MGU 123 | War With Your Body

 

In this episode, Keisha Greaves, joins Jason Wrobel and Whitney Lauritsen as they talk about being at war with your own body when battling a chronic illness as well as striving to raise awareness about the experiences of others also affected. Keisha dives into what she went through as her illness progressed and manifested and how she got through the emotional process of it all. Get to know how she surrendered to the reality of what was happening. Keisha talks briefly about the COVID situation in Boston and how it’s affected her and the disabled community. They also talk about having greater compassion and empathy by opening the hearts of others to the experience of having an illness through sharing and raising awareness.

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Raise Awareness About Illness And Stop Being At War With Your Body with Keisha Greaves

Keisha, you are from Massachusetts and that’s where you live. Is that correct?

I was born and raised in Cambridge, Massachusetts.

Are you in Cambridge right now?

I am still here.

I don’t know if you knew this about me, but I grew up in Massachusetts and I went to school in Boston. I live in Los Angeles now, but knowing that you’re in Massachusetts and from Massachusetts warms my heart. I was hearing before we started recording that you’re into coffee too. I’m curious. What is your favorite coffee in Massachusetts? Do you make it at home? Do you get it at Dunkin’ Donuts? What do you like?

I am a Starbucks girl as far as their frappes and ice lattes. I love their breakfast especially their egg white feta wrap. I love them but then I also have a machine at home. I will sometimes make a hot coffee. We’ll try to make some iced coffee, especially now that the weather is getting nice out. I like all flavored coffees like caramel and vanilla cream. When fall comes around, I love pumpkin.

You’re not a Dunkin’ Donuts fan.

I would have it but I noticed the Starbucks has won my heart.

If you’re from Massachusetts like we are, it’s hard to admit that because people in Massachusetts are into it. Jason is from Detroit. Was there a Dunkin’ Donuts in Detroit your whole life, Jason?

There was one I remember that it’s still there. That’s ten minutes from my mom’s house. In Detroit, there wasn’t one downtown near my grandparent’s house or the house I grew up in. We had to drive to the nearest suburb, which was on the border of West Detroit, which is called Dearborn Heights. That’s where my mom lives. The funny thing was growing up, I had no idea about the regional fanaticism. In Detroit, we had our things going on in terms of food and beverages and things that people were hardcore proud of. They identified that Detroit’s work ethic thing. We had Coney dogs and we had chili fries. We had specific things about Detroit but Dunkin Donuts was not like it was.

When I’ve gone to visit Boston with you, Whitney, I get a sense of the culture there. People are hardcore about their Dunkin’ Donuts. It wasn’t that way in Detroit. It was like we’re going to go and get some donut holes once in a while as a treat. It wasn’t part of the cultural makeup and a sense of pride. People treat Dunkin’ Donuts differently in Massachusetts than where I had grown up in Michigan.

I’ve read that they are closing a bunch of Dunkin’ Donuts, but it was simply because they weren’t performing as well. I read it at first and it seemed like it was hundreds of the stores, but it was only 8% or something of all the stores in the country. That gave me some perspectives of how many Dunkin’ Donuts there are and it’s not just a Massachusetts thing or an East Coast thing anymore. It’s expanded and even in Los Angeles, we have Dunkin’ Donuts now. It’s grown and there’s a nostalgia there for me. I would prefer Starbucks over Dunkin’ Donuts. I liked the actual donuts there and I also liked the Dunkin’ Donuts bagels.

When I was living in Massachusetts, I was not that into coffee and now I’m into coffee. I much prefer making it myself. Every once in a while, I will go to a cafe but it’s mainly a unique cafe. Something that’s a little bit more interesting. I know that I can get Starbucks at any time anywhere. It’s interesting and Jason is not that into the coffee. He’ll have it every once in a while. For me, it’s not about the caffeine. It’s about all the flavors. I love that you mentioned that you like all the different flavors too because that’s harder to experience. I find it’s fun to experiment with how I can make the best coffee at home possible. Especially the ice coffees, I like to get into.

I’m like, “Is it going to taste the same?”

It never does to me. It’s a fascinating process because there are many variables when it comes to making coffee drinks. Everything about the ratios and the flavors and how you brew the coffee. That’s part of what makes it fun. I am excited to talk with somebody in Massachusetts and I saw that you went to Framingham State. I grew up close to Framingham so I know that well. What’s life been like in Massachusetts for you? One thing I want to talk with you about is your experience during COVID. Jason and I were supposed to come out to Massachusetts for a convention that we go to every year in Philadelphia. We make this whole trip but it got canceled because of COVID. Aside from what I hear from my parents who are 30 miles outside of Boston, I don’t know much about what life is like in Massachusetts these days. I’m curious about what your experience has been in the city. I’m also curious about your overall experience during COVID.

There's nothing like talking to somebody who understands and gets what you're going through on a daily basis. Click To Tweet

I would say in Massachusetts, it is crazy. Starting at the beginning of March, that’s when everything started to shut down out here. Businesses are closed and only essential businesses are open. It was scary. When it first came out, this Coronavirus seems like it’s not going to be well. It’s not going to be right. I had one of those bad feelings within my body. Especially someone like myself living with Muscular Dystrophy. I have breathing and respiratory issues. I am a person that is at high risk. I live in Cambridge. I’m closest to the city. I honestly haven’t been out. I haven’t seen any family and friends because I’m paranoid. I feel when I’m going to go outside and the Coronavirus is going to be right there waiting for me or something.

I’ve been getting my groceries. My mom would drop them off and things like that. I must commend the building manager of the building where I live. She has been strict with not allowing visitors to come in or out. The only people that are allowed in here are the people that work. For instance, my personal care attendants can come in because I need assistance getting in and out of the bed. I haven’t been out because I’m scared to. Especially when I hear people like, “This Coronavirus is not real. It’s fake. I don’t want to wear a mask. That’s silly.” What are the people dying from then? If you’re saying this is fake, what are these people dying from? Wear the mask.

