Episode 98: Keisha Greaves, Disability Awareness

 

Intro Voices  00:03

Where do I go? It only happened once. I think I was singled out. The phone calls began about one month ago. What is hazing? Something happened to me when I was younger. I'm worried about my safety. He said he was sorry. Can someone help me? Where can I get help? Can someone help me?   This is You Matter, a podcast for the NYU community developed by the Department of Campus Safety. 

 

Karen Ortman  00:35

Hi, everyone, and welcome back to You Matter, a podcast created to teach, inspire and motivate members of the NYU community who have been victimized in some form or fashion and to identify resources both on and off campus that can help. I am your host Karen Ortman, Associate Vice President of Campus Safety Operations at the Department of Campus Safety, and a retired law enforcement professional.  Today I welcome Keisha Greaves at 24 years of age, Keisha was diagnosed with Limb Girdle muscular dystrophy. She later started the girls chronically rock clothing line to inspire others with chronic illnesses to have confidence and to not let their disability define who they are. Keisha is a motivational speaker has a Master's in Business Management and is the Massachusetts State ambassador for the Muscular Dystrophy Association, Keisha welcome to you matter.

 

Keisha Greaves  01:32

Um, hi, good afternoon. My name is Keisha. Hi, everybody.

 

Karen Ortman  01:35

Welcome. Great to have you here. So tell me at the age of 24 you were diagnosed with Limb Girdle muscular dystrophy? What is limb girdle muscular dystrophy?

 

Keisha Greaves  01:50

sure so yeah, so I was diagnosed at the age of 24 When I was in graduate school, with Limb Girdle muscular dystrophy. And so muscular dystrophy is like, kind of the overall you know, head of everything, but then there's so many different types. So my type is Limb Girdle where pretty much effects like pretty much to my neck down to pretty much all the way down to my feet. pretty much weakness and pretty much over time, the muscles do start to deteriorate. And that cause weakness of you know, like now, for instance, I can't walk anymore, I can't stand up. And now I am wheelchair bound, where, you know, in the beginning, when I was diagnosed, I used to be able to walk up the stairs a little bit, um, have some kind of more strength. But over time, as the doctors did mentioned, like it will get, you know, weaker over time.

 

Karen Ortman  02:32

Sure. So do you have use - You said that you're in a wheelchair - but can you move your arms and your legs?

 

Keisha Greaves  02:39

Um, yes, I can move them like to an extent like maybe if I'm doing like a tap, like, you know, you can like tap your toes. As I'm doing now on the foot rest of the wheelchair or I'm able was once if my laptop is on my arm, my legs, I'm able to type that way like, you know, but I just need a little bit of help. So that's why I'm grateful. I have my PCA is here. You know, pretty much you know, 24 hours.

 

Karen Ortman  02:59

Yeah, your PCA you said?

 

Keisha Greaves  03:01

 Yeah, personal care attendants. also known as caregivers.

 

Karen Ortman  03:06

And so how long have you been in a wheelchair?

 

Keisha Greaves  03:09

I got this wheelchair 2019. so not too long ago.

 

Karen Ortman  03:15

Yeah. And so you were diagnosed at the age of 24. You you started the use of a wheelchair in 2019. How many years had you had Limb Girdle muscular dystrophy before you were wheelchair bound?

 

Keisha Greaves  03:34

so yeah, I was diagnosed in like 2010/ 2011. So, up until 2019, I used to be able to drive independently with my car, my Toyota rav4. I still missed that to this day, I was used to work merchandising working at Nordstroms, Macy's and able to travel to the different department stores to do my merchandising work. And so I was still you know, able to kind of, you know, tobe me without any, you know, caregiver I was still you know, able to stand up in the shower independently get dressed. So, of course, having that drastic change that was a lot, you know, so now I have to rely on you know, these PCAs I'm not able to drive like I used to so  it's um, it's still a lot to process like, it has gotten better over time, you know, with dealing with it, but I still have my days.

 

Karen Ortman  04:20

So prior to the age of 24, which was back in 2011. When did you realize that something was wrong? Like what were your symptoms leading up to your diagnosis?

