Have Your Heaven Now: What Lupus Taught Me About Life » VSB

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Have Your Heaven Now: What Lupus Taught Me About Life

Alex Hardy

 

Lupus was part of my life story long before I gained firsthand experience as a young tenderoni. I’ve watched my mother battle the autoimmune disease for my entire life, and she had already dealt with the shit for 15 years before I entered the world.

Grandma says the first signs of impending fuckery (my words) came just as my mother was transitioning into womanhood. She once told me of how when they first noticed the molar rash (also called a “butterfly rash”) on my mother’s cheek at about 15 or 16, none of the doctors they saw in her hometown, Panama City, Panama, had seen it before. Doctors took a sample and sent it to “some hospital up in Washington, D.C.” for testing. And thus began my family’s tango with lupus.

By the time I was officially diagnosed at twenty, I was quite familiar with its often unpredictable nature, having seen it slowly rob my mother of her mobility over the last few decades. I have vivid memories of her chasing behind me on my Big Wheel in the courtyard of our old apartments back in downtown 1998, Virginia. We also used to go ride ponies at this random spot behind what used to be K-Mart on Mercury Boulevard.

Over the years, as lupus took its toll, she took to childcare, allowing her to work from home. For much of my childhood, I grew up alongside babies, kids, and tweens that kept our home life entertaining, and allowed a bunch of moms to have a safe, loving childcare provider who, above all, would make sure the chirren ate well, did their damn homework, and, when the time was right, if they weren’t prone to acting like a shitbag, were allowed to bask in the glow of my prodigious Super Nintendo ass-kicking abilities.

Lupus is the gift that keeps on giving, and as it causes your body to attack itself in all types of dastardly ways, one can rarely prepare for all of its horrors. There have been innumerable doctor’s appointments and deceptively calm calls from my Dad, occasionally the following day, because he didn’t want to worry me.

“Well, uh, we took Mom on into the ER yesterday,” he’ll say, minutes after casually debriefing with me about my week or some event.

And damage to this organ and that. But she’s still the brightest and most loving, selfless mom to ever mom, and your mother’s macaroni and cheese is flaming, Juneteenth-shindig-at-Sandra-Lee’s level garbaj compared to hers.

I’ve never handled her health scares or hospitalizations well. One time, a few years ago, I visited her in a hospital, wearing a mask so my brewing chest demons and nasty cough didn’t affect her. As always, she reassured me: “I’m fine.” She was, relatively. By the time I had arrived, the sepsis was under control, thanks to her proactive team of doctors and some mighty antibiotics. The worst of it had passed, they told me. Still, I fought behind the mask to keep it together in front of her. Grandma hugged me, and I eventually excused myself, went into the hallway, and sobbed like a motherfucker. Dad and Grandma came and scooped me up. Woosah.

Over the years, there were fewer and fewer kids around.

As a dancer, that loss of mobility is what I foresaw when that foot-faced doctor told me I had lupus as if she were telling me she liked my shoes.

Fade in:

INT. DOCTOR’S OFFICE – MORNTING

Nauseous, hot, reacting to intermittent leg cramps, and sore all over, ALEX is hunched forward in a chair being comforted by MOM. Her face is painted with worry. After brief pleasantries and confusion from Alex about the whereabouts of his regular doctor, DR. McFOOTFACE picks up Alex’s medical records, scans the first page, and turns to address them.

McFOOTFACE:

(Casually)

“Oh, I see you have lupus.”

 

Alex explodes into shrapnel and tears.

END

 

Four months prior, my older sister and I got tested for lupus at my mother’s recommendation. There is no single test for diagnosis; you must exhibit four of eleven symptoms (which come and go) simultaneously. I didn’t hear back and assumed I was fine. A few somebodies knew otherwise. May they suffer a life of vicious bedbug attacks, powerful ashiness, bad sex, and I-need-to-sneeze-but-can’t.

Sixteen hours prior, what felt like the flu progressed to vomiting up my childhood while in the middle of a double shift as a server at UNOs Chicago Grill, a night spent contending with leg cramps and gastric warfare, and an overall feeling of horribleness. And lots of tears.

I didn’t even eat dinner that night, so you know I was at least at a 8.23 on the Scale of Fuckedupness.

After she delivered the news, Dr. McFootface ordered a spinal tap, which is how I imagine getting a roadside hysterectomy with a chainsaw feels. I remember bracing myself and digging into my dad’s hands as they dug into my back with the Seattle Space Needle. I remember laughing with my friends later that evening, hours after I’d sent them a “Hey, heading to the hospital. Not feeling too well. Talk to u soon” text.

By the next morning, on Monday, April 25, 2005, I was in a coma. It took them a few days to grasp the full scale of what exactly the fuck was happening and how to proceed, but ultimately, I had fluid in my lungs, my heart was doing the absolute least, my kidneys were failing, and I had some lovely brain damage.