I understand that it can get hot, but until we collectively do all of this together, we can fight this. Until there’s some vaccine, everyone can try to stay safe. If we have people like that, not wanting to wear the mask and the people that don’t care, they are not also helping my confidence in wanting to go outside. Sometimes I am an introvert. I enjoy being at home. I love watching my TV. I’m a TV fanatic. I watch all the reality shows. I watch Netflix. I’m okay and focusing on my business, doing shows like this with people that I love. I’m content with being in my environment.

That’s how I feel too. I imagine it is on another level for you feeling that you are more at risk. I don’t personally have that experience but like you, I do feel this is a serious thing. I try to limit my interaction with other people and stay inside. Part of that is due to respect. I appreciate the mentality that wearing a mask is not for just your health. It’s for the health of anybody else that you’re interacting. It’s been interesting that you’re seeing the selfishness of other people. There’s a conspiracy theory side of it, which Jason and I have talked a lot about it. There’s also this element of even if you do believe that COVID is real, there are a lot of people that feel like if it doesn’t affect them, then they can do whatever they want. Somebody that might be more at-risk health-wise, that consideration for their health is not always there and not realizing how much our decisions impact other people. It’s bringing that to light, but also giving us an opportunity if you’re paying attention to realize how much of an impact we can have other people.

I’m curious, Keisha, about your viewpoint with people that are complaining about the state of things? People that are like, “My freedom is restricted. I can’t do the things that I want to do.” We see a lot of people talking about freedom. That word has been coming up in many instances of the concept of what freedom means to me. With someone who is bringing the reality of living with LGMD to light and it’s something that I had to educate myself on before this interview of what is all involved in that. Your perspective on what freedom means to you is going to be different from the average person who’s like, “I can’t go to karate practice. I can’t do basketball practice.” My question is, what is your emotional reaction or your perception when you see people complaining about those kinds of things? Your version of freedom and their version of freedom might be two different things. What I’m trying to ask is what’s been your emotional reality looking at what’s going on around people saying their freedom is being restricted and all that stuff.

My first response to those people is shut up. I’m sick of them. It’s like people look like you met them and I’m glad that you took it upon yourself to educate. This person was living with a disability and these people are complaining of not going to karate practice or, “I missed a girl’s night. We’re supposed to go to the bar.” People in the disability community have been asking for these special accommodations for the longest time. To backtrack, I was working for a company. I can’t even disclose that. I have a Massachusetts case going against them now because I felt like I was discriminated at my job.

I specifically asked due to my disability, things were starting to progress. I specifically asked, “Can I work from home?” It was becoming hard to be coming on my feet. I’m in the retail field doing merchandising. That was becoming a lot. When I felt like they discriminated, they did not want to do that and I was fired. Look at during this COVID-19. We are still in this pandemic starting in March 2020 and look how quickly this world has changed within minutes, less than 24 hours, classes online. I can go to doctor’s appointments by tele-visits. All of these video calls and non-video calls, you have choices. That’s less than a day for the world to change. People can work from home.

This is something that people in the disability community have been asking for forever. When all of this goes back to normal, when this pandemic is over, please don’t forget about people like myself and the disability community. For some of us, this is our normal life. Some of us have to wear a mask to go to the doctors because we have low immune systems and respiratory. Some people have kidney disease, Lyme, all of these different chronic illnesses that I’m still learning myself. For some of us, this is normal. When I hear them complaining like, “I miss seeing people.” It’s like, “Shut up.” I understand some people live their life all based on interacting with people going out but that’s not me.

I’m an introvert. I like being alone. I live alone. Even when I went to college I asked for no roommate. I’m here trying to make it out of base safely. You’re complaining of not wearing a mask and I’m trying to make it from point A to point B, make it from the bedroom to the bathroom without having to fall. I do look at someone and my disability community where this is our norm and then with this whole pandemic, we are someone that is at higher risk. You’re being selfish when people don’t care and they’re like, “I don’t have to wear this mask. I’m getting on the plane. I’m going to travel.” If it’s not an emergency, why are you getting on the plane?

Why would you do that? Even this instance when everything started with the whole Black Lives Matter and I’m happy that people out there are protesting safely. I don’t like the whole vandalism and things like that. As I watched them online, I thought to myself like, “I don’t see a lot of people wearing masks.” That shows you how my mind is. When my care attendants come in, they know they’d have to put on hand sanitizer downstairs when they come upstairs before they even touch me. Wash their hands, put on hand sanitizer, gloves and mask. I have them take their temperature. I’m a person of high risk and we all have to be safe.

It is fascinating because this has opened my eyes to a lot. With Black Lives Matter happening, I’m seeing a lot of shifts within myself. I’m also noticing a lot of resistance that other people have and that’s fascinating too how people respond to these things differently. It reveals the truth within people and a lot of that ego. Many people are afraid to change or it’s hard for them to look outside of themselves to understand and accept people who are in different situations or who simply live a different life and come from different backgrounds. To me, there’s this pro and con. The con is that it’s bringing up a lot of sadness and the sides of humanity and how there is a lack of compassion from a lot of people.

The way that I’ve best dealt with it is to learn to be more compassionate. If I don’t see one person being compassionate, then maybe I can make up for it a little and be extra compassionate myself and that’s tough though. You can almost feel resentful though. Similar to how you’re expressing when you notice this human behavior. I’m curious if that affects you from a mental health standpoint. Does that create anger or hopelessness or depression at the state of things in the world seeing people treat one another that way?

