There was a range of emotions I experienced when I was first diagnosed with epilepsy: sadness, confusion, denial, anger, stress, and fear which ultimately led to anxiety. Anxiety is a normal emotion that many individuals experience when they react to stressful situations or situations out of their control. However, my anxiety is a trigger for the onset of my seizures and can escalate the rate in which I have them. Acknowledging that fear and anxiety are not the most productive ways to deal with my disorder, I had to find ways to redirect.
At the age of 13, you would assume I was fearful of being bullied or maybe feeling isolated, however, I had already had my fair share of childhood adversity. I had a lazy eye, also known as amblyopia, in which my eyesight did not develop as it should in one eye. This also led to Strabismus, an imbalance in the muscles that position the eye that causes the eyes to cross or turn out. The muscle imbalance makes it difficult for both eyes to track objects together. As a result, my ophthalmologist suggested I wear a helmet. In pre-K, this little girl was running on a playground with a yellow helmet that had 101 Dalmatians on it. Another childhood event that helped me to live with adversity is scalp psoriasis. Yes, all my hair fell out and here I am with a dry itchy scalp and a little curly afro.
Needless to say, I’ve had it rough in my early age so fear of being bullied and isolated wasn’t new and wasn’t the fear causing my anxiety. I felt unsafe, I felt misunderstood, and vulnerable. When I expressed to others that I had epilepsy, they automatically assumed I was referring to convulsions and symptoms of tonic clonic seizures. It wasn’t until I used a “That’s So Raven” analogy to describe my type of seizure: focal onset impaired awareness seizures.
In most circumstances, first aid for seizures is used to protect the person having a seizure. Many people have misconceptions about seizures or simply do not know how to respond to a seizure. To be honest, it was frustrating thinking that no one would know what to do if I had a seizure. I was fearful that my next seizure would escalate from a staring spell to being more violent and no one would know what to do. That was scary.
I was always told that you can’t consume yourself with what you can’t control; I couldn’t control the next time I had a seizure or its severity. However, I could redirect my feeling of fear and educate others on seizure first-aid. From then on fear wasn’t to my detriment. It helped me find my purpose. Seizure first-aid is now a major part of Project Purple Butterfly’s mission.
Now, I’m not saying you won’t have those days, but I encourage you to make something of that fear. Remember that you can’t consume yourself with worry when you could be using that energy to make something greater.