On Being Dead

(image from deadpoets.com)
(image from deadpoets.com)

My first experience with death was when I died, although I don’t remember it. I had pneumococcal meningitis as an infant and died a hundred times. I wouldn’t even be alive today if not for one doggedly persistent pediatrician who would not let me go. She won. I survived.

I don’t remember any of it, but in a way, it did shape my perception of death as those around me were all too familiar with the concept of my death. Though I survived, my family wasn’t sure that I would live. I was a time bomb waiting to happen as the meningitis could have caused unseen damage that would have lasting or fatal effects. I can only imagine how difficult that must have been for my parents and I can’t really do that great of a job of imagining.

Say you have a baby. That baby is healthy and fat. A few months later, she starts crying all the time and you can never get her to stop. You take her to the pediatrician and through a lot of educated guessing, they determine that she has pneumococcal meningitis. You’ve never heard of it before so you do some digging and find out that it is an infection that attacks the brain and spinal cord. The brain and spinal cord–two things that most humans really need. Today, 20% of people who get this disease will die, and 25-50% will have serious long-term brain and nervous system complications. When I was a child, the percentages were even higher. Well, fuck.

The baby is sequestered in the intensive care unit of the pediatric ward for months. To make matters worse, the doctors discover that she is allergic to penicillin, the main treatment for the disease. Every day, she dies and they bring her back. She won’t stop crying. Things aren’t looking too hopeful.

Your pediatrician, the one who brought your baby into the world, says not to give up. She will do everything in her power to save the child. She essentially moves into the ICU. You visit the hospital, and on more than one occasion, you find her sleeping next to your baby. For weeks on end, through the bleakest times, the pedatrician never leaves her side. The baby survives.

It’s not over yet though. When your baby, who is now a fragile little thing weighing almost half of what she did when she was born, is finally ready to leave the hospital after months and months, the doctors tell you that there are most likely going to be complications from the disease that they just can’t see yet because she is so young. It’s quite probable that your baby will be brain damaged, have seizures, memory loss, lack of coordination, learning disabilities, paralysis, speech problems, emotional problems like temper tantrums, depression, moodiness, aggression, nightmares and changes in character, crippling migraines, vision impairment, deafness or possibly even death from unforeseen complications.

For the next few years, you watch your baby grow and keep an extra close watch on how she moves and reacts to everything. Are all her limbs working? Can she see and hear you? Will she have a seizure? Is she less coordinated than other babies her age? Will she be able to talk? Will she be able to learn? These things are always on your mind.

At the worst of it, the doctors told you that she might not survive. They told you to prepare yourselves. How exactly does one prepare for the death of your own child? At that moment, something in you died. Some part of you, that instinct to protect your child, has been taken out of your hands. You can do nothing to save your child; it’s not in your power. You have to leave it up to a team of specialists as you sit idly by, staring at your child through an ICU pane of glass, hoping that she will survive and everything will be okay.

When everything actually is okay, when the power to protect your child is placed in your hands again, can you ever really get it back? When you are told to prepare for the worst, can you turn around and prepare for the best again? Can you return from the precipice of loss and become that child’s champion? Do you have it in you to give the child everything once more, knowing that it might not be forever, knowing that she might be damaged in a way that you just can’t see?

This is what my parents went through. Watching, waiting and hoping that I would be alright again. For years and years, they had to wait and see what side effects I would have. Since I was allergic to penicillin which led to such a severe case, it was pretty much guaranteed that I would have some. In addition to the meningitis, I had died innumerable times, which isn’t exactly good for the brain of a developing infant.

As it turned out, I have hearing loss in my right ear, photophobia (sensitivity to light), poor blood circulation, migraines and an almost omnipresent headache, depression and memory loss (although getting hit on the head with a heavy object in my teens didn’t help matters), but that was the worst of it. Other than the hearing loss, migraines and photophobia, it’s impossible to tell whether those are side effects of meningitis or if I would have had those things anyway. Other than that, I was a perfectly healthy, normal child with above average intelligence and the use of all my limbs.

I can only imagine the relief my parents felt when I started crawling and then walking, when I said my first words, when I brought home my first A from school, when I seemed to be over the worst of it. I vaguely remember visiting that pediatrician’s office when I was a toddler. I remember sitting in her office which had rich, brown leather chairs and bookshelves all over the walls. I remember being aware of some unknown significance to the visit. I remember playing with a plastic barnyard set while my mother talked to the doctor behind her desk. I remember my mother in tears as she thanked her once again. I remember the doctor picking me up, holding me in her arms and tousling my hair. She died long before I could ever properly thank her, so thank you, Dr. Sarah Schooten, for saving my life.

This post is part of the On Being Series.

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