 

Keisha Greaves  04:32

Sure the symptoms leading up to my diagnosis, I noticed I would just be walking and my leg would kind of just give out on me. Without any like notice or hesitation, my leg would pretty much just like -bloop - and I would fall to the floor. And I noticed I was like unable to get myself back up. It was pretty much when I fell. I was like a dead weight. So it was the last time me my mom and sister were at the supermarket. I was pushing the cart and then I fell in the parking lot and they my mom and sister could not even lift me up So a stranger came over to assist me in getting up. And it was at that moment where my mom was like, Oh, I think let's go see orthopaedic because what they can maybe it's just something in the feet. And so that's when it kind of all started and then we go see an orthopedic at Tufts Medical Hospital out here in Boston Mass. And I always remember that appointment, I go in the doctors come in asked me to raise my right leg, the right leg would not extend out as it would. And I that was the first time I noticed that. And both doctors just kind of looked at each other puzzled like, Ah, I think you need to see a neurologist. So I'm just like, Okay.

 

Karen Ortman  05:36

so do you have any idea at this point? What the options could be in terms of a diagnosis?

 

Keisha Greaves  05:42

no. that's the thing because nobody in my family seem to like, you know, have like we my family we deal with like cancer and kidney disease. But I was not thinking anything like a muscle disease or anything related because I never even heard of muscular dystrophy. So I was diagnosed.

 

Karen Ortman  05:56

So you talk about the experience in the grocery store, but for how long Were you feeling these symptoms? Up to that point?

 

Keisha Greaves  06:04

Oh, I would say off and on for like, I want to say like over a year, I was getting those symptoms.  Yeah, but it wasn't like, you know, I just thought like, oh, maybe you know, I'm heavy. You know, I just need to lose weight, no big deal. But you know, as to come to find out that wasn't the case.

 

Karen Ortman  06:18

Yeah. So you go to a neurologist?

 

Keisha Greaves  06:22

Yes, I go to neurologist out here in Cambridge, Massachusetts, where I live, Dr. Kraft and Wang and Mount Auburn hospital. And I always I'm so grateful for her to this day, I still see her. And I go straight to her. And we do several test things. We go straight to it. She gives me a EMG EKG, MRI. But the most interesting of all was the muscle biopsy, where they took a piece of muscle from out of my right leg. And from that muscle biopsy, that's when she determined that I have Limb Girdle muscular dystrophy.

 

Karen Ortman  06:51

How did you feel when you first heard that?

 

Keisha Greaves  06:55

I was like, why it's I'm like, Who? Like I honestly thought she called the wrong person. Because I was like, What is muscular dystrophy. Number one, nobody in my family seems to have it. Like what are you talking about? So I was just like that was just like a lot to process. And then of course, like most of us when we you know, here's something like that we go straight, you know, to the internet, and I start Googling, researching what's muscular dystrophy. And then of course, reading that stuff. That's not the best, you know, it's not like I was reading great things, right. I was reading, there's no treatment, there's no cure. Some people don't live after certain age, and it worsens over time. So I'm reading all that. Like, she can't be talking about me, like I don't have muscular dystrophy. So so when she said that...

 

Karen Ortman  07:34

I'm sure it was. Yeah, so when she said that, um, do you recall, like, what you're sort of your internal dialogue was in, you know, in your own mind?

 

Keisha Greaves  07:49

Um, yeah, I mean, I was like, just totally shut down. Like, you know, it's not like I ran on social media, like, Oh, hey, my doctor just told me like, I totally shut down. Only person that knew what was going on was my mom and sister and of course, because my mom was with me at every appointment. So you know, the only reason the rest of the family knew was because, you know, my mom would tell them, but it wasn't something I talked about. You know, even when I was working at the time, you know, when this tide started to progress, you know, I was still driving, but I walk with a cane. And even when I went into work, or when I had job interviews, I would tell them, I sprained my ankle, or I was in a car accident, instead of just saying I have, you know, muscular dystrophy. So that's how much in denial. I was. Because everything sounded better. It sounded better to say, Oh, I was in a car accident, or sprained my ankle, instead of saying I had muscular dystrophy, because I guess saying it out loud at that time, that really, you know, just seemed like it made it real,

 

Karen Ortman  08:40

right. When you get a devastating diagnosis like that, are their mental health resources that are recommended to you.

