Immunity Forgot the Arabian Princess

Medicine is full of sadness. You could argue that medicine is sadness. I remember a guy in university who said to me, “Why would you want to be a doctor? It’s all old and sick people.” Yes, I suppose the world is sad enough without having to work in it.

I don’t cry that often in medicine but I feel the sadness. I don’t share my sadness with my colleagues. I cannot predict the things that will make me cry. Some things only put tears in my eyes. Some things put a lump in my throat. Some things that are profoundly sad don’t make me sad at all. I am a big fan of analyzing things but I don’t try to analyze my medically-induced sadness and extract a pattern.

There was a little girl on the ward in pediatrics. Eight years old. She was from somewhere in the Arabian Peninsula, not that peninsulas mean much to children. Had that cute little-girl haircut – a bob. She was already on the ward when I arrived for my pediatrics rotation. She had Sub-acute Sclerosing Pan-Encephalitis. SSPE – the dread complication of measles. Measles is caused by the measles virus and usually causes a fever and rash, which is not so bad. The bad thing is the complication. The virus sits dormant for some years after the initial measles infection and then lethally reactivates in the brain. There was uncertainty as to whether this little girl had ever been immunized in her country of origin.

The Measles vaccine is traditionally combined with the Mumps vaccine and the Rubella vaccine, so it’s called MMR. Each of the three components is a ‘live virus.’ Why give someone a live virus? Isn’t that like asking a rabid dog to bite you in order to protect yourself from rabies? No. The virus is weakened in a laboratory so that when it enters your body in vaccine form it cannot cause the full-blown disease; in its weakened state it called an ‘attenuated virus’ (to attenuate is to weaken). The benefit is that the white blood cells of your immune system remember the virus and kick the shit out of it when it shows up for real. That way, you don’t get measles or its complication.

She was not going to get better, only worse, and would probably die within a few months. She had rapidly declined from a singing and jumping eight year-old to a vegetable. She had several seizures a day and made moaning sounds. The electrical recording of her brain (EEG a.k.a. Electro-Encephalo-Gram) showed ‘Radermerker complexes.’ If there are Radermerker complexes then you have SSPE. She had a feeding tube but she could breathe on her own. Her eyes opened but did not engage with anything. She wore white flannel pajamas with blue stripes. I remember the crust at the corners of her mouth.

Being in her room did not affect me that much. I felt a certain detachment. Detachment doesn’t mean you’re emotionless. When I put my stethoscope on her chest I could feel the small rise and fall. Her hands were small and her nails were very short. She had dark, dark hair. Greasy now but probably poufy in better days. Her eyes were big and brown, like mine, but held in a squint. When she had a seizure her arms would stiffen and her eyes would roll a little bit to the right. This would last for about thirty seconds. Here my detachment turned to sadness. I thought, this sucks. It sucks to be this little eight-year old who will never drink a Slurpee at 7–11 with friends. She’ll never be nervous at that exact moment the safety bar irrevocably clamps you into a roller coaster car. She will never feel that small sense of satisfaction when she points out the Big Dipper to her own child. My detachment is not so much an emotional one, as an intellectual one. I cannot answer the questions of why this happens.

A family meeting was called. These are big meetings to figure out how the care of a complex patient is proceeding and what the goals are. What are the goals for the parents of a dying child? The question seems absurd.

The pediatrician was present. The social worker. The physiotherapist. The occupational therapist. The nurse. The head nurse. The dietician. The pharmacist. The intern (me). We were assembled at a large table, waiting for the parents to show up. Some technical things were discussed, like the caloric value of tube feedings and doses of anti-convulsant drugs. The parents arrived. The father was a small man with short hair and soft eyes. His beard was trimmed, no more than a day’s growth, and the swarthy skin of his face and neck contrasted with the peach color of his long-sleeved shirt. It was free of wrinkles and open at the collar. He walked with both arms slightly bent at the elbows, but locked, as if the natural swing were inhibited.

I wondered, What are the flavors of bravery? Do we have 20 words for this? What bravery must a man have to enter a room that offers no solace, no hope, only the exquisitely detailed characterization of his child’s decline? Pan means all. Encephalon means brain. -itis means inflammation. Panencephalitis means inflammation of the entire brain. That word, and your daughter, in the same sentence … only a brave man gets by with just stiff arms.

