Keisha Greaves: Disability Does Not Define Me

1. How did you find out you have Limb-Girdle Muscular Dystrophy?  

I started to get symptoms back in 2009 while in graduate school. I began to repeatedly fall, and my leg would just give out on me without notice. I would fall to the ground and not be able to pick myself back up; I would need assistance from someone to lift me up.  

I also began noticing when I tried to reach for certain things in the kitchen cabinets or try to exercise, I was unable to lift my right arm up all the way. I kind of just thought to myself maybe I need to go on a diet and lose weight, but in the back of my mind, I knew it was something more. 

I went to see an orthopedic, but I was told that this was more of a neuro-muscular issue, so, I then went to see a Neurologist. Once I saw the Neurologist, she then tested me and gave me muscle biopsy, MRI, an EMG, and every other test you can think of. So, after multiple tests, I was finally diagnosed with Limb-Girdle Muscular Dystrophy.  

2. What is Limb-Girdle Muscular Dystrophy?  

Limb-Girdle is a form of MD that affects the limb of the shoulders all the way down to the legs, which progressively over time eventually gets worse. 

3. What was your reaction after you find out?  

The first thing I thought was how long am I going to live will I be in a wheelchair soon, and what is my life going to be like from now on. I knew I had to be strong and continue to do what I have to do so I started doing some research on it and read what eating healthy and exercising would help. I joined weight watchers with my cousin, and I lost over 36 pounds and I felt great. I’ve been able to keep half the weight still off, and I am still determined to lose more.  

4. What does a typical day living with LGMD look like?  

Living with Limb-Girdle Muscular dystrophy is still new to me every day. I wake up every day not knowing how my legs are going to feel or what pain I may have when leaving my house. I try to be very careful when walking because I don’t want to fall, and am not able to pick myself back up. Although I am on my feet a lot for work, after a certain number of hours, my legs start to weaken.  

5. Can you tell us about Girls Chronically Rock?  

I started Girls Chronically Rock in 2017. I designed graphic t-shirts and other items that are meant to inspire and motivate people battling chronic conditions. I want the Girls Chronically Rock brand to be bigger than an online t-shirt store. I am building a movement with the goal of creating an EMPIRE! My hope is to be able to collaborate on an adaptive clothing line with Tommy Hilfiger and to make a Girls Chronically Rock clothing line available in stores like Target and Macy’s. 

6. If you have one piece of advice for someone with LGMD what would it be?  

Living with MD has made me realize how strong and capable I am. Although my MD continues to progress, I try to accept things as they come and adjust my life accordingly. For example, I recently began using a cane full-time to help me with balance and hopefully help prevent falls. Although it’s definitely hard and not the life I once imagined, I do my best every day to live it to the fullest, the best I can, and encourage others to do the same. 

Never, ever underestimate the power of your desire. If you want to live badly enough, you can live. The greater question, at least for me was: How do I decide I want to live? That is the question I’m still working on?”