The survivors’ guide to life.

The doctor doesn’t know what it is, this mysterious and sudden illness that has afflicted me;

“Symptoms,” he asks

“Bloated, tender stomach, no appetite” I offer, “I found it had to concentrate yesterday at work, I lost tools, I never lose tools” I mumble, “ I have to buy them when you buy your own tools, you don’t lose them” 

“Stress may be an ulcer,” I wince as he palpates and  pushes on my abdomen “” Nothing too obvious, come back later in the week if you think you aren’t improving”   

“Probably just need a holiday” I offer, and think about the very busy year I had had, working physically running a small agricultural fencing business 

That was day two of the onslaught, yes I looked terrible like I had been in a fight, but that was mild compared to the next 18 months.

The vomiting was the first real sign I was in for a rough ride, “Probably just gastro” my wife offers, “How?” I moan, wiping my mouth of the bitter taste of bile. “I don’t know, probably that pie you had the other day, what was it? Chicken and cheese, probably not cooked real well”

No time to respond, round 8 beckons me to the bowl, and I helplessly convulse delivering nothing except some foamy spit.

“Anyway,” She smiles sympathetically and pats me on the shoulder “I can’t risk getting sick, so I’m going to leave you to it, I’m sleeping in our daughters’ room, and please try and keep the noise down, you are scaring her.”

That night I wish to never remember, but how could I forget?  

The violence of the night, my innards were torn and laid asunder as if some samurai had carved my once-powerful body to small tatters of what existed only a few days before.

Sleep came the next day, but it was fitful and unfulfilling.

That night after a light meal of baked potato chips and peas, the terror emerged, like a cruel tormentor awaiting me, emerging from the darkness like a nightmare from a Stephen King novel. Tricking me and letting me think I had escaped, but only to reappear and attack me again, despite my begging for mercy, another round of brutal beatings was awaiting me.

Respite, at least two hours since last round of retching pointlessly as there was nothing left inside. Sleep at midnight, waking at 2 am, I can’t survive this I am doomed to die tonight; I am a man of reason, I grew up on farms, I had seen diseased animals, and I knew that coming back from where I was, was probably not going to happen.

How can one feel so bad and survive? the pain in my stomach was unstoppable, tearing and constricting my vitals, each breath a hard-fought battle.

Peace, the peace that arrives before dying, I had no fear for myself, only grief that I would not grow old with my beloved wife and my 4-year-old daughter deprived of her father,  I have no fear, but the train is leaving the station and I have a boarding pass; light and then dark.

Surprise, I blink. Three hours have passed, 5:15 the red LCD lights on the clock read, more pain, more intense renting of my inside, this time I don’t manage to raise my head and yellow bile spills down my cheek, staining the pillow.

More regrets, I wish a silent farewell to my family, some I haven’t seen in years, I wonder if they can sense my distress, my bon voyage that I send to them in the pre-dawn stillness.

More light, then came a dark familiar veil, impenetrable, I laugh internally, so it wasn’t the high-risk crazy stuff I had done that would kill me, but some kind of stomach ailment that prematurely would end my life at 31 years of age. 

Yellow.

Staring back at me in the mirror.

Yellow eyes, skin, urine, I shower, trying to clean the hue from my skin.

 People stare at me as my shocked wife delivers me to the doctors’ surgery, bright yellow, irradiated, nuclear and quickly shunted to a spare nurses’ room, away from prying eyes.

“Well you look worse than when I saw you last” my doc offers, “Umm,” he says, that is not good when your health professional starts a sentence with ‘“Umm”’ “blood tests” he looks blankly at my yellow aura,

“Yes blood tests, let’s get to the bottom of this, I’m sure you are through the worst of it”

The day was a blur of struggling between getting into the car, (which now a huge effort was required) needles, blood collected in vials, veiled comments about the skin colour, sideways glances by those who knew what it all meant, and suspicious glares by those who didn’t.  

“Now” My GP looked earnestly at my wife, and then back to me “we don’t understand these things” he paused, in the 24 hours that I had had the blood tests, he had been working hard, collating data, my data, my readings, my vitals, my life was sitting typed in 12 point Times New Roman in his hands.

“Sometimes things just happen, we don’t understand, but I don’t want you to jump to conclusions” I’m lost, I have no idea of his angle, what does he mean.

“You have Hepatitis B” he delivers a short sentence.

Hepatitis what is that?

Don’t only dirty people get it? 

Based on letters of the alphabet, does that rank the severity of the disease?

The colour drains from my wife she looks shell shocked, she understood the implications, her body collapses, suddenly her strength is sucked from her; her face, pale, a small shake first detectable in her fingers works its way up her arms,- until her body is recoiling away from me.

“So Hepatitis B,” I ask, “What does it mean?”

The next ten minutes the Doctor goes through the biological workings of a virus, he points to a chart that states my levels in my liver are a massive 12,000 times higher than what is considered safe.

He is saying something, possibly that if I start haemorrhaging then rush me to the A & E, but really there will be nothing they can do, except wait for a liver transplant.

“So how,” I ask naively “Did I contract this illness?”

