As informed to Marnie Goodfriend
March 26, 2023, is Purple Day, Supporting Epilepsy Around the World.
I had my first seizure the summer time earlier than eighth grade as I used to be strolling down the corridor to take a bathe. My mother and father discovered me handed out in a towel. I do not keep in mind it as a result of I had a second of amnesia earlier than having what I’d later be taught was a tonic-clonic seizure. I do keep in mind waking up half-naked with a number of folks standing over my physique, not realizing what had occurred to me.
The native hospital transferred me to Mass Normal Hospital, the place I used to be recognized with epilepsy. I didn’t perceive the severity of my situation and one in all my first ideas was about whether or not I may nonetheless go on an upcoming trip with a good friend.
I grew up in a tight-knit Irish Catholic household that did their finest to deal with my epilepsy prefer it was no huge deal, like they’d it underneath management. I swam and skied alongside my sisters, went to high school and traveled. However some issues weren’t potential. I couldn’t go on spring break with my pals or examine overseas. My mother went to nice lengths to attach me with assist teams and different folks with epilepsy, and my dad nervous loads.
I solely had seizures a number of instances a yr, however there was fixed worry and anxiousness about when it will occur once more and whether or not I’d be OK. Once we moved from town to the suburbs two years earlier than my first seizure, I’d developed anxiousness and melancholy from feeling like the brand new bizarre child. The anti-seizure drugs I used to be prescribed made these psychological well being points worse.
The neurologists I noticed have been continuously altering my medication to reduce how typically I had seizures, however the unwanted effects have been devastating. Some have been harming my abdomen or my liver and kidney operate. Others brought about gum overgrowth or bleeding gums. After I was round 16, I gained plenty of weight from taking valproic acid, one thing I needed to be taught to dwell with because the prescription was efficient.
I yearned to be unbiased and needed to attend school in New York Metropolis. This was an actual supply of tension for my mother and father, however they agreed to let me go. I wasn’t as nervous about epilepsy as I ought to have been. My pediatric neurologist had made the error of claiming, “Perhaps you will simply develop out of it.” I took that to imply that I used to be cured.
Whereas I used to be in school, I did not take my medication for months at a time, and when my mother and father got here to choose me up on the final day of freshman yr, they handed an ambulance on their method to the campus. I used to be being rushed to the emergency room with a chronic tonic-clonic seizure from not having taken my meds. That was my wake-up name that I had a critical situation that was not going away.
I met my husband throughout our freshman yr of school, however we didn’t date till after we graduated. Coincidentally, he grew to become an EMT, then a paramedic and labored for the hearth division. I joke that I married effectively as a result of he knew and understood my epilepsy earlier than we began relationship.
After dwelling collectively for about 5 years, I used to be shocked to find that I had missed my interval regardless that I used to be on contraception tablets. My husband’s first phrases to me have been, “You’ll want to name your neurologist.” I used to be nervous about how I’d navigate being pregnant with epilepsy, however I acquired fortunate. My daughter’s start went effectively, due to the care of an OB-GYN specializing in high-risk pregnancies. Nonetheless, I wasn’t informed that I used to be at higher threat for preeclampsia, which put my child and me at excessive threat for demise. I ended up delivering every week early due to it.
Jessica and her daughter at an epilepsy consciousness stroll.
I additionally didn’t know that postpartum melancholy is common in women with epilepsy, and I didn’t obtain assist from my healthcare supplier when it occurred to me. It’s irritating to know that this info was obtainable, however nobody shared it with me. As a substitute, I used to be blindsided and felt alone.
My second being pregnant was additionally a shock. My husband was scheduled for a vasectomy later that month, and I used to be nonetheless on contraception. At 19 weeks, we found the infant had a neural tube defect known as spina bifida that had brought about hydrocephalus that had superior past the purpose of viability. We had already named her and deliberate on telling our daughter about her new child sister quickly once we made the heart-wrenching determination to terminate the being pregnant. I realized later that the valproic acid I had taken from age 16 via my early 20s shouldn’t be advisable for girls of childbearing age as a result of it could actually trigger neural tube defects in being pregnant — and that’s precisely what occurred. It was infuriating that nobody had informed me all the dangers or what was potential for me all through my epilepsy journey.
After the loss, I began writing letters to my child as a method to heal. This led to me making a weblog for folks dwelling with epilepsy. When folks on-line requested if they might share their tales, I taught myself tips on how to code and launched a web site. That’s how Living Well With Epilepsy was born. I needed folks to have all the knowledge and assist I didn’t have so others could make knowledgeable choices, pursue their goals and dwell significant lives.
At this level, I haven’t had a seizure for 20 years, which has solely been potential as a result of I take the suitable mixture of remedy day by day, get sufficient sleep, eat effectively and train.
Early on, the largest problem for me was dealing with the stigma of epilepsy. Folks typically assume that somebody with epilepsy may have a seizure at any second and that we’re not as succesful due to our situation. In reality, it was unlawful for folks with epilepsy to marry in 17 states until the 1950s (with one holdout ready to repeal the legislation till 1980). Folks with epilepsy is also turned away from theaters, eating places and public locations till the Nineteen Seventies. Being seen as dependable and unbiased is crucial to my success, as is spreading consciousness about what dwelling with epilepsy actually seems to be like. It varies from individual to individual, however epilepsy will be managed — and nobody is lower than anybody else for having it.
At the moment, my life is full with household and doing the work I like. I’ve realized tips on how to advocate for my well being and assist others entry medical and monetary sources and have their voices heard. The compassionate mom, spouse, advocate and businesswoman I’ve grow to be is stronger due to alternatives which have come to me from epilepsy, not regardless of it.
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