His wife was slightly bigger than he was and followed behind him. Her head was covered by a shawl. No veil. She had a chubby, kind face. She was the daughter minus the disease, but the mother plus the vicarious pain. I pictured her at home, using a knife to slice a tomato on the countertop, then stopping. Having to sit down on the floor and sob. She sat to her husband’s right. The medical team all offered sincere smiles. Not those big toothy ones, rather the ones where you bring your lips together tightly and tilt your head forward about ten degrees. A small act of deference. The pediatrician spoke, and restated the diagnosis, that their daughter had a “very serious degenerative disease of the brain.” She sensed quickly that this was a short burst of medicalese and added, “a very bad infection of the brain.” The father nodded politely. The wife did not move. I looked at her eyes. They were red. They had another daughter who was healthy, thank God. The pediatrician mentioned that in the previous meeting the issue for the parents to consider was the code status of their daughter, namely the medical response to a Code Blue. It’s called a Code Blue because when a patient has cardiac arrest or respiratory arrest they traditionally turn blue in the lips. Actually, the lips turns cyan (a bit darker than turquoise) but “CODE CYAN. FIVE SOUTH” would not be as effective. People might think a can of paint had been spilled in Aisle 5 and carry on shopping while you were croaking.

The pediatrician was a genuinely nice lady. I liked her. She was skilled in these things and put it nicely, if you could call it that. “We had talked about what to do if [daughter’s name. Pick any one you like]’s heart was to stop or if she was to stop breathing.”

I felt what could be compared to nausea. Not at all the feeling that I was going to be sick, but the feeling that this was a situation where I would inevitably cry in the near future. Not dissimilar from trying to stave off puking, I started to breathe slowly and deeply through my nose. I’ve spent meaningful portions of my life on my face doing push-ups on concrete or gravel, feeling the joy of air going through my nose. I love the feeling of air. They say every breath you take contains 900 molecules of the same air that Leonardo da Vinci breathed. When I finish my push-ups I remove the small pieces of stone from my hands. They do not ever break the skin, they just indent it. Sometimes a drop of sweat will fall from my nose and spread onto that stone altar. I am immune because it is the stones themselves that give me life.

My best friend killed himself. He and I used to do push-ups on the concrete. We would run and do push-ups and then run again. He was both faster and stronger than I was. He had a crazy laugh and was the most resourceful person I ever met. But his skin was broken.

I watched the father’s face carefully. His eyes were now moist. He said nothing. What was that poor fucking wretched man thinking? I kept imagining a girl in a dress. I wondered what the word for daddy was in their native tongue. I imagined her laughing unabashedly, as eight-year olds will do. I had to look towards the door and blink my eyes quickly. Blinking is not really a great way to evaporate a film of tears. The husband and wife did not look at each other. I was reminded of stories where the death of a child results in divorce because the parents don’t know how to console each other. I imagine they lose all intimacy. Or perhaps they were both reflecting.

The father spoke quietly and with that foreign tongue that I love to hear when I travel to distant lands. It is the words of English with the end of each consonant burnished with some unfamiliar cloth. “It is best if she does not suffer.”

Who was suffering? I could fucking see his suffering. Yet he was so noble. That was what humbled me so. I could sense his halo of suffering. I wondered what particular image of her he was holding. Laughing with her sister? Sleeping? Skinning her knee and screaming? Drawing with pencils? Seeing her for the very first time? I imagined him when he would watch his daughter die. Holding that little hand with the short little nails. Watching his daughter’s chest rise for the last time. Knowing that in the blank space of each expected breath that her heart was no longer beating. Standing there and not doing anything for that tiny little train wreck. Like a fawn who is warm but dead.

