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From HIV To Hope: Camille's Story Of Diagnosis & Survival In Honor Of World AIDS Day

Her Voice

This is Camille's story, as told to Brenda Alexander.

I returned from my first trip abroad, a dream vacation in Africa. It was 1994 and I was 25, feeling on top of the world.


When I arrived home, I fell ill. My physician told me that I'd contracted Idiopathic Thrombocytopenic Purpura, also known as ITP. My doctor said that it was a side effect of Mefloquine, a prevention medication against malaria that I'd taken before the trip.

ITP had me feeling fatigued and I developed bruises all over my body. Doctors told me that some bruises may be permanent, but it wasn't likely. I was sent to a hematologist to investigate my blood and why I wasn't recuperating. I was put through a series of blood tests; one of them was an HIV test. The first time, they lost my results, so I had to retake it. Back then, results took one month to come back, which I meant I had to wait an agonizing two months for my results.

After those two months passed, I was told that I was HIV positive.

The doctor told me they wouldn't treat people who had both ITP and HIV. I was left to fend for myself. And during that time, you were considered dead with that diagnosis.

I asked if they could detect when I was infected. "You've had HIV for two years," they said.

I had been dating my boyfriend longer than two years and hadn't been with anyone else.

I knew men played the reversed psychology/blame game after being confronted about STDs so I devised a plan in case he tried the same. I contacted all former lovers and advised them to get tested. They all reported back that they were negative.

When I finally told my boyfriend, he was in denial. "The test is wrong," he claimed. I countered that the doctors ran my blood 3-4 times per protocol to ensure the diagnosis was correct and my exes were negative. He refused testing. "I won't be able to handle it like you," he said.

Six months later, he was incarcerated. While in prison, he tested positive. When we spoke, he was calm, never blaming or questioning me. Instead, he suggested we get married since we both had the virus. He knew he was the culprit. In fact, he'd messed around before.

A year prior, he confessed he'd contracted chlamydia after cheating and told me to get tested. He paid for my doctor's visit and accompanied me to my appointment. My results came back negative. The counselor suggested that I also take an HIV test but I declined. I'd already suffered enough trauma from that experience. I refused because I couldn't face a potential positive result. Had I taken the test, I could have learned about my status sooner.

The doctor prescribed the only medication available at the time, AZT. I had a friend who passed from the virus and deteriorated quickly while on AZT. He lost weight and his skin color changed. Witnessing that, I opted out of treatment. I told my doctor that I was leaving town. "Could you give me a copy of my medical records?" I asked. "I'll handle it when I move."

I left Philadelphia and walked with HIV untreated until my health began to become affected. I was scarred by the insensitivity of the first doctor.

I told two people about my status. One of my cousins told her husband. Another told her kids. A friend of mine had a friend who liked me. I went out with him and disclosed. He went back and told my friend - who had no idea. The news was too big for people.

The part of my life that "suffered" were romantic relationships. I never cared about marriage, but I wanted a lifelong partner. The difficulty in dating and living with HIV became real very - fast. I took a vow of celibacy.

It wasn't until four years later that I was intimate with someone, but it was an uphill battle. A man that I was dating for about a year (without sex) told me he'd never have sex with me after I disclosed my status. He later changed his mind. But with him, as with many, you can feel their fear during sex. I ended things because I didn't want to burden him.

Some were fine with my status because they were educated on the effectiveness of condoms. Others vehemently refused to date me. One guy even asked, "Why'd you let me kiss you?" after I disclosed my status to him.

For a long time, I reconciled that I may be "alone." So I focused on other aspects of my life.

A woman I'd met in my 20s was an avid traveler, which I admired. I asked how it was possible for her to travel to so many places. She told me, "If you don't ever believe you will, then you won't."

That stayed with me. I thought, I don't have to live a long life to live a great life.

So every day, I began to live as if it were my last.

I poured my energy into traveling. I performed and traveled as a vocalist with international bands and eventually became an HIV advocate. Without HIV, I wouldn't have been as full because I wouldn't have had the emergency courage.

