Lupus?! A wha dat?!

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

Yuh lazy

“Come to me, all you that are weary and are carrying heavy burdens, and I will give you rest.”- Matthew 11:28

It’s been a week. I find myself, at this stage of recovery, able to handle one big errand everyday. Most of those errands are doctor appointments but some days I have felt adventurous/energetic enough to do a little more. Last week Tuesday, for example, I went to the doctor’s office, the supermarket and felt good enough to cook dinner when I got home. It was great and gave me a slice of the normalcy we often crave when we are recovering. The next day I could barely get out of bed. If you’ve never experienced fatigue, it isn’t the same as being sleepy. With fatigue you can be wide awake but feel like someone is on the floor below you, pulling you under with an industrial strength magnet. The only thing you can do is rest.

This upcoming Monday will be seven weeks since I have been discharged from the hospital. My normal now is being home with my family while taking my medicines. I must confess that this was not initially welcomed by me. Every good day (and even the occasional great moment) led me to feel like I was “back” and ready to get back to normal. This overconfidence would soon fade as I got exhausted or met some difficulty (i.e the betrayal of my body by lupus) that would humble me. I recently got a new primary doctor and I was explaining to him that my former doctor approved medical leave for me until June. Without batting an eye or having a moment to reconsider, my doctor said “Yeah that makes sense. You need it.” It was a relief in some regards because I felt like it gave me permission to rest but my ego was like, “Man, how sick am I?”

So I say that this has been a week because I met with five different doctors. On Monday I met with my rheumatologist who said that my labs look good. He gave me information about a drug I used to take in Charlotte called Benlysta. Five years ago I took the drug via infusion at the rheumatology office but the drug is now available in subcutaneous form.

I met with my cardiologist on Tuesday. It was our first time meeting but we both felt like we had met before. I had gone to that office in November for an echocardiogram and my doctor remembered me because she sent an urgent message to my former doctor. The echocardiogram in November showed a vegetation on one of my heart valves that, if left untreated, could permanently damage the valve. Tuesday was the first time I learned this (no clue why my former doctor neglected to tell me this information) and the first time in a few weeks that I got really scared about my health. Chronic illness has made me more comfortable with my mortality but even still I was like, “Bacteria on my heart? How does that happen?”

My cardiologist does not want me to worry about this. She has scheduled another echocardiogram for me and has me wearing a heart monitor for a week since my heart is still working really hard. (On the day of the appointment, walking from the car to the doctor’s office felt like I had just finished playing full court basketball.) I get fitted for the monitor on Monday and figure that it will enhance my playtime with the boys since I’ll look like Tony Stark with it on.

Wednesday was the busiest day of the week as I went to the nephrologist and coumadin clinic. I first met my nephrologist while I was in the hospital. Very happy to report that my kidneys are functioning properly. He checked me for swelling in my feet and legs (a big problem even a week or two after I came home) and I have none! I asked him about deodorant (they come with warnings about kidney disease) and alcohol. He told me that the deodorant was fine and to only have one drink this weekend (celebrating Bri’s birthday!). Well I had my one drink, a refreshing Blue Moon, and was in bed all day Saturday. Not that I was ever a big drinker but I will probably avoid alcohol going forward.

I didn’t have any appointments on Thursday so I was able to visit with one of my friends. It felt so good to walk outside by myself and sit in a coffee house. (Oh! How could I forget another landmark of the week! I took a Lyft to a doctor’s appointment independently.) This recovery is filled with ordinary moments that feel like real breakthroughs simply because of how difficult life has been.

Lastly, I met with my GI doctor on Friday. While I was in the hospital, I had an ulcer in my stomach that bled enough for the doctors to cauterize it. I have not experienced any discomfort since but he wants me to finish my omeprazole and do a stool lab in the upcoming weeks.

We celebrated Bri yesterday (truly, I thank God for Bri everyday) and were supposed to have a date today but that fatigue hit me like a ton of bricks. I felt like crap emotionally because I really wanted to go out today but the rest was necessary.