It does affect me. It makes me sad. It’s uninspiring. I’m thankful for people that give me the platform to express myself on a show. I like to express that through blogging and then most importantly, I express that through my clothing line. I express my different sayings and my different logos. I express how I’m feeling at the moment. It’s not exciting to see that. It makes me feel sad, especially everything that’s going on between the COVID-19, the Black Lives Matter Movement. It’s a lot. I’m an African-American plus disabled. That’s why I specifically created a t-shirt that said Black Disabled Lives Matter as well. I feel like I’ve got two targets on my back. If I go outside, am I going to get accepted because I have a disability? Am I going to be accepted because I’m a black woman?

Doing that t-shirt line, has that introduced you to more people that are like you? A benefit of this is sometimes we can feel alone, but when you do work like you’re doing and talk about who you are and what makes you different. Have you met a lot of like-minded or people that are having those same experiences or in that same place in their life?  

MGU 123 | War With Your Body

War With Your Body: When all of this goes back to normal when this pandemic is over please don’t forget about the disability community because for some, this is their normal life.

 

Yes. When I first started my business overall, Girls Chronically Rock, has made me meet a whole range of people in the disability community. It made me feel good because I didn’t feel alone. I was diagnosed with muscular dystrophy in 2010 when I was in graduate school. I had a whole life before. Here I was walking up and down the stairs, living my best life as a normal twenty-year-old person would. Here comes this muscular dystrophy. I was in denial. I wasn’t telling any family and friends. I wasn’t accepting the fact that I had it. Even going on driving going to work. When I started walking with a cane, I would tell them I sprained my ankle or I was in a car accident.

For me to say I was in a car accident or sprained my ankle. It sounded better than for me to say muscular dystrophy because saying muscular dystrophy at the time made it seem real. That’s what inspired me to start Girls Chronically Rock and how I came up with the name is that I knew I wanted something with the word chronic in it, as chronic illnesses. I didn’t know exactly how I wanted to incorporate that. Honestly, I was lying in bed one night. That’s when I feel like my most creative juices start flowing when I’m lying down watching TV. I thought Girls Chronically Rock. I loved the way it sounded. I loved the way it flowed and I loved it.

It sounds empowering, motivational and inspiring. I want to help and create others. I know people like myself who were diagnosed with a chronic illness/disability and they later go on with life. It’s been awesome to connect with other people in the disability community, especially others that I have met that have muscular dystrophy. There’s nothing like talking to somebody who understands and gets what you’re going through daily, what the body’s feeling fatigued if you have a fall now knowing what the body’s going to feel like each day. There’s nothing like it. I always tell people, “It’s awesome, the support of family and friends, but there’s nothing like talking to somebody who understands and gets what you’re going through daily.”

I’m curious, Keisha, about the jump from you experiencing the denial of the reality of what was happening to your body. I’m curious not only about the emotions of that experience but then when you finally settled into a state of, “This is real, I’m going to be real about it. I’m not going to hide from it. I’m not going to sugarcoat it. I’m not going to use euphemisms or act like it’s something not.” What was that emotional process and that leap like of acceptance and then surrender to the reality of what was happening?

As I mentioned here, I was in graduate school doing my thing, enjoying life and then this comes out of nowhere. I’m like, “What is muscular dystrophy? I never heard of it.” The day the doctor called me, I’m thinking, “She must have called the wrong person. I don’t have muscular dystrophy. What is she talking about? Maybe she got the wrong test results. She got something mixed up.” I felt like I don’t have it and then especially the first thing we do is go online and start googling symptoms. I’m reading that there’s no cure, no treatment. Some people may not live a long lifespan and it’s like all these things. I’m like, “I don’t have that.” I wasn’t telling any family and friends.

One day, one of my friends suggested, “Why don’t you try to blog? Why don’t you raise and start venting about your symptoms and what it’s like living with limb-girdle muscular dystrophy?” I thought to myself and I told him at the time, “Why would I do that? I don’t have muscular dystrophy.” It took some time when he had said that. One day I opened my laptop and I started typing. I opened up Microsoft Word and started typing my symptoms and everything leading up to the doctors, what symptoms I was facing, and all the testing and everything. It took that moment as I was typing and saying it out loud. I said to myself, “I have muscular dystrophy. It’s crazy.”

Never mind what the doctors were saying, never mind the test results. It took for me as I was typing it and saying out loud, “I have muscular dystrophy.” I ran with that. I posted it on Tumblr at the time and then I posted it on social media, Facebook. I had great positive feedback that I got. I was like, “People enjoyed it and they like listening to my story.” These are people that I chatted with and seen regularly that didn’t even know what was going on with me. At that time, looking at me, you wouldn’t know I had muscular dystrophy. I was working normally, no mobility aids then, still driving and doing my thing. When I posted that and got some great feedback, it made me feel good. It made me come out of denial a little bit, not 100% at that time, but it definitely opened the door a little bit and then made me feel easier to chat about it.

That’s such a beautiful thing. There are a couple of elements to this. First of all is the denial. Human beings tend to be in denial because it feels safer to deny the realities of life, whether it’s something that happens to you or it’s something that’s happening in the world. That might be part of the reaction that’s happening during COVID and Black Lives Matter. “It’s too hard to look at this so let’s pretend it’s not happening. Let’s go about our lives as if it’s not happening.” It takes much bravery to do what you’re doing, what you did then and what you’re doing now. That moment where you said the truth and you spoke it out loud and you embraced it. You’re also sharing your experience with other people.

I imagine a lot of people are finding you through your blog posts, shows and social media. Maybe that first feeling they have is, “I’m not alone.” I feel like that’s one of the hardest parts when you’re going through a time of uncertainty change transformation for better or for worse, whatever stage we’re in. That feeling of nobody else will understand me or I’m not going to be accepted anymore through this. Is that part of the reason that you think you wanted to not only deny it for yourself, but you didn’t want to acknowledge it to other people? What was going through your mind when you were telling people that you’re using a cane for a different reason? Do you remember what that experience was like and what your motivation was to hide it?

