Per The Mayo Clinic: Lupus is a disease that occurs when your body's immune system attacks your own tissues and organs (autoimmune disease). Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs. Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus — a facial rash that resembles the wings of a butterfly unfolding across both cheeks — occurs in many but not all cases of lupus. Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs, or even sunlight. While there's no cure for lupus, treatments can help control symptoms.
Today marks the 8th annual Willie Colon Golf Outing. Every year the LRA (Lupus Research Alliance), partnered with the Willie Colon Foundation, puts together a glorious and exciting outing with one goal in mind: raising money to send this god-awful disease back to hell where it belongs. It’s all about finding a cure. Now, I hated golf, can't stand it to be honest. But as of this past Saturday, I'm ready to compete for the PGA tour. Golf is awesome. What's with the sudden change of heart? I crushed the ball a couple of times and it felt pretty bad ass. I did hit bad shots, but I was able to correct myself and now my fickle ass is all about golf. I owe my beautiful wife a big thank you. She bought me some golf lessons for Father's Day last year. Back in 2014, when I was rocking the green and white for Rex Ryan's New York Jets, Woody Johnson, the owner of the New York Jets, had great disdain for Lupus just like me. A close family member of his also suffered from the ratchet disease. Lupus and I have a very complex and dark relationship. Let’s talk about it.
Sending your child off to college can be an emotional and exciting time. Parents spend day and night packing and loading up the cars and boxes with necessities, large plastic barrels of cheese balls from Costco, detergent, old teddy bears, and crusty sweatshirts. They throw in high school football jerseys, video game systems, dad’s flasks, and family vacay pictures placed firmly in duffle bags riddled with enough shit to supply a small town in Colombia. Graduation money smashed into bibles like a hot pastrami on rye, with notes of words that can only be said on paper from an introvert sibling. Mom and Dad’s soft whisper of "I love you" with sincere eyes of gratitude met with the “look” that all kid's know very well "Behave Yourself!" Oh, btw, that high school sweetheart you vowed your undying heart to, Fuck’em! They won't matter. Eyes forward and focused on a new chapter as new friends harken for your arrival. Enemies nor childhood friends will stand a chance against reality and purpose.
It’s a warm August morning in the South Bronx, my older sister Joy was finally getting her chance to get the fuck out. I’m from Melrose Projects, 156th Street between Morris and Cortland to be exact. Brown brick buildings, crinkled face crackheads and broken English is our norm. Waves of violence, cold stares and lost dreams are branded on familiar faces. Today we are sending my sister off to SUNY-Fredonia. Joy is thirteen years older than me. Joy leaving was difficult, she was like a second mother to my brother Antonio and me. Mom and Dad worked, Joy fed us, washed us up before bedtime and watched wrestling with us. She spanked us if needed, protected us and educated us. She endured our neighborhood fights with kids to awkward crushes we had on girls. Watching her leave made me feel empty. Momma had to work, Dad gotta go get it and Antonio is still putting his t-shirt and underwear on backwards. I can’t cook, who’s going to stop me from making chocolate milk at 10 o'clock at night. I'm only 7-years old. Knicks, Sega Genesis and cute girls are all I cared about. Joy helped me with my homework, she pushed me to read more and helped me with my writing. Where the fuck does she think she’s going?? This is the first time I feel happy and sad all at the same time. But she deserves to be happy, Joy’s dope.
My brother and I load up the car with stuff that only he and I were strong enough to carry. My father takes on the task of carrying the heavy shit. We all do our part, as we walk out of our building with everything in our hands from Kotex to a television. My mom, like most moms on this day, is conflicted. She was holding back tears of joy while trying to slap my brother and me upside the head for fooling around. We make our way down the stairs towards the car, you can hear frantic cheers from the windows of longtime family friends to neighborhood dope boys sporadically yelling, "Goodbye! We are gonna miss you!"
Pride and excitement is in the air, the feeling of saying goodbye is hard for me. My mom is making her way down the stairs with my father on her heels. He's also carrying a huge trunk own his shoulders. After I do my part and throw my sister's belongings in the car, I run back to my mom to help her with the stuff she has in her hand.
JEAN, JEAN JEAN…
My mom is having a stroke. I watched as she took her final step down the stairs. She stumbled forward gripping the fence to the right of her. She folded over and started to shake. My father drops the trunk and runs to my mom. I reach for my mom but something's wrong. I can hear my dad's voice fill up with fear. She’s not responding. Joy runs up the stairs to one of the neighbor's apartments as she rushes to call 911. My first floor neighbor rushes outside to help my dad. The doors to our car are wide open with everything with we packed in the back, Antonio is crying and so am I. Dad scoops my mom up as she goes in and out, my sister screams out of my neighbor's window, “The paramedics will be here in 5 min, they are close by!”.
In the black culture, when life-changing events happen and there is no rhyme or reason on why such an event can possibly happen to good people, it’s ingrained in us to always lean on our faith. We say, "God doesn't make mistakes. He’s perfect." Bullshit! He’s making a huge fucking mistake. I’m a 7-year-old kid, standing between WTF (What The Fuck) and a soul-crippling break down. I’m standing there thinking how in the hell am I about to lose both my moms. How? And where the fuck is God? What the fuck is the point of all the Hail Marys and communion, repenting your sins, giving to the needy, lead with love and walk in faith, not fear.
It’s a warm summer afternoon and I’m COLD. I don't care about a fucking thing or anybody. I just want my mom.
Lupus in the ’80s and early ’90s wasn’t identified. My mother spent a year in the hospital after that. At first, they called it cancer and they couldn't figure out what type. As a family, we didn't know how to pick ourselves up. She was our Queen Bee! After time and much testing and several wrong diagnoses, they finally diagnosed her with Renal Lupus Nephritis. It’s vicious, look it up!
Joy eventually went off to school, dad worked double time and my Auntie Joan, my mother's twin sister, moved in with us. We got back on our feet as a family and, by God’s grace, my mom made it back to us. She wasn’t the same. The stroke she suffered left her paralyzed in her left leg, she lost her hair and her skin was a mess from the flare-ups she suffered in the hospital. My mom battled Lupus for 32 years. She fought lupus with every inch of her body. The fatigue, sleepless nights, body aches, weight gain, dialysis 3 times a week, her nightstand covered with pill bottles to help stay upright. But she never stopped fighting.
July 15th, 2020, Mom lost her battle to lupus and went home. However, lupus is still here. With the proper medication, testing and new-age treatment, doctors all around the world are fighting to make it possible for people to live with the disease. My annual golf outing is more than just a good time for me. Every man and woman that’s a part of the LRA is affected by lupus in some form or way. Our mission is to find a cure for this disease and never forget the lupus warriors we lost along the way.