The T in TLC, a sickle cell disease advocate, talks about managing chronic illness and as well as her haters.
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Tionne "T-Boz" Watkins of TLC has always been a health advocate. Long before she started talking about her experience with sickle cell disease, I remember memorizing, word for word, the second verse of "Waterfalls" which told the story of an AIDs-related death when the disease was at its peak, ravaging communities. I was ten years old, and it was my first—and frankly most powerful—sex ed lesson.
At 47, after living through a brain tumor, and way beyond most doctors' projections for her life expectancy, Watkins admittedly has very few fucks left to give. It's evident not just from her unvarnished stories of fame, betrayal, love and illness, in her new book, A Sick Life (co-written with Emily Zemler, and out this week), but also from her interviews. This past spring, she inadvertently pissed off the Twittersphere with her "disinterest" regarding Trump during a UK interview. "They got really nasty with the comments. They came on my page like, 'I hope you die from sickle cell,'" she tells me. "I was like, 'Whoa, whoa, whoa now hold on.'"
So she took a minute to talk to Tonic and clear up a few misconceptions—about managing chronic illness, healthcare, and of course, Trump. Watkins brushes quickly past mentions of loss and grief in our conversation—"I like to think and move forward," she says—as music is the place she chooses to emote most (she delves into grief in her new song, "Dreams"). While she still tours, most of her energy is in advocacy, especially since sickle cell disease research constantly lacks funding despite the fact that it affects millions of people worldwide (and about 100,000—mostly of African descent—here in the US).
In your book, you discuss getting really sick in between shows sometimes, but it still seemed like you had a lot of fun.
That has a lot to do to with letting your disease define you and I refuse to do that. I just have a disease but that's who I am. It's not my whole makeup. If I'm going to be sick anyway—like if the weather changes and we get sick—I might as well have fun doing it. At this point, I know what I have. The doctor has the same regimen every time—IV pain meds or whatever's needed.
I don't want to make it seem like it's easy. I don't want to make it feel like it's a walk in the park, because I have to worry about my health on a daily basis. But I'm going to fight until the wheels fall off, I swear.
What's one of the most common things people say to you given that you're vocal about your chronic illness?
The one comment that pisses me off more than anything is: "Oh you've got money so you'll be alright." I don't care how much money you've got. You cannot buy common sense or knowledge. If the doctor doesn't know [how to cure] something, he just doesn't know. What am I buying here? I can't buy a cure. It doesn't exist.
You can't buy a cure but you can afford the medicine right—does it make a difference?
First of all, my insurance company dropped me. Years ago, when there was a new rule, the overwriter interviewed me and sickle cell was an automatic decline. And the fact that I had a brain tumor was too. I got Obamacare—whenever he put that plan into motion...Yea, you can go broke paying those out of pocket.
As for medicine, there is none. It's not like AIDs where I need a cocktail pill that's expensive. There's no medicine besides hydroxyurea and the only person over 40 who was cured happened to have had leukemia and they did a bone marrow transplant. But they don't have anything for anyone over 40. All the the testing and people they've cured are younger kids. They feel like we're already kind of messed up. But what about us? I want to see my kids grow up. I want to be a grandmother.
So in this instance, money doesn't make a difference.
There are theories out there about how race dictates the disparity in research funding and even quality of treatment for sickle cell disease.
You see all kinds of benefit (events) for cancer, AIDs...I started T-Boz Unplugged, a benefit concert to raise money for sickle cell, but it's so hard to get people to help out. Even members of my own community.
It's very frustrating because because people don't really understand it's a deadly disease and how ugly it can get. I saw my aunt and my grandma die from cancer, and that's an ugly disease. But I didn't know [how bad sickle cell was] until my cousin got sick [from sickle cell anemia] and all his organs failed—his was so bad his whole body had infection. All his organs failed, they couldn't even resuscitate him because his rib cage was caved in. At the end of the day, his insides were eaten up and had no oxygen. It was horrible. And then you see a beautiful two-year-old who just had a stroke and can't talk. And a five-year-old who had to have their leg amputated. At five.
It's hard to get people to help me get the word out.
You got criticized by a lot of the media recently for saying you "don't care about Trump." Set the record straight with me. As a black woman with chronic illness, does his decision-making affect you?
Of course it affects me. When I made that comment, I wasn't saying I didn't care about what he's doing. I don't care about him as a person. I didn't want to talk about that in that interview...I was there to sell my album, not to talk about some idiot who's playing with our country and our lives like it's a game....I just didn't care to talk about him and I was probably so frustrated I didn't say it right.
And some people got upset when I said, "god is my president." What I meant by that is I know that a lot of stuff is happening in the world and it affects me too, but I'm not going to to go around stressed out to the point where I'm going to let some man run my house, ruin my day, I can't function because of him. I can't let somebody do that.
I've seen people lose or ruin relationships over debates over politics. Some of my friends voted for him—I can't understand it—but I wonder if they're happy now. Like, are you happy that you did this to us?
It also didn't help because of what my group member [Chilli] said right before me [about "all lives matter"]. I got blamed for that too. Everybody who knows me knows I fight for Black Lives Matter. I always have. I'm black and I've been racially profiled. But just because you're in one group doesn't mean you have one mind. She feels the way she feels and I feel the way I feel.
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