It was random. It wasn’t even something I thought. Here I’m thinking like I’m going into this interview. I thought, “They’re going to ask me why I have this cane. I’m not wearing it as a fashion statement.” Although some people did think that when I would go up and I’m like, “What should I say?” Those were the first two things that would come to my mind. It wasn’t even something that was prior thought of when I left home. Once I pulled up in the car, knowing that I was about to go in the building for this interview, I’m like, “What sounds better?” I’m thinking muscular dystrophy sounded the worst. At that time, it’s like, if I had a different mindset, then I would have come out and said muscular dystrophy, like how I do now. It is what it is. I can’t say, “What would I have done better?”

The mindset I was in then was how I felt. That’s what I was dealing with. I’m in my early twenties and the doctor is telling me I have muscular dystrophy. What is that? Nobody in my family seems to have it. I go with the flow. It was like whatever came to mind and then as soon as they saw me and I was ready to answer, I’m like, “I sprained my ankle.” It was whatever came to my mind at that moment. It was between the two, sprained ankle and car accident. They sounded better at the time instead of me saying muscular dystrophy because it didn’t even sound right to me at the time.

It goes back to maybe even what you were describing with your experience with job discrimination. Sadly, employers might hire somebody based on what they look like or whether or not they have a disability or what their gender is and all these other factors. It feels like sometimes we have to pretend to be different than who we are to get by in life. I find that heartbreaking or sometimes we feel like somebody is not going to understand us. It’s hard to share the truth of what we’re going through because it’s too much of a risk of being misunderstood. It sounds like you were probably coming up against a lot of those things. What has shifted for you since you started embracing this? How long has it been again? What year was it that you were diagnosed?

It was around 2010, 2011. I was still able to finish graduate school and everything.

Keisha, I was diving into an amazing blog post that came out that you did with MIGA Swimwear about stories of resilience. There’s so much that I feel as I was reading through this and reading more about your story. I was feeling frustrated with this ongoing foot injury that I’ve been dealing with for months now. I’m not sure of exactly what’s going on. I’m going to the hospital to get an X-ray and MRI, get some things done and try to figure out what’s going on. I wasn’t able to sleep. I’ve had a little bit of insomnia because the pain in my foot has not been allowing me to sleep. I’m down on myself and I’m getting into that whole like, “What’s happening? No one can tell me exactly what’s going on with this foot.” I’m getting down on myself. Reading your story, getting to know you in real-time here, it’s almost like I’m not being mean to myself when I say this but I’m like, “Stop being a little bitch.”

Take things day by day and go with the flow. Click To Tweet

I say that jokingly but also have seriousness in the sense that my girlfriend was on the phone with me and I’m like, “This hurts bad. I don’t know what’s going on. I’m scared because I haven’t been able to figure this out.” As I was reading this specific blog post, when your body betrays you and that’s the exact phrase I have been using when I’ve been talking to friends and my girlfriend about it. I feel like my body is sabotaging my life. This is probably something that I will have a name too and will be able to figure out.

This post hit me in the heart because here I am dealing with this relatively minor thing and I’m fascinated with the psychological process of you feeling frustration or anger or wanting your old life back or being like, “Why is my body betraying me?” That phrase hit me in the heart, Keisha. It’s still with me. I feel chills reading this because even in my mind or situation that frustration, I’m curious how you’ve been able to psych and what is that psychologically for you of being like, “Damn you, body.” Not falling into hating your body. Not falling into maybe a victim mentality or being angry about it. How do you navigate all of that?

I tell people, I take things day by day. I honestly feel like as I wake up, I go with the flow. I realized that I do not have control over this muscular dystrophy. This has control over me. People on the outside think they are doctors and they thought to cure this disease. They’re like, “Everything’s going to be fine. Pray and eat healthily.” Again, “Shut up.” People sometimes think in their heads we wake up and like, “Let me get that muscular dystrophy. Let me get that with no treatment or cure.” No, that’s not the case.

I learned to realize that I have to take it day by day. If I have a fall or anything like that. I don’t know if I’ve gotten used to it. I don’t know if that sounds bad to even say that but luckily I do wear my lifeline button because I live alone. Whenever I do have a fall, thank goodness I hit that button, and the firefighters and EMT come to help me out. I realized I don’t have control over this. This reminds me of how we don’t have control over this pandemic. We don’t know what’s going to happen. What it’s going to be like in the next few months, but we do have control over to wear a mask.

For me, I’ve been taking it day by day and looking at things that keep me motivated and insane. I will say that is me focusing on my business, Girls Chronically Rock. Thinking of new creative ideas on things to expand my business. Also, I love watching TV. That keeps me happy and knowing like if I had a bad fall one day or I’m down about something. Knowing I have some entertainment, reality, interesting to watch later, I look forward to that. That’s honestly the truth. My reality TV keeps me sane and that keeps me going. It keeps me in a different mindset.

I’m curious about what you love to watch. What are some of your favorite shows to watch?

I would watch Jersey Shore, Siesta Key, and the Marriage Boot Camp. I love the daytime talk shows. A lot of them have been put on hold due to the pandemic. I love watching Ellen. I love Wendy Williams. Although some people do not like her, I’m obsessed with her. I watch everything and then I would love to binge-watch shows and movies on Netflix.

What are your favorite Netflix shows?

I watched On My Block. My niece got me into that. I used to love Orange Is the New Black. I’m sad that’s over and then I got finished watching the show called Doctor Foster. I love anything suspenseful too. I love drama, not always comedy but something that’s going to be extra dramatic.