“There are two main vectors,” he says, his eyes averted to save me from an embarrassment yet to dawn on me. 

“These are blood and semen/sexual transmission” I stare blankly at him, he waits for the words to sink in and find an uneasy resting spot.

My wife groans in abject fear and terror..

“Now,” the Doctor says, “Remember what I said, we don’t understand all these things, you can’t be too quick to jump to conclusions”

But I see her mind working, and as we depart the clinic, with more test forms and follow up letters and a light coloured book from the hepatitis foundation, only then does the reality hit me and her at the same time. His words have now penetrated my inner self, “blood or semen” affairs, illicit behaviour, accusations in her eyes, retreating from my comforting words, my words of denial, for a crime I haven’t committed.

We drive in silence back to the lab, more dark red vials of my poisonous blood is leached from my veins, more nausea, more confusion and a broken union of trust.

I am scrambling in my mind, I can rule out semen, yes, no disrespect, but I have never been inclined towards homosexuality. I can deny affairs, I have to trust that my wife will believe me.

This is too much to take in, I’m feeling faint, panicked, 12,000 times over the safe limit, my liver is a mangled mess, swollen beyond recognition, non-functioning, and one moment away from refusing to work, overburdened and losing the civil war that is raging inside.

Emptiness is my companion as I lie on my bed, Blood, blood, I repeat it, where, how, when?

Physical stress is equalled by mental stress, hypersensitivity to smells, sound and light, most of all the feeling of guilt and shame. 

Slowly I think back, the incubation is  6-8 weeks, what happened, I was fencing on a farm, yes I was fencing, but that was my job, and yes I always had cuts and nicks on my hands. 

Think, exposure to blood, I felt ill, blood from other people makes me uneasy, My father had no stomach for blood, he often would blackout at the sight of it, I had his tendency to steer clear of blood.

Then I start to think, my worker had a blood nose one morning, when was that? I grab my diary, yes the time frame is right, but I didn’t touch his blood, I threw him some tissues and told him to drive the truck down the paddock when he was ready, the truck, the gear stick, I had also cut my hand with a chisel that morning, the plaster tape, lopsided after using the spade, could it be.

Steps, get my employee to be tested, it was worth a shot.

Later that day I spoke to him and his father as they collected his last pay from me, “Oh Hep B, yeah we are all carriers” Big Joe laughs unknowingly that his family have irrevocably altered the course of my life, “Carriers” I repeat disbelieving,

“Yes it has been in our house, my grandchildren were born with is, and this young fella,” pointing to my worker, “was told by the quack that he had it too, and he is a carrier” 

Joining the dots added some comfort. At least I had a source, now I had to deal with the illness.

My wife is now at risk, she is fast-tracked to receive antibodies and vaccines, the likelihood of her being infected by me 99%  however mercifully after a number of weeks of testing she has no build-up of the infection, at least that is one small victory we can cling to. 

Empty inside, weak and sapped of all strength unable to concentrate for more than a few minutes.

Months indeed years to recover, not weeks before I could return to work my GP informed me.

How will I pay the rent, food, power, schooling? 

My daughter brings me toast and warm water for breakfast, she sits on my bed, trying to understand why “Daddy isn’t going to work anymore?”  The impact is obvious, her small mind trying to make sense of it all.

“It’s a work-related illness” My wife suggested, “ACC should cover you”

Forms to fill and the first case officer sympathetic, only to be quickly replaced with a snarling rottweiler of a woman. “Sorry, no cover here for you, we don’t cover Hep B,” she tells me in the open office, “Anyway how can we believe that you haven’t been a naughty boy and got caught out” Inferring adultery as the source of my illness.  I leave my humiliation complete.

Days become weeks and weeks months, at the four-month stage my GP announces a small miracle, “You are completely immune” he smiles, “Your body has responded to the virus and converted to full immunity, you can never get this strain again” Milestones are all we have, and ongoing litigation with ACC, which would take over 18 months to sort and win.

Recovery involved working two half days a week for a friend and teaching guitar to some school lads.

My wife had joined the workforce, leaving me as house dad though not a very able one. One of the effects of a massive illness such as Hep B is encephalitis of the brain, meaning I got a brain injury as a result of the all-out attack on my whole system, this left me short-tempered and angry, unable to concentrate and with serious fatigue. On numerous occasions had to remove myself from the dining table, my anger brewing like a thunderstorm in the summer. 

Often unable to heed the warning signs until lightning had struck those I loved, leaving charred remains on the floor, as I hurled insults and anger. Later guilt was added to my grief.

The depth of my wife’s love is tested and found to be true.

Now years later as I recall this, I can think only of the support and love from family and friends, (although some steered away from me, finding my illness all too disgusting and threatening.) 

I have recovered physically, still suffer from brain fog, but have been able to work in different management roles including starting and running a 40 room motel, sales and service are now the fields I operate in.

Epilogue 

Why am I sharing this? 

Looking back (at the time of publishing) hard to believe so much time has passed, I am grateful for walking through the shadow of death, I believe I am a better person for the suffering.

Also giving hope, reducing stigma and finally to thanking those who have made space for me.