I’ve gone back and forth with myself for a long time about whether or not to share my testimony. Fear of people’s opinions and the vulnerability that comes with sharing deeply personal experiences were the main reasons I hesitated. But this is long overdue. Our testimonies are not about us but to tell of the goodness of God. My prayer is that if this blesses, even one person, that it inspires them to draw near to God for themselves and experience the fullness and wholeness that only He can provide.
My Diagnosis & The Start of A Long Journey
Let’s go all the way back to the tender age of 7.
It began at the PTA Meeting in primary school. My teacher, at the time, had my mom sat in the meeting, expressing her concern that I seem to “day dream a lot” during class. Bless her heart because neither her nor my mother and I, were aware of the reality. It was more than just day dreaming. In fact, it wasn’t day dreaming at all. After this, my mom paid keen attention to my behaviour which led to a few visits to the Neurologist. Soon after, I was diagnosed with Petite Mal Epilepsy, also called, Absence Seizures. In reference to the article I plugged in from the Epilepsy Foundation, the type of Absence Seizures I experienced were the kind where I’d blank off in the middle of talking or doing some other activity.
Very weird if you ask me. LOL! Not funny but I am very unserious. Anyways…
Once diagnosed, I began a trial on the smallest dose of medication. For context, most of the cases of epilepsy we learnt about, as we commenced this journey, proved that a lot of persons with the illness, had to routinely be administered more than one form of medication – daily. Luckily, or rather, by God’s grace, this was not the case for me. After close monitoring and routine EEGs (electroencephalograms), the smallest dose – Epilim 200mg – one tablet, twice daily after a meal– proved sufficient in controlling my epileptic episodes. This began, what would turn into, 17 long years with this illness.
My New Norm
17 years is a long time.
The former years were all about adjusting. Adjusting that came with much anxiety when I forgot to take my medication, an increased appetite and weight gain from the medication (which led to my mom’s decision to put me on a strict diet) and struggles retaining my school work. Short term memory is a known effect of regular seizures so the reality of this meant working twice as hard when preparing for exams. It was a lot.
Over time though, this became my new norm. After routine blood work and favourable EEGs, it would also appear that my seizures had become more controlled. At this time, my neurologist began expressing concern in keeping me on medication indefinitely. Any medication administered indefinitely can essentially result in other health issues.
A “Near Miss” Experience
Fast forward to form 3. My Neurologist had decided to take me off the medication and I had been off of it for some months. My mom was worried because admittedly, the seizures were triggered by stress. Stress that often showed up around exam time.
Final exams had begun and it was the morning of my first exam. I had been preparing to the best of my ability but naturally, my stress levels were quite high. Regardless, I started my morning routine prepping for school. While in the shower…. it happened. Off medication for some time, highly stressed, and for the first time ever, I didn’t have the minor absence seizure but in fact, a full blown Grand Mal seizure – known today as Tonic Clonic Seizures – simply put, a convulsion or fit. I fell down in the shower, not realizing I had called out for my mom and my body went into a seizure.
What amazes me to this day is how God was keeping me even in that very moment.
You see, every morning when I went for a shower, I’d usually lock the door behind me. That morning though, I didn’t. So when I called out for my mother, she and my grandmother, were able to enter the bathroom. Though understandably traumatized and in panic, they were able to help me. All I remembered was that I was in the car and being rushed to the hospital. I don’t remember falling. I don’t remember calling out for my mother. All of this was relayed to me once I was conscious and recovered.
Had I locked the door that morning, my mom and grandmother would not have been able to help me and I would have stood the very high risk of possible death. For context, during a convulsion, there is a very real but known risk of choking or swallow the tongue – which can cause death. I had never experienced a seizure like this until that day. I praise God for preserving my life that day because things could have gone very differently.
8The LORD keeps watch over you as you come and go, both now and forever.
Psalms 121:8 (NLT)
Re-Adjustment & God’s Grace
Obviously after this, I was put back on the medication – thankfully, still on the lowest dose. My body soon stabilized again and my routine blood tests and EEGs came back favourable each time. Admittedly though, the fear of stress triggering an episode remained with my mom and I. Anytime my mom heard even the slightest sound in the house that resembled a thump, she would immediately call out to check if I was okay. That day left a mark and so, we decided that I would remain on medication while I was still actively studying.