It’s interesting too because a lot of people feel guilty about watching TV. How you’re positioning it is like that’s part of how you feel good. It’s an element of your mental health in a way. Not feeling guilty for taking a break and wanting to watch something fun. A lot of people would want to get on this almost like a high horse for the quality TV shows they watch. It’s important to remember that there’s all this different programming for different things that you want to experience in your life. Sometimes, it’s fun to watch a random reality show or get into the characters. I love that you’re owning it and proud of everything you watch. I feel the same way. I enjoy watching TV too and I’m grateful that we have access to many different things during times where it can feel stressful.

Imagine if we didn’t have cable and the TV and Netflix during this time back then like with the Spanish Flu.

Read by candlelight. That was the jam back then. They’re like, “Did you read the new Charles Dickens novel? It’s the jam. That new Dostoevsky novel is the shit.”

It makes us wonder something else for you. You do run your own business. You don’t have a job because you’re in that process with your previous job where you’re hired. I’m curious about you running your own business. Do you feel the desire to hustle and work yourself all the time and that whole grind mentality? Some people feel like they don’t want to watch TV because it takes away time from their business. You can easily strike a balance and it can be beneficial to take time away from your business. There’s this ongoing message during COVID of if you’re not working every day and taking advantage over all this time that you have, then you’re wasting this time at home or something. I’m curious about what your perspective is on that and your experience with your business?

I would say yes. My business is my full-time. I feel like even when I was working, this was more a priority than my other job because I knew I wanted Girls Chronically Rock to take off. I’m looking to build this empire. I’ve always been into watching TV even from when I was in college, living with my mom. I feel like I can balance it. I could be here checking emails and then I have it on Netflix and I still like to watch The Tomb because I can put my head up and bring it down. Once I’m done with the emails, that gives me more focus to watch the show or vice versa. You can balance and it’s okay. I’m realizing honestly that’s it’s okay to take a break from your business and responding to emails and taking a break from overall everything. That can be exhausting too on the body and that’s something I’m learning for myself.

Until you say something, then nothing's going to get done. Click To Tweet

That reminds me of another thing that I wanted to ask you. Since Jason brought up an article he found on you, one of the articles I enjoyed reading was 6 Beyoncé Songs That Have Helped Me Have Fun. It was great and one of the things that you’ve said in that article was about how music helps you through a challenging time. I’m curious about what have you been listening to. Are you super excited? When does her Disney Special come out?

My friend already started watching it. She’s more obsessed like she would take a bullet for Beyoncé. I’m more like Rihanna for me.

What’s your favorite Rihanna song?

I love her latest album. I like Work, Work, Work. It’s another slow jam she has on there, although she hasn’t had any recent music. I love what she’s doing with the whole lingerie line. She’s amazing. I call her perfect and I can relate to her because she comes from Barbados and that’s where my family is from. I tell people, “Me and her are cousins.” It’s weird when I tell some people about that. Some people would believe it. I’m like, “Me and her are first cousins.”

I love that you brought up Rihanna because my perception of Rihanna goes beyond being a performer, a musician and a singer in the sense that she occupies many people in my mind. A unique echelon of artists that she takes risks. She isn’t afraid to be who she is. I get the sense in the energy of her that she’s like, “This is who I am. I’m going to be exactly as I am. I’m going to show up and be who I am, and you all are going to deal with it.” In the context of you being inspired by her and having her be an archetype for you, what do you see, Keisha, as far as your creativity, your self-expression with Girls Chronically Rock, with being a writer, with all the things you do in your healing process? You being able to live with and educate other people about LGMD, what role does creativity play for you may be in an emotional sense or spiritual sense? What’s your perspective on your creativity?  

I don’t know if I ever thought about that. I would say more emotional because like how I’m feeling at the moment. Sometimes, I like to express that through my line. As I mentioned with everything going on with the Black Lives Matter Movement. I’m angry, I’m sad, all that at the same time. I wanted to express that through my T-shirt line, to express how I’m feeling or how I want to be heard, what I want people to see and to view me. I would say emotional, depending on how I’m feeling. If something’s either funny, sometimes I say random things too. I’ll be talking to family and friends and I’ll be laughing. I would say something random. I’m like, “That was sounding cute on a t-shirt.” I try to create the logo and the colors of what I want for it. It can be random at any time, especially maybe sometimes even watching a movie, whether I’m crying or happy about it.

One of the things that you said in that Beyoncé article was that for a while your diagnosis felt like it was not only an identifier but your whole identity because your life had to change drastically around it. When you were saying for a while, that’s no longer the case for you. How did you shift your mentality so it wasn’t your entire identity anymore?

I realized that it’s a part of me but it’s not who I am. I realized this muscular dystrophy, I don’t have any control over it, this has control over me. I wake up every day and take it day by day, make it from point A to point B and try to make it throughout the day. I realized that I’m a true believer in things do happen for a reason. Maybe I was diagnosed with muscular dystrophy for reason. Maybe it was a reason, God probably thought I can handle it and this is a way for me to express with my line. I always wanted to be a fashion designer. I always wanted to be a business owner. I knew I wanted to own a business.

I feel like everything is aligned and everything came together what I realized as it should. It took a lot to accept that. I’m still learning every day of being new to the disability community, what to say, what not to say. It took some time but me sharing my story and inspiring others and when I get those wonderful messages on my direct messages on Instagram, Facebook, email, whatever. They’re like, “Keisha, I love what you do and I admire you. I know someone that has muscular dystrophy. I have in my family who has it. I know someone that has lupus and they would love your line.” When I get messages and things like that, that warms my heart because it continues to make me feel motivated and inspired. People are paying attention to my story and what I’m doing. Overall, Girls Chronically Rock motivates me to continue to grow because I look at it as Girls Chronically Rock Movement.

What role, Keisha, does fear play in your life in terms of you starting your own business and being an entrepreneur and having the background that you do in fashion and business management? My perception of you is entrepreneurs, artists, activists. When fear comes up for you, what thoughts come through your head? What are the main fears that you face and what relationship does fear play in your life? How do you dance with it? How do you use it in your life to keep yourself moving forward?