Still, things were difficult. It wasn't until I was positive for about 20 years when I learned that aside from condoms, daily medication and becoming undetectable would prevent me from passing the virus onto anyone. There had been advances before but when I was avoiding treatment, I knew nothing. I became fearless. Before that, I felt like I was in a state of hiding. It was stressful and demoralizing.

I felt like a despised animal among human beings. I felt like damaged goods and less than a woman.

Today at 50, I don't have children. Many women are mothers before age 25, which was the age of my diagnosis. I took birth control at 25 to avoid unplanned pregnancies. Had PrEP been available back then, I would have planned for a family.

For women in particular with this virus, we are more likely to be ashamed or feel guilty, so we don't talk about it.

Many women share men, whether it is acknowledged or not. How many women are in on-again-off-again relationships with men? How about sleeping with married men or men who live with their current or former partners? Do they really know their status or the status of their other partner(s)?

Assumptions are made because women feel like the men they are sleeping with are men who belong to them. Trust cannot be implied when it comes to having sex.

You have to be your own advocate, especially in terms of your sexual health. This extends beyond the bedroom. Talk to your physicians. In many cases, your provider isn't likely to bring up preventative tools besides birth control. I had several doctors I saw after my diagnosis who weren't aware of my status. They didn't ask, I didn't tell, and I wasn't tested. You have to ask. They are more likely to have the conversation with you after an unfortunate incident.

Just like you take birth control to avoid unplanned pregnancy, use condoms and/or PrEP to protect yourself against STIs.

If diagnosed, life changes. Your family life will change. Your opinion of yourself will change. No matter how strong you are mentally - no matter how educated you are - there is an immediate shift that takes place. And that weight is avoidable.

When you hear my story, you probably think HIV isn't an issue anymore, considering I was diagnosed in '94. That's far from the truth.

In the 90s, we had the Magic Johnson announcement, the sudden death of Eazy E and the tears from 11-year-old Hydeia Broadbent to make us "woke" about this virus. We don't have a FACE to the virus anymore.

Many are undetectable and they don't have to disclose their status. This is why conversations are so important.

My life is amazing and I wouldn't trade my journey. I found and lost love, I'm confident and am an expert on my virus, making a future mate comfortable as I'm able to educate them. There's no longer a barrier.

People can live long, healthy lives and outlive people with other diseases. But the stigma is still strong.

HIV is equated to promiscuity, homosexuality, and drug users. That's the dangerous part.

Don't be a part of the stigma. Know your status. Advocate. As the saying was in the 90s, "If it affects one, it affects all."

This fight is nowhere near over.

For more information on HIV/AIDS, click here. For more information on where to get tested, click here.

Featured image by Getty Images

ACLU By ACLUSponsored

Over the past four years, we grew accustomed to a regular barrage of blatant, segregationist-style racism from the White House. Donald Trump tweeted that “the Squad," four Democratic Congresswomen who are Black, Latinx, and South Asian, should “go back" to the “corrupt" countries they came from; that same year, he called Elizabeth Warren “Pocahontas," mocking her belief that she might be descended from Native American ancestors.

But as outrageous as the racist comments Trump regularly spewed were, the racially unjust governmental actions his administration took and, in the case of COVID-19, didn't take, impacted millions more — especially Black and Brown people.

To begin to heal and move toward real racial justice, we must address not only the harms of the past four years, but also the harms tracing back to this country's origins. Racism has played an active role in the creation of our systems of education, health care, ownership, and employment, and virtually every other facet of life since this nation's founding.

Our history has shown us that it's not enough to take racist policies off the books if we are going to achieve true justice. Those past policies have structured our society and created deeply-rooted patterns and practices that can only be disrupted and reformed with new policies of similar strength and efficacy. In short, a systemic problem requires a systemic solution. To combat systemic racism, we must pursue systemic equality.

What is Systemic Racism?