This was my first lupus flare.

Up until that day, if you asked me what I was going to be when I grow up, I would have told you that I was destined to be Janet Jackson’s choreographer, best friend, and off-season eating partner. Every time. I had just finished a semester at Tidewater Community College, was selling cell phones with some dude in a shop down by Buckroe Beach, was working out 4-5 days a week, was still dancing regularly with members of my then-dwindled dance company, and was coming out of one of the most fruitful Hoe Moments of my life.

While friends, family, folks from my parents’ church, classmates, ruckus-causing exes, and countless family friends prayed, cried, and fidgeted awkwardly, unsure of what to say about my bloated body over me, I did two rounds of dialysis, a round of chemo (cytoxan), and had some shit called plasmapheresis that involves them removing, treating, and replacing my plasma. Things were quite unjiggy.

Doctors told my parents three times during those uncertain weeks to consider making final arrangements, as a young homothug with four compromised major organs would not likely survive. And that if I did make it, I would certainly live with severe brain damage and a greatly diminished quality of life.

After juking my way out of death’s ashy-knuckled grasp, I spent that summer progressing from a wheelchair to a walker to a cane to walking unassisted, regaining the 25 pounds I lost that first month and being generally miserable. I developed carpal tunnel while in the hospital and, weeks after assuring my doctor who assured me the throbbing in my hand was merely “a reaction to all these new medications” that he was incorrect, had surgery to fix it after a few shots of cortisone failed to make a difference.

While hospitalized, I had to be restrained with straps in my bed after a string of violent, drug-induced post-coma rages. The resulting scars on my arm and on the bottom of my foot are daily reminders of a more fucked up time. The relentless suckiness gave me invaluable insight into my mother’s experience and brought us closer.

After finishing eight months of chemotherapy (one of the worst things I’ve ever had to do not involving a Q-tip in my dick), weening myself off of Prednisone, and beginning to feel like a human being again, my first priority was dance. I went back to the small studio in the ballet academy 30 minutes away in Virginia Beach to make magic with friends and former members of my dance company. A few nights a week, we’d piece together routines, perform old choreo from our past or favorite music videos and Janet moments as I slowly peeled away the rust.

This was my attempt to pick up where I had left off and continue working towards my dream of being the guy hired to show Missy and Janet and a disarmingly diverse cast of dancers in a GAP commercial how to move. “That’s good Jan. Now articulate those fingers like we talked about that time before we ate pizza and ice cream on Best Friend Night,” I would say. My homies and I had, at various times, each considered jetting to Los Angeles or New York to get things popping someday.

I packed all my shit into my beloved Altima, lovingly called Tima (like “Zima”), and moved to New York 14 months after my diagnosis, June 6, 2006 to start my journey towards Saint Damita Jo’s inner circle. We see how that’s gone for me, but here are a few of the 42 hundred dozen thousand things I’ve learned after not dying at 20.

One. Lupus taught me that I may not have that undefined five, ten or 15-ish years to lollygag, gain and lose weight, have babies, move, work soul-crushing jobs, and fuck around before thinking about possibly maybe preparing to getting serious about chasing my dreams. I went from thriving to barely surviving overnight. Then from comatose to a decade of following my curiosity around the country hunting down happiness. Lupus could return anytime. You could awake tomorrow and melt from overexposure to Flo Rida fandom. Do the damn shit while you can.

Two. I complain too much. After being diagnosed with lupus, chillaxing in a coma for a bit, and recovering in the hospital, I had to learn to walk again. My leg muscles atrophied and my dancer’s legs were less useful than a guest verse from Chingy in the 2000 and the 17. While dancing a hateful Harlem Shake with Prednisone, my bladder control went on strike at the worstest of times. The same steroid increased my already hyperactive appetite 21 thousandfold. It also gave me a lovely coat of acne that covered my face, neck, and chest. Those were problems.

Much closer to that time, as diagnosis and recovery were fresher in my mind, I remained more grateful for the little shit. I’m still glad to be here, but still have to reel myself in on occasion and remind myself how far I’ve come, how lupus affects people I love daily, how I likely wouldn’t be here if I weren’t physically active when diagnosed, how man troubles are one thing but heart trouble is another. Perspective.

Three. The fight to survive and fear about missing out on life because of lupus ignited an insatiable curiosity, a passion for exploration, and a love of taking leaps that led me to New York, Los Angeles, Panama, New Orleans, and back to Panama. I promised I would never let my fear trump my curiosity, “because you never know,” as I’d tell myself. I sometimes wonder if I would’ve taken the same leaps or if I would have been a safer person if lupus had never happened.

