The Silent Illness,
I’ve heard and read that it can be genetic, but my parents and my grandparents don’t have it. The only person in my family who has it besides me is my one sister.
The illness is epilepsy.
My sister was diagnosed to have it when she was very little. She has frontal lobe epilepsy and has been on medication most of her life. I wasn’t diagnosed until I was 19.
My mother thinks she could have got it when she was just born. Apparently the nurses were oohing and aahing over her and not smacking to the take her first breath. She eventually did so herself.
The first symptom I received was when I was 17 – in my final year of high school. I had an unusual aurora. I thought it was strange but nothing more.
When I was at university more strange things started happening now and then where I would, for example, be sitting in class and I would hear the teacher speaking but not understanding him. It would pass quickly. These moments started to increase to once a month, then once a week, then once a day. It then started to effect they way I was walking. If a sensation while I was walking happened, I would start walking towards the side. I learnt to stop, stand still and let the feeling pass before I carried on.
I could hide it, except, if someone was talking to me and they asked me a question. I knew they were asking me something and if I answered it would not make sense. So I learnt to just nod and “mmm” – This helped unless it was a question that required more impute back.
When I was 19 I went to my sister’s neurologist for testing and I was diagnosed with temporal lobe epilepsy, where unlike my sister, instead of being in front of the brain it was on left side of my brain. And also unlike my sister I had never had a grand mal seizure.
I’m still not sure how I got epilepsy, my one thought was when I was a teenager, my family went to visit a friend in hospital. I fainted and wacked my head against a bed. My head was cut open and I had a few stiches. Besides this thought I can’t think of any other.
I hated the idea of having epilepsy and tried to deny it as much as I could. I wanted to be “normal” to go and party like all students, drink, have late nights, etc. I did not want to have the same illness my sister had her whole life! And so I never told anyone about my condition or the auras.
I used to call these auras “funny feelings” and they did not disappear. I tried various medications over the years and finally when I was involved in a car accident my mother stopped me from driving and we had to find another solution to the problem.
I went to a well-known neurosurgeon and was tested for a week. Two days before I went in for testing I was told to get off my medication. I can’t remember any of the testing, but apparently due to withdrawal from the medication I was having seizures. After the week I was diagnosed with a non-malignant tumour.
At 25 I was operated on. Part of the tumour was removed, but not all of it otherwise it would affect my memory (I do tend to forget things more since then).
Slowly I got off my medication and never had those “funny feelings” again.
But when I was 26 I was promoted to a management position in a job I was in and it was really stressful, I worked late nights, drank lots of coffee and went to office outings where we would eat and drink.
One day I was organising an event and was on my way to board a plane when I had my first grand mal seizure. I woke up with a medical team around me and I did not have a clue as to what happened. My head and my whole body were aching and my tongue was bleeding. I was then told what happened and was rushed off to hospital where I stayed for a day.
I got back onto medication. But the grand mal seizures did not go away. I would have +- 3 every year. I got married when I was 27 and after awhile my husband said I don’t have to work as the traffic and long hours did not help.
I got to learn when a seizure was coming and so I would stop what I was doing and go lye down. Sometimes the feeling would pass and I could get up again without having had a seizure. I also learnt that hormones affected when I was at most risk for having a seizure during a month. But I was sill having between 1 to 3 seizures a year. I never had those “funny feelings” again though. So in a sense was a seizure very now and then better than daily funny feelings?
When I was 30 I wanted a baby. And my husband agreed but we had to first find a way or means to reduce seizures even more.
I had heard about a product called the Vagal Nerve Stimulator (VNS). Here a device is implanted into your chest and connected to your vagal nerve. Every 5 minutes it switches on and an impulse is sent to this nerve for 30 seconds. It can apparently take up to two years before it starts working. But I thought I’d give it a try. I had my baby when I was 32 heading towards 33. But during my pregnancy the VNS did not help at all. In fact that year while pregnant and breast-feeding I had 10 seizures! I prayed everyday for my unborn baby and praise God my daughter is in perfect condition.
When my daughter was 3 months I started attending a church down the road from me. And I have learnt to really not desire the “ways of the world” by partying and drinking. They can only cause damage and despair. I have learnt to try and live right and live for God. I am not perfect but I can only try.
The seizures did not stop, even though I was on medication and had the VNS. In fact I hated the VNS. Every time it switched on I felt like coughing and if I were talking to someone, my voice would suddenly go horse – very embarrassing. I really did not feel like socialising or speaking to people in case this happened. When my daughter was 1 ½, my mother-in-law was dying from cancer. I spent everyday with her and this stress did not add positivity to my health. After she passed away I decided to switch the VNS off and increase my medication. I have not had a seizure since then and it’s been 3 ½ years – praise God. A few months later I had the VNS removed. I’ve started slowly decreasing my medication again, but when I feel a bit anxious (especially around certain times of the month) I increase it.
I truly thank God for helping me to come right, accept this illness but most importantly to live for Him.
In the bible, the person who motivates me the most is Paul, as he was a strong follower of Christ and wrote many letters in the New Testament of the Bible. He also had an illness or disability – “thorn in my flesh” 2 Corinthians 12:7 - this kept him humble with his soul purpose to live for the Lord.
(For more on this click on: https://www.gotquestions.org/Paul-thorn-flesh.html)
So I take everyday as it comes and rejoice when another year seizure-free arrives.