A system is a collection of elements that are organized for a common purpose. Racism in America is a system that combines economic, political, and social components. That system specifically disempowers and disenfranchises Black people, while maintaining and expanding implicit and explicit advantages for white people, leading to better opportunities in jobs, education, and housing, and discrimination in the criminal legal system. For example, the country's voting systems empower white voters at the expense of voters of color, resulting in an unequal system of governance in which those communities have little voice and representation, even in policies that directly impact them.

Systemic Equality is a Systemic Solution

In the years ahead, the ACLU will pursue administrative and legislative campaigns targeting the Biden-Harris administration and Congress. We will leverage legal advocacy to dismantle systemic barriers, and will work with our affiliates to change policies nearer to the communities most harmed by these legacies. The goal is to build a nation where every person can achieve their highest potential, unhampered by structural and institutional racism.

To begin, in 2021, we believe the Biden administration and Congress should take the following crucial steps to advance systemic equality:

Voting Rights

The administration must issue an executive order creating a Justice Department lead staff position on voting rights violations in every U.S. Attorney office. We are seeing a flood of unlawful restrictions on voting across the country, and at every level of state and local government. This nationwide problem requires nationwide investigatory and enforcement resources. Even if it requires new training and approval protocols, a new voting rights enforcement program with the participation of all 93 U.S. Attorney offices is the best way to help ensure nationwide enforcement of voting rights laws.

These assistant U.S. attorneys should begin by ensuring that every American in the custody of the Bureau of Prisons who is eligible to vote can vote, and monitor the Census and redistricting process to fight the dilution of voting power in communities of color.

We are also calling on Congress to pass the John Lewis Voting Rights Advancement Act to finally create a fair and equal national voting system, the cause for which John Lewis devoted his life.

Student Debt

Black borrowers pay more than other students for the same degrees, and graduate with an average of $7,400 more in debt than their white peers. In the years following graduation, the debt gap more than triples. Nearly half of Black borrowers will default within 12 years. In other words, for Black Americans, the American dream costs more. Last week, Majority Leader Chuck Schumer and Sen. Elizabeth Warren, along with House Reps. Ayanna Pressley, Maxine Waters, and others, called on President Biden to cancel up to $50,000 in federal student loan debt per borrower.

We couldn't agree more. By forgiving $50,000 of student debt, President Biden can unleash pent up economic potential in Black communities, while relieving them of a burden that forestalls so many hopes and dreams. Black women in particular will benefit from this executive action, as they are proportionately the most indebted group of all Americans.

Postal Banking

In both low and high income majority-Black communities, traditional bank branches are 50 percent more likely to close than in white communities. The result is that nearly 50 percent of Black Americans are unbanked or underbanked, and many pay more than $2,000 in fees associated with subprime financial institutions. Over their lifetime, those fees can add up to as much as two years of annual income for the average Black family.

The U.S. Postal Service can and should meet this crisis by providing competitive, low-cost financial services to help advance economic equality. We call on President Biden to appoint new members to the Postal Board of Governors so that the Post Office can do the work of providing essential services to every American.

Fair Housing

Across the country, millions of people are living in communities of concentrated poverty, including 26 percent of all Black children. The Biden administration should again implement the 2015 Affirmatively Furthering Fair Housing rule, which required localities that receive federal funds for housing to investigate and address barriers to fair housing and patterns or practices that promote bias. In 1980, the average Black person lived in a neighborhood that was 62 percent Black and 31 percent white. By 2010, the average Black person's neighborhood was 48 percent Black and 34 percent white. Reinstating the Obama-era Fair Housing Rule will combat this ongoing segregation and set us on a path to true integration.

Congress should also pass the American Housing and Economic Mobility Act, or a similar measure, to finally redress the legacy of redlining and break down the walls of segregation once and for all.