 

Keisha Greaves  08:49

Um, at the time, I would say, there was not any, I would say mental resources at the time that I recall, my neurologist or primary care did not bring up to me and you know, and I didn't ask neither, because, you know, I'm like, why would I ask because in my mind, I didn't have muscular dystrophy.

 

Karen Ortman  09:05

Right. Right. But it was a lot to process, I'm sure. And the challenge for anybody. How long were you in denial that you suffered from limb girdle muscular dystrophy?

 

Keisha Greaves  09:20

Um, I was in denial for quite some time. Like I tell people, I feel like I just came out of denial like the other day. So it definitely took you know, some time it was like when my friend first suggested, I write a blog post and just to kind of talk about, you know, my symptoms and my story of living with muscular dystrophy. And when he first mentioned that, I'm just like, why would I do that? I don't have muscular dystrophy. So you know, that's how much in the mindset and denial I was. So then one day, I just kind of opened my laptop and I just started writing, you know, blogging, I believe I started on Tumblr, and just started talking about the symptoms and saying, you know, everything like what I'm going through, like how I'm talking with you now, and it was At that moment when I started writing it and saying it out loud, where I'm like, wow, I have muscular dystrophy. That's crazy. It was like, wow, like I have muscular dystrophy, like, nevermind what the doctors were saying. Yeah, it was like it took that moment as I'm writing it out loud. And that I remember just posting it, sharing it on all my social media platforms like Facebook, and I got so much like, great positive feedback. And people was like, wow, like, Thank you for sharing, like, I chatted with you the other day, and I had no idea. You were going through this, because looking at me, you wouldn't know. Because some people don't understand disability, sometimes they're invisible. And sometimes you can see them and you know, etc. So it's like, looking at me, you want to know that I had muscular dystrophy because I said, I was able to walk even without a team before. So it was just kind of like, you know, so when I posted that, that kind of opened the door a little bit. And then that's what kind of ease me of you know, wanting to get involved with the Muscular Dystrophy Association. And then I also started connecting with other people on social media.

 

Karen Ortman  10:55

And that was helpful.

 

Keisha Greaves  10:56

Yeah, it was helpful, because, you know, what I noticed was social media. And thank God for social media to this day, is, you know, using the different hashtags like muscular dystrophy, hashtag chronic illness, and I just met, like a whole new range of other people that have muscular dystrophy and are dealing with other illnesses. And I'm like, it just kind of, you know, made me feel at ease, because I'm like, Oh, I'm not alone. Like all the people out there and dealing with it, especially when I met two of my friends that I'm still close with to this day, I'm through the MDA Muscular Dystrophy Association, here in Boston used to have meetup groups. And so I was able to meet like two girls, you know, my age, and then that was kind of cool, because I'm like, you know, they're my age group. We can connect, we can talk about things. So that definitely made me feel good. That you know, I had others to talk to because I always say, Yes, I have the support of family and friends. But there's nothing and I mean, nothing like talking to somebody who gets it knows what you're dealing with when you're dealing with muscular dystrophy, or any type of chronic illness slash disability.

 

Karen Ortman  11:52

Right, and especially those who are experiencing the same thing. Wow, there's such value in those sorts of relationships and, and conversations. So tell me more about your blog post? Or do you continue to, to write a blog post,

 

Keisha Greaves  12:11

after that I was very consistent. And I wrote like a blog post at least like once or twice every month, but I took a little break, you know, kind of like on mental health because early August, August night, I did have surgery for a colostomy bag, and I got a super pubic catheter.  So that kind of put like a delay on things. But I would like to get back into the blogging and engaging with others, because I noticed the blogging really helped. Especially you know, me venting and kind of just blogging, and I also have like a small podcast, as well. So I would like to get back into that. So just kind of combined, and then people can hear me and you know, what I'm dealing with in different things. So I definitely am hoping by the New Year at least I'll get like to pick up back on those things. Yeah.

 

Karen Ortman  12:49

Good. New Year 2022. Right.

 

Keisha Greaves  12:52

Yeah.

 

Karen Ortman  12:53

Okay, good. How has your diagnosis impacted your relationship with your peers, you know, those that you were connected to prior to diagnosis? And and are they still in your life now? Or has that peer group changed?

