Keisha Greaves is the founder of fashion label Girls Chronically Rock, and is a motivational speaker and former Massachusetts State Ambassador for the Muscular Dystrophy Association (MDA). Diagnosed as a graduate student with limb-girdle muscular dystrophy, she is now largely wheelchair-bound. As a patient advocate, she worked with Massachusetts Governor Charlie Baker to have September 30th officially proclaimed as Limb-Girdle Muscular Dystrophy Awareness Day in the city of Cambridge, MA. Her passion is in adaptive fashion, and she works with Framingham State University students to teach the importance of access and practicality in their designs. She has been featured on numerous media outlets, including Good Morning America, the Today Show, ABC News, Thrive Global, and Politico. She is an active participant in many local fundraising events for the MDA and other organizations, frequently encouraging audiences to “Fill the Boot” to support research and awareness. She’s also a total inspiration, encouraging those of us living with chronic illnesses to embrace the change and move forward into our new lives with grace and enthusiasm. Tune in to get dosed with an infectious amount of joy!
Tune in as Keisha shares:
- that she was diagnosed with muscular dystrophy after an MRI and muscle biopsy
- that when she was first diagnosed, she knew nothing about her condition
- that she was very much in denial of her condition early on
- that muscular dystrophy is a progressive condition, and that her limb-girdle type also affects her heart
- what muscular dystrophy is
- that because her condition is progressive, she’s slowly deteriorated physically — beginning at first with a cane, then a walker, and now full-time in a wheelchair
- how much more independent she is in her wheelchair, which she adopted in 2019
- how she’s decorated her wheelchair to customize her appearance
- how she’s connected with other Spoonies through social media
- the grieving process of being diagnosed with a progressive and chronic disease
- how she unwinds
- why she's still working toward accessibility equity as someone who is wheelchair-bound
- discrepancies in insurance coverage, from prescriptions to mobility and transportation as a disabled person
- what’s next in her business: a Girls Chronically Rock adaptive clothing collection
- her top tips for staying happy and fulfilled when living with a disability
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Lauren: Okay guys, thank you so much for joining us. I am here today with Keisha Greaves, who is the founder of Girls Chronically Rock. She's going to talk to us about that. She's also going to tell us about life with limb-girdle muscular dystrophy or (LGMD). So Keisha, thank you so much for joining us.
Keisha: Hello! Thank you so much for having me. I'm happy to be here.
Lauren: Oh, it's such a pleasure. I was so thrilled when you and I got in touch, because what you're doing is so awesome. And I thought we would just start from the beginning here. If you could tell us when and how you first realized that you had something going on health-wise, and what steps you've taken to control and manage symptoms day to day?
Keisha: Sure. So when I first started to get symptoms regarding my muscular dystrophy, I was actually in graduate school — so I was in probably my early 20s. It wasn’t something I was born with; I still don't know to this day. Or possibly it could have been something in my body as I was born. We never know what's going on in there. But anyway, I noticed as I would be walking, my leg would kind of just buckle and give out on me. It was weird, like it happened once before. So I’m, like, whatever, and just brushed it off. But then it just happened repeatedly, back and forth repeatedly. And when I fell, I wasn't able to get myself back up. I needed assistance. And sometimes, more than one person to just get me up. I was like a deadweight. So my mom and sister noticed that, and they’re, like, “You know, I think you should probably go see a doctor. Like maybe orthopedic.” Because we were thinking maybe it's something with the feet. So I’m, like, okay … you know, not thinking anything much of it. I’m, like, all right, let's go, no biggie. And so we go to Tufts Medical Center here in Boston.
Two doctors come in and they examined me; they looked at me, they told me to raise my right leg, raise my left leg — and the legs would not cooperate.
They had to do it themselves, bring the leg up. So I’m pretty much not thinking anything of it. They kind of look at each other, both doctors, and then they tell me, “I think you need to see a neurologist because something's not right. I think it's more like neuro-muscular.” So I’m, like, okay. I go see my primary care. She then referred me to go see a neurologist, which is at Mount Auburn Hospital in Cambridge, where I lived at the time. I’m, like, all right, still not thinking anything much of it. So I go, we do several testings, we did blood work, EMG, EKG, MRI … you know, the X-ray where they put the whole body in. That was pretty interesting; that was my first MRI.
Lauren: They’re pretty stressful if you’re not happy in small spaces.