Broadband Access

To realize broadband's potential to benefit our democracy and connect us to one another, all people in the United States must have equal access and broadband must be made affordable for the most vulnerable. Yet today, 15 percent of American households with school-age children do not have subscriptions to any form of broadband, including one-quarter of Black households (an additional 23 percent of African Americans are “smartphone-only" internet users, meaning they lack traditional home broadband service but do own a smartphone, which is insufficient to attend class, do homework, or apply for a job). The Biden administration, Federal Communications Commission, and Congress must develop and implement plans to increase funding for broadband to expand universal access.

Enhanced, Refundable Child Tax Credits

The United States faces a crisis of child poverty. Seventeen percent of all American children are impoverished — a rate higher than not just peer nations like Canada and the U.K., but Mexico and Russia as well. Currently, more than 50 percent of Black and Latinx children in the U.S. do not qualify for the full benefit, compared to 23 percent of white children, and nearly one in five Black children do not receive any credit at all.

To combat this crisis, President Biden and Congress should enhance the child tax credit and make it fully refundable. If we enhance the child tax credit, we can cut child poverty by 40 percent and instantly lift over 50 percent of Black children out of poverty.

Reparations

We cannot repair harms that we have not fully diagnosed. We must commit to a thorough examination of the impact of the legacy of chattel slavery on racial inequality today. In 2021, Congress must pass H.R. 40, which would establish a commission to study reparations and make recommendations for Black Americans.

The Long View

For the past century, the ACLU has fought for racial justice in legislatures and in courts, including through several landmark Supreme Court cases. While the court has not always ruled in favor of racial justice, incremental wins throughout history have helped to chip away at different forms of racism such as school segregation ( Brown v. Board), racial bias in the criminal legal system (Powell v. Alabama, i.e. the Scottsboro Boys), and marriage inequality (Loving v. Virginia). While these landmark victories initiated necessary reforms, they were only a starting point.

Systemic racism continues to pervade the lives of Black people through voter suppression, lack of financial services, housing discrimination, and other areas. More than anything, doing this work has taught the ACLU that we must fight on every front in order to overcome our country's legacies of racism. That is what our Systemic Equality agenda is all about.

In the weeks ahead, we will both expand on our views of why these campaigns are crucial to systemic equality and signal the path this country must take. We will also dive into our work to build organizing, advocacy, and legal power in the South — a region with a unique history of racial oppression and violence alongside a rich history of antiracist organizing and advocacy. We are committed to four principles throughout this campaign: reconciliation, access, prosperity, and empowerment. We hope that our actions can meet our ambition to, as Dr. King said, lead this nation to live out the true meaning of its creed.

What you can do:
Take the pledge: Systemic Equality Agenda
Sign up

Featured image by Shutterstock

When Ngozi Opara Sea started Heatfree Hair almost a decade ago, curly and kinky extensions weren't the norm on the market as they seem to be today, especially if you wanted those textures in quality human hair. Beauty supply stores mainly sold synthetic curly hair, and there was a surge of renewal for women who were just beginning to embrace natural styles, taking to YouTube to experiment with new techniques and styles.

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This article is in partnership with Staples.

As a Black woman slaying in business, you're more than likely focused on the bottom line: Serving your customers and making sure the bag doesn't stop coming in. Well, there's obviously more to running a business than just making boss moves, but as the CEO or founder, you might not have the time, energy, or resources to fill in the blanks.

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In xoNecole's Our First Year series, we take an in-depth look at love and relationships between couples with an emphasis on what their first year of marriage was like.

It was a cold winter night in Chicago, more than a year ago. Your girl was scrolling through the fifty-eleven million options on Netflix to find something interesting to watch. I spotted this new show, The Circle, and have not looked away since. Produced by Studio Lambert and Motion Content Group, it premiered in January 2020 and has become my new favorite type of game show. Hosted by Michelle Buteau, The Circle is about contestants who are isolated in their own apartments and can only communicate with others via an online social media platform.

On season 2 of The Circle, the world fell in love with DeLeesa, the contestant who would eventually be crowned winner of the cash prize. She won the game by playing as a single dad named Trevor, who is actually her husband. As a true fan of the series, I figured it was only right to sit down with DeLeesa and Trevor to get the deets on how marriage has been for them IRL. So, let me take y'all back into time real quick, to the beginning of their love story.