Some blessed soul had put Kleenex on the table but it was still out of reach of my orangutan arms. I symbolically reached for it and the box was picked up and handed to me. I could hear the tissue tearing because it was a new box, tightly stuffed. I extracted several half-sheets and folded them into a shape that would fit around my nostrils. I do not mean to convey that I have funny nostrils. I think they are average ones. I blew my nose. The husband looked at me. His eyes, like his daughter’s, were dark brown, and covered with a glaze of tears. He looked like a man in a museum who is absorbed by a display, comparing it deeply to some particular thing. I blew my nose again. The mother looked at me for a few seconds and smiled.

The roles were wrong. All wrong.

Have you ever watched a nature documentary where the mothers of the animal kingdom have this extraordinary care for their young? There is such tenderness. For animals that cannot do long division or bake a pie, there is such a profound level of tenderness. What God creates an antelope with such a level of love? They put their head down and nuzzle their spindly little calf. Nudging it. Touching it with their face only because they have no hands. I cannot call that instinct. I have to call that love.

I do not think I have ever been filled with more sorrow. Not even when my best friend died. That was loss. This was something different. Dissolution. An error in God’s algorithm. There was no point in trying to check my tears. It’s uncouth to snort your tears so I put my soggy and disintegrating Kleenex in my hand and pulled more out of the box. The room had a brief pause for me. I reminded myself of the person who can’t be a doctor because they are too emotional. My solace was in knowing that this strange kind of connection only happened about once every eighteen months (to be mathematical about it). I was acutely aware that I was the only person really giving it up. Did I miss the meeting where everyone else cried? Was this my booster shot? Would I be as inured to this pain in another five years? I was given sincere pursed-lip smiles by the medical team.

“When her heart stops we will do nothing.”

I shall never forget that man’s quiet, understanding voice, delivering himself pain. I can’t even write this recollection without tears. I have asked myself if these tears are cathartic. But I do not think so. It is simply an event that was so incorrect. It was a violation of something. But I don’t know what that something is.

*

After the meeting I went to an empty ‘call room’ (that’s a room where we attempt to sleep when we’re on call). My doctor girlfriend found me. I bawled some more and I could snort now. I wiped my sleeve across my face, mopping up that slippery stuff that came out my nose. The passage of tears through the nose must alter them, adding some secretion. You wouldn’t want slippery tears like that coming directly out of your eyes. You’d get those black streaks and look like a dumb cheetah.

“I don’t understand why this makes me so sad,” I said. “I don’t even have children.”

My doctor girlfriend was puzzled by my sadness. Though she was a kind person, she had her own criteria for crying, as we all do I suppose. Sub-acute Sclerosing Pan-Encephalitis was but an interesting affliction. Patients with SSPE suffered from ‘cortical blindness,’ which meant their eyes worked but the visual cortex of their brain could not see the images. The cortex is the outer 4 millimeters of the brain where all the deep thinking occurs. You’d think all the deep thinking should take place deep inside the brain where it’s safer. Maybe surround it with a layer of stones. Measles would probably get in there anyway.

My doctor girlfriend had doctor duties so she left. Like most doctors, she was a professional at selective empathy.

I could not get it together for about thirty minutes.

*

I watched a short video once about a guy on the seashore where a bunch of starfish had been beached. Do starfish get beached? Whatever. Somehow they ended up on shore, desiccating in the sun. The guy was picking them up one at a time and returning them to the sea. Another guy came up and said, “Do you really think you’re making a difference?” The guy picked up a starfish and put it in the water. “I made a difference to that starfish.”

*

Reverence. Reverence for life. Every cell in the human body clings to life. It doesn’t immediately die when you take it out of the body. It survives as long as it can. But deprived of fluid and blood, it is a biochemical orphan and cannot interact with the atmosphere. Unable to utilize oxygen, the cell will revert to burning sugar in the ancient way, less efficiently, producing 19 times less energy. But still, that energy will be devoted to the last bastion – maintaining the integrity of the membrane that surrounds the cell. That membrane is life. It is so thin that its width is measured in wavelengths of light. That is how we cling. It is only when the membrane gives way that the cell dies, mortally ruptured, hemorrhaging cytoplasm.

If you put a drop of ammonia in a tank of pond water, even an amoeba – a single-celled creature – moves away from it.

What sort of deprivation is it to lose your life at the age of eight? I wonder, when does it make sense to hand it over, to stop clinging to life, to just dry up in the sun?