Keisha: Yes, that’s true. Because she did ask me, and I was, like, “I'm fine.”
Lauren: Because you don’t know until you're in there. I fell asleep when I had one, too. But I think a lot of people get really anxious.
Keisha: Yes, I could imagine. So I'm just, like, okay, and then they took a piece of muscle biopsy from out of my leg to kind of determine what was going on. From that muscle biopsy, that's when they determined that I had muscular dystrophy. I’m, like, what is muscular dystrophy? Never heard of it. Nobody in my family seems to have it. What are they talking about? I'm thinking, maybe they had something wrong. At that time, I was in graduate school. That same day I got the muscle biopsy, I couldn't even really attend class because I was in pain. It wasn't like this was a pre-thing; I went to the doctor that day and he said, “Hey, you want to do a muscle biopsy? We'll take off a piece of muscle.” That's pretty much what it was.
Lauren: So, treating it like it's no big deal. That's pretty invasive!
Keisha: Exactly. I’m there, I’m awake, while this muscle biopsy is going on. I see the piece of muscle and everything going out of my leg — and then I'm on crutches. I couldn't go to school, and of course I had to tell my teachers what was going on. But at the same time, I still wasn't processing everything.
Every time I went back to the doctor's, I just was thinking … maybe she was going to say, “Oh, that test result was wrong. You don't have muscular dystrophy.”
I was totally in denial for quite some time. I wasn't really telling friends. I wasn't telling family.
Lauren: Was it even explained to you what muscular dystrophy was, at this point?
Keisha: It was, but I wasn't processing it. I was, like, "What is that? What are you saying to me?" And then, of course, we go online and we go do our Google search and our own research. I'm seeing all this other different information … that it progresses over time; that as it progresses, it gets weaker. It affects all of our muscles; it affects the respiratory, the lungs, the breathing. So I’m, like, whoa. And it also affects the heart. So, for instance, I make sure to go get an echocardiogram once a year at the hospital. But I was totally in denial. I wasn't saying much. At that time, I was able to walk on my own. I walked with like a waddle. And then I started walking with pain. And even when I went on job interviews with my cane, I would tell them I sprained my ankle, or I was in a car accident.
Lauren: That's interesting.
Keisha: Yeah, that's how much in denial I was. I was saying everything but.
Lauren: But also it brings up that issue of when … if you're planning to tell your employer … when do you tell an employer that you have a chronic illness, and they may have to enact certain protocols, if anything happens to you. There's that aspect of it. But also there's the aspect of total discrimination when you're walking into job interviews with a cane, I'm sure. Which is a whole other thing.
Keisha: Yes! I was saying everything but. And they just went along with it. I worked in the retail field … I went to school for fashion, got my Master's in business … I was doing merchandising at the time, so eventually, I had to tell somebody because they would want me to go to back stock, downstairs, to get merchandise and things like that. And those were things I was unable to do. Because if I tried to do that, it was going to be even worse. So It wasn't until I started writing my first blog, a few years after, on Tumblr … it took for me to start writing out like my symptoms, like how I'm talking to you now … you know, I was falling … And it took that moment for me to say … wow, I have muscular dystrophy. It took that for me to write that, and not what the doctors were saying.
Lauren: Can you tell our listeners a little bit about what muscular dystrophy is, in case they don't know?
Keisha: Sure. Muscular Dystrophy is a progressive muscle disease; there are different types. For instance, as you mentioned earlier, my type is limb-girdle muscular dystrophy. And then there's also SMA, which is spinal muscular atrophy; and then there’s Duchenne. So there are different types where it may affect different parts of our bodies. My limb-girdle affects pretty much my whole body, pretty much my limbs all the way down my legs. Pretty much if I was to see you or to give you a handshake, it's kind of difficult for my arms to reach out. So you pretty much would have to pull my arm. Even to give you a hug is difficult, and things like that. Getting dressed for me now is a challenge, so that's why I have a personal care attendant who helps me get dressed and things like that on a regular basis. So it's a progressive muscle disease, it gets worse over time. My type, I was able to walk without mobility for quite some time. But then, over the years, I started walking with a cane. After the cane, then the walker. And then starting last year, January 2019, that's when I finally got a wheelchair. That was a challenge for me, because I was, like, oh, I would never get a wheelchair. I don't want that. That means that’s it.
But now that I have this wheelchair, I’m much more independent.
