I was very touched by the story. Brandee Evans, after speaking with her, has a very wonderful spirit and caring personality. It was great speaking with her and hearing how things used to be and how they are now caring for her mother. As we grow up, we have this view: my parent(s) is supposed to care for me. But there are many times when we must step up to care for our parent(s) in times of need.
Q: Tell me a little about yourself and how MS has personally impacted you and your mom.
A: Thank you for having me. So I'm a full-time caregiver to my mom, who has multiple sclerosis, and girl, it has been one of the most challenging yet rewarding roles I've ever had. I know much more today than when mom was diagnosed in 2004. So I'm just excited to share the knowledge with others in the Black MS community. And you know, today, I am a proud, proud partner with Genentech as a paid spokesperson to join their MS visibility campaign that celebrates diversity in MS and provides culturally relevant resources to enable better MS care.
Q: When your mom was first diagnosed, how was that for her? And then what made you decide to be the one to take on this role for your mom?
A: So when she first got diagnosed, it was 2004. I'm just going to be honest with you, I was in denial. I was delusional. I thought that mama was being dramatic. Just because I had never heard of this. What is MS? Like, what is Multiple Sclerosis? So it was very, very tough. She and my dad were together at that time too. And so, it was the falls. She was falling a lot. She was having pain in her hand, so she thought it was carpal tunnel issues because she was a secretary at the time. And the doctors were like, oh, well, just lay off the keyboard a little bit. She was driving a lot too. But it was crazy because she was hitting things.
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She would have a lot of wrecks. That part, too, was starting to be disturbing because my mom was a great driver. And it was just like, so you just running into the door now, like, what is happening? But that was her losing control of her legs and things. Why am I feeling just so hot she had asked us at one point. And we were like, is it menopause? You just have a hot flash, and it's just like, no, MS patients get really hot; the heat is kryptonite. So it was just a rollercoaster ride. And honestly, of the emotions of us just not understanding the disease, not understanding mom at the time, and dear God, in hindsight, if I could go back, I would do it so differently. I can honestly only imagine how afraid she probably felt and confused because no one really had answers.
Q: So what did the day-to-day look like then? And what does it look like now?
A: Day-to-day, in the beginning, was unpredictable. Like, ok, maybe mama's stressed. We're just trying to figure it out. Day-to-day now is completely different. Mom is completely immobile. She can still reach her hands just a little bit to scratch her shoulder, maybe. But she's not able to walk. She can barely talk. She's immobile from the waist down. She's incontinent. It is secondary progressive MS at this point where it has just deteriorated her very fast.
RELATED: P-Valley Star Brandee Evans on being a Caregiver for Her Mom: “It’s Bittersweet”
Q: Are you an only child, or do you have other siblings that help out a little bit?
A: I am the only girl, so I am doing it all. And, I will say, too, there was a time, and I'm honest with my brothers about this, so I don't mind sharing. There was a time when I thought my brothers didn't care. That is not the case. They are absolutely there for my support. It was a lot for them, you know what I mean. They're there to support me and mom with anything we need. And it's just that strong Black woman in us is there for real. But I was the one called for this job. So I'm the one that decided to get mama out of the nursing home and bring her to California with me, where I just knew that I could get better care.
In California, people talk more about MS than they do in the south. It's so weird to me. And it's so funny. I'm a part of the #MSVisibility campaign and we just did this amazing sit-down, they had an opportunity to sit down with an incredible group of women. Azure Antoinette, who was diagnosed in 2009, upholding advocate Dr. Mitzi Joi Williams, a neurologist, and MS Specialist Victoria Reese, founder of We Are Ill and diagnosed in 2012. We all were able to sit down and then to find out after you talk, that Dr. Mitzi's, a doctor in Georgia. I didn't know this when I had mama in Georgia, you know what I mean? Because I feel like people aren't talking. I'm really excited to be a part of this program, to talk more about it and just show and discuss the different studies in the Black community with MS because it is not the same as others, we're celebrating diversity in MS and we're not really talking about it the way we should.
