12/21/2017 0 Comments
In interviewing Kimberly Knight, Creator and Editor of The Lux Blog and HIV cure advocate, I kept coming back to the Mr. Rodgers quote about looking for the helpers. She is always in the community helping when so many others turn a blind eye. However, the opportunity to interview her and put her story in writing, brought to mind another gem.
“Knowing that we can be loved exactly as we are gives us all the best opportunity for growing into the healthiest of people.” Mr. Rodgers
Kimberly’s story is one of unconditional love and bravery. Kimberly is a hero she didn’t even see coming. An unlikely turn of events in her life completely changed who she is and what she has chosen to spend the rest of her life doing.
Perhaps a better way to state that would be unlikely bravery. The bravery to forgive. The bravery to share her vulnerable story to help others. The bravery to get tested for HIV well over 40 times. The bravery of dedicating her life to ending the stigma surrounding HIV and finding a cure for the disease itself. Kimberly Knight is many things, especially brave.
In a moment when she could have chosen a lifetime of anger and hurt, she chose forgiveness. She chose love. A decision she’s still surprised she made. She tells it best.
“My story begins September 2012 with my husband passing. My husband Brandon went to the park in our neighborhood and came back home with a bug bite.
“We doctored it a bit at home at first. The next day it started looking infected. We decided to go on into urgent care. They told him take care of it at home, take antibiotics and see what it looks like in a week. They diagnosed it as a spider bite.
“A week later it was still looking really bad, so we went back to the doctor. They prescribed him some stronger antibiotics this time. Told us to watch for change in the next 3 to 5 days. If it got worse the would refer us to the wound clinic. They took a sample and said they’d get back to us.
“Less than 48 hours later I had to go to a women's conference out of town. I went and met a pastor there. She told me, “There's going to be a great tragedy in your life, but it is going to birth something really amazing. You’re going to touch millions of people.”
She literally just walked up to me and I was sitting in chair watching the conference. She was up there speaking and then she came right over to me, grabbed my hands, and prophesized over me. I've never had anyone do that. It was a really interesting and enlightening experience.
“And I kept thinking oh God is one of my parents going to pass? Or my favorite uncle? Am I going to lose my job? What is going to happen?
“I get back home the next day. My husband is looking sick and now has a fever now. We're getting a lot of bad symptoms. The wound looks really bad. I got him to the hospital and into a wheelchair. W get into a doctor and of course when you check in they ask you about do you have a history of any of these illnesses? They asked him about diabetes, blood pressure, HIV, all this. He said he had no history of anything.
“We're admitted to the hospital about an hour later and they tell me his kidneys are shutting down 50%. I'm thinking this 31-year-old, healthy male. I've always known him to be healthy. Why is he having kidneys shutting down from this bug bite? This is ridiculous. What type of spider was this?
“The doctors took another sample and got him into ICU. Once they got him hooked up to everything he has a seizure. He’s never had an issue with seizures and now they can’t stop the seizures from coming. We don't know why they're coming. They got him to calm down maybe 2 hours later.
“I called his family. Everyone arrived the next day. We're into Monday now. The doctors are saying we're starting to see him losing brain activity.
“Tuesday gets here and he's getting weaker and weaker. They have me sign off on all this paperwork to have them tested for everything. Then that afternoon they come up to me and say, “Mrs. Moore we need to speak you to you privately.” And I’m said, “My best friend is here and she’s a nurse. She can explain to me whatever’s going on.”
“They were like, “We’ll be very straightforward with you. He is HIV positive. We believe he is dying of AIDs and it has advanced to this level.”
“My heart dropped to the floor. I just couldn't believe that he was living with HIV and did not feel the need to tell me. I had known him the majority of my life, especially my adult life. He's my husband. I loved him. I trusted him, of course. I didn't feel betrayed, but I felt so lost and distant. I felt like why did you feel you needed to be in silence like this?
“I asked for an empty room to just go into to cry, to scream, to just release for a minute. My best friend went to go get his mom, because I wanted the doctors to tell her directly. I'm in this room and I heard his soft voice say to me, “Forgive him for past, present and that's to come.”
“I walked in his room and I held his hand, at this point he's in a coma-like stage. We never got to have the conversation that he was living with HIV and didn't tell me. I told him I forgiven for past, present and what's to come.
“Within a few hours he started losing brain activity and clinically died. We kept him on life support to let the family come in and see him in his regular state to say their goodbyes. That Wednesday I had to take him off life support - that Wednesday night at 7:30 pm on September 26th, 2012.
“That was the day that really changed my life because I couldn't imagine ever at 31 years old, or anytime in life, having to take someone off of life support that you love so much. Or that the stigma was that strong in our community to keep him from being open about his status, even with me, his intimate partner. That is my story.”
Can you imagine losing your husband that fast, at such a young age and it coming with the news that he had HIV? Can you imagine forgiving him? Kimberly continued on the high road and chose to dedicate her life to ending the toxic stigma surrounding HIV and AIDS on the way to finding a cure.
Within a month of Brandon’s passing Kimberly began her HIV advocacy work beginning with the Aids Alliance of Carolinas. She volunteered with the organization for 3 years, inclusive of an internship. She also has worked the North Carolina AIDS Action Network through Greater Than AIDS.
Also within the first month she began therapy, something that was very important to her. Kimberly shared how therapy has been instrumental for her. “The first month I went to therapy. It was very important to me to have a therapist. Definitely important to have a therapist to talk to about all these different emotions you're feeling.
“I literally went through his funeral and everything calm. I didn't have a breakdown. I think the worst out of the 5 years I've had was that day in the actual hospital room to myself. Even to this day, I still haven't had any other major issues with it. I've learned to cope with it and see the value in the life lesson of his life being lost.
