FOLLOW YOUR PASSION
I lived in Zimbabwe, was a Springboard Diving & Swimming Champion and hit a diving board at the age of fourteen (14).
I was diagnosed with epilepsy at the age of sixteen (16). Still today, I am convinced this was due to puberty, hormonal imbalances, and stress from exams at that time. Doctors denied these reasons. My seizures commenced as petit mal (absence seizures) which turned into grand mal (tonic clonic) a year later. I had a wonderful family who helped me accept my epilepsy. They explained how a seizure occurred, what happened during the process and gave me the courage, patience, willpower and understanding to carry on with life.
I was bullied at school but found the strength to ignore the discrimination shown and decided to ‘go it alone.’ At the age of seventeen (17), I went to College, obtained a Secretarial Diploma, managed to find employment in a Group of Hotels, move into my own little flat close by, and had found the independence I was looking for. I met new friends in the working environment; my bosses understood my epilepsy and the seizures continued to improve with the help of medication.
After many visits to my Neurologist and being on different types of medication over the years, I was eventually put on Carbamazapine and Phenytoin, which I have now been on for over 20 years. Due to a shortage of medication in Zimbabwe years later, a move to South Africa had to be made (Kwazulu Natal) and luckily medication still today is obtained through an Outpatients Clinic at one of our local Government Hospitals.
Finding employment in this country has been extremely difficult. The stigmatism of having epilepsy is widely spread and one is discriminated against by both recruitment agencies and small/large companies looking for employees. A Visa was stamped in my passport every six months until Permanent Residence or I.D. was obtained. This stated I was allowed to reside with my husband/spouse, and was not allowed to work or study. Papers were repeatedly lost by our Government Departments upon application, and eventually, five (5) years later, an Identity Document for South Africa was issued. Naturally with no employment for years in this country, my career fell apart and my life definitely changed. From a wonderful career commencing in Zimbabwe many years ago, I now had no career in South Africa (since 2004 and still today.)
A Disability Grant was refused twice, the reason being that ‘epilepsy was not considered a disability’, so I had no income to start off with in a new country and no hope or proof of a permanent or part-time income. My husband found employment but times were hard trying to make ends meet on one salary. He has since been forced to take early retirement two years’ early at the age of sixty three (63) and was retrenched on 31st March, 2014. Where do we turn to now?
Due to all the emotional upset and frustration of the above, I decided to turn my interests elsewhere. I became a National Member of Epilepsy South Africa and in 2009/2010 joined the Epinews Panel (a panel of members with epilepsy who collect personal stories from people with epilepsy.) All stories are edited by me into a bi-annual magazine (Epinews Summer & Winter Issues), which are then distributed to all members and anyone else interested in epilepsy.
This is all done on a voluntary basis but I have found everyone has a different story to tell, each person has had their ‘ups and downs’ with their epilepsy, and so many individuals are much worse than myself. I have approximately one 35 minute tonic clonic seizure monthly now, and I am still able to obtain medication. Many people in the rural areas do not get to our doctors, constantly go without treatment or medication and suffer with their epilepsy day after day without any appropriate care.
A few years’ ago, I was invited to two separate conferences held by Epilepsy South Africa which were the most wonderful experiences of my life. Meeting so many with epilepsy, so many disabled human beings, seeing how they coped, how disadvantaged they all were, gave me the strength to counsel, give advice, support, friendship, love and hope to so many others who had no friends and no one to go to who understood the discrimination and stigmatism they faced in the country today.
A fellow delegate turned me to the internet to join social networking sites, i.e. Facebook and Twitter, and I continued to do more research in the process. I opened up free accounts on both sites and started immediately to talk to other people with epilepsy, find friends, give them the confidence to accept their epilepsy, have hope and faith, and requested them to message me whenever they needed to talk to someone about their epilepsy.
The friendship spread from South Africa to other countries and I met more friends on Facebook and Twitter than I ever imagined. My voluntary advice and counseling system was shared with so many supporters and now I feel I am assisting friends, their families and anyone else interested, to understand their epilepsy and face the public, join groups, meet their own friends and begin to socialise in the outside world.
From being on Facebook since 2009, (with now over 1200 friends), I had a dream of opening up my own Motivational and Inspirational Page. This became a reality on 1st March, 2013, when I decided to take the step forward. I was nervous at first as everyone is when opening up their own support system, but this has brought so much assistance, guidance, hope, faith, and love to all with epilepsy. Epilepsy Motive Quotives (https://www.facebook.com/EpilepsyMotiveQuotives) has brought much joy to others who battle with the constant discrimination, loneliness, and stigmatism in the World today! A daily inspirational quotation can mean so much! Strength must come from within, as well as from friends and family; where else to find it but a Group or Page. We now have 1876 Members and it continues to grow!
I have since re-applied for a Disability Grant which, 6 weeks’ later, has finally been approved! Patience, perseverance and strength were the three vital aspects to obtaining this Grant; these made me more determined to reach this goal.
I am now fifty six (56) years of age, had epilepsy for 40 years, haven’t had a seizure for 8 months, have faith and hope that this ‘free’ period of seizures will continue for many more months, even years, but know that my passion is to continue sharing my epilepsy and supporting others!
Remember, there is always light at the end of the tunnel! One just has to follow the right path!