Four. Doctors are not infallible. Sure, doctors are trained and likely have a suffocating amount of debt to show for their expertise, but they’re far from perfect. We’re taught to defer to them and seek professional opinions before opening cans of sardines and beginning twerkout regimens, but even Dr. Love and Dr. Feelgood have poor judgment on occasion.

Five. It’s okay to be your own loudest advocate, especially when your health is concerned. During an appointment to check on my lupus, an eager new rheumatologist at Mount Sinai told me my lupus was still inactive but she still wanted to put me on a drug called Plaquenil (an antimalarial) as a preventative measure. It worked for people I know, but I was iffy about taking another medication indefinitely and concerned about its effect on my anxiety and mood. I voiced these concerns and Dr. Eager swept them away: “Oh no, I put everybody with lupus on this. You’ll be fine as long as you get your kidneys checked annually.” She even brought in another doctor to put me at ease and sell me on the drug. I started a few days later, convinced of its necessity, and had two of the worst panic attacks I’ve ever had that first week. Day two and day five. Occasional itching became a lovely rash that covered most of my torso. Dr. Fucknugget suggested I thug it out as these were likely temporary issues. I stopped 10 days in. This all would’ve been avoidable if I had listened to my gut and stuffed her in a trash compactor as planned. It’s okay to say “hell no” to a doctor.

Six. Prednisone is the devil.

Seven. Fuck regret. Contrary to what the dollar store prophets say, life is long as hell. It is the longest thing any of us will ever do. You owe it to yourself to enjoy it as much as possible before heading to that big rice and peas party in the sky. Your well intentioned-but-small-minded homies and kinfolk love you and can share enthusiasm for your dreams, but they can’t feel the sting of a missed opportunity or the hoarseness from a life of singing shoulda, coulda, wouldas like you will.

Live your motherfucking life and those who you disappoint will ultimately have to deal. Have your heaven now. Fuck an afterlife. Your ancestors didn’t tuck in their greatness in the presence of Miss Millie and the Gang for survival for you to be a scary, mediocre, ho-ass self-sabotaging sack of miserable unfulfillment.

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Alex Hardy

Alexander Hardy is the dance captain for Saint Damita Jo Jackson's Royal Army. He is a writer who escaped Hampton, Virginia and is now based in Panama City, Panama. There, he runs The Colored Boy, and consumes copious amounts of chicken. He has written for EBONY.com, CNN, Gawker, and Huffington Post among other outlets. Alexander can likely be found daydreaming about his next meal or Blacking It Up on someone's dance floor. He also doesn't believe in snow or Delaware. Read more from Alex at www.thecoloredboy.com

  • Chealynn Feaster

    Thank you for sharing your story. Can completely relate, interchange Crohn’s for Lupus. Prednisone is the devil, will never touch that stuff again. And this part here, “I promised I would never let my fear trump my curiosity…” I live by this because the unknown can’t be worse than fighting an awful debilitating crohnic disease.

    • Yes yes yes. That fear and uncertainty is NOTHING compared to the pain and misery of a chronic illness. Wishing you peace and strength. ?

  • I_AmU

    “Doctors are not infallible.. It’s okay to be your own loudest advocate, especially when your health is concerned”.

    These statements are the truth. They make the difference between the quality of care you receive which ultimately affects your overall health. Ideally when you’re ill you’d have someone whom you trust to advocate for you because you’re sick. Don’t hesitate to request a patient advocate if you’re in the ER or an inpatient. Nonetheless remember they are providing you a service. Some have a God complex, others don’t view you as an individual (case in point the rheumatologist Dr. Eager). The the most dangerous physicians figuratively don’t see you at all.

    Alex your way with words is phenomenal. Your journey has made you a fine tuned writing instrument.
    Continued Peace, Blessings and Hella Fun!

    • Thank you so much. I wish I had the same attitude about demanding second opinions or trusting myself much earlier in the game.

      • I_AmU

        Let that go so there’s more room for love. When know better you do better.

    • BeltwayMagnolia

      It also okay to “knuck if ya buck” with a medical professional. I suffer from an auto-immune disease and am losing waaay too many friends over misdiagnosed and preventable mess.

      I have had to switch doctors, challenge them on findings, REITERATE what is REALLY going on (and not what that THINK they heard me say), get 2nd and 3rd opinions, etc.

      Alex – you did a phenomenal job of putting your heart into words. I am doing exactly what you said, LIVING LIFE.

      • I_AmU

        Keep advocating for yourself and keep living your best life.
        I’m sending positive thoughts your way.

  • Man, bro. I see why you don’t suffer any mediocre macaroni now.

    • Life it is too short for bad comfort foods.

      • miss t-lee

        Way too short.

    • Michelle is my First Lady

      Today is National Mac and Cheese day :-)

      • It’s too hot to be baking macaroni.

