Epilepsy Association of Utah

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Seize: The Story – Lesley Donnelly

An Improvement in Epilepsy after Thirty Nine (39) years: Fifteen (15) months seizure free

I was born in Southampton, U.K., lived most of my life in Zimbabwe and have lived in South Africa for approximately eight/nine years. My epilepsy commenced at the age of sixteen (16); was this now the end of my life, career and more? Exams and education were important to set future career goals, so ahead we must go! Once exams were successfully passed, I enrolled myself at College, gained more knowledge and finally a career in the Administrative/Personal Secretarial sphere was obtained. This was the start to a great life, however, there was one handicap; Epilepsy.

I had so many questions with so many fears. The more the seizures occurred, the more friends I lost. With no one to talk to, no one to listen to, and constant fear of when a seizure might occur, I knew I must still focus on my career, but remain independent at the same time.

With the help of a small loan from my parents, I managed to find an apartment in a block of flats and my life then began to change. I found a job in a hotel close by, walked to work every day and lived an isolated life until more friends could be found. Socialising was difficult, but with wonderful bosses and a great working environment, I managed to accept my epilepsy as a life-long predicament and go forward.

Working in the hotel industry, meeting clients and guests, being promoted and transferred to different positions for plus/minus nine (9) years with one Group of Hotels, soon gave me confidence, immense happiness, taught me better administrative and inter-personal relationship skills and enabled me to now go into the outside world and navigate more. My epilepsy was still at the back of my mind, but with happiness in a good working environment the thoughts soon drifted away. I knew that as long as I took my medication regularly and kept up with my doctor’s visits, my life should continue to go well.

Many years ago, we didn’t have cell phones, computers or electronic devices to keep in touch with family and friends. Sharing was done by “word of mouth”; the more we shared, the more friends were found. Do not be afraid to share your epilepsy and your stories with others so they have a better understanding of you and your epilepsy. Do not be discriminated against; support each other. Wear a Medic Alert bracelet giving details of your epilepsy, medication taken and phone and registration numbers whereby contact can be made to others in times of need. These are essential and can be a life-saving device if worn.

I married about a year later, but Tom, my ex-husband of now thirty three (33) years (maybe more) was a printer by trade. He did night shift (6:00 p.m. – 6:00 a.m.), whilst I worked office hours (8:00 – 4:30 p.m.). Our two separate lives of being apart for hours and only seeing each other for a few hours every day, eventually took a toll and the marriage broke up after a four (4) year period. He had no idea what epilepsy was, how it affected me/others and also didn’t understand the process during a seizure so due to fear and lack of knowledge, he finally disappeared by leaving a letter under the door. Naturally, with no husband, no marriage and suffering with epilepsy, I felt as if my life was falling apart once again!

My wonderful family then stepped in and offered financial and marital advice, divorce proceedings went ahead and eventually my divorce was granted after three (3) years. This understandably had an effect on the amount of seizures I had due to stress, emotion, hormones and other reasons. My best and only friend stood by me through this whole encounter, helped me get my life back together, and accept the fact I was now divorced but still had epilepsy. I wanted to be isolated from everyone, from my working environment, family and friends for months and years but then 6 years later after a wonderful friendship with her, she finally made me socialise more and join a dating club. Through the dating club I met my present husband who I’ve now been married to for twenty four (24) years; he’s accepted my epilepsy. Do not let your epilepsy ruin your friendship/marriage/relationship; understanding comes from both sides and time and patience is vital during this precious time. If your partner doesn’t understand your epilepsy, discuss the matter further, seek counselling for you both to find assistance and guidance together, and even join a Support Group.

We bought a house nearby and life carried on. Medication then became unavailable in Zimbabwe, so a quick decision had to be made. My epilepsy was still present but the medication wasn’t. A move was made to South Africa due to lack of medication; this is now dispatched monthly through a local Government Hospital! Praise the Lord!

Whilst trying to settle into a new country, there were many trials and tribulations with my epilepsy. More seizures occurred; I had great difficulty finding transport to visit qualified Neurologists/Neurosurgeons due to medical costs, and could only visit local General Practitioners in the process.

I wanted to reach out to others, decided to go Browsing/Googling on internet, found Epilepsy South Africa, applied for National Membership and have been on their tail ever since. Epilepsy South Africa has been the spirit behind me, given me great assistance, guidance, information, support and understanding, as well as the willpower to carry on with life.

I joined their Epinews Panel, a voluntary panel of members/people with epilepsy who collect personal stories from people with epilepsy, for their bi-annual Epinews Summer and Winter Issues each year. These articles are re-edited and sent off for publication and distribution. I love being involved in this task knowing I am helping others find faith, guidance, love and support; this has played a big part in my life.

Being a National Member and being invited to attend more than one conference on behalf of Epilepsy South Africa, has changed my outlook and epilepsy remains a background sphere in my life. We have managed to form two groups on Facebook called Epifriends Network Group and Epifriends Network Page, which give others advice and support as well as more knowledge on epilepsy. Anyone who has Facebook and Twitter please feel free to join our Group/Page on Facebook to help you meet other people, as well as different organisations with more information. You are welcome to send me a personal Friend Request, visit https://facebook.com/lesdonn, https://twitter.com/lesleydonnelly1 or https://twitter.com/epilepsymq and socialise more!

Throughout the months gone by, I was at the stage of regularly having one major tonic clonic seizure per month. On 14th January, 2012, I was sitting quietly having a cup of tea at a local store, when a seizure started without any warning, I fell off a chair, hit my head on the pavement and had back and neck injuries in the process. This once again took a toll on my body, my mind, energy level and more. A week of recuperating, lack of muscle strength, constant headaches etc. made me want to do more research.

So far, April, 2013, (15 months), I haven’t had any seizures, but why is my question? My medication hasn’t changed in any way, I am still on hormone replacement therapy, which I have been on for many years, but could it now be the hormonal change in womanhood to Menopause? Perhaps its being happy in oneself, constantly occupied doing something I love by supporting others or just the time for Epilepsy to disappear quietly!

At 55 years of age, and having had epilepsy for 39 years, is my life due to change? Not having seizures for 15 months has been like a miracle, but still anything can happen. I will remain positive and I hope that as more months go by, my epilepsy will disappear forever!

I will continue to research this point and hope I will soon find the reason!

Lesley Donnelly

To share your story about life with epilepsy, contact Syndi@epilepsyut.org.

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