Living with LGMD

 By: Keisha Greaves

You’d be surprised what you take for granted. Those things you don’t even think of but are naturally a part of life. Like now, in COVID times, when we aren’t allowed to hug, or even see, our friends. 

My feet were planted on the low-cut grass in the outfield, my usual spot. A girl from the opposing team took her stance at bat. She squatted and furred her brow with focus. When the pitcher released, her bat met the ball with a powerful smack. It whizzed far to a place where I knew I could reach it. I squinted my eyes and leapt toward the ball, making the best (and only) catch I’d gotten all season. “OUT!” My fellow teammates cheered in excitement as I smiled from ear to ear. It was time for our turn at bat.

Afternoons in elementary school were spent this way, on the softball field swinging my bat and gleefully whizzing from base to base until I stole home. Stealing bases turned into stealing glances at crushes as I ran between floors for classes at my rather large high school. Before I knew it, I found my second home at Framingham State University where I spent my days in fashion and merchandising classes, sewing bold pieces for the runways (leather polka-dot blazer combos and tulle lined mini-dresses are some of my favorites), planning Fashion Club events and making tons of friends a long the way, especially in Black Student Union. My nights were equally eventful as my girls and I got dressed up to Beyoncé blasting in the background and made our way to parties and events.

I loved to sew, modelling my designs from the likes of Kimora Lee Simmons and Betsey Johnson – my favorites. My admiration for Kimora came during the peak of the Baby Phat age. Her line was of bejeweled and her clothing was embroidered with her signature Siamese cat logo – often in gold. I loved that she was a boss that had it all. She managed her business and clothing line and never tried to hide the fact that she was a mother. Betsey was the funky that I needed in my life. Her style was bold and unexpected. I adored her for her layered prints and the creativity that embodied her inner child. I’d always been recognized for my style, a casual yet chic mix, and in part, I owe it to those two. I adapted my looks in my own ways, often times pairing a creative tee with a blazer or strutting around campus with an eye-popping, eighties-inspired dress, extra tulle with a dash of cheetah print. 

I was living my life on my terms and loving it. I was Keisha Greaves: agile, loving, creative daughter, sister and friend.

After college graduation, I found myself back in my home town of Cambridge, Massachusetts to earn my MBA. While in school, I put my bachelor’s degree in Fashion Merchandising to work. I was an independent merchandiser for a company, travelling from store to store to ensure that brands were represented accurately in their respective places in department stores and boutiques. Having this job was a dream come true. It was something I loved to do, and the flexibility allowed me time to make it to my classes and study for my second degree.

One day, I’d been walking around the supermarket with my mother and sister. We’d been chatting and shopping, basking in the quality time of the necessary task, when out of nowhere I tumbled onto the floor. It took everyone by surprise, including me. As I sat on the cold grocery ground, my legs seemed to have left the rest of me. It felt like they’d betrayed me, and the rest of my body was upset about it. I became dead weight. I couldn’t lift myself. It was the most confusing experience I’d ever known. My mind told my limbs to do something that they just wouldn’t do. I needed my mom and sister to help bring me to my feet. 

I chalked it up to needing to lose weight and did my best to brush it off. I was sure that was the issue. Until it happened again, and again and again. My legs felt weak and I was always on edge that I would be on the ground without warning or my consent. Then, my arms followed suit. I remember lifting my arms to reach for a snack in the kitchen cabinet. That feeling of perplexity and frustration from the grocery store returned as I struggled to make my hand meet the box. Then it happened during my regular exercise time, too. I popped in my “Walk Away the Pounds” DVD. Following Leslie Sansone to step up, step down, slide, then – I couldn’t reach. I couldn’t understand it. I felt like I was fighting against a ton of weight pushing my arm back down. Something wasn’t right. My mom and I agreed that I should go see a doctor.

