Vanessa Font is 33 years old and has been living with HIV since birth. She cares for her mother who is age 58 and has been living with HIV since Vanessa’s birth. Her mother is also a diabetic exhibiting many of the disease’s associated ills. Vanessa watches over, guides, and drives her 15-year-old younger brother to all of his activities, too.
ASA spoke with Vanessa via phone in mid-August to try to capture what it means as a Millennial to live with HIV and care for someone who has it. Vanessa could be called a mistress of understatement as despite her heavy load, her graciousness shone through clearly in our interview.
How does it feel to live with HIV? What is its impact on your daily life and effects of the medications?
I have mixed emotions, honestly. It is hard, it is really hard, living with HIV. I’m constantly worried if something’s gonna happen with me getting sick, or if as I grow older, if it’s going to affect my health drastically.
Living with HIV, at the same time I also feel comfortable as it’s controlled by the medications, and we have so much better medications with fewer side effects than we had in the past.
Do you work or go to school outside the home? If so, what do you do?
Currently, I’m back in school for computer science at community college. I’m hoping to get an associate’s degree and transfer to a 4-year university like USC or UCLA, whichever has better computer science, to get my bachelor’s degree and start a career.
Tell me a bit about your mother, how would you describe her?
My mom is a very outgoing person, an activist who likes to educate people about HIV and AIDS. She is part of the Hispanic community, she’s Dominican, and is very loud, outgoing, and friendly.
Your mother’s now 58, when did she become ill?
She became positive when I was born. Me and my sister are a year apart—she had a normal pregnancy with my sister and was able to breastfeed her. Nine months later she got pregnant with me, and I was premature. My mom saw that I wasn’t latching on, or feeding correctly, I was always sick, and my lymph nodes would blow up a lot. She got worried and brought me to the doctor. This was during the AIDS epidemic, so it was to test to see if her baby was OK. She was a married woman, and not worried. They tested me, and I was positive, then my father and mother, and they came back positive, but my sister was negative. This was in the 1990s.
‘Watching my mom when she was so sick made me think the same thing was going to happen to me.’
How was it growing up with her and what did you know about her illness, if anything?
Growing up was hard, she was constantly educating herself, and making sure I was OK. I saw her getting sick often, and sometimes she would stop taking care of herself to take care of us. This happened a lot, in the early 2000s, she got so depressed, then she stopped taking her meds, and that became a really big problem. She lost about 100 pounds, until she only weighed 50 pounds, and only had 3 T cells [white blood cells, crucial for the immune system]. My sister had to grow up early to take care of me, as I had medication reactions, too—they were really bad for my body.
Watching my mom when she was so sick made me think the same thing was going to happen to me.
It ended up that I had to go live with my aunt [who was given custody]. I was about 10 or 11 when this happened. She [the aunt] hadn’t been educated on the virus, or on its medications, so I was constantly put in a closet because she was scared she’d catch something. She didn’t want to educate herself. I spent 2 years with her.
Then mom saw how I was suffering and decided to pick herself up. “If you don’t start taking your medications you’ll die,” her doctor told her, just as we had started to grow up. To this day she has medical issues with her hands and feet, and we don’t know if it’s the medications, or if it’s the diabetes.
When mom first came out of her depression she couldn’t walk, she had to regain all her strength to walk, to eat, all of it, at first she was eating baby food, then she gradually started putting on weight, and walking again. While she was still in her wheelchair she said, “I want my daughters back.” Then we had to help her walk, bathe, and feed her.
We grew up really fast. My sister had to mature even faster due to taking care of Mom at my aunt’s house and making sure we were not getting sick. She’s only a year older than me. But she was making sure my aunt was taking our mom to her IV appointments for 4 hours at a time.
Regarding diabetes, was that a life-long issue or did it happen in older age?
Years ago my mom found a boyfriend who she’s had for 30 years, he is my stepfather. Then she got pregnant with our little brother, who is 15 years old now. She got diabetes with that pregnancy and it just stayed. It adds a whole ’nuther layer of health issues. I feel like it’s the main concern for her liver and kidney functions—either the medications or diabetes.
When did you have to begin taking care of her?
I’ve been taking care of her since I was a teenager. When I went to high school, I got time off sometimes to care for her, to make sure she was OK. At age 26 I started being super concerned, because once she was in her 50s things got much worse. She had been fine in her 40s, and had been able to care for our little brother.
Then in 2009 and 2012 I had B-cell lymphoma, and in 2017 I got Hodgkins Lymphoma. I’m currently in remission.
You brother, does he go to school locally?
My brother is thriving at age 15, he’s HIV negative, he’s an athlete, he plays basketball and football, and he doesn’t know of mom’s diagnosis. We talk to him about STDs, but right now we don’t think he’s ready to hear about HIV/AIDS.
‘I would say I feel sometimes I don’t have it like my peers—they’re married, they have kids, they have their own thing going on.’
He goes to a charter school for athletes in Long Beach, for basketball, he’s trying to do this whole transition. He loves it. His coaches said they will look into a team for him, so he could be a part of the NCAA for college. He’ll have to choose where to go.
Do you feel you function as his sister or mother?
I’m more of his mother, he comes to me for homework, and issues at school. My sister has two kids under age 5 now, so sometimes she comes around, and he goes to see her, too.
What do you do to preserve your mental health?
I have a therapist [said with a laugh], and I make sure I take my time off as well. I let them know when I need a break. When it’s my free day, I’ll go to the gym, hang out with my boyfriend. Plus I’m in school, my schedule will start again in September. I’ll have to mesh my schedule with brother’s.
What about your physical health?
My physical health is great, I try to make sure I’m good so I can perform my best with my brother and my mom. I go to the gym and make sure I eat well. I feel good.
What are your biggest worries financially?
I wanna say if something happens to mom, in the back of my head, if something happens, we really don’t have the funds. For long-term care. Or if she passes. I’m in the background, I go to her doctor’s appointments. I can see her numbers, so I’m constantly on her to please make sure you do this, do that, I can calculate how things can happen. I tell her, in 5 to 6 years if you keep going like this, it won’t end well.
In a nutshell, what has been the impact of caregiving on your life?
I would say I feel sometimes I don’t have it like my peers—they’re married, they have kids, they have their own thing going on. Compared to me, I’m the one taking care of my brother, taking care of my mom. I have a boyfriend, but we’ve never sat down and talked about moving in together and we’ve been going out for about a year.
When you look at others your age and their lives, how does that make you feel?
A little left out.
Photo caption: Vanessa Font, left, with her mother.
Photo credit: Courtesy Vanessa Font.
