Lupus?! A wha dat?!

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Tag: faith

With gratitude

My sons and I, November 2020.

Three years ago I was in Brooklyn Hospital Center enduring what would become a three month long stay. I would spend Thanksgiving in so much pain that the last thing on my mind was a plate.

Everyday I would rise at 6, read scripture, and worship God while singing along with Richard Smallwood’s “Total Praise.” I would hold on until 9am or so when I knew doctors made their rounds, clamoring for updates on my condition. Could I go home soon? Would I make it home in time for my youngest son’s first birthday? I wouldn’t.

So standing in front of this hospital means another opportunity for me to show gratitude. You don’t have to make it. Tomorrow isn’t promised to any of us. If we’ve learned anything from 2020, impermanence stands at the top of the list. Life is truly a vapor.

God nah sleep

Zechariah 10 has been my comfort. A counter to the narrative that faith is anemic in times like these. Some take comfort in criticizing rage and pretend that God can be reduced to a justice less peace. This desire to preserve normalcy, this desire to have one behave one’s self while there are knees on our necks is borne in fear. Fear that your myopic readings of Romans 13 won’t be enough. Fear that you didn’t spend enough time with the prophets. All that book learning and you never took the time to see how much God cares about justice? You look for God in your things. You look for God everywhere but the margins. Where God always is. You speak of reconciliation. You have soothed yourself to sleep with the dream of bringing together. You refuse to acknowledge that reconciliation is the repair of the master-slave dialectic. You want to be woke now. You’ve commodified woke. Prolly will commodify non-commodifying soon enough. But all of it means nothing unless you confess. All of it means nothing unless you admit you are complicit. You cannot be the hero in this story, we already have One. Our hero hears our blood crying from the ground. Our hero weeps. And our hero nah sleep.

Grandma’s Hands

You would have been 95 today.

You would have loved your great grandsons. They have your humor and your courage.

It’s been seven and a half years since you got promoted. I still randomly weep for you.

The tears have become more joyful recently.

I thought about trying to explain to you why I’m vegan now.

I think about how much I wanted to tell you I got in to a doctoral program. Same degree as grandpa.

And whenever I get really upset, and think about how you should still be here (Follett women live long, I’ve been told), I think about how tired you were. How much you’ve earned your rest.

I dreamed you once. You were young and still beautiful. With long ponytails and joy. So much joy. It’s all that comforts me.

For Aunt Phyllis/For Mother’s Day

I wish for you to dance again

I wish for you to be healed

I wish for you to feel the wind in your hair

I wish for you to be whole

 

I wish for you to laugh

A deep, belly laugh

The kind where tears fill your eyes

I wish they were the only tears you shed

 

I wish for you to remember

And feel warm

Surrounded by past moments

I wish for you to feel loved

 

I wish for you to sing

Sing a new song

Lift your head to the heavens

Remember your help

 

I wish for you to feel full

The completion of a life well lived

The ease of having run your race

You ran it well

 

I wish for you to know joy

Deep refreshing joy

The kind that puts a smile on your face

When it doesn’t make sense

I’ll do what I can

God knows I do what I can

To make it make sense

 

 

 

Persistent widow prayers

13 Is anyone among you in trouble? Let them pray. Is anyone happy? Let them sing songs of praise. 14 Is anyone among you sick? Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord. 15 And the prayer offered in faith will make the sick person well; the Lord will raise them up. If they have sinned, they will be forgiven. 16 Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous person is powerful and effective. 

17 Elijah was a human being, even as we are. He prayed earnestly that it would not rain, and it did not rain on the land for three and a half years. 18 Again he prayed, and the heavens gave rain, and the earth produced its crops.

19 My brothers and sisters, if one of you should wander from the truth and someone should bring that person back, 20 remember this: Whoever turns a sinner from the error of their way will save them from death and cover over a multitude of sins. (James 5:13-20)

In 2015, as I rode the G train, I would listen to “Pray For Me” by Kirk Franklin. The message of the song resonated with me. I was a new father, living in a new apartment, and starting a new job. I needed all the prayer I could get. 

I loved how the song opened with vulnerability on Kirk’s part. His voice made me think of a wounded healer, someone who has been beaten down but remains hopeful. 

Those feelings have been fixed for me in this season. Walking with a limp but trying to lead, be an example, be loving. 

I’ve found myself despondent at times. Too often, reminding myself that I am not sick. Even though I am at risk, I am well.

Reminding myself of this, encouraging myself really, has become a ritual. Deepening my praise by showing gratitude for daily bread in the midst of global crisis.

I am grateful for the privilege of sojourning through quarantine with family. I am grateful for my job, my students, friends, extended family, and a community that still gathers–electronically–to worship.

