"Growing up, I wasn’t your typical child. In preschool, while all the other kids were playing and learning their letters and numbers, I was getting rushed away from school in an ambulance. By the age of 6, I couldn’t remember my ABC’s and wasn’t able to process information as well as my peers. My parents decided it was best for me to repeat my first year of school to give my brain more time to absorb information.
It was a word I didn’t understand very well at the age of 6, but I had Epilepsy. By this point, I had been in Status Epilepticus three times with grandmal seizures. I don’t have much memory from my early childhood because of it, but the doctors told my parents that I would most likely grow out of it and all would be well. At the age of 7 I went off anti-epileptic medicine and showed no signs of Epilepsy returning.
Fast forward to my early twenties; I was loving college and excited for what life had in front of me, and then one day everything changed. I remember being in my apartment and this weird sense came over me. I had a strong smell in my nose and a weird taste in my mouth. My head went numb and I saw a weird static vision. My first thought was, “Woah, did I eat today?” And then it was, “I must just be stressed.”
As time went on these spells did not stop; they increased. After over analyzing what could possibly be wrong with me I decided they must be anxiety attacks and I should go to therapy to find their underlying cause.
After two years of therapy and the continuation of these spells. I was getting more and more depressed. I couldn’t seem to get to the root cause of what was wrong with me and nothing was helping. Finally I decided I would go to my doctor.
One quick description of my symptom to my doctor and she easily decided I had anxiety and depression and should go on antidepressants. At this point, I was running out of options and thought, “Well if this works, great!” Needless to say the antidepressants didn’t work and the frequency and intensity of my spells only increased. I would go through periods when I only had partial consciousness. It would be difficult for me to move or speak, and now looking back, times in which I lost complete awareness.
These symptoms lasted for six years undiagnosed! Until one night my brain had had enough. In January of 2018 I woke in the middle of the night to two paramedics standing over me and my husband picking me up because I couldn’t walk. Later, I found out that I had had two grandmal seizures. The hospital quickly diagnosed me with Epilepsy and prescribed an anti-seizure medicine. This point was an all time low for me. I already had these extremely weird spells going on and now I have to deal with Epilepsy too! No one ever considered the thought that the two were correlated, not even the hospital doctors.
After some active googling I discovered that the spells I was having the last six years could actually be called auras and they could be connected to Epilepsy. Things were finally starting to click. After many tests, and many different neurologists and hospitals it was discovered that I have Mesial Left Temporal Lobe Sclerosis, which has caused me to have focal seizures the last six years. My neurologists agree that the sclerosis was most likely caused by my three episodes of Status Epilepticus as a child. Over time, this caused me to have focal seizures that went untreated for years, ultimately causing the electrical activity in my brain to explode resulting in the two grandmal seizures I had in January.
I have been on different seizure medicines, most having terrible side effects, and none that have stopped my focal seizures. My language and memory have been impaired and my doctors have explained that they will only worsen with time if my epilepsy isn’t treated correctly. At this time, I have an average of three focal seizures a week, which often leave me disoriented, afraid and anxious. My doctors have decided that Epilepsy surgery offers me the best chance to be healed of Epilepsy, be able to go off medicine, and retain my memory and language. And as crazy as it sounds to be hopeful for brain surgery, I am! The thought of not having to wake up every day wondering if I am going to have seizures sounds amazing.
With the option of surgery ahead of me I am hopeful, but I can’t forget the good. Epilepsy has also done in my life. That’s right, the good. Being sick all these years has helped me to rely on others and surrender the stress of trying to control everything. I am so thankful for the community that has surrounded my family in this time and honestly grateful for how it has humbled me to realize I can’t do this on my own.
Epilepsy has also taken the blinders off my eyes to connect with other people in their suffering. Though no one’s suffering is the same, Epilepsy has given me a greater ability to meet people where they are at. Being sick and unable to drive can be an isolating thing, but when people speak out and foster connection through their vulnerabilities true relationships are made, which for me, encourages me forward.
I hope my story can be used to connect with others so they don’t feel alone in their sufferings. You can follow along on my journey with Epilepsy on my blog, www.abigrescue.com or reach out with any questions at email@example.com.