I would say fair for me, I think about, is my business going to build into the empire that I want it to? Most importantly, I think, is this muscular dystrophy going to take my life? What is going to happen? Some types of muscular dystrophy do affect our hearts. I have to make sure to get an echocardiogram once a year to make sure that the heart is functioning properly and everything is well. I have those fears of, “Is my muscular dystrophy going to progress even more? Am I even going to be able to stand up and at least do some things independently?” I think about all of that and that factors into because if my body doesn’t function, I feel like, “How can I function Girls Chronically Rock? I need this to succeed. I need this to grow. I have many ideas and many things I want to do with the Girls Chronically Rock Umbrella.” I’m thinking I need to get back on track. I need to eat healthily so I can live a long life span, strengthen my muscles, and to keep living as long as I possibly can. I think about all of those things regularly.

I was going down the internet research rabbit hole for you. When people say you’re an inspiration, does it irk you? Does it piss you off? Does it depend on who’s saying it in the context? Is it something that you accept as like, “I do inspire people?” When people say that to you, how do you take that in? How does that make you feel?

I feel like being in this disability community, I’m learning what I find like, “I’m fine with that.” I would hear a disabled person say, “I don’t like to be called an inspiration. I am not your inspiration.” Another time I heard them say, “I don’t like when people say I have a chronic illness, I have a disability.” I use both terms. I use chronic illness/disability. I feel like that’s all something I’m still learning and the same thing with inspiration. When I saw someone post that the other day, I’m like, “Am I doing something wrong?” That inspired me then to post because especially my disability community, that’s my following. I’m like, “What do others think about this?”

To me, there are no right or wrong answers. This is something from my expression. I honestly don’t have a problem with it. Even sometimes with my talks that I do for speaking engagements, my title would be from chronic illness to inspiration. People say like, “You’re inspired.” I can get when people are saying like this. Someone said that she was inspired because she opened the door by herself. The girl in the wheelchair is like, “That’s stupid. Why am I inspired? You know that I opened the door like everyone else.” I can understand. It’s how they say it.

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War With Your Body: Be part of a community that can understand what you’re going through and vice versa.

 

I don’t see a problem with it. I don’t mind when people say that because that honestly inspires me and motivates me even more. Even young kids and older people, they’re like, “Keisha, you are such an inspiration.” They’re not looking at me like, “You’re in a wheelchair. You’re inspiring.” They’re looking at the overall picture. “You’re an inspiring teacher. You’re living with muscular dystrophy. You’re in a wheelchair. I read your blogs. You’re not knowing what the body’s going to feel like, what it’s going to do. You had a whole life before this. You are now running a business on your own. You don’t have a team of people, but you’re running Girls Chronically Rock business and balancing a chronic illness, disability.” However, you want to say it. I use both terms. That’s how they mean it. I don’t think they look at me like strolling the street and, “You’re such an inspiration.” I don’t have a problem with it but I noticed some other people do. That’s interesting you brought it up. I posted about that. I’m like, “Is it just me?” It was 50/50. Some people said they don’t like it and then some people said, “I don’t mind. I like it when they say I’m an inspiration. I’m fine with it.”

I’m glad you lined your perspective. One thing that I’m trying to be mindful of is realizing that with the language that I use or the terminology that I use, depending on who’s receiving it in their life experience and how it lands for them emotionally that sometimes I might say something that lands in a way that it doesn’t feel good for someone. Going back to the guilt and the shaming that’s going on social media. In people’s attempts to be more woke, a lot of people are trying to correct each other, educate each other. Sometimes it gets mean or punitive like cancel culture and everything that’s going on.

I realized that sometimes, even in trying to educate myself and create more empathy and understanding, I may at times use terminology or phrase that someone’s like, “That doesn’t feel good to me.” It’s an opportunity for me to choose to either get defensive and be, “That’s not where I was coming from,” or step back, keep my heart open, keep my mind open and listen to another person’s perspective. I appreciate your perspective on it. It’s not in the sense of wanting to be woke or PC or trying to be performative. I feel like those things are real. I want to be able to understand someone’s experience as best I can, even though I’m not living in their shoes. Even speaking to you, I will not know in this lifetime what it’s like to be a black woman. I will not know the experience of having LGMD. Getting to dive in and open my heart to your experience is like, “I can have more empathy and compassion and allyship for what you’re going through,” even though I don’t have a direct experience of it.

This was something I saw you had retweeted on Twitter, Keisha, about how black people continue to experience higher rates or worse consequences of disabilities. That is an important thing to talk about especially for me and Jason being white, there’s a lot that we need to continue to educate ourselves on and be more aware. It’s coming back to that conversation about denial. It’s like not pretending that our personal experiences or the experiences that people around us speak for the entire country or the world. We need more people like you speaking out about these things and bringing up these facts. It’s sad for me that this type of information has not been brought up in the media as much as it needs to. I’m grateful that it’s starting to happen more, but we have a long way to go. I’d love for you to share what you’ve learned about the higher rates and the worst consequences. Correct me if I’m wrong, but it sounds like in general black women don’t always get great treatment by doctors. I was hearing some horrifying statistics about how there’s still a mentality in the medical industry that black people don’t feel pain the same way. I’m like, “Is this possibly true in 2020 that the medical industry still believes that?” Is that true?

I have not experienced anything regarding that. I was honestly as shocked as you were. A part of me also was like, “I can’t honestly believe this though.” We’re now hearing it probably, but it’s sad. I’ve been reading stories of other people having situations like that in the doctor or medical field, how they want to get the right prescriptions. They’re not considered a high priority and how this girl felt like her doctor wanted her to die although she had diabetes. She’s a black woman and diabetes ran in her family. That broke my heart. You’re right, this is 2020. We are living in America and it’s crazy how this still exists.