I feel blessed in the midst of this storm. It’s a familiar place. So many days in the hospital, through both severe flares, were filled with laughter in spite of the physical pain and dire circumstance. But I know everyone is not there. I know many people are too smothered by despair to find anything to smile about.

I’ve been sitting on this writing since Holy Week. Since Lupus, I’ve been drawn to the solemn holidays that force you to consider mortality. Ash Wednesday and its reminder of how dusty we are. Good Friday.

I wanted to share this on Good Friday because Jesus’ cry of “My God, my God, why hast thou forsaken me?” felt more appropriate than ever. These words really ring in the hollowness of isolation. Jesus quotes the psalmist in psalm 22 and opens the door for all who feel rejected and alone. I believe that New York is the worst place in the world for loneliness. Perhaps one could render loneliness into solitude if they were, say, a rancher in Wyoming. But to be in a place so dense with population and to feel alone, is a uniquely cruel torment. 

 

It’s a call for us to innovate our love. Who is our neighbor and how can we be neighborly while socially distant? 

 

To love from a distance has become a critical form of hospitality in this time. We have to smile from a screen or behind a mask. This is difficult but I pray that you find new mercies everyday. I hope you discover new ways to love your neighbor. A radical love that pierces distances and binds us together. Let’s pray for one another. Let’s pray for people we don’t even like. Let’s confess our inadequacies. Confess our need. 

Pray for me.

I’ll pray for you.

What will we learn?

In September 2001, I was a tenth grader. I remember wearing my black and silver jersey, shiny black jeans, Raiders hat and And1 Moneys. I sat in the back row of French class and remember thinking this is the bluest sky I’d ever seen. Completely cloudless. A few minutes into class I remember the confusion of looking at that blue sky and hearing the worst thunder I’d ever heard.

Once we returned to school, my French teacher began to teach us about surrealism. We read French writers wrestle with this dream like state where the mind protects the body from reality. As we are in another reality altering event, I want us to take care in the lessons we learn from this. In 2001, we had an opportunity to learn about the love of our neighbor. We had moments where our smallness taught us about God’s bigness. Those lessons were momentary and faded in comparison to the ingrained lessons we kept. We kept the lesson that assured us that security is more important than privacy. We kept the lesson of fear. We kept the lesson that encouraged us to view the world through a lens of mistrust.

With this crisis we have an opportunity to love in a timely way. We can get closer even as we are social distancing. Let’s write to each other, send each other playlists, and create tournaments in video games. Let’s call our elders and make sure they are alright. Check on those of us who are always isolated. Let’s learn love.

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. 

I couldn’t call when You were dying

I’ve let my loved ones know

That in the event I’m on a plane

And think that I have arrived

At the end

I won’t make a phone call

No terror, or reminders of love

No semblance of intimacy thousands of feet in the air

No delusions of a life wrapped with a bow

Too dissimilar to death’s scar

The jagged pieces of lives shattered to pretend that we can ever truly be prepared

Earthquakes happen so frequent

We believe it’s man’s machinations

A revelation of Revelations

Or Mother Earth’s menstrual cramps

How regular and majestic

Coupled with threats of tsunami that kept me refreshing the page until the alert fell asleep

I forced myself awake determined not to find Wednesday with news you were no more

I opened WhatsApp to close it

Texted then wiped it away

Impersonal at the very least

And that’s never my intent

So I relearned that inaction is an action

And determined that I’d rather refresh then prepare myself for a final conversation

We’ve been doing so much better!

Rebuilding what never was

Though false alarm

I’m reminded that my instinct is well founded

A monument to catastrophe

How small we are in the face of the ineffable

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.

The Waiting

Most of life is waiting anyway right?

Scripture tells us to “Wait on the Lord and be of good courage,” (Psalm 27:14). It makes sense to couple patience with courage because waiting can really weather you. One of the things about illness that I actually appreciate is that it eliminates the façade of control. Things aren’t completely out of your hands, just mostly.

I have found myself answering “How are you?” with “I’m okay,” a lot more than is probably polite. This recovery is like a dance, two steps forward and then one step back.

I had my second round of Benlysta last week. Next week is my last round before we move to monthly doses. The treatment hasn’t worn me out as much as I anticipated. The first infusion had me in the bathroom all weekend, the second just made me sleep a lot.

My coumadin appointments are getting spaced out also. Initially, I had to see the doctor every week as we figured out the right dose of warfarin. This was tricky because other medicines were being reduced or introduced so the INR number (how they measure your blood’s ability to clot) would be all over the place. Since it has been the same for three appointments in a row, they are able to put a little space in between my appointments.

Next week I meet with my Cardiologist and GI doctor. Rheumatologist told me I’m healthy enough to cut my hair so I think I might finally shave haha.

Brian Mooney

Educator, Scholar, Author

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