 

Keisha Greaves  13:08

I would say the peer group has changed. Yes, I'm still connected with some of them. And then some of them, you know, has fade away. But I don't know if that necessarily has to do with, you know, me being diagnosed with muscular dystrophy. I just think as you know, sometimes as you get older, like, sometimes you don't have things in common with someone, you know from when you was younger, and it's unfortunate. That's something I had to learn, you know, along the way as I got older, where it's like, okay, and I'm such a private person to where it's like, my circle is very small, there's like, probably only one person that really knows, you know, all my business. So it's like to say, like old things have changed really, probably just had to do with us getting older ourselves in general. Yeah, if that makes sense. .

 

Karen Ortman  13:48

Are your family and close friends supportive? Do you feel that they, you know, fully understand what life is like for you living with this?

 

Keisha Greaves  14:00

It definitely opened up their eyes because I'm the first that I think actually had like a disability in the family. So I think it opened all of our eyes like my mom, aunts, cousins, like, they know that when we go someplace, we got to make sure it's accessible. And I appreciate that, like, some of my friends when we may go out to eat my friend. She's like, Oh, I called the restaurant in advance. I told him that, you know, you're in a wheelchair, and I wanted to make sure they had a elevator and I'm like, thank you. So I appreciate that. Because it's kind of like opening their eyes. Same thing with family when we're traveling, I have to make sure I get a wheelchair accessible room. So it definitely opened all of our eyes and they now know the importance of inclusion, accessibility, but I'm not going to say oh, yeah, they know what it's like to be in my shoes. Because No, not right. You know what I mean? They don't know what it's like, you know, like having, you know, to get transferred, you know, with a Hoyer lift having to rely on PCAs but as far as like accessibility and bad things, yes, I find kind of feel like they it has opened their eyes more but I think it's still a learning process for me as well for all of us because I tell people I feel like I'm still learning each day myself. It's not this is not like something I was born with like I had a whole life before this able bodied I used to play softball. In high school I used to run up and down the stairs and like on five flights of stairs, college at Framingham walked up the like three flights of stairs with groceries laundry. So I look back like, wow, like, your life can change in an instant. You never know what's going on in your body.

 

Karen Ortman  15:19

yeah. Have you connected with more support groups Now? you know, you said earlier, when originally diagnosed, there were no sort of mental health resources offered to you are there? Have you discovered more today that are helping?

 

Keisha Greaves  15:42

yes, I have this awesome Support groups like this Wiegel health, they, um, support people in the disability community. I also have our Odyssey that's another great support from people with disabilities and chronic illnesses. So yes, they are so much more that I have connected with. And just on Facebook alone, I have Limb Girdle muscular dystrophy support group. And so it just like goes into so many different details of different groups. But yeah, I'm like a part of all of them. That's kind of talking to everybody. Because like I say, at the end of the day, they get it.

 

Karen Ortman  16:14

Good. How do you balance the joys of life Living with a chronic illness?

 

Keisha Greaves  16:23

Um, I tell people all the time, I'm a TV Fanatic. My shows are honestly what keeps me sane. You know, because I do I watch everything from like Jersey Shore Housewives of Atlanta. I'm obsessed with Wendy Williams, because she's entertaining. She makes me laugh, you know. So it's like, just knowing I have like a TV show, or a reality show anything to watch. You know, that just honestly, it keeps, you know, my mind going and keeps me sane, because I can have a bad day where I had a bad fall. And you know, that can put a damper on things or something didn't go right. But just knowing I have a TV show on my DVR that honestly makes me happy. And I tell people that all the time.

 

Karen Ortman  16:58

Well that's good. It's hard for me to find shows that I like but when I find ones that I do, I really appreciate it.

 

Keisha Greaves  17:07

Yeah. Exactly.

 

Karen Ortman  17:10

Um, so where do you see yourself in the future?

