He’s looking at me but he can’t see me; he’s distant. Beautiful blue eyes, just like my grandpa’s. Staring. Not moving. Not making a noise
An ominous silence. It is such a change from his usual noises. Squealing. Laughing. Cooing. Humming. He’s still staring. His pupils dilate. The fear in his face is apparent, but he is unable to cry. At this point there is nothing I can do can — only wait, watch.
His cute baby face distorts. It starts with his mouth, his full pink lips tremor. His head jolts back with force. Button nose crinkles. Eyes leap out of their sockets. A gurgling erupts from the back of his throat. It is too late to grab a towel — If he pukes it’ll have to be in my lap.
His body is limp, then tense. Electricity surges through him. The circuit board of his nervous system overloads as he pulses uncontrollably. Beads of sweat erupt on his twitching upper lip. Arms flail. Legs kick. The gurgling turns to gags. He drools and then pukes. I call for mom. He pissed himself.
The rhythm slows. His lungs fill up once again. Sporadic tremors here and there — like a light bulb flickering in a thunderstorm, fighting to stay alive as the power goes out. He’s panting. Stirring. Drenched in sweat. But breathing. Eyes shut. His tired body lays limp like a rag doll. He is helpless and vulnerable but the worst is over. He lays his heavy head down in my lap sending one last convulsion through his burdened body before he can rest.
They say having a seizure is like dying. I wouldn’t really know, I’ve never had one, but from reading various Internet forums, and an account from my uncle’s epileptic friend, it seems like a valid comparison. My brother’s seizure condition is unique because it is paired with Autism — Ethan cannot speak. He is trapped inside a body that has a tendency to sabotage him with limited means to cry for help.
The connection between seizures and autism is somewhat of a medical mystery. While epilepsy affects only one percent of the world’s population, approximately 30 percent of children with autism spectrum disorder have epilepsy and 15–30 percent of children with epilepsy have autism (Kang, Barns). While genetic similarities have been found between the two disorders, there is no concrete evidence as to why an individual affected by one of these disorders is more vulnerable to the other.
Ethan’s seizures started when he was around nine and have continued to get progressively worse as he’s grown up. The medication is supposed to stop his seizures from occurring, but recently it has not been working. To make the situation even more challenging, it is difficult to medicate Ethan. Even after countless efforts in speech therapy, we have yet to teach him how to swallow a pill. Every morning my mother crushes up the large white capsule in our mortar and pestle, sprinkles it into his breakfasts, and hopes he decides to eat. This typically works — my parents have become quite good at disguising his various medications — but when he is sick or sleep deprived he will often refuse. Unfortunately, the times when he is weak creates a perfect storm for the seizures to conquer his body.
On the days he refuses to take his medicine, the mood is tense. My mother will often refuse to take him out of the house or let him leave her sight in fear that he will have a seizure unattended. She, like a lighthouse, waits for the storm to stir while her son is out at sea. While Ethan will often act odd and seem detached preceding an episode, there is no way of truly knowing when he will seize. He can sense their presence, but he does understand he must get to a safe place before he loses control. He could tumble off the couch and hurt himself, he could fall off the equipment at the park, or he could drown in the neighborhood pool. On a recent occasion, he had a seizure in the car and got a black eye from the force of his face hitting the dashboard. This waiting game is a frustrating one but the “what ifs” of the situation are too detrimental to ignore.
As the seizures have become more frequent with age, he has become more aware of them. The fear on his face before the seizure comes on is distinct and haunting. He will provide us with hints and clues into what goes on in his brain through sounds, gestures, and expressions — but when he short circuits, his cries cannot save him and neither can we. On a few occasions he has uttered the word “black” after coming out from under his seizure’s spell. We can only assume he is attempting to describe his lack of vision.
While the fear and panic still tightens my chest each and every time I see him lose all control, I know how to handle it. The procedure is very simple. First you try your best to lay him down and get him into a safe space. This can be difficult because his six-foot tall body tenses up. Next you remove any breakable objects from around the area to make sure nothing falls and breaks because the shaking can often jostle things. Finally you watch the clock and hope the seizure stops before five minutes have past. That’s the magic number according to Dr. Edelstein. If the seizure lasts longer than that, then we have to take him to the hospital. Luckily, this has not happened yet.
If he ever has a seizure in public, we would really have a problem. The general public view seizures as something terrifying, and they are not wrong; but at least my family and I are desensitized. My mother fears the day when he seizes and someone panics and calls 911. It would be a very normal response, one that the average person would probably think was helpful, even valiant. However, the hospital cannot do anything for him. We rushed him to the hospital the first time he had a seizure only to be poked, prodded, and tortured. I recall my mother screaming “call 911 Ethan stopped breathing.” The urgency in her tone and those biting words will forever ring in my head. Countless tests were run, but of course they found nothing.
It is difficult to remain content when there are no answers, no solutions, and no explanations, but life moves on and so does Ethan. When he is not having seizures, he is happy and strong, always giggling and learning everyday. He explores the world like that of a two-year-old, curious and keen. He enjoys going on my grandpa’s boat, swimming in the pool, and eating pizza and ice cream just like any normal kid. His lack of connection to the social world makes his display of emotions genuine. He portrays what he feels in an unfiltered manner and, miraculously, he is typically grinning from ear to ear, laughing, and yearning to play.
We wait, we watch, we keep living. We live for Ethan. To hold him up when he is down, and push him to grow in his own unique and beautiful way. Life can be turbulent and sometimes we are left shaking, but the real test is if we can pick ourselves back up when things are out of control — whether it’s after five minutes, or the rest of our lives.
Kang, JQ. & Barnes, G. J Autism Dev Disord (2013) 43: 68. doi:10.1007/s10803–012–1543–7
Originally published at medium.com