I’m not getting tired. Where, if I used to walk with a cane or anything, I was just out of breath, like, I can't make it. Now with my wheelchair, I pass my family and friends. I'm zoomin' around! And then of course, my wheelchair, I decorated it! I had to! So it definitely gave me more independence. I'm not walking so much. Now I know what other people have said in the past, like, ”It will be better.” I was, like, what do they mean? Now I get it.
Lauren: Are you in the wheelchair 24/7 now?
Keisha: Pretty much. If I'm going to use the restroom, I will wheel it into my bathroom; I would stand up, use my walker, and then position myself onto the toilet. Same as when I'm going into bed at night … I have my PCA assistance, but I get out the wheelchair and position myself to walk to the bed.
Lauren: It's interesting because it sounds like these mobility aids have become more, visually, a part of who you are as your understanding of your chronic illness has developed over time. It's sort of like your awareness has expanded with the size of the mobility aid, if you will.
Keisha: Right.That makes sense.
Lauren: Is it common for people to be diagnosed like you were as an adult?
Keisha: Yes, that is common. I found once I came out of my denial … because some people had told me at that time, “Oh, you should reach out to others that have muscular dystrophy. Reach out, there are different support groups,” I wasn't even listening to them. Why would I be a part of something that I don't have? I was, like, “You’re so silly. Why would I talk to somebody that has muscular dystrophy? I don't have that.” Eventually … it took some time. Thank goodness now for social media. Just hashtagging ‘muscular dystrophy’, hashtagging ‘disability awareness’, hashtagging ‘chronic illness’. I've connected with so many other individuals that have muscular dystrophy. And on social media, there's Limb-Girdle Muscular Dystrophy support groups. I have found other adults that were diagnosed at a later age like I was, so I was, like, oh, wow, so it's not just me. A lot of people I’ve met, they’re, like, “Yeah, I was diagnosed in my 20s.” And then as I’ve told my story … they went through the same thing with the same symptoms, with the falling, and they were, like, what's going on? And then, it gradually just progressed. And I’m, like, wow, so this just seems to be a recurring thing. Some people do have it from when they’re small, from when they’re born.
But I am grateful I was able to go to college when I did, without mobility aids.
I think back to how I used to walk up and down the stairs in my dormitory with bags of groceries, and with all my stuff in high school, walking all the way up to the fifth floor. Now, I would not have been able to do that stuff. So I’m, like, wow, it's so crazy that you never know what's going on with your body. You just never know what’s going to occur.
Lauren: Do you think having lived in an abled body for the first 20-odd years of your life, and then losing your mobility, was perhaps even more of a shock than it would be for someone who's dealing with something that is also chronic but doesn't affect their mobility? Do you think maybe there is an element here of the grief being perhaps even more compounded because you went from total ability to needing assistance all the time?
Keisha: It's so funny you bring that up, because I was planning on writing a blog about that. I was gonna title it “Grieving the Person I Once Was” — if that makes sense. Because here I was driving in my Toyota Rav4, going on about my business, going to work, not relying on people. My PCA says I'm a particularly organized person, too. So that was just a challenge in itself just to get PCA help. You know, it's like, oh, my God, no. I feel like sometimes I don't know where things are. It's a lot. I wasn't dealing with PCAs from the time I was small; I was able to drive and do my own thing. So, yes, I definitely feel like it was a big thing. I think that’s why my whole mindset, I was in denial, because I was, like, whoa, I was just walking pretty well and now you're telling me I have muscular dystrophy? So that's a huge change and a huge adapt. But sometimes I do just remember the days I used to get in the car, and I just think about little things, you know? So I definitely plan to blog about that.
Lauren: What about in terms of awareness of your mortality as well? Because we know this is a progressive disease, as you said. It’s not just something that affects your muscles; it also affects your heart, it affects other organs in your body. How has that changed your relationship to yourself?
