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 study was a tonic-clonic seizure. I do keep in mind waking up half-naked with plenty of folks standing over my physique, not understanding what had occurred to me.
The native hospital transferred me to Mass Normal Hospital, the place I used to be identified with epilepsy. I didn’t perceive the severity of my situation and certainly one of 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 greatest 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 attainable. I couldn’t go on spring break with my buddies or examine overseas. My mother went to nice lengths to attach me with help teams and different folks with epilepsy, and my dad nervous rather a lot.
I solely had seizures just a few occasions a yr, however there was fixed worry and anxiousness about when it will 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 despair 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 medication to attenuate how typically I had seizures, however the uncomfortable side effects have been devastating. Some have been harming my abdomen or my liver and kidney perform. Others precipitated gum overgrowth or bleeding gums. Once I was round 16, I gained plenty of weight from taking valproic acid, one thing I needed to study to stay with for the reason that prescription was efficient.
I yearned to be impartial and needed to attend faculty 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, “Perhaps you may 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 dad and mom got here to select me up on the final day of freshman yr, they handed an ambulance on their option 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 severe 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 properly as a result of he knew and understood my epilepsy earlier than we began courting.
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 acquired fortunate. My daughter’s beginning went properly, because of the care of an OB-GYN specializing in high-risk pregnancies. Nonetheless, I wasn’t informed that I used to be at better threat for preeclampsia, which put my child and me at excessive threat for dying. 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 despair 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 data was out there, however nobody shared it with me. As an alternative, 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 known as spina bifida that had precipitated 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 choice to terminate the being pregnant. I discovered later that the valproic acid I had taken from age 16 via my early 20s isn’t really helpful for ladies of childbearing age as a result of it could possibly 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 attainable for me all through my epilepsy journey.
After the loss, I began writing letters to my child as a option to heal. This led to me making a weblog for folks residing with epilepsy. When folks on-line requested if they may share their tales, I taught myself find out 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 help I didn’t have so others could make knowledgeable choices, pursue their goals and stay 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 appropriate mixture of remedy day by day, get sufficient sleep, eat properly and train.
Early on, the most important problem for me was going through 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. Actually, 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 may be turned away from theaters, eating places and public locations till the Seventies. Being seen as dependable and impartial is important to my success, as is spreading consciousness about what residing with epilepsy actually appears to be like like. It varies from individual to individual, however epilepsy will be managed — and nobody is lower than anybody else for having it.
As we speak, my life is full with household and doing the work I really like. I’ve discovered find out how to advocate for my well being and assist others entry medical and monetary assets and have their voices heard. The compassionate mom, spouse, advocate and businesswoman I’ve turn into is stronger due to alternatives which have come to me from epilepsy, not regardless of it.
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