It was 2007, and DeLeesa was starting her first day of school as a college freshman. She was getting adjusted to her new dorm and was introduced to her new resident assistant, *drum roll please* Trevor St. Agathe. They quickly became friends and Trevor helped DeLeesa find different activities around campus. After a year, they decided to take things to the next level.

Now, 14 years and two beautiful children later, the married couple have been focusing on doing whatever it takes to create the best life for their children. Since college, the power of commitment and open communication is what has kept DeLeesa and Trevor by each other's side.

One thing that we can all learn from The Circle and social media in general is that everything is not what it seems. When I connected with the couple, DeLeesa wanted to get the story straight about her and Trevor's love story. "I feel like people look at couples on social media and they think that things are perfect when that's not true. We went through stuff, too. We just figured out how to overcome it and move together as a unit."

In this installment of xoNecole's Our First Year, Deleesa and Trevor share how marriage is about work, navigating through the ups and downs, and prioritizing family. Here's their story:

How We Met

DeLeesa: I got to school early because I was starting [college] a semester late. I met him, we became friends, and I developed a little crush on him. One day, we were hanging out in his room and he just didn't want me to leave (laughs). So we were messing around for about a year. Exactly one year later, I told Trevor that I am not going to keep doing this unless he becomes my man. If he didn't make me his girl, then we were done. (Laughs)

Trevor: I tried to ride it out as long as I could (laughs). At the time, I was thinking, since I'm still in college, I shouldn't be tied down. But I knew that if I didn't make it official, she was going to leave. So, she was right, and we took it to the next level.

First Impressions

Trevor: I thought she was absolutely beautiful. She was pretty and the new girl on campus. So I knew she was going to get lots of attention. But I didn't want to be on that with her, so I continued to just be a stand-up guy. At first, it was the normal student-and-RA relationship. She would ask me what activities she could do on campus and I gave her a few suggestions. For a few days, we continued to hang out and I started to realize the chemistry we had between us.

DeLeesa: When I first met Trevor, I wasn't even thinking about going that [relationship] route with him. I was new to the school and I just wanted to be his friend. But because we shared bathrooms in the dorm, this man would just walk around in his towel sometimes. I couldn't help but notice him more after that. I just thought 'He is fine!' (Laughs) He was so nice and he never pressured me into anything, but, he knew what he was doing.

Favorite Things

DeLeesa: I love that he has unconditional love for me. I feel like that no matter what I do or no matter how mad he gets, he is still always going to be by my side for anything that I need. We have been together for a long time. Even though we had breaks in between, he has always been there for me.

Trevor: It's not just one thing for me, but I can sum it up: DeLeesa is everything that I wish I was. She is very much not afraid of what other people think and she is very determined to go after what she wants. She has that go-getter mentality and it is so attractive to me.

"DeLeesa is everything that I wish I was. She is very much not afraid of what other people think and she is very determined to go after what she wants. She has that go-getter mentality and it is so attractive to me."

Wedding Day

Trevor: On our wedding day, I was crying like a baby when I finally saw her. That is my fondest memory of that day: seeing my wife-to-be from a distance and instant water works. (Laughs)

DeLeesa: I really enjoyed our first dance. Our wedding was pretty big, and I planned the whole thing. I was very hands-on and it was hard for me to just have a moment and be present. But when we had our first dance, that was our time to just be with each other and not worry about anything else. It really hit me that we were married at that point.

The One

DeLeesa: Well, the thing with Trevor and I is that we broke up a lot. We reached nine years of being on and off. By that time, we said to each other that this would be the last time we were going to break up. We were going to try our best to do everything that we could to stay together. And if we didn't work out, we were going to go our separate ways. For me, I really wanted us to work because I did see him as my future husband and my children's father. So it was the conversation we had to not break up that was my "you are the one for me" moment.