Keisha: I kind of feel like … over time, I tell people, my family and friends … this is something that's out of my hands. I can't control this. I can’t block it on social media. I probably would do so when it makes me upset, or I say oh, I'm done with this. This came to me; I didn't ask for it, I didn't go looking for it. And this is something I’ve got to deal with. I just have to take it day by day. Right now, there is no cure, there's no treatment. The only treatment, really, is exercising, so I do physical therapy. Of course right now, with the whole COVID-19 going on … I was going to the pool very happily. I will be excited to get back into the water, because in the pool, I feel like I'm a mermaid; I can do things in the water that I can’t do on land. But of course, now they’ve shut that down — which I totally understand, because I probably wouldn’t have even gone if they’d kept it open, just to be safe. So when that opens back up, I will get back into the pool. But right now, I'm just doing exercises at home that I can, because of course I have limited mobility. So just doing what I can, and just taking it day by day. I continue to check in. Monday I have my first appointment with my neurologist from Brigham and Women's Hospital out here, so I'm excited to chat with him. There are different subtypes within muscular dystrophy. For instance, there’s limb-girdle type 2A, 2B. So for me, as my doctors say, I'm kind of a mystery. We don't know my subtype to this day. We have taken several testings, blood work, genetic saliva test, and they all have came back inconclusive.
Since I don't know my subtype for my limb-girdle, I cannot enter any clinical trials.
So I'm the type, I’m, like, “Oh, who cares?” I was telling my doctor, “Who knows what could happen? I’d like to be a guinea pig. If you don't try it on me, how are we going to know what works?” And they’re, like, “You know, Keisha, yes. But It's easier said than done. If we were to try this clinical trial on you without knowing your subtype, you can possibly grow a third eye.” That's what they said!
Lauren: Tell me that's not actually true! I mean, a third eye might not be the worst thing! (laughs)
Keisha: I was thinking, whoa! Maybe a tummy ache! I have a high tolerance for pain, but whoa, I didn't think it was that extreme. But I’m, like, then again, Keisha, this is why you're not a doctor. This is why this is not your profession! Another thing why I'm so grateful for social media … there is actually a support group on Facebook for limb-girdle muscular dystrophy for subtype people unknown. So there are people like this one guy who has never known his subtype from the time he was small.
Lauren: Wow. So you're not alone in that, which is wonderful.
Keisha: Yeah, I’m not alone. But I think just hearing that, too …that was a shocker. Like, I can't even enter a clinical trial without knowing my subtype. I cant get to type B if I don’t know if I’m type A first.
Lauren: So it sounds like you have sort of flown through this experience medically with a great attitude. And I'm wondering whether you found that you needed a personal advocate at any point along this journey, and whether that's impacted your relationship with whoever you've relied on?
Keisha: I will honestly say, I think I’m my own advocate. I may have had friends that suggested at that time to reach out to people that have muscular dystrophy, and stuff like that. Which was great advice.
But at that time, I wasn't even accepting the fact that I had it, so why would I talk to other people? When I eventually came out of that is when I first reached out to the Muscular Dystrophy Association. I was, like, “Hey, do you guys have support groups?” I opened the door but not fully; it was just the first step of reaching out. So once I did that, it just gradually happened. But I think I was honestly my own advocate with going to doctors’ appointments, writing down questions I wanted to ask and wanting to know, etc. And I love now, with the whole social media, and with some of the doctors out here in Boston … you can communicate with them and send them messages. We have something called My Chart, and it’s so convenient. Especially if I need a prescription refill. So yeah, I think I’ve been my own advocate.
Although there is nothing like talking to somebody … you might have the support of family and friends, but there's nothing like talking to somebody who actually gets it and is living with what you're living with every day, on a daily basis.
So I'm so grateful that on social media, they may have a suggestion, information that I don't know. Like, “Ask your doctor about this.” Or, “Have they tested you for that?” So I do like that. And I’m, like, "Oh, wow, I didn't hear that.” Because, let's be honest, not all doctors know everything. A doctor over there is going to say something different than my doctor here. And I'm like, “Wait, why is he saying that?” So I definitely like support groups where they have suggestions; I’ve definitely got some advice from there as well.
Lauren: That’s wonderful. So, what does a typical day look like for you now? How are you balancing the demands of your work and your life as you're managing symptoms? I know you've got a PCA, you mentioned. Tell us about that.
Keisha: I just honestly take it day-by-day. I pretty much wake up, and I tell my family and friends, “I'm just trying to make it from the bed to the bathroom without having a fall, without losing my balance and then having to hit my lifeline button.” Once I make it to step A, I gradually go from there. But I still like to be a planner; I always like to plan ahead and get things done. So, my PCA helps me out of bed, I go about my business, go to the bathroom, I go in the shower. And then when I come out, my PCA assists me in getting dressed. I come out, enjoy my day, get some breakfast, possibly some coffee … Depending on the day, on what I'm going to feel like, I open up my computer and work on my business, social media. What I tell people a lot is, honestly, what has kept me sane all these years and kept me going is, I love seeing the support of people on social media telling me, “Oh, I love what you're doing,” and things like that. That keeps me going. But I'm also a TV fanatic; I watch a lot of shows.
