It is September 25th, 2023. This day marks my 11th year of knowing that I'm living with HIV. Eleven years is a long time. Time is one of those things that seems to be dragging and suddenly you look up and wonder where the time went. I think last year when I hit the 10-year mark and my body and I turned 50, I was reflective of my relationship with HIV. The emotional places and spaces it has taken me. The lessons about myself and other people that I've learned. The weight and worth of my life with HIV. It's challenging sometimes to balance between life with HIV and "real" life, lol. Which in and of itself is an interesting concept. All life is real life, but I try to keep the balance between working and thinking about HIV and enjoying life outside its reach and shadow. This year has me thinking about numbers.
There are always numbers involved with HIV. Numbers like your viral load and CD4 count. Other numbers, like how many months since your last appointment or how much your medication may cost. Even your adherence is measured by how many days a month you take your pills. Or my current low-level irritation (brought on by aches and pains in my joints, bones, and body) - how many years has HIV and the inflammation it causes added to my chronological age, and potentially cut from my biological clock? That's an occasional thought since I refuse to get caught up in that particular line of thinking. In a sarcastically musing kind of way, I wonder if I've officially been living with HIV long enough to be considered a long-term survivor. It sure as shit feels like it.
Numbers are an interesting way to reflect. They are measurements of so many things. Health, wealth, weight, and time immediately come to mind, not necessarily in that order. Numbers are stuck in my head and maybe if I write them down, they'll give me some peace. These are my numbers as I live with HIV:
- I will be 51 in about a month. That came fast, especially this last year.
- As I write this, I've been living with HIV for 132 months; 573.9525 weeks; 4017 days; 96,424 hours; 5,785,441.2 minutes; and 347,126,472 seconds, give or take a few.
- My lowest CD4 count was about 260 (terrifying), and my highest was somewhere around 1200 (surprising). Don't know what it is right now since I haven't been to the doctor in seven months.
- I'm undetectable, which means by US standards there are less than 20 copies of virus in a milliliter of my blood. I remind myself that it's still my blood and my t-cells and this damn virus can't have them.
- I've lost track of how many times people have said I don't look like I have HIV. As if it has a look.
- There have been four times I have been exposed to stigma in health care that has reduced me to furious tears, underscored by shame and helplessness. Those experiences absolutely shaped the nurse I am today.
- I stopped counting the number of times I've had to disclose my status and the number of times someone has reacted poorly. That shit will drive me bat-shit crazy if I reflect on it too much.
- Let's not even get started on the number of times I have had to redirect people from the word AIDS and its connotations and outdated way of thinking about the virus and explain why language matters so much.
- I've attended at least 10 conferences on HIV/AIDS in the last two years and only the tiny Black baby Jesus knows how many webinars and zooms; and each has taught me something about HIV, its life cycle, the medications, the science of it, or about people and human nature. Usually all at the same time.
I can't help but wonder if, as you read this, those numbers add up to reflect what people think life with HIV is? Do they add up to reflect MY LIFE with HIV? I can tell you that they actually add up to so much more.
A whole life lived and being lived.
A life that involves lows of pockets of stigma and worry and reflecting on my mortality and failures to one of highs of survival turned into thriving and accomplishments. Those numbers have created the voice of an advocate at the intersections of being Black, a woman, and aging, all tied up with a red bow that's easily recognizable for what it represents. Those numbers are dimensions of what the rest of my life may look like. The numbers will change, but the sum total of them will not. I'm living my life; HIV is along for the ride.
Be well. You matter.