 

Keisha Greaves  17:16

Hopefully, I see myself in the future, I still hope fingers crossed that there's some care, you know, for the muscular dystrophy. And just to give a little bit more detail of you know, limb girdle is that some people don't know what goes then deeper into different subtypes. Like it goes subtype to a subtype to be where it affects, I guess, different parts of our body. And that's something I'm still learning as well. But for my case, I do not know my subtype. My subtype is unknown. At the moment, we have taken several testing saliva tests, bloodwork, and the all the tests have came back inconclusive. So my doctor says like, I'm like a mystery, I guess. And because I don't know, my subtype, that part sucks. I won't be able to enter any clinical trials. So that's the downfall. So cuz at first I went to a limb girdle conference, like about, like, two years ago in Chicago? And I'm like, oh, yeah, I don't mind being a guinea pig. Let me into you know, clinical trials and you don't know my subtype. And the doctors like, no, he's like, we can't do that. He was like, you know, if you enter a clinical trial, and we don't know your subtype, he was like, you can possibly grow a third eye. I was like, oh my god, like it was funny, but it wasn't funny. I'm thinking, just like a tummy ache or pain here and there because I have a very high tolerance for pain. And so I was like, Oh, wow, a whole third eye. But I was like, you know, that's why I'm not a doctor. And so you know, but I'm hoping that eventually I will get my subtype. Like, maybe mine will be so unique. I can name it after my business like GCR subtype one. That's what I'm thinking but I would hope there will be a cure for you know, muscular dystrophy. I am hoping to expand my business Girls Chroniclly Rock, I want to see it in  New York Fashion Week LA Fashion Week. I want to get my line into retail channels such as Target Macy's and collaborate with designers such as Tommy Hilfiger and Kimora Lee Simmons to designers I looked up to from you know, the time I started school. So yeah, that's honestly what I would love to see.

 

Karen Ortman  19:09

So we didn't touch on girls chronically rock.  So let's talk about that.

 

Keisha Greaves  19:13

Sure, So yeah, girls chronically rock. So just to give a little back history, so I went to school at Framingham State University, where I received my bachelor's in fashion design and merchandising. So I always had a passion for fashion. But as we know, sometimes life takes a turn. So I was not expecting and then like I said, a year off after Framingham and then I went to Cambridge College. for graduate school, we received my Master's in Business Management. So when it was when I was in graduate school, where I started to get symptoms, and those sorts of things, and while I'm in graduate school, mind you I'm like writing on my business plan, you know about a clothing business but at the time I was gonna name it Millie, after my grandmother, my mom's mom passed from cancer. So you know, when, of course I was diagnosed with muscular dystrophy. It's like I totally shut down. I wasn't thinking about it. Actually business because I'm like, What doess my future hold? What is going to happen. And so after coming out of denial and writing the blog posts and kind of coming out of my shell, realizing, okay, I have this muscular dystrophy, this is not going anywhere. I was like, it's time to start putting my fashion degree to use. So I thought why not create something to help inspire and motivate others in the disability community. So I wanted to start it off, like because I'm a huge t shirt fanatic, and I love anything with graphics, anything with artworks, graffiti, bleach, I love all of that. So almost like, Oh, that'd be kind of cool to start off with a T shirt line with like, you know, different logos, inspirational quotes that are meaningful to me that, you know, I'd like to express through my journey like this on my line, I have trusted openness, trust and believe in yourself if you want to accomplish anything I have. Hello, my name is chronically, oh badass. Like, yeah, and maybe chronically Oh, but we're badasses as well. And so how I came up with the name is I knew I wanted something with the word chronic in it for chronic illnesses. But I didn't know exactly how I wanted to incorporate that. So I honestly was just lying in bed one night, that's when most of my creative ideas come to mind. I was sleeping. And then it just came to me and girls chronically rock, I loved the way it sounded. I loved the way it flowed. So I just kind of woke up the next day started off with etsy.com and start on selling my T shirts there. And then I worked with my friend I went to high school with actually was a graphic designer. So I chatted with him. He helped me create the logo and you know, kind of bring my vision to life. And then after some time over Etsy, I was like, You know what, it's time to expand, get my own, like personal website, get more professional stuff, branding. And so that's when I went on Shopify. And my friend also who designed my logo, helped me build the website, because I'm so not tech savvy at all, when it comes to that stuff. But now I'm getting better. So that's when it kind of all started with, you know, the t shirt lines. And then as of now, earlier this year, I recently launched an adaptive swimwear line for people with disabilities. So an adaptive line is like my bathing suits, for instance, has like snaps, and hooks where it's easily to take off at the shoulder on and off, because some people might think oh, swimwear is just for, you know, vacation and seasonal. And I'm like, No, for someone like myself with a muscle disease, like people like us go to aquatic therapy, often mom to get that strengthen our muscles back, because when I am in the water, I feel like I am a mermaid, I can do things in the water that I can't do on land. So I try to explain to people imagined for able bodied person, you know, when you get up from the beach, or from the pool, and that bathing suit just sticks to you. And it's just a hassle to take off. So imagine someone like myself, where I can barely hold my balance, and just taking that bathing suit. Oh, ah, that's annoying. So I wanted to say to make something more accessible and more functionable to kind of make it you know, more fun and exciting. Alright, so when I get out from the pool, now, it's not going to be a struggle to take off. So I am excited about it. It is called adaptive splash. Still kind of new, but I am hoping to get that into stores, hopefully into hospital gift shops as well. But I plan to do so much more in the adaptive part where I want to create a whole adaptive collection of pants, T shirts, jackets, and so that's my overall goal.

