SURVIVAL IS...

Why do some countries have it so together when it comes to Hep C. The first country that comes to mind for me is Australia.

I was fortunate after discovering I was HCV+ back in 2007 to come across numerous Australian Websites all to do with HCV. Didn’t matter whether the sites were private or government, they were all chock full of useful and usually cutting-edge information and support.

And then there is commitment. Years ago the Australian Government made a formal commitment to their citizens to rid the country of Hep C. I believe the Australian Government is doing exactly that when you take in to count their financial, political and moral resolve in medical research; on public education programs and on liberal health care programs for treating infected individuals.

When you consider the virus is a pandemic, one would think other countries might follow the Australian model. Definitely not though. For instance in Canada, a country with excellent public health care, you don’t qualify for treatment until you are chronically ill with HCV. You cannot get your treatment covered when you are in the acute stage of infection, you have to wait until you have a liver damage. A real pity because numerous medical studies, random and controlled, indicate treatment in the acute stage has a much stronger likelihood of clearing the virus.

As to meaningful public education - you can forget that one. Canadian school boards often refuse the offer of established Hepatitis C Prevention Societies from presenting prevention and awareness programs in public schools. Furthermore there is no legitimate effort, financial or otherwise, made by the Canadian Government to educate either.

There is a pandemic and there is a country, Australia, which provides an excellent role model on how the virus can be stopped, but still the rest of the world lags far behind. The third world is still reusing needles to cut health care costs. In Canada, our own young children don’t even know the level of health concern they need to maintain. For example, ask your kids this question: If you were staying at a friend’s place and realized you forgot your razor, would you borrow one to shave? You might be surprised how many kids will say: yeah no problem I’d use a friend’s razor. The problem is razor sharing is a common way to transfer the virus.

So why is Canada, in addition to numerous other countries, reluctant to tackle the HCV pandemic? It’s all about money. No doubt this is an expensive disease to deal with from a treatment or end-of-life perspective. Palliative care is expensive and HCV is the leading cause of liver failure. Often people die a horrible death while waiting for a liver transplant. For those chronically ill who qualify for health care, the cost is around $1800 a month. Treatment duration can range from six to twelve months, so you can do the math on that one. 

The only way you will ever slow the virus and eventually rid the planet of it is through public education. And guess what? Education is cheap. There are no lack of qualified volunteers from registered non-profit societies who would love to be part of the education process. Education works too. This is not a hard disease to prevent. With HCV there has to be blood to blood transfer. Unlike HIV, HCV is not detectable in body fluids other than blood. Once a person is aware of how the virus operates, it is easily preventable.

The question then becomes: if it is cheap to educate and we have people willing to do the education, why aren’t we? Stigma is the enemy here. For those of us infected, stigma is a daily issue. Society views those of us as somehow dirty and immoral. No ones wants to hear about it. Remember the school boards refusing free public education? The most common reason for being denying access was: we don’t want our young people to be exposed to topics such as the need to not share needles because this might encourage drug use. I’ve thought hard about that answer, but I still can’t find the logic - I find the attitude criminal.

In Canada, anyway, we will continue to bury our heads in the sand and pretend the pandemic does not exist.

To be a survivor not all things are bad

Just means things are always changing

Took me years to know who I wanted to be

Havoc at the beginning spiked the dragon into my vein

Little did I know that little virus would be my life’s theme

Forty years later I meet my sunshine

And she is my warmth

I will love her beyond my death

She is my absolute Saviour

And then I bring this into her life?

Why did it have to happen now?

Ribavirin kicked me to the curb

The bastard held me down

While Interferon raped my soul

A year and a half of a horse called Pegasys

Now I don’t remember who I was

Things said can not come back

Delusional thoughts thru treatment

The world was against me

My family stood and watched

As I became the devil

30 years not knowing

But knew something was there

Pulling me down

The dragon was hiding

And becoming part of me

Recently it occurred to me having Hep C is the best thing that ever happened to me. Odd as this sounds, this is why:

The majority of my life has been spent thinking about the sexual abuse which I was a victim of starting at age 11. Until I was in my early 30’s I had never told anyone what had taken place. The abuse was not a single event and went on for most of my teenage years. During this time, I had been victimized by at least six different pedophiles, did not live at home choosing the streets in Vancouver instead. One of the evil things about sexual abuse is the victim, being me, tends to blame themselves for what took place. As a result, from the time the abuse took place until I was in my 50’s, I did my best to bury myself in drug and alcohol abuse.

