My Unexpected Illness Was Like a Monster—My Little Brother Saved Me

How do you make space in a family for a sudden, large, unwelcome addition? We had been through a more conventional addition of a little one. When my parents announced that I was going to have a baby brother or sister, I promptly said "Let's name the baby Ladybug." I had trapped a Ladybug in a bottle that day and had been amusing myself playing with it. Four-year-old me imagined the impending arrival as a human version of the insect, a living toy who would amuse me endlessly.

Over the next months as my mother's mid-section ballooned, we talked about how I would help take care of Ladybug, how I would play with him, give him kisses when he cried, and sing him a lullaby. I resolutely ruled out ever-changing his poopy diapers. If he refused to listen to me, I would do as my Dad did and say, "T, I, M, E, O, U, T, timeout" and put him in the child-sized timeout chair for which I was until then the only regular occupant.

I was excited when my parents brought my baby brother home. Even though they named him Nalin, I stuck with the name, Ladybug, and told people that he was "my baby". I wove him into my daily routine. After waking up, I'd run to the nursery to see if he was awake. Since he invariably would be, I would barge into my parent's bedroom and rouse them by loudly announcing, "Wake up. Wake up. The bug is up."

I had my first grand mal epileptic seizure when I had just turned 13. The sudden arrival of my epileptic self was like having a new person intruding into the life of our tightly-knit family of four.

I could be fine one minute and would start seizing up the next. Although I could not see it happening or retain any memory of it, it was like a Jekyll-Hyde transformation. I know that since I was recorded having seizures during an all-day home observation test. The person with the blank stare in the video looked like me but his movements seemed involuntary, as if he was possessed.

It was heart-wrenching to watch my mother distraught over my condition, trying to hold my head up while my muscles contracted violently. She then held me across her lap caressing my hair while I regained consciousness with a headache and then slipped into a nap.

The impression of this visual is of my family's version of Michelangelo's Pieta, personifying my mother's helplessness. All this while, Ladybug hovered quietly in the background with a worried look.

Being the oldest child, and a tall one at that, I had been treated somewhat like a grown-up after my baby brother came along. I had slipped smoothly into the role of playmate, caretaker, and substitute parent for Ladybug.

I watched over him in the pool and at the playground. I was in charge of making Nutella sandwiches for him and would forbid him from pressing the lever on the toaster or touching the spreading knife. That was solely my right. All the fuss was always over my brother, the baby of the family.

Now my epileptic self usurped the position like he was the new youngest child, monopolizing everyone's attention when he appeared. He was like a family member I could never see.

I started thinking of him as my invisible conjoined twin, one who stayed quiet and hidden most of the time until he decided to appear and unleash havoc; an invisible twin with a strain of malevolence since I would invariably wake up after his appearance with a headache and some injury.

My physicians had a knack for maximizing panic and uncertainty in my parents. Their professional specialization seemed to be in bleeding parental hopes dry. The ominous specter of several worst-case prognoses was raised in my parents. It was possible that my epilepsy could never be adequately contained, because of this I was not allowed to be in any situation in which a seizure could cause serious injury.

The nightmare seizure scenarios included me toppling from the top of the stairs in our home and crashing into the frameless glass railings, drowning in the bathtub while showering, and suffocating to death at night on bedding and pillows.

Between that and the doomsday predictions that Dr. Google is happy to provide in a few keystrokes, it seemed like I would have to be covered in bubble wrap and would have to park myself on a couch at home at all times to be safe - certainly not a dream scenario for anyone, let alone a recent teenager.

My parents resolved to be hopeful. Their first concern was for my safety while I was in bed. Although they considered installing a camera in my bedroom, they ruled it out as too intrusive and, instead, placed a baby sound monitor next to my bed. Since my grand mal seizures always started with me making a loud single gurgling sound they thought this might prove adequate.

By this time, Ladybug had begun feeling a sense of responsibility to take care of me. "I'll sleep in the same room and call out if I hear the start of a seizure or see him seizing," he offered. My brother is a light sleeper and volunteered to be my night minder.

No one had told him that he was too weak and small to fight this monster plaguing me. He was small but big enough to move my seizing body on a bed so I did not suffocate. As a teenager, I did not want to share my room but I feared a seizure more. I accepted Ladybug's offer to protect me, in a reversal of our roles.

Our beds were placed on opposite ends of the same room. This allowed us to call out and talk to each other in the dark after lights-out time. We started telling each other jokes if neither of us was sleepy. Although the day would see many fights between us, lying in our beds at night, we were always at peace. We talked in the dark and shared our lives with each other.

There would always be at least a few minutes, usually a lot more, of chatting after telling Alexa to turn off the lights each night. The specter of my seizures brought us closer and transformed our bedtime routine.

My parents figured out that my seizures almost always happened within about an hour after I woke up. Afraid that I would drown while showering, my parents had me sing scales continuously when I was in the bathroom. I had to be my own 'canary in the coal mine.'

The problem was that I would often stop singing because I became lost in thought. My father bounded up the stairs to check on me a few times when this happened. Ladybug then gained the onerous task of minding my bathroom opera and checking to make sure I was okay if I stopped. He would wait outside the bathroom, bang on the door, and use a cartoonish Indian accent to say "Sing, Brother, Sing" or an Australian accent to say "Sing, Mate, Sing," if my canary went quiet. I would reply, "You da Bug." It became an inside joke for us.

The process of coming up with medicines and dosages to bind up my epilepsy monster seemed similar to throwing spent chewing gum at a wall to see if it would stick. It involved many missteps and heartache, but, after a while, we had it reasonably well-contained. Since this hinged on me medicating myself without fail, Ladybug would unerringly ask me if I had taken my night-time pills before we dozed off. At this stage, my parents allowed me to go back to school.

Since second grade, I had ridden my bike to school. Having my own two wheels allowed me to roam throughout our small suburban city and feel free. Ladybug would ride his bike to school too and we'd go together on rides around the neighborhood. My neurologist was dead against letting me ride a bicycle on the street.

My non-compliant parents decided to let me try it anyway. Concerned that the ride to school was at the tail-end of the time I seemed most likely to have a seizure, my Dad rode with me to school for a few days.

After that, Ladybug, who was a foot and a half shorter than me and half my body weight then, decided to become my school bike chaperone. He would ride to my school and then turn around and take off for his. A 2-mile detour every morning was his way of trying to protect me. The crossing guards near my school thought it funny that my baby brother was dropping me off at school.

I haven't had a grand mal seizure in a while now. While my doctors think it is because of stable chemical levels in my blood, I feel it is due to my good luck charm, Ladybug. This pint-sized warrior's determination to protect me has largely kept the monster at bay. I wonder if Ladybug will resent my epileptic self for sucking up so much of our family's emotional oxygen during his childhood. Without it, though, he might never have found his guardian angel Ladybug wings.

Neelan Krishna is a rising senior at Highland Park High School in Dallas, Texas. He has been published in The Boston Globe, The Globe and Mail, and The Rumen Literary Journal.

All views expressed are the author's own.

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