Lupus?! A wha dat?!

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

Tag: fear

Performing “Backside!” At ASU Gather

Peace!

Really excited to share this video of my performance at Arizona State University. Shared a story called “Backside!”

Watch it here!

Fight or Flight

Hearing about COVID-19 is like hearing about a tormentor’s return. It’s knowing you shot Michael Myers but not knowing where the body is. Or refusing to say Candyman. 

This week my sympathy for what was happening around the world became preparation. I wrestle with my fear, read Psalm 91 religiously and wash my hands even more. On Friday I could not place my feelings. This isn’t the sense of accomplishment and fulfillment that the last day of school normally brings. It feels so indefinite. A collective interruption that holds us all in suspense. It hit me during an assembly. The feelings were so strong I wondered if it were psychosomatic. I felt my chest tightening during the assembly. I tried to calm myself down but eventually had to go to my classroom early and just pray. This episode and the exhaustion I feel tell me how unwilling my body is to have another dance with the devil.

Since 2011, I have had pneumonia five times. All of my episodes of pneumonia are connected to complications from Lupus. I am too familiar with how exhausting those fevers are, how labored the breathing is, the terrible effects of the antibiotics, and the permanent damage it inflicts on your lung capacity. I often think of my lungs as a building and that pneumonia has rendered rooms in that building uninhabitable. 

I texted with the pastor whose church I am visiting and am grateful that he understood why he would not be seeing me until this situation is under control. I wrestled this week. Were my precautions an example of anemic faith? Does trusting God mean that I keep going to church and step boldly as if there is no crisis afoot? I’ve arrived at the theological juncture that informs me to demonstrate my faith through wisdom. The Lord brought the episode in the gospels where Satan tempts Jesus to mind.

In Matthew 4, the devil brings Jesus to the “pinnacle of the temple and said to Him, “If You are the Son of God, throw Yourself down. For it is written: ‘He shall give His angels charge over you,’ and, ‘In their hands they shall bear you up, Lest you dash your foot against a stone.’” Jesus said to him, “It is written again, ‘You shall not [a]tempt the Lord your God.’” 

It is not an act of courage, bravery or faith to go out and about during this time of social distancing. It is selfish and foolhardy. It is best to demonstrate your faith and trust in God by taking care of the most vulnerable among us. You may have the health to overcome COVID-19 but consider those of us for whom contracting the virus would mean increased hardship, or even death. I am trusting in the Lord and believing that God will grant us a hedge of protection. I believe that we can participate in God’s good work by being that hedge for our most vulnerable neighbors. It is what’s best. So, you won’t see me out and about for the foreseeable future but I am confident that this too will pass. God bless you and keep you, my friends. Stay safe. 

Chasing Normal

It is hard to believe that I have six and a half weeks until I return to work. There’s a mix of excitement, fear, and “today has enough trouble of its own”  coursing through me. Some days I feel bursting at the seams, ready to get back to normal (though there is no such thing) and other days I feel like I have no sauce at all.

I had a setback two weeks ago on a Friday night. I felt ill most of the day and had no appetite. Foolishly, I took my medicine without eating dinner. Around midnight I went to the bathroom and vomited a sea of blood.

I told Bri and we made our way to the hospital (not before vomiting for the second time in an hour). As we walked into the emergency room I began to feel chills and body aches. It scared me because it was the most ill I’d felt since the fall. We sat in the waiting room and I felt my confidence about life and chasing normal, fade.

The hospital kept me overnight for observation. Thankfully I did not vomit anymore. They discharged me with orders to follow up with my primary doctor and my vitals were good.

I was happy to be sent home but I’d be lying if I didn’t admit that being back in the hospital shook my confidence. I told Bri that I couldn’t think of five straight days where I didn’t feel ill or fatigued or just not right. So, as I used to do when I wanted a fresh start, I got a haircut.

During the flare-up in the fall, I stopped shaving my head because among everything else, my scalp felt very damaged. I could see scarring on my face during the flare-up and assumed the same was happening under my beard and hair. My hair grew to a point with very different texture than normal but my beard was wild and untamed. I thought about letting it grow until June but then it started to annoy me. I brought it up to my rheumatologist in March and he did not see the danger in cutting my hair so I was happy to shave again. My shaved head and cropped goatee revealed my autumn scars but I am kind of glad to have them. Lupus can be such an invisible disease and the scars help remind me that I am not making this up. They remind you of what you’ve been through. Scars can be beautiful.

Brian Mooney

Educator, Scholar, Author

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