My Life With Muscular Dystrophy

All Falls Down (Even Me)

“I’m sorry,” the doctor said as he welcomed me to life with muscular dystrophy. “Your muscles are wasting. Your legs are going and once they stop working, you’ll never walk again.”

my life with muscular dystrophyThose were the words used to introduce me to myotonic muscular dystrophy (MMD), the second most common muscular dystrophy. (There’s 30 different ones – yikes!) The office – sterile. The doctor – direct. The diagnosis – cruel. A series of falls led me to the doctor’s office that day. The long unspoken, hidden history of muscular dystrophy on my mom’s side of the family had b*tch slapped me in the prime of my life. What followed would become a years-long odyssey through denial, disappointment and eventually rediscovery.

Muscular dystrophy isn’t one of society’s sexier medical conditions. It doesn’t get the NFL halftime tributes like breast cancer nor does it have an A-list actor like Michael J. Fox to front the movement. The best we’ve gotten is Jerry Lewis wheeling out kids in wheelchairs on national TV for Labor Day. Who watches a telethon on Labor Day? I’d rather have beer and barbecue! Nonetheless, 1 in 8,000 will face the same road as I have. It’s not all roses but it’s also, contrary to my diagnosing doctor’s assessment, not an indication that life is over.

When Denial Goes Wrong

ministry all racesAs a Christian, I was always taught that Jesus Christ heals so I tucked the diagnosis away like a dirty secret and re-embarked on my music career journey. “Why on earth would Christ let me be a cripple?” I reasoned as I limped through stage performances and DJ gigs. I figured the doctors were wrong. I was on the verge of signing a record deal and had at least a half dozen other music deals that allowed me to do music full time. There was no way, I was going to end up in a wheelchair. Despite a rapid progression that placed a cane in my hand a few weeks later, I continued to perform until the dreadful gig that tempered my denial. While walking onstage at Party on the Plaza, I fell face first in front of thousands of spectators. The crowd gasped in horror. I was helped up and managed to perform but that night I cried. I also continued to refuse the doctors’ orders to begin living in a wheelchair. Finally, my mother stepped in and insisted that I use a chair. I could no longer deny the obvious. My legs no longer worked.

Hide & Seek

11178263 821095694594913 5221539238735236016 n“We can’t tell anybody,” my manager advised. “No one will sign you if they find out.”

I knew she was right. A wheelchair is the ultimate buzzkill in music. The blind are sometimes celebrated, the deaf occasionally applauded but wheelchair users aren’t easy on the eyes so I was propped up or leaned against things to provide the illusion that I was able-bodied. Unfortunately, I couldn’t hide it at my live performances. The man who financed my music career ascertained I’d never compete against Beyonce so he yanked my funding and offered me a part-time desk job to support myself. All of my bookings were subsequently canceled and I was relegated to music’s bargain basement – gospel music.

For eight years I labored in gospel as a second tier singer, often traveling and singing without any compensation. I was an “inspiration” which incidentally, doesn’t pay much. I loved serving God and his people and touring really proved how far anyone can push their physical limitations if they believe and try. That’s what I did. I tried my best, met a lot of people and ended up on BET Sunday Best. I always sang my heart out no matter what and I pushed hard for a break in gospel music – so hard that I was hospitalized.

“You can’t continue like this,” my mother lectured from my hospital bedside. “Find something else to do in music.”

My mother was right. Religion had attempted to convince me that I was something I wasn’t – a professional gospel singer. What if I could reach people outside of church or just love people in whatever genre would put me to work? Why did I need to pursue celebrity to bless people and be blessed? That’s a part of seeking and searching when facing life with muscular dystrophy – sometimes you go down roads because you want so badly to belong somewhere, to someone. So I forged out into music again unsure where I’d end up. I figured trying something new couldn’t hurt. What did I have to lose?

What If vs. What Is

my life with muscular dystrophyIn 2018, I switched from singer to songwriter and to my surprise was offered opportunities to write and sing on records from across the globe. From hooks to soundtracks and background vocals, I now serve as an unseen voice on demos that are reworked into club remixes and label releases.  I’ve written songs for rappers and house anthems for drag queens. I’ve logged sessions with rock bands, jazz artists & folk duos. The best part is I’m still doing music (and ministry) – just differently!

There will always be people who remind me of my shortcomings like the man who stopped me in Ikea and proclaimed, “I always thought you would become famous not a paraplegic.”

“Gee thanks,” I thought as I laughed off his awkward comment.

That’s life. I don’t dwell on what if. I deal with what is. My what is includes a customized van, six wheelchairs, a recording studio and the best smile I can conjure even if it is to hide the tears somedays. That ain’t bad! I’ve learned patience, fearlessness and empathy. There are so many people in my situation who aren’t as fortunate to live the quality of life I am blessed to live. I love my life! Nothing’s stopping me from living a fulfilling, independent life – not even muscular dystrophy. The only person capable of stopping me is me! Everyday I choose to reach.

And yes – I still believe in miracles. 

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