 

Karen Ortman  23:03

Or your is your clothing line for for women only.

 

Keisha Greaves  23:07

Um, I am mostly for women, but I do have some T shirts for men like I have a men chronically rock. And I also have a kid's collection kids chronically rock as well. Because I'm like, you know, kids have, you know, disabilities or so I want to make sure I cater to them right now the bathing suits are for women. But I plan to come up with a men's bathing suit, as well, because I see so many men when I go to aquatic therapy out here in Spalding. So I'm like oh yeah, that would be and I'm like, I might even wear the men some switch swimsuit like, you know, the shorts and then just put on a t shirt. Yeah. So yeah, I'm hoping to hopefully do that hopefully in the next year or so for the record.

 

Karen Ortman  23:41

That's cool. Where could people find your girls chronically rock clothing as well as your swimwear?

 

Keisha Greaves  23:48

I'm sure so you can find it on my website, girlschronicallyrock.com. I am also on Instagram girls chronically underscore Rock. And I also did want to also mention I also recently before the New Year opened a nonprofit called the GCR adaptive project. And that is kind of like a spin off of girls chronically rock. So what the girls GCR adaptive project, I am working with universities that major in fashion. So for instance, right now I am working with Framingham State University where I graduated from and kind of adding that curriculum into the fashion to kind of teach them the importance of adaptive fashion. Because like I told them, I'm like in the next few years, the adaptive fashion is going to be like a $37 billion industry. You know, designers now like Tommy Hilfiger target, but now have an adaptive collection. So you know, of course, when I was in school, I didn't have a disability. So I was not thinking about adaptive fashion. So this kind of like just opened my eyes to a whole new range of thing in fashion. So I actually just spoke to the fashion students earlier at Framingham. So like each semester, by the end of the semester, they come up with an adaptive piece, and then they read they show it to me and then I kind of like choose a winner. And so with this nonprofit, I'm just looking to raise funds, you know, for these students so they can kind of by the factor fabrics and materials they need, because people don't understand like, in college alone, yes, you have to buy for books. But then the fashion department, the school does not pay for the fabric, and all this stuff. That's expensive.  And looking back, I'm like, Thank goodness for my mother, cuz I'm like, I know I was in a nag. And I'm, like, you know she paid for anything I needed, you know, when buying the fabric and sewing machine. So I'm like, with this nonprofit, I would like to raise funds, you know, to distribute that to Framingham and the other universities that I will be working with, you know, so they can kind of purchase you know, their needs, because it really adds up,people dont know that?

 

Karen Ortman  25:32

I'm sure it does. I think it's a great initiative on your part.

 

Keisha Greaves  25:36

Yes, thank you.

 

Karen Ortman  25:37

Yeah. And, the clothing line that you have created, I think should be part of mainstream shopping, you know, it really needs to be out there for all at any time. So I applaud you.

 

Keisha Greaves  25:54

Oh, thank you.

 

Karen Ortman  25:55

What has living with muscular dystrophy taught you?