This is unfortunate as I think that goes for a lot of illnesses. There's just not enough knowledge out there that should be.
Yeah. But you know what, they sure know a lot about cancer. Cancer gets a big platform and I just feel like MS, all of them are horrible, but when people say they have cancer, they're like, oh my gosh, they know exactly what you mean. If you walk up to people and you have multiple sclerosis, it's what is that? So I'm very proud to be a part of this visibility campaign and hopefully, we can all understand more because it's so important and big in the Black community.
When I did the #MSVisibility campaign, we did three short videos. And when I mean short, I mean, nothing's more than three, four minutes max because that will help talk about the truth of the Black MS experience, the strength, vulnerability, and the power of self-advocacy. I wish I would've known all three things when learning about MS. I think that you would benefit from it with your cousin and understanding and knowing more too. (I had mentioned that one of my cousins has had MS for a little bit now). Every day I learn something new about this disease and I'm in the house every day still learning.
Q: To piggyback off when you mentioned being the strong Black woman to take on this with your mom. Do you feel the effects of the Black Superwoman syndrome are on you? How do you deal with something like that?
A: Oh yes. We definitely talk about that in our videos on gene.com/. It's tiring; it's exhausting because you're just always battling something. I was just battling getting her the right medication for a UTI, and I'm like, they just sent her a random prescription, and they just said this would work for her. While I'm sitting there like, you all haven't even done a urine culture. You don't even know what type of bacteria you're fighting. To find out two weeks later that the medication they had my mother taking didn't get the bacteria that we were fighting and didn't even work. And just two days ago, I got a call; oh, we'll be sending your mom some different medication. But that required me calling, Ms. Edith, and Ms. Unique calling (her other caregivers). All three of us were calling and stalking the doctor's office to do more for us. And I am so exhausted as a black woman who has to do so much more than others just to get them to believe that my mom has a UTI and is in pain. They don't believe us.
Q: And it's sad. It really is. So along with being a full-time caregiver, how do you balance being an actress too?
A: I'm tired. Ok. *she laughs* I'm actually in Atlanta filming a movie now. Through resources, I was able to acquire two amazing caregivers. They're the aunties of the family now, Unique and Edith—they're with mama now. But that's hard, too, because it's hard to release the reins. It's like you have a baby and don't want to give it to anybody. And you feel I'm the only one who could care for my baby. So now I'm trying to make sure that we have this family dynamic where mom feels comfortable, I feel comfortable leaving home, but I'm always on top of it. When I get off this call, I'll be calling to see what happened at Dr. Leach's office today. You know what I mean? Like, I need to know what's going on. So, I'm still very much involved in that; it is my first priority. While I love acting, I just found out I'm nominated for an NAACP award today; I haven't even called my publicist. I got to call the caregiver first and find out what's going on with mom, and then I'll jump into that.
Q: Congratulations! So do you think in the beginning, trying to give up some of those reins, do you think it affected your acting?
A: Thank you. Thank you. No, I think it helped. I think it helped because every time I think of this, and honestly, I ask myself, God forbid, what do I do if something happens to mama? Because a lot of, most of, my strength comes from I got to do this for my mother. I got to make her life better. I know that because MS is so terrible to her. I want to do whatever I can to make the other side of her life just amazing. I mean, I just want her to sit in as much joy and normalcy as she can. So I'm just trying to still show her the light that it is still there. It shines bright for her. Whatever I can do. And that's through my acting; it has made life better for us.
I can afford caregivers because of acting; I can afford better medical equipment. And it actually saddens me because I've seen both sides. I've seen the side where mama eats today, but I don't because I ain't got it. When we got P-Valley, I had no food in the refrigerator. I had just called a friend who was cooking, and I was going to go over to her house and get food and bring it back for mama. So that side is wonderful, but I'm such an advocate, and that's why it's so important to bring awareness to MS and different things that I can do now to use this platform to say, Hey sis, you know, there's this government program here in California that can help you get money. I know because I ain't have it. So I really want to be that advocate because many times when "celebrities" are speaking on these topics, people think, oh, they're a celebrity baby. No. I still drive the same Ford Fiesta because I have a $60,000 medical bed I need to get for my mom right now that can help turn her and do this and that. But I just want people to know that there are resources out there. That's why I'm here to talk.
