Tuesday, September 5, 2017

Taking care: the big whoop

I wake everyone in the house with my coughing except my husband.  The fits can be hysterical and leave me spent.  If she's around, my littlest continuously says "God bless you" and "I hope you feel better" until the coughing stops.  My eldest asks if I need a glass of water.  I always take it but it doesn't really help.  Then I try to get up and continue the day as though I do not have whooping cough, but a mild summer cold.  My husband is doing the same.

Sickness is weakness.  It is vulnerability and it is getting left behind whilst the pack proceeds.  It is side eyes and hands thrust on my warm head angry that I came down with whatever it is.  It is fear and loathing.  It is the frightening sense that I won't or can't be productive, that someone will find out I am not as strong as projected or promised.  That I am not invincible.  That I am not superhuman.  That I am human.  It is the stories of drowned Africans thrown overboard because they might infect the entire cargo.  It is sick slaves killed or left to die lest they not infect the tiny quarters of the others.  It is the infirm in a tribe left at the edge of camp to fend for himself or to find a place to slowly die in private or be attacked by ferocious animals.  It is the prisoner in an internment camp ravaged by disease and giving up his food for someone else to survive.  It is a Darwinian belief that I am not at the top of the human evolutionary chain and that I will die.  I will.

I used to joke that I didn't want to tell my father when I was sick because I was afraid that he'd be mad at me.  I knew he was hurt for my hurt and afraid but I couldn't do much to get better any faster and his pacing made me feel guilty and scared.  He couldn't talk to me.  I would try to will myself to good health as I drifted off in fevered dreams or try not to let it out when I felt my insides twist and threaten to force me to vomit or worse.  My mother would look in periodically but would stay at her usual distance.  She didn't talk to me.  It was when I was able to care for my own sick children, nurse them through colds and fevers and sore gums and teeth breaking through, and lay cold compresses on their heads and stroke their arms, snuggle them close as I wished their pain away, that I accepted that illness is just part of the human experience and that I surely didn't want them to feel a burden or a failure as I had.

Whooping cough is called the 100 days cough and though I can't tell exactly where I am on that timeline, it does feel like I have been coughing forever.  It came on like allergies or a summer cold and hit my oldest daughter first.  She coughed for weeks and at night she'd sometimes vomit from its force.  I'd get cross with her, certain she just wasn't trying hard enough to clear her throat, and would then spend the night by her side.  I asked her if she was sure it was as bad as all that and then rub her down with Vapor Rub.  She woke up in the morning OK and then it would start up again in the night.  That was as school was ending.  In June. 

I took her to the doctor as soon as school was out for summer.  After careful review of her body, her lungs, her eyes, ears, and nose, the doctor concluded that she had just a run of the mill upper respiratory infection.  He couldn't see anything and advised me to give her a cough medicine at night to ease the cough and encouraged me to continue with her daily Claritin.  Of course this didn't feel right to me but I left her to herself and followed the protocol.  And she didn't get better at all.  In fact, she got worse.  She coughed and gagged all night.  She fought to breathe.  She'd inhale and seem to stop breathing for a moment and I'd run to her rescue, always finding her in the middle of a massive inhale that stilled the room.  A week before we left for Barbados, I sent her back to the doctor and demanded antibiotics.

She never developed the whoop, the curlicued bark at the end of that desperate choke of a cough and though her symptoms matched the basic description of pertussis or whooping cough, this diagnosis never crossed the minds of either doctor.  Children are vaccinated for pertussis as part of the DTaP and then Tdap booster.  There are five doses of the DTaP that are given from 2 months until some time between the ages of 4 and 6 and the Tdap is recommended for people between the ages of 11 and 64 and what comes next will alert you to why.

The DTaP decreases in effectiveness as children get close to the age of 11 when the Tdap is administered.  But because whooping cough has been out of the general health conversation for so long due to these vaccines, very few have memory of it or expectation of seeing it which allows it to spread quickly and silently.  One week before my daughter returned to the doctor for a course of antibiotics, one of her best friends developed a cough so severe and violent that she too nearly threw up each time she coughed.  And then the big whoop.  The big whoop is a big deal because with the whoop there is no denying.  With the whoop there is concern and there is testing.  Her friend was tested first with a swab that was negative.  After meeting with a pulmonologist, her mother decided to follow up with the more precise blood test.  The blood test confirmed that it was pertussis.