I never told anyone about the abuse until I was in my mid 30’s after attempting suicide. After the attempt and during my stay in the hospital I was lucky in speaking with a nurse who encouraged me to attend community counselling which I followed thru with. I would like to say councelling “fixed me” - this was not to be the case though. Yes, the councelling did help to an extent, but my abuse of various substances, soft and hard drugs, continued to the day I discovered I was Hep C positive in 2007. Having Hep C was a milestone in my life and I finally turned the corner and stopped drinking and doing drugs.

I had to face the fact I had been living two separate lives for many decades. One, was my working life - somehow even with the substance abuse I had managed to build a succesful career. The second life I lived was spent thinking about and trying to forget what had happened to me. I had next to no friends over this time - I was married once and then divorced two years later. Socially, I was very inept. I simply felt like I did not fit in anywhere and avoided social interaction as much as possible. I realize now I had allowed myself to become a vicitim. Because of this, my inner voice was entirely focussed on past events and I spent next to no time thinking about my future. I simply drifted along pretty much following the path of least resistance. When I had no alternative and had to attend a social event, I often got drunk or stoned enough to make a fool of myself. This of course amplified my self-isolation even more.

So why, at age 52, was discovering I was Hep C positive a good thing? First, it ended my cycle of substance abuse. Second, I learned for the first time in my life who I really was and have value as a person. During my first, Interferon / Ribavirin treatment to try and kill the virus, I discovered a local Hep C support group. Sitting in a room with others dealing with Hep C was one of the most energizing experiences of my life. I found my true self wanted to help others and in turn wanted to help myself as well.

I volunteered with a non-profit Hep C society focussed on the education, prevention and peer support. Since I was not working, I was able available as a volunteer much of the time. My inner voice changed, I began thinking about ways to help and further support others. My focus shifted to the future and how best to spend my time as a volunteer. I found this so energizing and really the final step in turning my life around. I’ve met some great people - who I want to spend time with. I no longer feel like I am being judged negatively by myself or others. In short, being positive for Hep C has helped me to want and develop a positive inner voice.

I am no longer a victim and realize there is always a silver lining even when faced with negative experiences.

One morning, Vicente,  asked me if I would like to visit a Chilean Freighter berthed at the loading docks in Mazatlan. The year was 1968 and I was twelve years old. The invite struck me as odd since he was at least 20 years older then me and we were anything but close. However, at my young age, ships of any kind fascinated me and I readily agreed to go.

I’d known Vicente for a couple of months and was traveling north along the Mexican Pacific Coast with him and his family on the Ocean Queen a 63 foot sailboat. To understand the situation fully, Vicente was originally from Chile and moved to Mexico years ago after when he met and wed a wealthy Mexican woman. Vicente was traveling on the boat with his wife and daughter. Traveling with them as well was a young Mexican woman, Adriana, and a young Mexican guy, Hugo. At first I wasn’t sure how Hugo and Adriana fit into the equation as they were not related to either Vicente or his wife - nor were they friends of his daughter. After I had been on the Ocean Queen for a couple of days, I put two and two together. Adriana was Vicente’s lover and Hugo was with Vicente’s wife. Apparently Vicente and his wife had come to terms with adultery.

A few weeks earlier in Manzanillo, I had danced with Adriana. She was incredibly beautiful and pure Mexican Indian. We were dancing to waltzes, so I enjoyed holding her in my arms. She was a few years older than me, but were definitely attracted to each other. Things progressed a bit further than dancing later that evening. Vicente found out a few days later. He was extremely angry and forbid her to ever talk to me again. At the same time he warned me to stay away from her, which is why inviting me to join him on his visit to the freighter seemed weird to me.  I assumed he had forgiven me and the invite was his way of apologizing.

The walk from the Ocean Queen to the freighter took about 30 minutes. During the walk, Vicente told me the captain was a friend of his and that he had not seen him in many years. Vicente said he was eager to meet with him and talk about the old days.

I had been on freighters before and had found memories of how luxurious they were. A Russian freighter I had been on was really deluxe. The crews quarters were modern and clean - they even had a small swimming pool on the upper deck. However, when we arrived at the berth where the Chilean freighter sat my first thought was “what a rust bucket.” At first glance I had a hard time believing the vessel was even seaworthy.

Once Vicente and we had climbed up the freighter’s gang plank my opinion of the freighter only got worse. This was nothing like the Russian freighter. Entering what I thought would be the crew living quarters was even worse as there were in fact no living quarters. The route to the wheelhouse on the top deck was a series of steel catwalks and ladders cluttered with old mattresses and tattered clothes. I realized the mattresses were where the crew slept and the crew used the railings to throw their clothes on. The inside stank with a mixture of bunker fuel, sweat and waste. Looking down from the catwalk the entire space was open right down to the ship’s engines fifty or so feet below. Because of the engines the heat and was unbearable. Walking along the landings and climbing the ladders was scary as if one slipped there was not a lot to grab onto and the fall would be deadly. The crew members, who were scattered along the catwalk were scary and intimidating. They stood around in their underwear and made it difficult to get past them on the narrow catwalk.

