Victoria, British Columbia
Diagnosed with Hep C in 1993
Even a Simple Fish Hook to the Head Can Be a Big Deal When You Have HCV!
Dealing with hepatitis C (HCV) is not a simple matter, and like much in life, it can be very confusing. It has been full of tears and fears but there have been moments of light and even humor. So, I will start this tale of mine first with the fears and tears and tell it as it happened to me. The treatments I have undergone are secondary to this tale, so I have left out those details. Naturally, I hope to continue with an undetectable viral load and finally turn a magic corner where all doubt is erased in my mind. However, all things in good time; on with the story.
How do you tell the ones you love that there is something terribly wrong with you that can also affect them? You can only trust that love will overcome the fears, uncertainty and tribulation that a diagnosis of a disease like HCV brings. This was the conclusion that I reached very quickly in 1993 after I was first diagnosed.
Only a year earlier a good friend had taken his life after being diagnosed with this disease. I keenly remember when he told me in late 1991 that he had been diagnosed with non-A, non-B hepatitis, and that the new, expensive viral tests had confirmed that his infection was HCV. We had discussed how he might have acquired the infection, and like me, he was most likely exposed to the disease in the late 1960s or early 1970s. At this time, I did not know that had I also acquired HCV, so all I could do was offer him my continued friendship and concern.
Because of our friendship, I learned what I could about HCV by going to the library and reading all that was available. I suppose this is the first time that a suspicion that I too might be infected crept into my mind, but I dismissed it immediately because I did not have any real symptoms. However, I did read an Australian doctor’s thesis that HCV could cause autoimmune diseases, including thyroid immunity trouble, which I was undergoing treatment for at the time.
Looking back, it was almost impossible to tell others about this disease; even health care professionals did not understand it well. Many were ignorant of the fact that transmission by means other than direct blood-to-blood contact was not at all common.
I watched as my friend became more and more despondent. I tried to help him keep his chin up. He was a gifted musician and very knowledgeable about Baroque music, which I also love to play. I was deeply disturbed when he took his life later that year. His death haunts me to this very day, even though there was little that I could have done to help him that I did not do at the time.
Unfortunately, he is not the only person I have known that has died from this disease. Every one of them contracted it in places and at times that differed from mine. Since the diagnosis, I have come to realize that there should be no shame, blame or certainty attached to how one acquired this infection. In fact, the regrets and wasted energy dwelling on this issue can and does make the disease much harder to deal with for all of us, including our loved ones.
After I was diagnosed with HCV there was the natural sense of “why me?” and “when and where?” This reaction quickly led to a better understanding of the fear and paranoia that caused my friend to lose his way and end his own life. The experience of losing friends to this disease also made me much more open to telling others about HCV. This did not make it any easier to tell my spouse and child that I too was infected. Thankfully, neither has ever had an exposure that has resulted in an infection. Post-diagnosis I worried constantly about things like whether I had transmitted the virus into a cut when I was putting a Band-Aid on my child or wife.
A life of uncertainty and feeling like I was a human biohazard is difficult, but in some ways it has taught me much. Mostly, it has taught me how to be a caring individual even when others are less than understanding about this disease.
So, in 2003 when a fishin’ friend of mine, Doug, caught me in the back of the head with a hook and then offered to remove it with his fingers, I reacted strongly. He balked at my tongue-lashing and admonition, but I insisted. As I popped the hook out of my scalp, blood went everywhere because the hook had gone fairly deep. Thank heavens we were fishing barbless hooks; otherwise I would have had to run it right around and pull it all the way through. It was a well-tied bomber chironomid fly on a larger hook, so I said, “Thanks for the bug,” cut it off the end of his leader and put it in my hat. He scowled, and made his usual joking claim that it “costs 5 bucks on the pond.” This was because he tied flies for a living and his chironomid ties were famous in the Cariboo, and even in the US.
This incident led me to tell him the real reason why I refused to allow him to take the hook out of my head. His first reaction was considerable trepidation, because he suffered from severe heart problems and worried about being exposed to this virus; like many, he was not well-informed about the nature of this disease. I encouraged him to learn the truth about the virus, and he did. Fortunately, the fact that I have HCV did not affect our friendship. We continued to fish together whenever we could until his unfortunate early death from a heart attack. He passed on the way any true angler would wish, one late summer day a few years back, putting his waders on getting ready to fly fish the Mitchell River here in British Columbia.
Since the experience of having a fishhook stuck in my head, and the ensuing fear that a good friend could have infected himself by the point of a hook and my blood, dealing with the minor daily concerns of being HCV-positive has become much easier.
So now, here I am free of HCV (SVR12) after treatment, and hopefully heading for a full cure. Perhaps now I can plan and do things other than just fly fish. And Doug, rest his soul, will have to wait a little longer to get his fly back!
What three adjectives best describe you?
Stubborn, opinionated, determined
What is your greatest achievement?
Having successfully raised responsible children who do not use street drugs and encourage others to avoid them
What is your greatest regret?
Don’t know yet and hopefully will never find out!
What keeps you up at night?
The state of the real environment we all share and the fact that it is a political taboo in the United States and Canada to discuss how to change our destructive and wasteful ways
If you could change one thing about living with viral hepatitis, what would it be?
The social attitudes among many with influence in politics that viral hepatitis is a self-inflicted wound
What is the best advice you ever received?
From my mother: “Eric, you never seem to do any one thing to the best of your abilities! Please try in your lifetime to do at least one thing better than everything else you do!”
What person in the viral hepatitis community do you most admire?
Lynn on the Hep Forum because of the fact that jumping out of good airplanes is not my cup of tea, but I can dig it!
What drives you to do what you do?
The possibility of creating something new of value to the future
What is your motto?
Piscor ergo sum (I fish, therefore I am)
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
Other than my wife and the cats, a musical instrument that my brother built for me
If you could be any animal, what would you be? And why?
A bear, because it would be nice to not have an environmental conscience, and sleep all winter instead of working at jobs that largely disrupt the environment of most bears and the fish we both crave.
Victoria, British Columbia