When I read that, I’m not surprised. This is America. This is how black women and black men are treated. It’s unfair. Look at how long we’ve been having to deal with this. Forever and ever and as far as our ancestors. I am grateful that I have not experienced anything like that in the medical field. I have some great doctors. I love them. I always write to them on email. I always ask them questions if I need a prescription and this is my primary care. I have a therapist, a nutritionist and a neurologist. I have not personally experienced that and I hope that I do not. I do feel bad for the black women out there that have. I hope that this gets better and more voices because until we say something, then nothing’s going to get done. They stay in silence getting that bad treatment, then nothing will get heard. It also sucks because I know some black women that have tried to speak up, but then see they’re not heard and things try to get shut down. It was like, “What do we do? We can’t win sometimes.”

It’s interesting to me to reflect on this especially when it comes to disability. It almost seems like the media or television shows like entertainment think like, “If we show somebody with disabilities, then that counts as us being diverse.” When I think about it, a lot of the people that I’ve seen on TV or movies with disabilities tend to be white. It starts to paint this picture where you’re not being exposed to it as frequently. For example, I’m watching this show called Love on the Spectrum. Have you watched that yet?

No, but that’s people with Down syndrome.

Mostly I think if not entirely, autistic people or they might have Asperger’s. I’ve only watched one episode but so far, it’s all white people. I still think if we don’t show diversity with people that are experiencing different types of living, then we get used to not seeing it. We have to look for these things harder when they’re not in our faces. If black people are experiencing higher rates or worse consequences of disabilities, is part of that because they’re not being seen or recognized in some of these ways? They keep getting pushed aside as if they’re not important or we can pretend that they’re not there. What do you think of what we can do to raise our awareness about this and make sure that everybody is being represented?

I would say use your voices as being white. When you guys use your voice, I noticed it has made a difference. For example, if I would post online in a group and I was a black woman, that may get a few likes, a few comments. The white person in that same group is going to post the same thing I posted. Because she posted it, now it has gotten all this attraction. I’ve seen this consistently. I’m like, “Why is that?” A lot of my friends who do that are white that have disabilities. They are like, “What can I do?” I tell them, “I think you advocating and sharing your voice. They listen to you as opposed to us. You are going to get more of a platform than I am.” I love getting much support, but I also want the support to continue when all of this starts to die down.

Let’s not forget this has been going on for centuries. This is not something that started a few months ago. This has been going on and it will continue to go on. I want everybody to keep up the same energy, keep this same stuff that you’re doing supporting. Keep all of this up and continue to do that even when things start to die down. I want this to continue to go and use your voice. Let us be heard because you have this platform. Speak up. I think that’s the best advice I can give. Speaking up and sharing your voice and using your platform to represent people like myself.

Thank you for sharing that. It’s certainly something that Jason and I are working hard to do and also to encourage the audience to take that same advice. We need to continue with all of this. One thing I saw that I thought was wonderful is this challenge online with women and it was like a challenge accepted. Do you know about that?

The black and white.

Yes. The black and white photos.

I know that because someone asked me to do it. I was like, “Challenge accepted.”

Use your voice because you have this platform. Speak up. Click To Tweet

Part of the reason I didn’t do it is I didn’t fully understand the purpose. I don’t want to do something because other people are doing. I need to deeply understand my motivations before engaging in something like that. One thing that I considered doing and I’m curious about your perspective on this. I saw some women instead of posting selfies of themselves, they were sharing photos of black women such as Breonna Taylor instead. I don’t need to show a photo of myself. We need to continue the conversation. It was like using that challenge to bring more awareness. We can’t hop on another trend. There was that big trend of sharing the black square during the beginning of the Black Lives Matter Movement.

The intention might have been good. Going back to what Jason brought up about saying somebody as an inspiration. Maybe you do have good intentions, but if you say something or do something without deeply thinking about the reason behind it, it might come across as superficial and not having as much of the meaning. There’s a combination for me of wanting to make a difference when I’m posting something and not hop on the bandwagon. I appreciated the people that were posting Breonna’s photo for that. I don’t know if you saw that she’s now on the cover of Oprah’s magazine.

It was such a beautiful cover. I think that Oprah has her on every cover of her magazine. I was looking at this cover feeling bittersweet emotions. It was like, this is amazing that they put her on the cover, but also, she’s not around to see that. My heart broke thinking as you get on the cover of Oprah’s magazine, which is incredible but at what expense, at what cost. It brings up a lot to think about. I think that we have to continuously reflect on that. One of the biggest messages from this conversation with you is bringing awareness, stepping outside of yourself and not acting based on your ego or your limited experiences and taking into consideration how your actions affect other people for better or for worse.

One of the things that are ever-present for me is this idea of keeping our foot on the gas. It’s the analogy that I keep getting. As an example, I’m a huge basketball fan. I always have been. It’s always been my sport. One of the coolest things that I’ve seen them do, now that the NBA season has restarted is having the players be able to put phrases instead of their last names on the back of their jerseys. Many players, speaking of Breonna had said her name on the back of their jerseys. Every time you see the players down the court and they like to zoom in on the action on the basketball court, you’re seeing these messages reinforced over and over again.

I love the fact that some of my favorite basketball players continue to reinforce that for me. My question is then, how do I keep my foot on the gas? By having you on, Keisha, and having the conversations that we’re having on the show and our social media and making people uncomfortable. That’s the name of our show. It’s not shying away from uncomfortable conversations or not shying away with Black Lives Matter and seeing people unfollow me. I’m like, “Cool, there’s the door.” It’s emboldening my search for truth and our search for justice. We’re not free until all of us are free. My sense of humanity and extending compassion and empathy to my fellow human beings, even though you may be differently able, there are different skin colors, different ethnicity. If I am dedicated to freedom and liberation for all, I’ve got to step up and keep my foot on the gas. By seeing things like the Oprah cover and what’s going on in the NBA and what’s going on with your work in the world, it’s a good reminder for me to like, “No, we’ve got a lot more to do.” It’s not a couple of squares on your Instagram posts and then you step away from it.

