KINGSTON, Jamaica — Living with the Human Immunodeficiency Virus (HIV) for over 20 years, activist and community facilitator at the Jamaica Network of Seropositives, Joan Stephens, says the memory of her mother singing the popular gospel song ‘One Day at a Time, Sweet Jesus’, has helped her through a very difficult journey. 

Stephens was speaking at a HIV Awareness Webinar hosted by the Tourism Development Company, when she explained that she was in the process of applying to travel on an overseas hotel work programme, which required that a medical be done. She said after learning of her status, her initial thought was that “something has to take us out of this world, if it’s not one thing it was something else.”

Not able to fully process what she learnt at the doctor’s office, Stephens stated that it was not until she was on her way home that she came to understand the extent of her condition. 

“I went through that process, it’s on my way going home, then I start to realise, I said, ‘what did I just experience a while ago?’ Then I started to cry, and a young man saw me crying and said ‘lady why you crying?’ and I said something you nuh wah happen to your worst enemy. That was it and I just went home and sat there and cried,” she said. 

After reaching home, Stephens said her mother inquired about her doctor’s visit and when she broke the news, she recalled that, “she started to sing ‘One Day at a Time, Sweet Jesus’. That song has [been] with me from then until now.” 

However, she said, “My sister cried every day, ’til one day I have to say to her, ‘can I ask you a question, you’re not living with this thing and you’re crying more than me, could you please stop?’ and she said, ‘but I’m not going to have my sister with me.’ and I said let’s pray. Nothing beats prayer, so there must be an outcome, there must be a way one day when things can be better.” 

“But I was glad that I had that within me then because it still encourages me to this day, never to give up, no matter what the circumstances in life holds,” Stephens declared. 

With medication costing over $80,000 at a time, Stephens said she was in a constant state of pressure to source the funds needed to help keep her alive. 

“I didn’t know if I was coming or I was going, at one point in my life I said, no sah it nuh mek sense me bother live because I am not working and I can’t afford this,” she explained, noting that after a while she couldn’t even purchase two weeks’ worth of medication.

Later, after being introduced to the generic drugs at a much more affordable price, Stephens said, “at one point I still couldn’t afford it, but being the person I am, I’m very jovial. I would make conversation and talk and they were times I go there and I would get my drugs for free.” 

After a while Stephens said she was able to get a job to do promotional work, and based on her positive attitude, she was able to become a permanent employee for that company, allowing her the security to purchase her medication on a consistent basis. 

However, she said in 2010 she was diagnosed with encephalitis [inflammation] of the brain and the doctors informed her family to start burial preparations because she doesn’t have much time to live. 

“Joan’s brain shut down for a year. Joan couldn’t move, I couldn’t bathe myself, there was nothing I could do for myself. But when man say no, God say yes…My sister, she is the one that took care of me and ensured that I always get my meds and things like that. For that year I didn’t know anything, I couldn’t tell you what today is, and I have no recollection,” Stephens added.

After recovering Stephens said she recalled doing house chores when she saw a pack of diapers and she asked her sister who they belong to. 

“My sister said, then nuh fi yuh, momma have to send them in a barrel. I dropped the pampers and I started to cry, I was once a man, twice a child. Because once you start wearing pampers you gone back to baby stage,” she continued. 

Advising those who have been diagnosed with HIV, Stephens stated that they should be consistent with their medications. 

“It’s very important. But, I know in some cases, most persons don’t even have a job to be sustainable, and I wish we could redefine things that can get them more empowered in order for them to take the meds. Get involved in some peer-to-peer support group, because there you will see you are not alone in this thing, there are others who are going through the same thing that you are going through. And it will help bring them to a point where they say if they can do it, so can I,” she said.