We made an appointment. And then another. They both asked me to do the same: sit on the table and raise your leg. Both times, I couldn’t. I still told myself that I just needed to lose weight, but the looks of concern on their faces as they lifted my leg for me made me worry. After seeing an orthopedist, I saw a neurologist and then the real work began: testing (and a lot of it!). The EMG required sticking a needle in my legs and moving them about the muscles to see how they reacted (and I had to do that not once but twice!). I was asked to keep still and calm as I was pushed into a tight tube for my MRI. The EKG had me hooked up to a bunch of pads and wires. The entire process was draining and uncomfortable, but the biggest test confirmed my diagnosis: the muscle biopsy. It was a surgery that I was wide awake for. On my back on the cold operating room, they injected my right leg with anesthesia. I made sure not to move as they sliced it open and extracted a chunk of my muscle. It was weird to be awake during this time. If it hadn’t hurt so much, I probably would have tried to reach out and touch the muscle sample as they prepared it for diagnostics. They closed everything up, gave me a pair of crutches and sent me on my way.

I thought I’d be going to class that evening, like usual, but the pain and grogginess of the surgery proved otherwise. I was bummed to have to share the process with my teacher; before I did, none of this had seemed real. But it was certainly becoming all too real.

About a week later, I got a phone call that would change my life as I knew it. Dr. Wang’s voice was firm. She declared that I had muscular dystrophy; Limb-Girdle Muscular Dystrophy (LGMD) to be exact. The phone call lasted a couple of minutes. She’d share more about it when we met next in person.

 I hung up and rushed to Google. I had to know what this was, what it meant and what on earth would I do. I learned that this particular type of muscular dystrophy impacts the body from the shoulders down to the legs. I learned that most of the folks with muscular dystrophy are males and are usually diagnosed as babies or during adolescence. I learned that it’s progressive and that there is no cure.

I was in a mix of disbelief and confusion. “How long am I going to live?” I questioned. “Will I have to be in a wheelchair?” I wondered. I shook my head “What if she’s wrong? This can’t be my life. It has to be something else,” I finally decided.

I began to shut everyone out – sinking into my new reality and the onslaught of feelings that came with it. I was a very private person, keeping most things to myself and only displaying a bubbly personality with lots of laughter. I didn’t feel much like laughing now, so I buried myself away.

My immediate family members were my support. I’d read that a healthy diet and exercise could help keep my new situation at bay so my cousin and I joined Weight Watchers. I spent time with my mother and sister. My mom accompanied me to doctor’s appointments. I made it to class, sometimes on my own, other times with a cane. I continued to work as a merchandiser, as long as I was able. I lost 36 pounds and I felt like I would be able to somehow conquer this thing!

I only realize now that I was still in denial about it for a few years after I received that phone call. I thought I could diet and exercise it away, ignoring the reality that it was a progressive and all-encompassing disease. Though I walked with a cane many days, whenever I had an important meeting or interview, I’d tell the manager I’d recently sprained my ankle or had gotten into a car accident. I never wanted to verbally acknowledge what was happening.

I confided in a close friend about what I was experiencing. He encouraged me to let the cat out of the bag. Hesitantly, I opened up my laptop and just started spilling out my thoughts onto a page. It wasn’t until I was stroking the keys non-stop that the truth finally set in my heart. “Wow, I have muscular dystrophy,” I thought. Then, I said it to myself. “I have muscular dystrophy.”  It was like a weight was lifted from my mind. 

I read what I wrote back to myself and with the new acceptance of truth, I thought maybe it was time to share it with the world.

 “…I told my employer that I have muscular dystrophy last year and it took a weight off my shoulder to be honest with my boss. I feel so relieved. My condition has progressed since then. I am regularly tired, need the use of a cane, still have issues walking and not getting tired and occasionally need a wheelchair. You don’t know how it feels until it happens to you. I often feel like it controls my life….”

I posted it on my Tumblr page and shared the post on Facebook where all my friends, family and acquaintances would learn about the secret that I’d been holding onto for years. They read my post and supported me with tons of positive feedback and “thank yous” for finally sharing my experience.