“But in that same sense, I lost family members, I lost in-laws. I lost friends, I thought there were friends.
"People started peeling away once they started hearing what he died of. They shied away from it and they too stigmatized him and they stigmatized me for wanting to be an advocate. It was a lot to go through.
“Now I get to work with UNC Chapel Hill with 2BeatHIV Project. Going into my second year with them, with Doctor Matthews. I love it. I love doing advocacy work. It’ been my therapy. And my blog of course. It’s been therapeutic getting to know people in the Triangle and North Carolina.
“I've helped 75 black males get on medication in this area. It feels beautiful that I've helped 75 Brandons get help. That's my life's work.”
Through her therapy, work and advocacy Kimberly has learned a lot about HIV. Turns out her hometown, where both her and her late husband are from, is number 3 out of 100 counties in North Carolina for number of HIV cases. She feels stigma accounts for a lot of that. In contrast Durham County ranks number 5 and neighboring Wake County is 17.
This saddens Kimberly, especially as it comes at a time when medicine has advanced with solutions. As she put it, “Even though we now live in an age where there are medications and you can live a normal, healthy life quote-unquote, there's still people, due to stigma, that don't want to go get tested.
“I’m excited about the advocacy work we’ve been doing because stigma is tough. It's really tough, but I will say in this area we've been able to bridge the gap with researchers in the community by continuously engaging.
“I think that people don't know where to start. Sometimes it's like, “Okay, I have this new diagnosis, but where do I go from here?” That's where 2BeatHIV comes in and now Dr. Matthews is developing the company that's launching, Community Expert Solutions. The company will help bridge the gap between the case manager and the community.
“They’ll bring this digital platform from where someone can enter their information through Digital LinCS from home. That helps the person affected or living with HIV not feel like they have to go into a random clinic anymore. They can communicate virtually to someone first, if they like, and then be able to go.”
Kimberly has been through years of HIV testing herself because of her late husband’s status. The current standard is after 3 years after coming into contact with someone with HIV you get tested monthly and if those results are negative for 3 years the doctors will deem that you do not have HIV.
Kimberly continues to get checked regularly and is now 5 years out with no HIV diagnosis. She accounts this to the fact that she and Brandon were using condoms as a form of birth control as they had only been married for 11 months and weren’t ready to start a family.
For someone who questioning their HIV status Kimberly has the following advice. “First step is to get tested. It’s free. Talk to your primary doctor. If you don't have a primary doctor you can go to any local health department, talk to a case manager or nurse they can help you get testing done. It’s that simple.
“If you don't want to go to the clinic you can go to safe spaces like the LGBTQ Center of Raleigh or Durham, wherever you live. Or you can go to the AIDS Alliance or the North Carolina Action Network. There are lots of safe spaces that if you don't want to be in a clinical setting per se, but more of a non-profit setting they can connect you privately to who you need to see.
“They’ll connect you with a case manager. If you need assistance with a job, housing, food, a lot of these agencies have those in-house case managers to help you. All those things are directly there where you start at step 1 and you'll start moving through the process of everything. They’ll help you get medication assistance and connect you to your local pharmacy.
“One of our big supporters is Walgreens. You can go and pick up your prescription or they can mail it to you. There are lots of great options where you don't really have to be in the forefront anymore. You don't have to go into any side doors like they used. They used to have just the HIV clinic per se. You had to go on a side door. You felt ashamed to go in. That public shaming is now more. It’s no longer like that. Now you’re just walking in like a regular doctor visit.
“There's counseling available. The North Carolina Alliance of AIDS Services have counselors called Onsite Bridge Counselors and Case Managers. There are also counselors that are at the Durham Health Department. There's lots of people in the health community that you can talk to.
“It's not that they just give you a pill of a prescription and to tell you where you can buy them. There's a whole accountability piece. It's the relationship you start to grow and build with your case manager and your doctor. You're all communicating.”
A lot has changed in recent years and HIV is now a medical condition that a person can have and through medication and lifestyle changes live a healthy, normal life. Yet stigma continues to condemn many and be the biggest culprit in spreading HIV.
Kimberly shared about a medication called PrEP that prevents the spread of HIV from one partner to another and even allows for couples to have families without transmitting HIV. “If you have a partner that's negative and you're positive, your partner can take PrEP and they have a 99.1% chance of NOT contracting HIV.
“PrEP is a once a day medication pill. So once day supplement you take every day that prevents you from contracting the HIV virus. You take that pill as the negative partner and if you can be intimate with the positive partner, unprotected without condoms and not contract HIV. It's more effective than condoms.
“PrEP has been out for a while now. We're trying to really increase the community engagement about it. There's a PrEP clinic at Duke and UNC in this area. We at 2BeatHIV promote PrEP and a lot of other agencies are promoting it.
“With PrEP if you are the negative partner and in your childbearing years trying to get pregnant, this gives you more family planning options. If you want to be in an intimate relationship with someone who is positive. We know love is blind. It doesn’t see those issues or things like that. Love can conquer our over things like this.
“We want people to understand that a person is still a human being with feelings and thoughts. A person beyond their status. There are still people want to have children, have relationships, live a normal, healthy life and take their pills and regimens to take care of themselves. It's just a conversation you can have with your partner.
“If you're both positive, you can talk about with your doctor about medications so you won't transmit any different strands to one another. HIV has various strands and that's something I think people need to be more educated to. Some are more aggressive than others.”
Kimberly is a wealth of knowledge and leads with compassion. It’s amazing to think that her dedication to the cause began with such a great tragedy. She never got to have the conversation with Brandon about his HIV status, but she did get the opportunity to say goodbye and forgive him. And through her work he lives on.
For more on Kimberly you can find her on social media. Her handle is @prettyfabwriter on Instagram and Twitter.