A message for World AIDS Day

world-aids-dayBy Kevin Canessa Jr.

Every year when it approaches, I forget to write about it. But I remembered this year that World AIDS Day is Dec. 1. For some, World AIDS Day has little significance. And to those who have never lost a loved on to this hideous disease, God bless you for it.

Unfortunately, in my lifetime of 42 years, I’ve lost two uncles to it – and two other family members both died from it – all at way too young ages.

I’d like to share the story, today, of my two uncles who both got the disease and lost their lives from it.

My two uncles, Patrick and Matty, both had a very hard time dealing with the death of their oldest brother, Thomas, from what I’ve been told. Thomas died in 1970 at the age of 21 from ulcerative colitis. Thing is, if Thomas had had the same disease today, he probably would have been in and out of the hospital quickly. But he got the affliction in 1970 – and at the time, Patrick and Matty were both young – still in their teens.

They had such a tough time dealing with the death that like many other Americans, they turned to substance abuse. First it was sniffing glue – then a gateway to pot. And after that, you name the drug, they probably did it.

One of those drugs was heroin. And, in the early 1980s, very few addicts – or people in general – knew that sharing needles to inject such drugs was as dangerous at it was. AIDS was little known then – and unfortunately, it was seen back then as only a sexually-transmitted disease. If you were alive in the early ‘80s, you likely know that not much, if anything, was ever said about the dangers of sharing hypodermic needles among addicts.

But what we later would learn is that AIDS wasn’t just “the gay man’s disease,” as it was originally called. It could be transmitted between two sexually-active partners of any gender. If an addict had the HIV virus, the precursor to AIDS itself, and shared needles with people who didn’t have the virus, it could easily be transmitted.

While we never truly knew when Patrick and Matty contracted HIV, it was pretty clear they got it sometime in the mid- to late ‘80s, while using heroin.

In our family, we all knew they both were HIV positive. But it wasn’t something we ever talked about – privately or overtly. In fact, when Patrick died in 1995, the story was that he had cancer. Even as late as 1995, HIV and AIDS was still a very taboo subject that carried with it a lot of misinformation.

To this day, I still feel a horrible sense of regret because Patrick lived with us until the day he died in our old place on Ivy St. Even then, I was always petrified to use the same toilet – we only had one – that he used. I used to think even a drop of urine left in the toilet would be enough to catch the disease. I’d later learn how silly that notion was.

But that was what America was like even in 1995. People still didn’t know if the disease could spread from urine. From saliva. From sharing a cup.

But it’s not this aspect of the disease that prompted me to write about my two uncles. Not one bit, in fact. It’s the sheer notion that today, in 2016, even though medical advances have allowed people to live for decades with the virus (think Magic Johnson), not everyone gets to live that long because of the absurd costs of the anti-viral medications.

Neither Patrick nor Matty ever took any of the medications that have allowed Johnson and others to live a normal life decades after becoming HIV positive. In Patrick’s case, it led to one of the most horrifyingly slow deaths one could ever imagine.

I remember one night, coming home from a weekend trip to Scranton, Pa., to find Patrick at home, lying on the couch. At this point, the man who was once 170 pounds may have been, at most, 80 pounds. The disease just ate away at him. But it was his inability to breathe properly that has stuck with me 21 years later.

Because that night, his breathing was so labored, so difficult, and so loud, that it was all I could hear throughout the house the entire night. It remains, to this day, the worst sound I’ve ever heard.

At that point, I didn’t know what to do. He was clearly in agony. But would it even matter if he went to the hospital? At that point, it was too late for doctors to do anything anyway.

Fortunately, his breathing got better – and somehow, he slept through it all. Maybe he was unconscious. I’ll never know. But the very next morning, on his own power, he got up, walked down the stairs, and hopped into my uncle’s car – and my uncle and his brother drove him to a hospital (I can’t remember whether it was West Hudson or Meadowlands Hospital.)

The next day, he was dead.

Ten years later, no thanks to the same disease, Matty also died, but fortunately, he didn’t suffer anything like Patrick did. He didn’t feel well one day, left work, came home – and two days later, he was gone.

Why do I share all of this?

Well, it’s simple.

The dangers of HIV and AIDS are still so prevalent in today’s world. While there are those expensive medications that slow down the path of the disease, not everyone can afford them. And yet there are still stories out there of people infected having unprotected sexual relations. There are still stories of people sharing hypodermic needles, leading to the spread of the disease. There are so many other countries in the under-developed world where AIDS is rampant.

As World AIDS Day approaches on Dec. 1, it’s my hope that someone reading this might just learn something new. It’s my hope that someday soon, there will be a cure for this hideous disease that has claimed the lives of untold millions of human beings. It’s my hope that if just one person can be saved by realizing how quickly life can turn on a disease’s diagnosis, we’d all be better off.

Somehow, my grandmother had to bury three of her sons, two to this disease. To this day, I still don’t know how she ever managed to get through it.

I’d never wish anyone to have to experience what we as a family did, especially watching Patrick wither away – and I’d never wish any human being to have to suffer as Patrick did.

So please, on Dec. 1, take a moment to remember just how awful HIV and AIDS truly are – and how they killed so many. May you never have to experience anything like it in your life.

 

Kevin Canessa Jr. | Observer Correspondent & Webmaster

Kevin Canessa Jr. is a journalist and webmaster at The Observer. He is responsible for the editorial content on the newspaper's website, the production of the e-Edition, covering the Nutley Police Department and more behind the scenes. From 2006 to 2008, he served as the editor of The Observer, where he introduced the newspaper to its first-ever blog — which included podcasts, audio and video for the very first time. Originally from Jersey City, Kevin lived in Kearny until 2004, lived in Port St. Lucie. Fla., for four years until February 2016 and recently moved back to Kearny to return to The Observer full time. Click Here to send Kevin an email.