Q: So, going into my question about advocacy in the Black community being huge. How have you advocated? Trying to get simple OTC medications and prescribed meds is so hard at times; I can only imagine for more severe illnesses. Is there a difference now when you have to advocate for your mom with, I guess, having more resources and the ability to afford those resources versus when you didn't? Is there a different tone that these doctors are giving?
A: At times, which is so unfair. You know, on Mother's Day 2022, mama went into the hospital. She had to get a suprapubic catheter, and she had complications. We had to call 911. So once the surgery was done, we thought it went well, we got home, and she's bleeding. After calling 911 again, they take her to the county hospital. And that's when I learned my privilege, you know what I mean? I was like, what's the county hospital? We always go to Sinai; like, what are y'all talking about? I am so glad that actually happened because it helped me learn things that I've been sharing with people to help their loved ones. But what I do think was wonderful for my mother but unfair to the world was that my celebrity got my mother out of that hospital because they couldn't do what they needed to do.
I was calling people, able to use the status of where I am now to get my mom transferred to Cedar Sinai, which saved her life, and found out that something could have gone wrong. I remember crying so hard and going back to the doctor's office at the county hospital and thanking the nurses and doctors there. It's not that these county hospitals are bad; they just don't have the resources that a Cedar Sinai or, you know, a bigger hospital has. And there are some people in the world who can't just go to the best hospital. So what can I do? I'm just like, I wish I had the money and resources to help them have more. They didn't have the CT scan there, so they can run it over here. I'm like, what happens to somebody else's grandma or mama that didn't have that privilege to make a call and get them moved? What about them? So that's something on my mind and how I can be an advocate, to help in all these different ways. Because I just felt terrible looking at people sitting in hallways while my mom got to roll out and go get saved. Wondering, who didn't get saved that day? It is just heartbreaking.
Q: How do you advocate for yourself when you're feeling overwhelmed? I know it's just like being a parent; if you're not ok, you can't take care of your kids right. Are there ways to give yourself self-care so you can continue to function properly?
A: I learned that during the pandemic, when I decided to punch a hole in the wall stressed out. I was like, ok, I can't keep tearing up the house, baby, because you may not even get the money to fix it. I had to figure this out. So I took my first vacation in November. I'm taking another soon. Someone told me you couldn't expect abundance when living in a state of fear. And I believe that. Before any of the jobs, we ain't have the money; I would be scared. So I'm like, ok, maybe the caregivers, y'all can take some time off. I got mama; we need to save this money; y'all can go home. But I'm also like, but now you're tired.
I had to tell myself to let them stay and do their job, girl. Go to Walmart and walk around. If you got to go, take yourself to dinner, work out, or do something. So that's where I'm at now is just like, even if I have a day off, usually I'm like, I should spend this day sitting at home with my mom. Right? Yeah. But also, mama's looking into my eyes and can see I'm stressed out. She's looking at me like, girl, get out the house and go do something for yourself and come back and then you can have a movie day with your mom. So I'm learning to be gentle and not so hard on myself.
One time I just caught my mom staring at me, and I had come from a back room because I didn't let her see me cry. So I come from the back room trying to pull it together, and I'm just like, mom, you hungry? And she's just looking at me, and I was like, ma, why are you looking at me? I said, what's going on? What are you thinking about? She was able, because she doesn't speak much more, to say to me, you. And I said, what about me? I was trying to hold back tears; she said, how are you? And I was just like, oh my God. She can still feel it. They know their babies. And I was like, I got to take a beat because I don't want her to feel ever like she's a burden. And if we don't take these moments as caregiving, that has to be a terrible feeling. My mom was so independent, and to already know, now my baby's in here doing all this for me, and she looks exhausted. No parent wants that.
Q: I know you've been talking a lot about how you do your part in trying to help other people and creating a community. So are there specific communities that you feel are most beneficial for people with MS? Who are just diagnosed or caregivers like yourself?