Trevor: It was something that I always knew. Young Trevor would say, "If I had to get married, this is who I want to marry." When I knew it was time to take things more seriously with her, it was after we had that conversation. Another confirmation that DeLeesa was the one was when we had to move to Canada from New York. I thought to myself that this woman must really love me to pack up and move to another country for me. This woman trusts me so much and she is my forever.

"The thing with Trevor and I is that we broke up a lot. We reached 9 years of being on and off. By that time, we said to each other that this would be the last time we were going to break up. We were going to try our best to do everything that we could to stay together."

Biggest Fears

Trevor: The questions that popped into my head were, "Can I do it?"; "Can I be a good husband to her?"; or "Was I truly husband material?" You can't take a test for that or study to get those answers. You have to just do it, apply your morals and values, and do the best you can. What has helped me with this is continuing to reaffirm how we feel about one another—affirmations that let me know that she is happy and I am doing a good job. Marriage isn't that much different from what we have already been doing this entire time. We just wear rings.

DeLeesa: My biggest fear [is related to the fact that] I am a very independent person, [so] if I do not like something, I can be out, quick! So with me, I questioned if I could stay put and fight through the bad times within a marriage. I would question if it is worth sticking it out since this is a lifelong commitment. What has helped me get through that is reminding myself that I can still be independent within my own marriage. I can still do things on my own and still share my life with someone I really care about.

Early Challenges

DeLeesa: I feel like I have been really good at keeping my relationship with my friends balanced with my partnership with Trevor. So when we first got married, my personal challenge was me trying to juggle between being a good wife and still making time for my girls. I really didn't want to lose sight of who I was in the process of marriage.

Trevor: My work at the time forced me to travel a lot. So when you are in that honeymoon phase, it's important to have quality time together. It was hard with my job to enjoy life together as a married couple in the beginning. Yes, we have been together for a long time. But this was different. Not being around my wife as much as I wanted to was really hard for me and the both of us. Our communication started slacking and we definitely struggled during that time.

Love Lessons

Trevor: There's two lessons that I have. One lesson is that I am a husband first. I have spent a lot of time not being a husband so it can be easy for me or anyone to continue to behave that way. But my wife always has to come first, no matter what is going on in life. When you're married, you have to reinforce that. My second lesson that has helped in our marriage is making sure I do things in order to make her life easier. It can be the simplest thing, but for me, it is a huge priority.

DeLeesa: My biggest lesson is being able to learn from each other. For example, if he is doing simple things to make life easier for me, I am learning from him how to show up for him to make him happy. It can be easy to just receive everything he is putting forth, but it has to be give and take for us.

"I am a husband first. I have spent a lot of time not being a husband so it can be easy for me or anyone to continue to behave that way. But my wife always has to come first, no matter what is going on in life. When you're married, you have to reinforce that."

Common Goal

Trevor: To do everything in our power to ensure that our girls have the best possible life. Everything that we do at this point is for them. Before children, I may have moved slower working toward certain things, but there is definitely an added fire on how we approach things because of them.

DeLeesa: I agree. The number one goal is to be the best parents we can be. We want to set up generational wealth and we want them to be culturally aware. We want them to grow up and be proud of everything we have done for them.

Best Advice

DeLeesa: My advice would be don't go looking for advice, honestly. A lot of people are going to have an opinion about your life and sometimes that may not be the best for you. People can have different intentions and may give you the wrong advice. So I feel that if you need to vent, then yes, have someone to confide in. But don't take their word as facts. Try to figure out your marriage for yourself. Stick to your intuition and what you want to do, no matter if you are being judged for it.

Trevor: The things that matter are to be patient, listen close, choose to be happy, and love hard. I also think when people come to terms with the fact that marriage is work, then it is more possible for people. There are honestly more things to be happy about with the person that you marry. You have to keep all the things that you love about that person at the forefront to get you through. Once you do that, you will be fine.

Follow Deleesa and Trevor on Instagram @leesaunique and @trev_saint and their family page @itsthesaints.

Featured image via Instagram/Leesaunique

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