Lauren: I’m with you!
Keisha: Yes, I watch a lot of shows. Just to look forward to watching someone else's reality life. Or just funny stuff, like Jersey Shore: Family Vacation. I like watching that, it’s entertaining! I love watching different things …I’ll watch 9-1-1, I watch Netflix … I watch a range, but that's something I look forward to.
Lauren: That’s really how you take a break from reality, it sounds like.
Keisha: Yes, exactly.
Lauren: I know you mentioned that in the early days of your diagnosis, you would go to a job interview with your cane and say, “Oh, I sprained my ankle.” Have you been in situations where you've been confronted, or forced to justify or validate the fact that you had your illness — to other people. Basically a situation in which you weren't believed?
Keisha: Meaning, in a job environment?
Lauren: Not necessarily in a job environment … any kind of environment. Just something where you had to convince someone else that what was real, was real.
Keisha: Yeah, definitely. Sometimes when I was at a job working with employees, like in a retail store, when they had asked, “Oh, can you pick up this box? Can you pick that up?” I had to say something, you know. I mean, I’m thinking, I can't lift this box. So I'm either gonna try to lift up this box, or myself some more, or I'm gonna have to tell them what's going on. So yes, as I did have to eventually be in that position to say that, I was, like, “I have to tell you guys something.”
It was mixed emotions, because I'm thinking … I'm saying it out loud. Are they going to accept me? What are they going to say? Are they gonna fire me on the spot?
Lauren: If they do, it's discrimination!
Keisha: Yeah, exactly. That's true! But I wasn’t announcing it, like how I am now to you. I tell people, if you had asked me a few years ago, “Do you see yourself speaking, engaging, sharing your story, talking on podcasts?” I would have been, like, “No way. What would I be sharing my story about?” So it's kind of nice, and I’m proud of myself to see what a long way I’ve come. And I still tell people … I have my days. Don't get me wrong. Some days I wake up, I feel super fatigued. I feel tired, I may have a fall, or my leg may want to give out. That's something out of my hands. My body's not immune to it. I’m not happy it happens. I still have my days with it, and that might put me in a damper mood. But then, it's like, in my head, oh, but I got that show coming on later! And I'm looking forward to that — if that makes sense.
Lauren: Yeah, absolutely. You're finding the positive, which is so important. Do you think that you've also possibly experienced undue either prejudice or privilege, one way or the other, in the healthcare system as you've been navigating this diagnosis? And I mean this in particular in regard to self-identity. So in other words, because you're a woman of color, can you see your circumstances maybe having been different if you presented otherwise?
Keisha: Oh, you know, I never thought of that! I’m … I don't know if I’d say naive … but I would hope that my speaking would be the same for everybody else — and vice versa. But, you know, you made a good point, because sometimes that's not always the case.
Lauren: Well, statistically, we know that’s not the case, right. That's why I asked because really what we're seeing in terms of discrimination in the healthcare system is absolutely an epidemic and absolutely a health crisis. I'm wondering if you've seen that reflected in your experiences. But if you haven't, then that's a great sign!
Keisha: I have not, not that I know of. Unless I've been so oblivious.
Lauren: I wonder if it's also because you've been in Boston and surrounding areas … you’ve had access to some of the best doctors. It's not like you've had to travel very far to get to the good specialists.
Keisha: Right. I tell people, in Boston we're known to have the best doctors. But don't get me wrong. If some doctor from, say, Dubai or India, says he has a special medicine and would like for me to try it and would pay for me to go there, I would more than likely go. I have heard that other neurologists in different places would say something totally different. And then I would go to my doctor's appointment here, and I’m, like, “Oh, I heard such-and-such … they got tested, and they got this.” And the doctor’s like, “Oh, no.”
Lauren: Yeah, well, it's that opinion … we see this with doctors … sometimes there are some doctors out there, and they’re the odd ones out because so many doctors are so wonderful. But you know, there are the odd doctors out there who do think that they have all the answers. So it's hard for them to be told by an educated patient like yourself to look deeper at something.
Keisha: Yes, its so true! You nailed it. They kind of like, “If I don't know about it, why would you even ask me?” And it’s, like, “No, you don't know everything, but I am bringing you some information!”
