassed to talk about one's seizures and humiliated when one has a seizure in public, fearing that they will be laughed at afterwards when 'coming round'. Do not be ashamed to go out with friends or to be out in public view with family. Make the most of your time together.

I have had many convulsions in one of our local shopping malls. Initially, I was petrified and embarrassed to have a tonic-clonic seizure in front of the general public, but I found they are a great community that care and help when one is desperate. I wear a Medic Alert Bracelet giving details of the medication I take and the emergency number to contact in an urgent situation. I carry a wallet card in my handbag and on the back of my mobile phone which gives the same details just in case.

We must all unite as one entity, support each other during good times and bad and continue to do so. My Facebook page was opened as a 'start' in March 2013. I thought it would be a failure, but to my great joy it has been a wonderful success and has just reached over 4000 likes. The count continues and the support for epilepsy must go on!



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