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Accepting the 'New Normal' in Life With Muscular Dystrophy

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You’d be surprised what you take for granted. Those things you don’t even think of but are naturally a part of life. In elementary school, I spent afternoons 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. I found my second home at Framingham State University where I spent my days in fashion and merchandising classes, sewing pieces for the runways, 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 and made our way to parties and events.

Keisha as a young child, wearing sunglasses and sitting on a couch

I loved to sew, modeling my designs from the liked of Kimora Lee Simmons and Betsey Johnson — my favorites. I’d always been recognized for my style, a casual yet chic mix, often times pairing a creative tee with a blazer or strutting with an eye-popping dress.

I’d be living my life on my terms and I was loving it. I was Keisha Greaves: agile, loving, creative daughter, sister, and friend. Born and raised in Cambridge, Massachusetts, I felt tied to home as I continued into college. My beloved university sat just 30 minutes outside my home town and after graduation, I found myself back there once again 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, traveling 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’d love to do, and the flexibility allowed me time to still 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 myself. As I sat on the cold grocery ground, I recounted that my legs had seemed to have left the rest of me. They just gave out and gave up on holding me. It felt like they’d betrayed me, and it seemed that the rest of my body was upset about it. It became dead weight. I couldn’t lift myself. I needed two others to help bring me to my feet.

I chalked it up to needing to lose weight and did my best to brush it off. 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. Reaching for snacks in my kitchen cabinet became difficult. When exercising, lifting my right arm felt like I was fighting against a ton of weights pushing it 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 the same: sit on the table and raise your leg. Both times, I couldn’t. They had to help lift it up for me. 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 react (and I had to do that one 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 muscular biopsy. It was a surgery that I was wide awake for. On my back on the cold operating room, they injected my leg with anesthesia. I made sure not to move as they sliced open my right leg 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 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 (MD); limb-girdle muscular dystrophy (LGMD) to be exact. The phone call lasted on 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 impacts the body from the shoulders down to the legs. I learned that most of the folks with muscular dystrophy are males and they usually are diagnosed as a baby 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 personal, 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 from most.

My immediate family 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 weight 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. If my legs hurt or felt weak, I’d make up some terrible excuse and would stay at home. 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. 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 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 understand my limitations first-hand. My circle 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 disabilities 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 limb girdle muscular dystrophy 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 wake 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 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 OK. 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 MD 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 support of my family keeps me going.

To anyone reading this, I want to remind you to never underestimate the power of your desire. If you want to do anything badly enough, you can. Every day, 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.

Originally published: May 17, 2023
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