        • Michelle is my First Lady

          Pick you up a bowl of mac and cheese

          • Naw. You got me wanting some for real, for real, like it might ruing a casserole pan, macaroni.

    • Exactly. Ain’t nobody got time to be miserable and upset about bad food.

  • NonyaB?

    Holy sh*t. Thanks for posting and keep slaying life!

  • Michele Gilliam

    Such a timely post. A young woman who goes to the church I grew up in was just involved in a motorcycle accident and apparently may be paralyzed from the waist down. She’s incredibly sweet, gregarious, academic- just an all around amazing person who was traveling the world and living her best life. Granted, she will still be all these things- regardless of her fate. However, while I was talking to my Mom the other day about the guilt I felt for going on vacation during a busy time during work, mama said “Girl, do everything you can while you can” and referenced the situation of the aforementioned young woman.

    Listen, we only get one life to live. So to you, Alex, keep living your best life in spite of the challenges your illness presents. You’re a blessing.

  • Janelle Doe

    Thanks for this, i know some people with lupus but had no idea. None. Mostly I jave sickle cell anemia experiences (it runs in the fam)
    Thanks for always teaching me something through your posts Alex!
    *Unrelated, will you be organizing the dance routines for that VSB bbq we fittin to have ? :-)

    • LMNOP

      I know a few people who have lupus too, and I also had no idea.

    • MakesMeWannaShoopShoopShoop

      Sickle cell runs in my family and more and more I am thinking I may need to “confirm” whether or not I have the trait

      • cdj

        Do it. It runs in our family too (my mom and her 7 siblings were part of a case study back in the day). My dad got us tested when we were teenagers. Simple blood test. I don’t know how much it cost. I have the trait, my brother does not. My son does have it; they test newborns for it automatically.

    • Thanks for reading. And yes, I’m arranging and teaching the line dances.

  • Love Heals

    Alex, I’ve been on and returned to this site an inordinate amount of time today but I’m here because I feel compelled to respond to your post. Thank you for your awesomeness, courage, faith, fortitude, wisdom, humor, honesty and generosity. I wish you continued success, good health and longevity, blessings, fulfillment and love. Number Seven! Powerful and bittersweet for me. It’s full of truth and I’m finally beginning this journey because my life has become a cautionary tale of what happens when one sacrifices oneself to the mandates of parents, religion, parents, society, parents, culture, etc. and parents. Despite knowing that you obviously survived all that befell you in the above account, I was (and am) jubilant about each success. I’ve read your work here and at thecoloredboy.com and I’m so grateful to The Divine- including emissaries such as the ancestors, angels, and the universe – that you’re dancing and eating and writing with purpose and joy. It’s apparent your exuberance informs what you do and how you be. My mother has lupus and I can relate to the fear and pain that permeates the whole family. I witnessed her suffering. She’s taken plaquenil. I’ve seen her bloated from prednisone, I remember learning in childhood that pulmonary edema meant “fluid in the lungs”. At age 17 my father decided I was callous because I was such a basketcase during this relapse I couldn’t go to the hospital. Unfortunately, like my father, she’s emotionally/verbally abusive. I endure(d) it because I’ve always been aware that she could go at any moment-something she often referenced and the guilt I’d have for “grudge bearing”. Didn’t want to bare this gaping wound in this manner, but out of respect for what you’ve shared I know I must be honest. Sorry for the length. My siblings and I are maintaining varying degrees of distance so as to heal. (This is complicated and compromised by the worries since they’re now old.) After a long while of sporadic calls, I went to the house two days ago. Things devolved quickly and I left kicking myself. I’ve got to stay away to preserve my health, dramatic as it me sound. I have the dubious distinction of being the person she said gave her lupus. She was diagnosed in my infancy. She first said it in my early twenties and reiterated it a number of times since. I’ve argued with her to the contrary to mask the horror and my ( maybe) irrational guilt and shame. Even the word, “lupus” causes me pain. This year has been a panic-ridden belated awakening to the truth of your #7 instructions. Su/Tu mensaje esta lleno de bendiciones para mi. Estoy muy agradecida.

  • Sheryl

    Love this! I faced a life and death situation and realized that life is to be enjoyed and lived. There is no perfect ending.

    “Begin doing what you want to do now. We are not living in eternity. We have only this moment, sparkling like a star in our hand and melting like a snowflake.”

    ? Francis Bacon,

  • Bernard Galeano

    I’m not entirely sure I have all the words to fully express how much I loved this article.

  • MsSula

    “my dancer’s legs were less useful than a guest verse from Chingy in the 2000 and the 17”

    You are so gifted with words Alex, it’s crazy. Thanks you for sharing your experience and reminding us that nothing in life is granted.

    • siante

      flawless chingy shade

      • MsSula

        Perfectly executed.

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