Lauren: Absolutely. Well, speaking of that, can you tell us, given your experience, what ways the healthcare system here in the US is working for patients? And maybe any ways that you've experienced that it falls short, or requires improvement?
Keisha: I can speak for here in Massachusetts. Right now, I have Commonwealth Care Alliance for my insurance, and I would say I love it. And I like how they have personalized me with a care manager, where I can communicate with her if I need a prescription refill, or if I need a certain thing, or to ask is the insurance going to cover that? I like that communication, and they actually have something new called Member Voices, where they invite patients to come in; we have a meeting and they ask, ”What can we do to improve so it's better for you guys?” For instance, this letter … what could be more detailed and explained in this letter? Or transportation. I have been to a few of those meetings because I've had several things to say regarding letters, and especially transportation where I felt they were lacking — especially when I got my wheelchair and I felt like the van was never available. I’m, like, “You're making me feel like I'm not good enough.” They had their regular cars when I had my cane and stuff, but now that I'm in a wheelchair, I can't get a ride to my doctor's appointment? That's something I still have ongoing with them.
So I'm glad that they gave me the voice to speak and to tell my truth, and to say what's going on.
But then, in other things, for instance, my prescriptions are totally free. I don't have to pay for any co-payments, or anything like that. Where again, when I'm on these different support groups, let's say Living with Muscular Dystrophy, I hear all these different things about how the insurances cover this prescription, but not a wheelchair. A wheelchair like the one I’m sitting in now would cost over, I think, $5,000 — and I didn't have to pay anything. So those things, I am grateful for. But then it saddens me … why is it not like this everywhere? I'm not saying that out here in Boston the insurance companies are perfect — because they're not. They can get better. But I am grateful when I hear other stories. I’m, like, that's awful. They have a disability; they didn't ask to be that way. Why should they have to pay out-of-pocket for a wheelchair? So, those things I have to think about. I'm grateful for the insurance I have, but I'm not gonna say, oh my God, I have the best.
Lauren: Well, I think Massachusetts is known to be a state that takes very good care of its residents. And it sounds like you're also enabled and encouraged to be an empowered patient as well. Whereas you might not have that experience somewhere else.
Keisha: Yes, that is true.
Lauren: Why don't we get into your advocacy work, because your advocacy work spans multiple channels. You're working with the Muscular Dystrophy Association. You've got Girls Chronically Rock. Can you tell us all about the work you're doing?
Keisha: Sure! So, I am the former Muscular Dystrophy, Massachusetts Ambassador. I'm so grateful for them because that's when I got more involved with the MDA, aka Muscular Dystrophy Association. I would just do different speaking engagements with them. I love working with firefighters, because, a lot of people don't know, firefighters raise a lot of money for the MDA. They do like fundraising events, like beer, wine tastings. They’re just so awesome. And that just really made my heart melt, because these firefighters already put their life on the line every day for a fire; they never know what situation they're going into. And for them then to take the time to raise money, and to go out on the street and do what they call “Fill the Boot”. That's when people put money in the boot, and that money goes to the MDA. So that just touches my heart when I see those firefighters; I just love working with them. Going to different events for the MDA. And then, I got my undergrad in Fashion Design and Merchandising from Framingham State University; I always knew I had a passion for fashion. I knew I wanted to be a business owner and an entrepreneur. So, after I came out of my denial a little bit, after graduate school, I was, like, you know, it's time to put my degree to use. It’s time to put my art and my dreams that I want to pursue, bring them to fruition.
You know what … I’m a true believer that things happen for a reason at times. Maybe this is my way, my platform, to create a business.
But then also to be able to share my story, inspire and motivate others. Because from what I can tell, there are others out there just like myself. So honestly, I was lying in bed one night and I thought, “Girls Chronically Rock!” I knew I wanted something with the word “chronic” for chronic illnesses — but I didn't know exactly how I wanted to incorporate all of it together.
Lauren: I just love that you you made a choice from the get-go to include people other than yourself. You were thinking bigger than just muscular dystrophy — which I think is really exciting, and it shows a commitment to the whole community.