It’s important too to be reminded of something as simple as retweeting or resharing somebody else’s message to amplify their voice when their voice may not be heard as loudly. Sometimes I hesitate to do those things because I don’t want it to come across as performative. What I’ve learned is that I’d rather it come across that way than not do it at all and try and see if it makes a difference.

That would work. All you can do is try.

Keisha, what is next for you? What are you working on? What’s on your heart? I know you’ve been doing masks in addition to your clothing line. I know it’s tough because we’re in this time of uncertainty. You said that it’s about taking it day by day, but besides being in Oprah magazine, which we will put some positive energy towards. Maybe if we keep saying it, it will lead to the SEO traffic. You should mention that as much as possible and putting it out there and doing the work. You’ve been part of many great interviews and magazine features online. You speaking out about your experience and helping other people understand it. It is wonderful. What else are you working on? What’s coming out for you? What can we keep our eye on your social media, your website, and your shows?

I would say continue. Make sure you subscribe to my email list. I am always coming up with new designs, new creative ways to express what I’m dealing with through my clothing line. I added some home decor pillows on my website. If you see my apartment, I have different ones on the couch and the bed. I was like, “Why not ask them decor pillows? That would be cute.” I’m always thinking of different things. My ultimate goal is to hopefully create an adaptive clothing collection for people with disabilities because it takes us such a long time to get dressed regularly. I would love to create an adaptive and more accessible clothing line for people with disabilities under the Girls Chronically Rock Umbrella. There are many different things. I want to continue to do different speaking engagements, inspiring others, inspiring students. I would love to do a TED Talk. That’s on my list of things. I would love to do that, but most continue to thrive, continue to grow Girls Chronically Rock and build it into a major empire.

I do not doubt your ability to make that happen. What are some of your sources of inspiration and any resources you might want to share for others to continue to learn not just from you but, where do you get information? Where do you expand your awareness and your knowledge of disability and COVID? What do you feel is a great source of information for you?

A great source of information for me and what has helped me along the way is connecting with other individuals in the disability community on social media. I realized hashtagging can be like your best friend. On Instagram, you can now follow the hashtag. For instance, I follow #DisabilityAwareness, #ChronicIllness, #Entrepreneur, #Podcast and that would bring you to a whole different range of other individuals that can connect with you. If you hashtag entrepreneur, you would be surprised by how many other hashtags and many people using that. You can network with those other individuals. I know the great support is also the different support groups that I am on Facebook like Boston Business Women, Women Helping Women, podcast group.

There’s a group I’m a part of for muscular dystrophy, Living with Limb-Girdle. Being a part of a community that you can create within and can understand what you’re going through and vice-versa has helped me along the way. I would advise that with other people, regardless if you’re going through something or not. If you want to be a business owner/entrepreneur, whatever you want to do, and reach out to those different groups. The community is warm and welcoming. You never know who you can meet and what connections you may get some ideas from.

Keisha, it has been a breath of fresh air having you here. Your spirit, your energy, your heart, your positivity, they come through. I appreciate you expanding us, opening us up even more to your experience, and what it is that you’re bringing to inspire this world. I feel my heart is more open. I feel you cracked me open even wider. Thank you for bringing that love and that energy here.

Thank you for having me. I appreciate it.

For the dear audience here, whether it is your first time reading this or you’ve been with us since the beginning, you can access all of Keisha’s resources, her social media handles, Girls Chronically Rock. You want to support her by getting one of her amazing masks, t-shirts, or new throw pillows. You can access all of her resources and links at Wellevatr.com. You can follow us more on social media. Our handle is at @Wellevatr on Instagram, Facebook, Twitter and Pinterest. We also have a YouTube channel. We’re going to start posting more video content there. Thank you for being here, Keisha, and bringing much joy, openness and education to our audiences. We love you and we appreciate you.

Thank you for having me!

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About Keisha Greaves

Keisha Greaves is a motivational speaker, the founder of Girls Chronically Rock, and the Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). Girls Chronically Rock (www. girlschronicallyrock.com) offers inspired fashion celebrating Muscular Dystrophy and other chronic illnesses.

Over the past few years, Keisha has been featured in Good Morning America, Today Show, WCVB Chronicle, ABC News, Thrive Global, Politico, Improper Bostonian, Boston Voyager, Herself 360, Liz on Biz, among other outlets on and offline. One of Keisha’s proudest moments is being featured In Today Style Heroes among other celebrities such as: Gabrielle Union, Drew Barrymore, Debra Messing and more. Another proud moment of Keisha is being featured on Channel 5 ABC Chronicle sharing her story. She’s lent her voice to audiences at the Spaulding Rehabilitation Center in Charlestown, Massachusetts General Hospital, the Boston Muscle Walk, local “Fill the Boot” events, Cambridge City Hall, and Girl’s Night Out for Muscular Dystrophy – a Boston-area fundraising event held by NextonScene.

Keisha spearheaded fruitful collaborations with other notable fashion influencers which resulted in thousands of dollars raised for MDA – the most successful collaborations being with renowned designer Sara Campbell and Althea Blackford, the woman behind Caribbean Fashion Week.

One of Keisha’s proudest moments happened after working and meeting with Massachusetts Governor Charlie Baker: Keisha got September 30 officially proclaimed Limb Girdle Muscular Dystrophy Awareness Day. She also received the proclamation from Mayor Marc McGovern from the city of Cambridge. To book Keisha for your organization, simply email her at [email protected]

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