Lupus?! A wha dat?!

Just another emcee who gets free. Vessel of philanthropic vision fueled by theophilic purpose.

Month: February, 2013

No reduction observed in lupus flares following hydroxychloroquine adjustment

No reduction observed in lupus flares following hydroxychloroquine adjustment

The Diagnosis

Every year brings reminders of life’s significance. College reunions, anniversaries, milestone birthdays and the like. As February approached my wife and I counted down and remembered where we were this time last year. The details in what remains the most difficult month of our short life together thus far. When we almost lost it all.

I remember that Saturday morning. Finally out of the hospital and armed with a diagnosis. My rheumatologist told me the previous day that what I was going through was in fact lupus. I’ll never forget his optimism as he told me that this was the best time in human history to have the disease. Medical advances had made it quite possible to lead a happy life in spite of the condition. To this day he remains one of the best deliverers of bad news I have ever met.

His optimism gave me hope. I wanted to call everyone I knew. The high dose of prednisone made me feel like I could call everyone. I don’t really know what stopped me from doing this but I planned on calling everyone in my phone’s directory. Credit card companies and pizza delivery places included.

I made the rounds of calling my loved ones and giving them the news. My optimism quickly faded into sadness as I realized they did not share the joy I had in knowing what it was. I approached each phone call with the same enthusiasm one would have upon receiving admittance into a prestigious school. Their silence or tears made me feel like I had dropped a bomb on their lives. I tried to draw inspiration from Magic Johnson’s press conference when he told the world he had HIV. In the face of what was perceived as a death sentence, he had the courage to encourage those who cared about him and to still hope. I wanted to do the same thing. 

It was exhausting. I didn’t know what the next steps were. 

Between Two Worlds…The Good Life


My best friend died on the 23rd of December. I’d just got off the road with my wife, home for the holidays.

I was going to make a joke, someway of announcing my presence. Part goofing, part holiday cheer. I walked in and found her sleeping. My aunt told me that she had dialysis earlier in the day and was not feeling well.

No worries, I thought, I’ll just wake her in the morning.

I was doing my best to be upset with my wife. We had a mild argument earlier and I was holding on to my indignation. Trying to maintain silent treatment even when I knew she was burying the hatchet. Then I heard my mom call me to come downstairs. Her voice was alarmed but steady.

I came downstairs to find my aunt standing over my grandmother’s bed. She was blue. They had called the paramedics already but it was clearly too late. I didn’t feel like there was any point to praying. Not that resurrection of the dead is beyond the realm of possibility with an unencumbered God. But it felt selfish. Like such prayers were more for the giver than the subject. I even believe that she had finally gotten her desire. Rest.

I didn’t know what to do. I wanted to kiss her, say something meaningful but all I could do was watch her. Watch as the EMTs went through the motions, watching even after she was pronounced dead, unable to believe that any of this was real. Certain that I saw her chest rise. Uncertain of where we went from here.

I couldn’t do anything all week. Nothing mattered. I was vaguely thankful that her pain was over, routinely gracious to God that she went home peacefully.

I’ve had the luxury of training in pastoral care so naturally I reassured myself of the various ways I was grieving. The numb feeling and low affect were normal. the guilt over not waking her up would pass. This was yet another example of how not in control we truly are. Bursting with potential but miserably powerless.

By Friday I knew I was channeling my grief through anger. Nothing was satisfactory. That body in the coffin was not my friend anymore. The pictures that showed my grandmother in her full vitality, not laying in state or exhausted from dialysis, moved me to release the tears I longed for.

 Tears she taught me not to waste.

I kept trying to remember happier times. Us watching action movies, basketball, professional wrestling. Eating Chinese food or rice and peas. Listening to her stories and laughing at her jokes. It was all bottled up. I had always feared this season and anticipated that it would make me burst. I’ve found my grieving for her is a leaky faucet. A thousand cuts bleeding me dry.

Interestingly enough my time in two Trip Lee albums form my lens for grandma’s Twilight. I moved to Charlotte in July of 2010. The weekend of my move is the same time she went to the hospital. I was tethered to my phone in the following weeks as I heard updates. News that she would need dialysis drove me to tears. I wanted to give her my kidney. I knew she wouldn’t accept it and was told it wasn’t an option for her. At her health and condition the surgery alone would be fatal.

My  apartment was anointed in tears. The loneliness of a new city was suffocating enough without the dread of every  phone call bringing unfortunate news. I listened to Between Two Worlds alot that summer. And I remember the song “prognosis” being exceptionally capable of making me sad. The beat and chorus were matter of fact “it ain’t looking good for me. Nah it ain’t looking good for me. ” eventually, grandma was healthy enough to talk and I intentioned in every conversation thereafter to make it count. I could never be certain if I’d get another chance to speak to her so I had to make each conversation count. Needless to say this became very taxing.  I grew to loathe the telephone and considered it a poor shadow of how things used to be.
Over the next two years I did my best to make the most of our interactions. Phone calls and facetime did what they could. Visits home were filled with equal parts appreciation and apprehension. As my own health challenges were requiring me to be close to home, I looked forward to more times together. Perhaps even recapturing the magic of our interactions before health made life more complicated.

My mom tells me that grandma was excited I would be closer. I think she knew it would be this way. Home again, beginning a New chapter, allowing myself to go through the motions of grief as Trip declares, “even the sun goes down. Heroes die eventually…”

Brian Mooney

Educator, Scholar, Author

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