As informed to Marnie Goodfriend
March 26, 2023, is Purple Day, Supporting Epilepsy Around the World.
I had my first seizure the summer season 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 a number of individuals 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 buddy.
I grew up in a tight-knit Irish Catholic household that did their greatest to deal with my epilepsy prefer it was no massive deal, like they’d it beneath management. I swam and skied alongside my sisters, went to highschool and traveled. However some issues weren’t attainable. I couldn’t go on spring break with my associates or research overseas. My mother went to nice lengths to attach me with help teams and different individuals with epilepsy, and my dad nervous rather a lot.
I solely had seizures just a few occasions a yr, however there was fixed concern and nervousness about when it will occur once more and whether or not I’d be OK. Once we moved from the town to the suburbs two years earlier than my first seizure, I’d developed nervousness 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 always altering my drugs to attenuate how usually I had seizures, however the negative effects have been devastating. Some have been harming my abdomen or my liver and kidney operate. Others triggered gum overgrowth or bleeding gums. After I was round 16, I gained a whole lot of weight from taking valproic acid, one thing I needed to be taught to dwell with for the reason that prescription was efficient.
I yearned to be unbiased and wished to attend faculty in New York Metropolis. This was an actual supply of tension 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, “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 drugs for months at a time, and when my dad and mom got here to choose me up on the final day of freshman yr, they handed an ambulance on their technique 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 severe situation that was not going away.
I met my husband throughout our freshman yr of faculty, however we didn’t date till after we graduated. Coincidentally, he turned an EMT, then a paramedic and labored for the hearth division. I joke that I married properly as a result of he knew and understood my epilepsy earlier than we began relationship.
After residing collectively for about 5 years, I used to be shocked to find that I had missed my interval although I used to be on contraception tablets. My husband’s first phrases to me have been, “It’s worthwhile to name your neurologist.” I used to be nervous about how I’d navigate being pregnant with epilepsy, however I obtained fortunate. My daughter’s delivery went properly, due to the care of an OB-GYN specializing in high-risk pregnancies. Nevertheless, I wasn’t informed that I used to be at better 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 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 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 newborn had a neural tube defect referred to as spina bifida that had triggered 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 resolution to terminate the being pregnant. I realized later that the valproic acid I had taken from age 16 by my early 20s shouldn’t be really helpful for girls 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 attainable for me all through my epilepsy journey.
After the loss, I began writing letters to my child as a technique to heal. This led to me making a weblog for individuals residing with epilepsy. When individuals on-line requested if they may share their tales, I taught myself code and launched an internet site. That’s how Living Well With Epilepsy was born. I wished individuals to have all the knowledge and help I didn’t have so others could make knowledgeable choices, pursue their desires and dwell significant lives.
At this level, I haven’t had a seizure for 20 years, which has solely been attainable as a result of I take the proper mixture of medicine every day, get sufficient sleep, eat properly and train.
Early on, the most important problem for me was going through the stigma of epilepsy. Folks usually assume that somebody with epilepsy might have a seizure at any second and that we’re not as succesful due to our situation. In truth, it was unlawful for individuals 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 Seventies. Being seen as dependable and unbiased is important to my success, as is spreading consciousness about what residing with epilepsy actually seems like. It varies from individual to individual, however epilepsy may be managed — and nobody is lower than anybody else for having it.
At present, my life is full with household and doing the work I really like. I’ve realized 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 develop into is stronger due to alternatives which have come to me from epilepsy, not regardless of it.
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