Immediately I began trying to solve the puzzle to which, until moments earlier, I'd not realized I'd held so many pieces.  My daughter had been coughing for months.  So many around us described a cough that could not go away, bruised ribs, vomiting, and tears.  There were the endless nights of kids getting up coughing and having difficulty breathing.  It seemed like just a terrible allergy season.  So many diagnoses of bronchitis and other respiratory illnesses that seemed not to go away with multiple rounds of antibiotics.  Without a rash or telltale sign to certify its presence (not everyone develops the whoop), whooping cough was weaving through the community without a batted eyelash.

Fortunately, my daughter was treated with the antibiotic prescribed to render pertussis no longer communicable and her symptoms lessened.  We went on vacation.  Our friends were treated and, as is necessary when a positive diagnosis is made, were contacted by the Center for Disease Control (CDC) to whom they'd reported their symptoms, contacts, and treatment.  

My cough came and went so I felt confident that it was caused by my allergies.  I got back on my allergy medication even though it made me drowsy when it wasn't supposed to.  I continued to cough.  While on vacation I'd cough and occasionally find myself short of breath but I was sure it was my excess "vacationing" and thought nothing of it.  I was tired, I figured, and my body was letting me know that I was too old for these shenanigans.  When I was back home and taking a dance class, I noted that I felt short of breath again but assumed it was due to my sluggish, sunbed-and-cocktail lifestyle over the past week and change.  And then the cough that dropped me to the floor.  I couldn't breathe at all.  Heaved and then vomited and then continued coughing.  I was crying on the floor in the bathroom and couldn't catch a breath.  I just kept coughing and coughing and coughing and coughing.  My children were terrified and I could not reassure them because whenever I opened my mouth to speak I'd immediately start another fit.  My husband stood in the doorway and felt terribly sorry for me and very afraid and did not come any closer.

I was not comforted by his presence and he made no attempt to comfort me.  He wanted to know what 'pertussis' was called in French so he could better understand what was wrong with me.  I told him I felt terrible that I had doubted our girl when she couldn't stop coughing.  I cried on the floor next to the toilet because I'd asked my girl to stop coughing so much and I knew in this moment that she couldn't have.  He looked up the word 'pertussis' on Wikipedia and changed the language to French to find 'coqueluche.'  He read and cross-checked references.  He understood, he said.  He gave me details and statistics.  He told me it was what he thought it was.  He said, "poor Honeybee" as I coughed and coughed on the floor.  I held up my hands and asked him to pull me up so I could get in the bed and he walked me there and went to his office.  I called the doctor in the morning and was given a morning appointment.

Without a nasal swab or a blood test, it is not easy to determine pertussis in an adult.  I didn't whoop.  But I did have a consistent dry cough, no mucus or phlegm in the lungs like bronchitis.  That was ruled out.  I had no fever and no ear infection.  My throat was raw but there was very little drip.  When the doctor listened to my chest and my lungs she didn't hear much.  I told her I'd been exposed to whooping cough and that I suspected that my daughter had had it because she'd had all the symptoms before her friend developed the disease.  Whooping cough.  WHOOPING cough.  She listened for the whoop. 

"You don't have the telltale sound at the end of your cough," she'd said.  "I know you've had some exposure."

"Yes, I know. Look, I don't want to have whooping cough.  I spent last night on the floor in the bathroom coughing so hard I had to throw up.  I can't sleep from coughing."

"What did you throw up?"

"It's not a gastro issue.  I threw up because my cough was so hysterical."

"It doesn't seem like bronchitis."

"It's not.  I've had bronchitis.  This is not it."

"I can give you a cough suppressant with codeine and let's see if we can get you some sleep and if it doesn't do better for you then please call and I'll get you the antibiotic.   I'm just not sure of your exposure time and if it's bronchitis you'll definitely get some comfort and some rest."

"I've taken two different cough suppressants that have done nothing but I know that codeine will knock me out.  Let's see." 

And I coughed for hours until I finally passed out around 2:30 in the morning.  I called her the next morning and left a message with a receptionist that I wanted to be treated for pertussis, needed the correct antibiotic, and asked that she consider a blood test so that I could be sure that I would not infect anyone else.  She gave me the prescription and accepted that I could have pertussis but since my children had been recently vaccinated, she did not think there was reason enough to have me tested.  I'd be treated and if need be would revisit with her when the antibiotic course had run if I didn't feel better.  I sensed her dismissal but didn't push.  I knew that no one wanted to summon the CDC on their watch.

