This blog first appeared in the Huffington Post Canada here.
By Muluba Habanyama
No, I’m not a cynic or a negative Nancy. Ask those closest to me and they’ll tell you I’m quite optimistic in many ways. However, over this harsh past year, and the 22 before, I’ve become used to having to fight my way through everything with this evil illness. I never have a break from HIV, and it scares me that I may never get one.
I have this fear because still in 2016, when I look around and talk to some peers, I recognize the continued unknown territory of HIV. That awareness and education is still rare. That open dialogue and discussion about HIV/AIDS is still frowned upon. I will never stop stressing how much we need to talk; to our elders, to our age mates, to our mentors, to our children, and to ourselves about the severity and sacredness in taking control of your health in every way possible. That includes knowing your status and how that can change.
Nobody is safe out there. HIV does not discriminate.
If I were to go on a date tomorrow, the guy could Google me and immediately know my status. Vice versa? Not so much. I wish I could have the confidence to look him in the eyes and ask, but I would find it very awkward. I’ll admit sometimes it feels easier to just be a boy and girl, in a diner and nothing else. That’s not realistic. Obviously not for me, and though it may not be obvious, it’s not realistic for anybody.
Nobody is safe out there. HIV does not discriminate. Still you will run into one individual who is sure it’s only a “gay” disease, or an “African” disease. I am personally holding myself, Canada and the world to the commitment of ending the ignorance and stigma towards HIV/AIDS, to open arms to all those willing to lean in and pester those who aren’t.
In 2015 alone, there were roughly 2.1 million new HIV infections globally. Adding to the millions already infected. Adding to the millions we’ve lost. That includes my mother and father who resided in Canada and the U.K., which are seen as more advanced countries. Yet their fate was sealed at just in their mid-40s when they died.
You have to wonder why. Are our calculations wrong? Have we really come so far? In my opinion, we have indeed much battled and improved the lives of those with HIV however, in these advances we made; we became much too comfortable, far too soon. We celebrated.
Of course, we should celebrate accomplishments. Celebrate that babies born with HIV are rare, that antiretroviral therapy can be as little as one pill a day. These are things in the ’80s, at the beginning of this plague, not many thought could be possible. So, yes, let’s celebrate.
However, in those celebrations we must rediscover our ambition, our hope, and remember that the war is far from over. I’m reminded of that every time I have to pump a supplement drink through my feeding tube, but even I lose sight of the big picture sometimes. I often worry that I’m not appreciating what I have and that what I want is selfish and unrealistic.
I’m not here to complain or to diminish others’ hope. Far from it, actually. I’m writing to encourage and empower the community to bring that hope to the forefront and turn it into action. I’m here to give a personal narrative that shows you that 37 years old to me, is not just an age, it’s a destination. It’s my dream.
What do I want to accomplish this dream? Well, what I need is the space to be selfish and the opportunity to fulfill my life as best as I can. Obviously a cure is the ultimate but I realize we have many steps before that.
How about options? As much as I appreciate the new medications that keep be created, I’m not so fond of the colour, shape, size and times I have to take it. I was at a conference where butt injectables twice a month were discussed. The researcher didn’t use those exact terms, but my point is, you can gladly poke my rear end twice a month if I don’t have to take four pills daily.
I am scared that through all the fighting, activism, tears, laughs, my immune system will just run out of gas and I won’t be around in a year.
Also, communication between health providers and patients is crucial. This year I may have spent the same amount of time in a medical facility as the same time in my school. My point is, if I am going to be spending that much time with you, please do not look at me as patient 014 filed under HIV. Please look at me as Muluba, a girl who has been through hell and back, and at 23 is begging to see the age 30.
I don’t express this often, and I can’t believe I am ready to reveal it, but here goes. I am scared. I am scared that through all the fighting, activism, tears, laughs, my immune system will just run out of gas and I won’t be around in a year.
If that is the case, I will at least go down fighting with all my might. I will continue to advocate for myself and others and have even the smallest impact in eradicating HIV/AIDS. The most enlightening thing of all is that I am not alone. I can’t be alone and wholeheartedly admit that those of us living with the illness need the strength and encouragement of our allies. We need to complain, fight, cry, laugh and, yes, celebrate together.
We need to be compassionate with our souls, mourn our fears, and celebrate how far we’ve come but never be complacent in where we are. I want to believe in the SDGs, I really do. For me, it’s life changing. It’s lifesaving.
Muluba Habanyama is 23-year-old public speaker in the Greater Toronto Area. She has a degree in journalism and certificate in community based research. She continues her activism work thorough many outlets and is popular online including her new blog muluba.ca.
This blog is part of the blog series: Barometer Rising: No time to backtrack the fast track to ending HIV as a global health threat by 2030 by the Interagency Coalition on AIDS and Development (ICAD) in recognition of World AIDS Day (1 December). The series features a selection of blogs written by our member and partner organizations. Contributors share their broad range of perspectives and insight on what they think needs to be done to strengthen our HIV prevention efforts at home and abroad in order for the world to meet the ambitious target of ending AIDS as an epidemic by 2030.
Disclaimer: The views and opinions expressed in this blog series are those of the authors and do not necessarily reflect those of ICAD.