It felt warm. My family – my blood relatives and my Facebook family – continued to be a light and check on me as the symptoms progressed. It was really nice, but after a while I started to feel like they really didn’t get it. They didn’t know what it was like to fall constantly or not be certain if you can even move day by day. They didn’t realize that I had to call ahead to go to the club at night, to ensure that they had a functioning elevator so that I could make my way up to groove to the music. 

I started reaching out to others in the disability community via social media and began cultivating a new sense of family. Others who “got it”. It felt like I was finally understood and even better, that I was not alone. 

Now, five years later, I only know that I have LGMD. The doctors can’t put their fingers on what subtype yet, but they know that at some point this thing could affect my heart. Echo-cardiogram tests are pretty regular for me, to let them know that my heart is still in working order. It’s certainly scary but it has become “my normal”.

Living with LGMD is still new to me. Every day, I wake up not knowing how my legs are going to feel or if I’ll feel them at all. I don’t know what pain I’ll have as I try to leave my apartment. I walk gingerly, hoping not to fall, afraid that I won’t be able to pick myself back up. It’s made me realize my internal strength despite the weakening of my limbs. I didn’t think I would have so much strength to continue on after my diagnosis in my early twenties, but I somehow figured it out – and flipped it into a motivating organization. I had the power of resilience and positivity. If I didn’t have it before, I developed a strong sense of empathy, really understanding that people everywhere struggle with things that the outside world cannot see. I was one of them.

I look back and feel like I took things for granted: stealing bases on the softball field, running up and down the stairs with friends in high school, sewing my one-of-a-kind designs to strut around in and dress my models. But there’s no way I could have known. My new normal doesn’t include any of that. Instead, it includes a lot of time with my Personal Care Assistant (PCA) who helps me get in and out of bed, the shower and around town. It includes plenty of trips to the doctor and physical therapy. And sometimes, lots of stares from people wondering what a young millennial is doing walking around town with a limp and a cane. 

That’s all okay. My new life is my life. I’ve accepted my new normal. I’ve regained my bubbly personality and have become a source of positivity and support for others in the disabled and diseased community through my organization and clothing line, Girls Chronically Rock. My smile has returned, knowing that I am still fulfilling my dreams. My path looks a little different than I envisioned but I am happy. I still hang out with friends at bars and restaurants and enjoy my favorite foods and reality TV. I have no problem belting out my favorite Beyoncé songs. I am a business owner who loves the work that I do. I’m happy. I’m loved. I’m whole. I won’t take where I’ve come for granted. Not one bit!

 There’s no cure or pill that will fix it. My muscular dystrophy isn’t going anywhere. It has its way of controlling some of my life, but it isn’t who I am. I’m still Keisha Greaves: loving, creative daughter, sister and friend. I’ve even gained a few more titles: graduate, survivor, entrepreneur, speaker and advocate. This didn’t take my life, it gave me purpose behind all that I do. Pressing on after my diagnosis is the hardest thing I’ve ever done, but I’m much stronger for doing it. My will and the support of my family keep me going.

 In a way, I guess that’s how everyone is experiencing life right about now. As I’m writing this, no cure or vaccine for COVID has been created, and when I flip between the news stations, it seems that it isn’t going anywhere anytime soon either. It does, similarly, have its way of controlling our lives – mandatory stay-at-home orders, masks and other protective equipment, forced distance between family and friends and then some. Post-pandemic, we’ll all have gained some new talents, skills and titles – becoming a little bit more survivor and superhero. My advice is to allow it to give you purpose and set your true priorities into perspective. This might be the hardest thing we have ever done, collectively, but how we support each other is what will keep us going.

I want to remind you to never underestimate the power of your desire. If you want to do anything badly enough, you can. Everyday, I ask myself  “How do I decide I want to live?” My PCA helps me from my bed, gets me ready for the day then I conquer it, with a smile. That’s how I choose to live now, each and every day.

Keisha Greaves is a business executive, fashion designer and activist and the founder of Girls Chronically Rock. She is living with Limb-Girdle Muscular Dystrophy, diagnosed 5 years ago when she was 24.

Watch Keisha tell her story live here

Photo credit: Sarepta Team, with permission from Keisha Greaves