Keisha: Thank you. I appreciate that! So yeah, that's when I thought of the name Girls Chronically Rock. I like the way that sounds, and flowed. I just kind of ran with it. I first started off selling T-shirts and stuff off Etsy. And then I was, like, you know, it's time to launch and create a website. I think it will look more clean, more professional. And that's when I launched my website. For those that don't know, Girls Chronically Rock is a clothing line. I have different T-shirts with inspirational quotes. “Girls Chronically Rock” is one; I also have “Hello my name is Chronically Ill Badass". That’s a bestseller. I also have recently launched a new one, “Trust your abilities”. Trust and believe in yourself, no matter what you're going through and what you may be dealing with. If you have an idea, or if you want to accomplish something, just go for it. Before you know it, you will be up and running. I also have “Walk with a Twist”, which I like because we all may walk with a walker or a cane … we all have our own signature walk. I plan to do so much more with Girls Chronically Rock. Right now, I have T-shirts. I have a kids’ line Kids Chronically Rock. I have hats, tote bags, accessories.
I plan to eventually come out with a Girls Chronically Rock adaptive clothing collection.
Because I don’t think people understand … sometimes it takes a long time for us to get dressed. On a regular basis. When my friends want me to go out, I’m, like, “You have to let me know in advance. I can’t just throw on a T-shirt.” And this is with help. I have to make sure I don't lose my balance by holding on to something. It takes us so much time. And I'm so glad that a lot of designers now in the fashion industry, like Tommy Hilfiger, have come up with an adaptive clothing collection now. It's like it's getting more awareness. And I'm glad that more designers are realizing … wow, an adaptive clothing collection can be for everybody. So I'm so glad for that.
Lauren: And they can look good, too. It doesn't have to look like disability wear.
Keisha: Exactly. It’s cute and functional; I love it. So yeah, I plan to make Girls Chronically Rock into a movement, but also build it into an empire. That's my goal.
Lauren: I love that. I think it's just so exciting that you clearly have such a positive attitude. I mean, so much of what you said today has got to be so inspiring for everyone tuning in right now. Because you're very much like: It's out of my hands. And I think that conscious understanding that this is not something you're in control of, so you're going to focus on the things you can control is a huge realization for a lot of us in our lives. Regardless of ability or disability. But it is something that when you're handed a chronic illness, it takes a long time to adjust to that realization. You’ve gone through that process, and you're handing that inspiration on to other people. And I think that kind of paying it forward is exactly what we all need in this community. And it's just so exciting and positive to see.
Keisha: Yeah, well, thank you. I appreciate that!
Lauren: Yeah, it's lovely. So we're sort of sailing into the tail end of our interview and I like to close out with a couple of Top Three lists. And I feel like you're going to have good answers for this. No pressure!
Keisha: We’ll see! (laughs)
Lauren: I'm wondering if you have Top Three Tips for someone who … maybe they suspect something's off, maybe they've been diagnosed already and they're living with chronic illness. What would you recommend for people who are in this chronic illness world with us all?
Keisha: I would just speak about what helped me for myself. I totally get that … especially if you were like myself where you was able-bodied before, and then all of a sudden this thing just comes out of nowhere … you’re, like, whoa, where did you come from? I would definitely say with this whole social media hashtagging … you might do #musculardystrophy, #lupus, #MS … and you'll be surprised of the range of people who come up. I’m, like, wow! And now I love on social media/ Instagram, you can now follow the hashtag. So whenever someone puts a hashtag or posts a picture, you're connecting with somebody new that you haven't already. So I would definitely say … reach out, hashtag, see what comes out. You'll be surprised, just writing a message to somebody, like, “Hey, I’ve seen your posts on Instagram or Facebook; I see that you have this, I have that as well. I'm new to this. I'm totally surprised. How did you deal with this?” And you'll be surprised — because I have done that, and people have done that to me. I get excited when they write to me. I’m not happy that they're dealing with this, but I get it. I was there. I was, like, do I want to reach out? Do I have muscular dystrophy? That’s what was going on in my head. You'll be surprised. I'm glad that we now have that range on social media where you can connect with others.
Because I continue to say to people … there's nothing like talking to somebody who actually is dealing with something you're dealing with.
You feel some kind of comfort, and then you have that person you can call on. So definitely reach out; the person will be happy that you reached out to them.
Lauren: Yeah, that’s a great tip. I love that. So, like, reach out and seek community.
Keisha: Yes, definitely.
Lauren: Okay, that's one. What else have you got?