Looking back I see so much of God’s grace, protection and provision over my life while I battled this illness. I never got another major seizure after that day and I chose to still live my life like any other normal person. Well…. except I had to ensure I always had my medication on me. LOL!
They say people with epilepsy shouldn’t drive – but I learned anyway and was able to attain my license. Thank You God! The short term memory thing in school was challenging but God sustained me every time. Almost every term, I made the honor role list and received academic awards. He continued sustaining and strengthening me throughout my academic career and eventually, I was able to attain a scholarship to further my studies at the tertiary level – still with epilepsy.
You really cannot convince me that God is not real.
10But by the grace of God I am what I am, and His grace toward me did not prove vain; but I labored even more than all of them, yet not I, but the grace of God with me.
Big News
About a decade had passed. My existing Neurologist retired and I was assigned a new Neurologist. I continued my blood work every 6 months and routine EEGs, which would come back favourable each time. I am 23 years of age at this time and during one of my routine appointments, my Neurologist shares some life changing news. Because I was diagnosed with epilepsy in my early childhood years, the form of epilepsy I had was classified as Generalized Epilepsy.
For context, persons with this kind of epilepsy typically tend to outgrow the illness around the age of 23/24. This blew my mind because – what do you mean my chances of being free from this illness was a possibility? I could barely process this new information. It had been 16 years of medication at this point and I had grown to accept that this was my life and would possibly be my life forever. Now I had a chance to be free. What does that even look like? I was happy and perplexed.
We proceeded with the Neurologist’s guidance to continue taking the medication for one more year, at an even lower dosage, to begin the process of weaning off . After such time, another EEG would be done to determine if I can officially come off the meds.
My Mother’s Prayers & The Final Year
That year passed, now at 24 years of age and I was back for another EEG session. As my neurologist suspected, the EEG came back normal with no signs of abnormal brain activity. He explained that if I had been getting seizures, the weened dosage of medication would not have been effective in preventing any epileptic episodes. This confirmed that I was no longer considered epileptic. I was beyond happy and naturally, still trying to process this news. I took the envelope with the results he handed me at the end of the appointment and proceeded out.
This would be my very last check up. I cried in the car once we got back. I never would have thought I’d get a chance to be free from this illness.
My mom later shared that for those 17 long years, she had been praying for my recovery. Though I know my mom is a praying woman, her dedication to pray for restoration of my health for that long was…. amazing to me. Hadn’t she become tired? Hopeless? Her consistent prayers and God’s grace throughout the entire journey taught me some powerful lessons:
- God is faithful to His children
- God truly is provider – He sustains us even in our worst times and even in the small details
- Prayer is powerful and praying without ceasing can move mountains
- God’s timing is not ours
- There is no limit to what God can do
17pray without ceasing, 18in everything give thanks; for this is the will of God for you in Christ Jesus.
1 Thessalonians 5:17-18 (NASB)
As I write this post, I have officially been 6years and almost 1 month Epilepsy free.
All this to say, when I say God is gooooddd, HE IS beyond good! I encourage you to pray for those you may know who are battling illness. Pray consistently and unceasingly with big faith. Something my best friend reminded me of recently is that as believers, we have the same God today as those in the Old Testament. The same God that brought manna from the sky for His chosen people. The same God who strengthened Moses to part the Red Sea. That same God. I am reminded even in my own life, that there is truly nothing too big, small or in between for God. He can do it all and we can rest in Him because of who He is.
23Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep his promise.
I have so much more to tell you all . . . see you in the next post. . .
If you or anyone you know, suffers from Epilepsy and you would like to learn more about the illness, click here.
Connect with me on my socials for exclusive content you won’t find here!
Like and share this post and don’t forget to click FOLLOW below to SUBSCRIBE to the blog so you are notified as soon as I post a new article!
As always, to God’s blessings, peace, happiness and love!
Simone Inspires 