I hate being sick.  Sickness is being in my bed upstairs listening to the sounds my family one flight below and wondering if they've already forgotten me.  It is a profoundly lonely feeling of being left behind.  It is the last person out the door forgetting to shout goodbye and then hearing the silence of the house and my imagining what everyone is doing at school.  It is Love American Style before having to drift off, afraid to fall asleep alone in the house but too exhausted to watch any more programs.  It is needing to prove that I feel badly, that my body needs healing, that I need this rest, this sleep, this healing.  It is saying that I am broken, that I am hurt, and that I need fixing.  It is asking for help and feeling like a burden.  It is needing and it is terrifying.

My course of antibiotics is finished and though I continue to have wicked coughing spells, there are fewer than when it started.  My body is tired and my throat and rib cage are sore.  I have held myself up during this week so that I can be a support to my children who are dealing with transitions in their lives--the start of school, a fractured elbow for the little one, encroaching puberty for the eldest, but I have also claimed my space when it is needed.  There were many afternoons in the bed when the previous night's coughing jags kept me up wandering the house.  There were cuddles and forehead kisses so that possibly contagious mommy would not infect anyone else.  

Once when I was a teenager my mother and father both fell ill within days of one another.  Scar tissue from an earlier surgery in his intestines had caused some kind of blockage and dropped my father to the ground.  I remember visiting with him in the hospital and finding him so small.  I cannot remember if I am confusing this visit with another time, but I recall that he had a tube that passed through his nose and down his throat and that he and everyone who saw me watching it assured me that it caused him no pain.  He'd been sedated, so he was very drowsy and kind of sweetly childlike, like I'd never seen him before.  His voice was a whisper as though he were telling me the secret about how human he was while also hypnotizing me to forget.

My mother suffered from an ulcer and had been driven to the hospital by a neighbor.  I don't think we'd been able to see her so immediately and there were some warnings about not overreacting or agitating her more than she'd been.  She was also very small and so quiet.  I knew they had to let me in to see them but that they were not prepared for me to see them like that.  I was their child.  Sickness was weakness.  It was a threat to our shared mythology.  It was startlingly human and smelled like body, sweat and tears, mucus and saliva.  It drained from your nose to your stomach.  It was a dry mouth filled with cotton.  It was coughing fits and jags that shattered the silence and the pristine walls of our modern life.  It was dry hands, days unwashed, sweaty foreheads, and unkempt hair.  It was untidy and it was wild and it was needy and it was human.

When I close my eyes each night and try to relax into my pillow, I cough.  I am bolted upright, heaving and seizing from fits of coughs that empty my lungs of all the air until I gasp.  Then I try again to lie back.  Next to me, my husband snores himself to sleep having drawn the invisible line around me where the heaving, sighing, coughing, sweaty, teary sickness cannot touch him.  The girls are asleep in their beds.  Sickness is lying in the bed listening to the sounds of my family wondering if they know how hard it has been to carry this physical burden alone.  It is being physically tired and emotionally spent but pulling out one last trick for my children because I am the parent who will do that.  It is the profoundly lonely feeling of being important in how you are able to hold up the world for everyone else and watching them let you drop it when you just can't anymore.  It is lying in bed next to someone snoring while you cough so much you are afraid you might die and they don't move.  It is shame and fear and loneliness, and as a healer friend once said to me, it is a change of consciousness.

Pertussis or something like it is leaving my body though the cough may linger for months.  I'll probably get the booster when I am well so that I don't meet its symptoms again.  It has been a big deal, a big whoop, and extremely revelatory.  When I am sick, I need to be loved and cared for, to have my wounds salved, my soul rested.  It cannot be that at my most vulnerable I should be denied this kindness.  I have, myself, done this.  I have punished myself for being the most human being, for succumbing to nature's traps and pitfalls, pranks and sinister jokes.  Instead of kissing my own knees and suturing my own torn heart, I have punished myself before another would be able.  I have allowed a circle to be drawn around me to keep me out.  It has been incredibly hard being this sick and loving with all my breath when I could not breathe but I have learned again.  

My ribs no longer ache and my jags come mostly in the morning, last gasps of this crazy disease.  I'd rather it be me than the girls, rather I'd endure this pain that allow them preventable suffering.  That curlicued gasp at the end is when I realized that I haven't been well cared for.  That will change.





(c) Copyright 2017.  Repatriated Mama:  Back to the Suburban Grind.








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