Keisha: I would definitely try to keep yourself busy. Keep your mind off it. As I mentioned, I love to watch TV. My TV keeps me sane. I know a lot of people like to watch Netflix, Hulu. Watch something that makes you laugh. I like watching the Kardashians. People say, "Oh, why do you like watching them?” I love them. I think they're entertaining, and they give me life! It’s something different. Some people may just want to watch YouTube. Maybe some people might like to watch other inspirational stories there, something other people are dealing with … like, wow, look at her. She's doing what she has to do. She motivates me. Maybe think of a new project or a new idea, just to keep yourself busy and your mind off things. I know it's more easier said than done. But it helps. And it takes time. I get it.
Lauren: Yeah. And you might give birth to something like Girls Chronically Rock — which is super exciting!
Keisha: You never know! (laughs)
Lauren: I love that. Anything else? Any other tips?
I would say another thing is to realize … just kind of take it day by day. It's something out of your hands.
This is not like, say, a common cold where somebody will be, like, “Oh yeah, you're over exaggerating,” when our body’s dealing with something like a chronic illness. They can't comment. This is not like something we can take Tylenol for, or some green tea — the stuff you would take if you have a cold. So, just take things day by day. And realize this is your new life, and connecting with other individuals may help. Just take it day by day, and just keep going. Think positive and say, Hey, you know, I'm here now.l Take it day by day — and you know, things will get easier.
Lauren: Yeah, I think that's really lovely. What about one last Top Three list … you sort of mentioned a little of this already … but Top Three things that give you unbridled joy. I'm sure you've had to make some adjustments in your lifestyle since you got your diagnosis … but I'm wondering about Top Three things that you're unwilling to compromise on, despite any changes in your lifestyle. So this can be guilty pleasures, secret indulgences, comfort activities. I know you've already mentioned loving Jersey Shore and the Kardashians and things, so maybe it's your TV shows. But three things that make you super, super happy — that you turn to.
Keisha: Definitely, yes, I will say my TV shows and this can be a range of different things. Like I said, Keeping Up With The Kardashians, and I watch the Disney Channel. I'm happy Raven came back with one ravens home. So I would watch that! And another thing, I love to snack. That’s my problem, I love chips.
Lauren: That's not a problem. They're delicious!
Keisha: They are! I love Doritos, and I like a lot of hot n spicy. And another thing I'm obsessed with … I love pizza, and I like to eat it with chicken wings. They have to be buffalo chicken wings.
Lauren: Like on top of the pizza, or on the side?
Keisha: On the side.
Lauren: That's how you get your ranch dressing on the pizza, isn’t it? (laughs)
Lauren: I know how you're doing this. It's all strategy!
Keisha: Exactly! Of course, I’m eating healthy, but there’s nothing wrong with cheating, having a cheat day and treating yourself. But if I order pizza and some buffalo wings, that is something I'm excited about.
Lauren: You guys, this is the one thing about having a podcast … I wish everyone could have seen your face when you just said how excited you get about the chicken wings and the pizza! Because Keisha’s face lit up, and her little eyebrow just sort of spiked up there. She loves that pizza and chicken wings. It makes her very happy!
Keisha: I do! (laughs)
Lauren: I love that. Is there anything else you'd like to share with everyone who's tuning into the show today?
Keisha: Oh, I would definitely say, if you have an idea … if you have something you would like to create … go for it and start. Before you know it, the business will be up and running and you never know. There’s so many different social media platforms, like Boston Business Women. I'm sure there are business women’s groups in all different states and cities where you can connect and ask questions. You can have your idea, or possibly even partner with somebody. Maybe having something that occupies your time, I think will make you feel a lot better as well.
Lauren: I love that. I think that's really lovely. Can you tell everyone where to find you as well?
Keisha: Yeah, I am on Facebook under Keisha Greaves. I am also on Instagram, @GirlsChronically__Rock. Check out my website at GirlsChronicallyRock.com, and then please feel free to send me a message … DM me and ask me anything. I respond.
Lauren: Yeah, you do. Definitely. And also, look out for the adaptive wear as we move into the future of the brand.
Keisha: Yes, definitely.
Lauren: Keisha, it's been such a pleasure talking to you today. You're such an inspiration … that positivity, I’m soaking it up. It's startin’ my day off right. So I can't thank you enough.
Keisha: Thank you for having me!
Lauren: Oh, it's a total pleasure. You're an absolute gem. And I look forward to continuing to follow your journey, and to watching where GirlsChronicallyRock takes you — and the rest of the community.
Keisha: I appreciate that. Thank you!