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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 dad and mom 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 plenty of folks standing over my physique, not realizing what had occurred to me.
The native hospital transferred me to Mass Basic Hospital, the place I used to be recognized with epilepsy. I didn’t perceive the severity of my situation and one in every of my first ideas was about whether or not I might nonetheless go on an upcoming trip with a pal.
I grew up in a tight-knit Irish Catholic household that did their finest to deal with my epilepsy prefer it was no large deal, like they’d it beneath 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 associates or examine overseas. My mother went to nice lengths to attach me with assist teams and different folks with epilepsy, and my dad anxious rather a lot.
I solely had seizures a number of occasions a 12 months, however there was fixed worry and anxiousness about when it might occur once more and whether or not I’d be OK. After we moved from town to the suburbs two years earlier than my first seizure, I’d developed anxiousness and depression from feeling like the brand new bizarre child. The anti-seizure medicines I used to be prescribed made these psychological well being points worse.
The neurologists I noticed have been continuously altering my drugs 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 prompted gum overgrowth or bleeding gums. Once I was round 16, I gained a whole lot of weight from taking valproic acid, one thing I needed to be taught to reside with for the reason that prescription was efficient.
I yearned to be unbiased and needed to attend school in New York Metropolis. This was an actual supply of hysteria for my dad and mom, 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, “Possibly 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 drugs for months at a time, and when my dad and mom got here to select me up on the final day of freshman 12 months, they handed an ambulance on their strategy to the campus. I used to be being rushed to the emergency room with a protracted 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 12 months of faculty, however we didn’t date till after we graduated. Coincidentally, he turned an EMT, then a paramedic and labored for the fireplace division. I joke that I married effectively as a result of he knew and understood my epilepsy earlier than we began courting.
After dwelling collectively for about 5 years, I used to be shocked to find that I had missed my interval though I used to be on contraception tablets. My husband’s first phrases to me have been, “That you must name your neurologist.” I used to be anxious about how I’d navigate being pregnant with epilepsy, however I obtained fortunate. My daughter’s delivery went effectively, due to the care of an OB-GYN specializing in high-risk pregnancies. Nevertheless, I wasn’t informed that I used to be at higher danger for preeclampsia, which put my child and me at excessive danger for demise. I ended up delivering per week early due to it.
Jessica and her daughter at an epilepsy consciousness stroll.
I additionally didn’t know that postpartum depression 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 accessible, 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 prompted 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 after we made the heart-wrenching determination to terminate the being pregnant. I discovered later that the valproic acid I had taken from age 16 by way of my early 20s is just not really useful for ladies of childbearing age as a result of it might probably trigger neural tube defects in being pregnant — and that’s precisely what occurred. It was infuriating that nobody had informed me the entire dangers or what was potential for me all through my epilepsy journey.
After the loss, I began writing letters to my child as a strategy to heal. This led to me making a weblog for folks dwelling with epilepsy. When folks on-line requested if they may share their tales, I taught myself code and launched a web site. That’s how Living Well With Epilepsy was born. I needed folks to have all the data and assist I didn’t have so others could make knowledgeable selections, pursue their desires and reside 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 appropriate mixture of treatment every day, get sufficient sleep, eat effectively and train.
Early on, the most important problem for me was going through the stigma of epilepsy. Folks typically assume that somebody with epilepsy might have a seizure at any second and that we’re not as succesful due to our situation. Actually, it was unlawful for folks with epilepsy to marry in 17 states until the 1950s (with one holdout ready to repeal the regulation 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 could be managed — and nobody is lower than anybody else for having it.
In the present day, my life is full with household and doing the work I really like. I’ve discovered 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 change into is stronger due to alternatives which have come to me from epilepsy, not regardless of it.
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