November is Epilepsy Awareness Month, identified by a purple ribbon calling attention to this hard to accept, sometimes embarrassing, life-changing neurological disorder. Three years ago, I had no idea what the purple ribbon meant, until our family was suddenly thrown into this new world which turned our lives upside down.
I’ll never forget the day I got “the phone call” from my daughters’ teacher. I was walking out of the grocery store when I noticed a missed call and a voicemail. I was dumbfounded by this call because it was unusual to hear from her teacher during the middle of the day, so with bated breath, I listened to the voicemail she left. While listening, all I heard was “She had what appeared to be a seizure during class”… as you can imagine I went into panic mode and immediately called her back to find out what happened.
As a teenager, while working at my local fast-food restaurant, I witnessed a customer having a seizure. While I had never seen a seizure before, I knew by the convulsions he was having, that it was indeed a seizure, known as Gran Mal, however today it is called a Tonic Clonic Seizure. Luckily, it occurred in the later hours, while the restaurant was empty, and the only witnesses to this event were myself and my co-workers and, quite honestly, it was frightening to see.
When the convulsions started, he fell off his chair, hitting his head on the adjacent table before landing on the floor where his stiffened body continued to make jerking motions while foam was coming out of his mouth. All we could do was move the furniture out of the way, so he didn’t sustain any other injuries. Are you uncomfortable yet? I told you, this is one of the reasons why it’s an embarrassing disorder for many who suffer this type of epilepsy, however, there are other forms that are not as outwardly severe. Never in my wildest dreams did I know, years later, that I would be catapulted into this world.
According to the Epilepsy Foundation, “Epilepsy is the fourth most common neurological disorder and affects people of all ages and public misunderstandings of epilepsy cause challenges that are often worse than the seizures,” which is why I referred to it as sometimes embarrassing. I know first-hand because this first event happened when my daughter was 16, while sitting in health class, which just happened to be fourth period, just before lunch. Luckily, she was not coherent after the seizure and does not remember all the students watching, as she lay dazed, on the gurney, while the paramedics rushed her through the lunch area, to the awaiting ambulance.
Surprisingly, social media provided a platform for her peers, some she did not even know, to reach out to her to check on her and provide comforting words. We were all quite touched by the outpouring of support, because let’s face it, in this day and age of bullying and shaming, it could have been a lot worse for her after this incident.
Waiting for the diagnosis was difficult, especially for our daughter, and once the official diagnosis was made, we were filled with a plethora of emotions, from disappointment and sadness to relief mixed with anger. As her parents, we felt responsible. Could she have inherited this disorder from our genes OR was it caused by her prematurity due to my failure to carry her to term? After all, she was born 15 weeks early. Before her arrival, the doctors did all they could to speed up development, however, I still cannot help but feel some sort of guilt. As it turns out, her neurologist told us that very premature babies have a higher risk of developing epilepsy. This was hard to hear, however, even with this information, we still do not know the exact cause of her epilepsy.
Following the diagnosis, she was immediately started on seizure medication, but finding the correct formula and dosage for her condition was a period of trial and error; luckily, her body has adjusted and she is doing well on the medications specifically tailored to help her with this disorder.
Soon after her diagnosis, I searched for a local support group to learn more about epilepsy and to help my daughter cope with this new normal in her life. I found a great group called the Epilepsy Support Network of Orange County (ESNOC); a group who supports children, adults and their families afflicted with this disorder. From them, we found out that “Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States and epilepsy affects 50,000,000 people worldwide.” We are grateful that they are there to support all of us with their meetings, network of doctors, pharmacists, nurses, pharmaceutical companies, and other resources.
This is not a statistic that she chose to be a part of, however, she is starting to adjust to her new norm and feel more comfortable talking about epilepsy and her journey, to help spread the awareness it deserves. At this point, our only recourse is to provide her with comfort, support, and the knowledge required for her to navigate through life. We often wonder why she must deal with yet another diagnosis, and ask ourselves, “Wasn’t it enough that she was born prematurely, spending the first 105 days of her life in the NICU?” But she is one of the strongest people I know, and I firmly believe, that if anyone could face this head on, she can. So, if you know someone who has epilepsy, take some time to learn more about this disorder so you can fully understand and support, as necessary. I know it will be appreciated.
Am’s View column is posted on alternate Sundays.