I was glad when we made it to the the captain’s cabin and were separated from the crew. The captain was the only one on board who had a cabin. Even the ship’s officers did not have cabins but their mattresses were a level about the regular crew. The captain did not speak English so we all spoke in Spanish - or at least they spoke - I was pretty much ignored and didn’t have much to say anyway. Already I was hoping Vicente was not planning on staying long. I was fairly fluent in Spanish and I heard the captain tell Vicente that his two officers were visiting “Putas” (spanish slang for prostitutes) somewhere in Mazatlan. After being told to sit down, I looked around and noticed rust stains and some kind of mold dripping down the interior walls - it was very hot, dark and humid. It did not appear the cabin had been cleaned in a long time and the smell was very unpleasant. The captain looked very dishelved wearing a very dirty and wrinkled uniform. He was unshaven and reeked of a mixture of booze and sweat. I sat nervously in one corner, while Vicente and the captain across from me. As they talked their voices droned on and on and I quickly became bored with their conversation. The only thing on my mind was what the walk back thru the maze of clothing, mattresses and  hostile crew would be like when we left. With nothing to do I continued to glance around the cabin. I looked out the only porthole in the cabin which had a small view of the loading dock a hundred feet or so below us. A couple of stray, mangy dogs were going at it with one humping the other. The dock workers were standing around the dogs laughing and pointing. Occasionally one of them would kick the male dog, but this did not deter the dog from his mission to procreate.

Off and on, I listened to the captain and Vicente’s talking. A lot of their conversation was about large sums of money and the exchange rate between the Mexican and Chilean Peso. I assumed they were either in business together or one of them owed the other money. The amounts they were talking about were in the tens of thousands of Pesos which to me was a lot of money. Once in awhile the captain or Vicente would look at me, but neither one spoke to me. I decided I did not like the captain nor did I like the way he would occasionally stare at me in stony silence. After a few seconds he would look away from me and their conversation about money would continue. I got the sense they were negotiating the cost of something. We had been in the cabin for an hour or two. Morning had become afternoon. I was hungry and thirsty. In the heat and stuffiness of the cabin I fell asleep in the chair.

The next thing I knew, Vicente was shaking me roughly, telling me to wake as we had to go right away. He was definitely not happy. Once I was on my feet he hustled me out the door. The captain was silent and looked angry too. He did not follow us out - nor did the two of them say goodbye to each other. We made our way back the way we had come. Vicente was in a real hurry and seemed to be getting angrier by the second. He walked in front of me along the catwalk pushing the crew out of the way. This cleared a path for me, but I don’t believe this was his intention as he never looked back once to see if I was behind him or not.

He did not speak to me until we were back on the loading dock. He snarled at me and told me if I ever went near or spoke to Adriana again he would kill me. After that, he stormed off leaving me alone on the docks to make my own way back. We were on the Ocean Queen for a couple of more weeks, but he never spoke to me again. I felt threatened by him to the point where I wouldn ‘t even look at Adriana, much less speak to her. It was clear he had threatened her too as she avoided me at all costs.

I rejoined my parents a month later in Salina Cruz in Southern Mexico close to the border with Guatamala. To  get there I had flown by myself from Mazatlan to Acapulco via Mexico City. From Acapulco I took a 20 hour bus ride to Salina Cruz - Two and a half days of travelling and I had been nervous and scared the whole time.

A year later my parents and I were in Colon, a town on the Carribean side of the Panama Canal. It was here I learned what my fate on the Chilean freighter had almost been. While we were in Colon two young American women arrived. They had travelled down the Pan American Highway from Southern California by bus. The highway ends in Panama and does not continue South into Colombia. They did not have enough money to spend on air fare so they were unsure how they were going to continue into South America. By chance they ran into a Panamanian man who said he could get them onto a freighter travelling South to Venezuala at next to no cost. They did not discuss this with anyone else and agreed to meet the guy on the docks at 3:00 am the following morning. Around noon the next day the Panamanian Police had received a tip about the fate of the two women. The man they had met did get them on to a freighter. However, he had tricked them into meeting him at the docks and he sold them into white slavery.

I still get a chill, 45 years later, when I think about my visit to the Chilean Freighter in Mazatlan and how horrible things could have worked out for me. I realized that youth is nothing more than a commodity in some peoples eyes. Fortuantely Vicente and the captain could not agree on what I was worth - this was what saved me.