 

Keisha Greaves  26:00

Living with muscular dystrophy has definitely opened my eyes and made me realize, um, you never know what somebody's dealing with. Number one you just never ever know. Because like I said, Before, I was walking with a cane or anything like, you know, just looking at me. People want to know, even when I used to park in the handicapped spot, I used to get stared at and like, you know what, she's young? What are you doing parking there, and you know, mind your business, you don't know what I have going on. So I definitely realized you never know what someone's dealing with. I take each day at a time I tell everybody when I wake up, I don't know what this Muscular Dystrophy is going to do. I don't know if I'm going to be too tired to get up out of the bed. But sometimes that happens, my PCAs may come in, I'm like I'm exhausted. You know, I just need to stay in it. Could it just be like, I did some physical therapy because physical therapy can reroute our bodies sometimes. So it could be a matter of anything where I just My body feels exhausted. So I tell people, it's like, you never know what someone's dealing with. I don't know what my body's gonna feel like the next day. I can just hope I wake up with energy. And it's just kind of like, yeah, I just kind of take it one day at a time because I never know what the body's gonna do. Because I tell people I don't have control over this muscular dystrophy. This has control over me. and I'm just taking it one day at a time and that's the honest truth. And you know, I'm like I'm at a better place where I was before but I tell people I still have my days but continuing to connect with other people in the disability community has definitely helped. Another thing is like I say watch my TV shows and then just focus in on my business girls chronically Rock has definitely helped keeps me motivated. And when I get certain messages from like, people like you that want to interview me, I'm like, Oh, wow, they want to interview me. So it's like you know, little things like that. and you know you still doubt yourself. And you know, all that keeps me motivated when I get messages people like Oh, I love what you're doing. I love girls chronically rock. things like that definitely keeps me going and motivated and inspired.

 

Karen Ortman  27:49

You are an inspiration. And you have a story to tell and you have hope to give others. So I am really grateful to have met you had the opportunity to Oh, thank yu.

 

Keisha Greaves  28:02

tSame here. And I appreciate you asking me to be on your podcast.

 

Karen Ortman  28:05

Yeah, my pleasure. So what would you tell yourself- Keisha? What would you tell yourself after first being diagnosed, if you could go back in time? About your diagnosis that you have since learned and didn't know back then.

 

Keisha Greaves  28:30

Oh, I would say the only thing I can honestly say is, someone's telling me it's gonna be okay. Because that's like such a tough question because people sometimes ask me like, What do you tell somebody that's first diagnosed and I'm like, everyone deals with things so differently, cuz I'm like, the mindset I was I'm like, you couldn't tell me I had muscular dystrophy. Like I said, I was the doctor. Every time I went to the doctors, I was like, oh, yeah, she got the patient, you know, mixed up like she's crazy. I don't have muscular dystrophy. But then there's some people that are first diagnosed with like, say lupus Ms. And they start like a YouTube channel and they start blogging about it. And I I get so inspired by that, because I'm like, wow, like, You go girl, because I'm not natural. He was not me. Yeah, so I kind of say like, everyone deals with things so differently, but you know, if I have like, can go back, I can just tell myself like, it's going to be okay. That's the first thing that comes to my mind. And I'm a true believer. And everything happens for a reason. You know, especially with you know, now getting involved in the whole adaptive fashion. So those who thinks everything is going to be okay in everything happens for a reason.

 

Karen Ortman  29:33

you have a gift to share with others. And you are you are pursuing that and that's so admirable. yeah, I'm taking it day by day.  Is there anything I haven't asked you that you would like to share? O

 

Keisha Greaves  29:48

Oh , no, I think we went over pretty much everything. Yeah, cuz I talked about my nonprofit which I wanted to bring that up. So yeah.

 

Karen Ortman  29:56

okay. Well, once again, I thank you so much. And I enjoyed very much talking to you and you are really an inspiration to all of our listeners. And I applaud you.

 

Keisha Greaves  30:14

Thank you. I appreciate that.

 

Karen Ortman  30:16

Yeah, thank you so much. So thank you once again to my guest, Keisha and to all of our listeners for joining us for today's episode of You Matter if any information presented was triggering or disturbing, please feel free to contact the Wellness Exchange at 212-443-9999 or NYU's Department of Campus Safety and their Victim Services Unit at 212-998-2222. Please share, like, and subscribe to You Matter on Apple Podcasts, Google Podcasts,  Spotify, Stitcher, or Tune in.