A: Yeah. And you know what? Honestly, I'm not just saying it because I'm a part of it, but I literally cannot wait to share these three short videos that we've done on gene.com/ms because it's just short. We're talking about the different things I wish I had known when I became a caregiver. So honestly, Azure's a friend now, and I'm calling her when we get off Zoom too. You know, it's just so funny that I'm making these different connections, but I'm still on all the message groups. I still look at it and, like, if I see something someone's going through, I'll chime in. And I love that. Now when I chime in, it might really help, or it'll push it up to the front because I got the little blue check.
I'm sitting there typing on my phone like, girl, let me tell you, my mom has MS too. I feel just like them, like bump a celebrity. I'm like, we are the same, and you're struggling with your mama. Me too. So I've made a lot of friends online. I call them my friends now; we cry together in the DMS. We have each other's phone numbers. And it's not about anything other than just caring for our loved ones and talking about MS., Which is beautiful. So I feel like I have a new family in a sense because sometimes you don't want to bother your real family, you know? It's because they feel bad, too; what can they do? So those strangers become your chosen family.
Q: That's wonderful. I know you mentioned the contract that you just got with Genentech, and filming a movie; how is that going, and what are you looking forward to doing next? What are you working on now as an actress and caregiver?
A: I'm excited. I'm shooting a movie now. I can't say much about it, but I'm shooting a movie now. I just finished the movie named Thirsty. I don't know if they will change the name, but it was amazing. I get to play a Mayor. I'll be going back for season three of P Valley. We do not have a date yet, but it's coming. And right now just really excited; hopefully, I can roll my mom on the carpet with me when I go for the NAACP awards. So that's what I'm working on right now. And just being more visible with my voice with the #MSVisibility campaign and being a voice for people for sure.
Q: And this campaign launches on the 27th or 17th, right?
A: Yes. And then everything will be on gene.com/ms. What I love is that we're the #MSVisibility campaign celebrating the diversity in MS and providing culturally relevant resources to enable better MS care. Even what I'm saying is not enough, like that website that's going to launch, oh my gosh, it's going to have so much to help you with. And I'm going to be on it, already a part of it. I know that I'm going to be on there finding things that are going to help me. It helped me just doing that, just shooting that; it was so much that I learned. So really excited.
Q: Would you have any recommendations for people that might help avoid MS or maybe lower the risk?
A: You know what? I don't think I can say what would necessarily lower or prevent the risk, and everyone is different. I think the best advice would be to talk to your healthcare provider because everyone's so different, and I would hate to say do this, but then it does not work. Azure, for instance, does something different than my mom, and that's the same regarding medications and foods. It's very different. And I'm just going off of what the doctors have told me for my mom. So definitely talk to your healthcare providers.
Q: Awesome. And is there anything that I didn't ask you about that you want to ensure gets in the article?
A: Yeah, I want to clarify that the studies show that Black people may be older at the time of diagnosis and experience more severe symptoms. They may be faster to have disability progression. For example, Black people with MS may need to be on a cane sooner than white people. So it's different things that we really need to share in the Black community because I've seen people with MS walking and running daily. And my mom is 69, relatively young, and she has been unable to walk for the last ten years. And you know, usually, that's happening later on in other races. So definitely want to share that so we can be aware and if you're feeling something, go to the doctor, do not think that, oh, it's fine; Grandmama used to have that tingle in her hand too. Did grandmama know it was MS? So we got to really, really be out there and go to the doctor and be an advocate for ourselves. The power of self-advocacy. That's one of the videos that you'll be able to see.
Well, this was wonderful. You almost had me tearing up a little bit over here with your story *I laugh* You can tell you have so much passion for helping people.
Thank you so much. I'm just so grateful to be speaking about this and bringing awareness because I'm like, Lord, I wish I knew then what I know now. It changed me. I'm sure you saw me over here finishing my green juice; I'm like, let me change my diet. Let me do better. And, you know, with this, with us communicating, maybe we can all, you know, be better with our health, with going to the doctor and what we put in our bodies. It's so important.