 

Dem seh war fair een?

Mad?

Mad!

Mad.

Sad?

Sad!

Sad.

Bad?

Bad!

Bad.

Wuss?

Wusserer.

Suffer,

sufferer.

“Do You Want To Be Made Well?” (John 5:1-17)

The Problematic Pool Party

Calvary Gospel Tabernacle

8.30.2015

John 5:1-17

“Do you want to be made well?” Seems a bit silly doesn’t it? Of course I want to be made well!  But I wonder…if in like a parallel universe this brother might look at Jesus and say, “Meh, come to think of it, lying down… it’s not so bad! I’m fine, really! I’ve got a Good view right here! plus the cool off the pool is refreshing at times. Yeah, I might stay a while…”

 

I love this situation. There’s a bit of agency included in this encounter with the Christ. Not so much agency that it gives license to twist the gospel, or reduce the gospel into some sort of self-help, pull yourself up by the bootstraps message. No friends I believe we have a situation where once again our Lord calls us, even us, into community and responsibility for one another.

 

The man who has been suffering in this story has been suffering for a long time! Scripture tells us in verse five that he has had his infirmity for thirty eight years. This man was a staple of the area, time and time again seeking his healing in the pool but unable to receive it. When reading this scripture my mind was drawn to the brothers and sisters I have encountered in my travels. At Penn Station, both Newark and New York, it would be impossible to pass through and not see a brother or sister experiencing homelessness. A brother or sister in desperate need of help. Food. Shelter. Some recognition of their humanity. Some dignified gesture that reminds them that they are not forgotten.

On the subway earlier this week I sat and watched two separate occasions where gentlemen attempted to gather the passengers’ attention and ask for help. Some change. Any food. Leads on shelter. Clothing for their children.

Walking around my neighborhood in Brooklyn I encountered two more men. One in a wheelchair trying to find shelter. Another asking for enough change to get bus fare.

In the encounters this week, I fear that I fell among the number whom James addressed in James 2:15 and 16. ‘If a brother or sister is naked and destitute of daily food, 16 and one of you says to them, “Depart in peace, be warmed and filled,” but you do not give them the things which are needed for the body, what does it profit?

Thus also faith by itself, if it does not have works, is dead.’

You see I’m normally happy to give. A cheerful giver even! But I found myself with eyes glued to my book on the train, unwilling to open my wallet in public and give what I could. I gave a dollar to the brother in the wheelchair but found myself pretending to be unable when I really was unwilling to help more. The last brother was very polite and I wanted to help him too but I was unwilling to use my debit card to buy his fare. In all of these instances I felt my spirit bursting to grab hold of these brothers and love them; praying for them, encouraging them, showing the vitality of our faith, letting them know my works are grounded by the moving of the living God.

I made no such statements. My mind more attuned to my bank statement. Dollar bills held hostage by the tyranny of bill collection. And I paint this picture for you because I consider myself a good, charitable person. A nice guy even. Yet still I must wonder, like popular hip-hop artist Kendrick Lamar wonders, “How much a dollar cost?” I’m not afraid that I’ve blocked my blessing nor am I fearful of any divine punishment as a result but I pray that God’s love pierced their situations in spite of my inaction. I am confident that my anxiety, my cowardice, could never build a wall high enough to impede the Lord from lifting them out of their circumstances. No doubt, this is the gospel but it is far from a license for complacency.

Brothers and sisters, in truth, we serve an awesome God. A God who continually calls us to participate in God’s life. Instead of seeing one another as an inconvenience how transformed would we be if we saw one another as an invitation to follow Jesus.

I wonder how many people we know in our own lives who are stuck like the brother by the pool. I love this story because I not only see Christ’s example but I see myself by the pool. I joked earlier about the parallel universe where the man is actually content where he is. But when I think about the ways I have answered “Do you want to be made well?” with complacency, fear, anxiety, or doubt, it is no laughing matter. If we are really going to be about this life and really trying to grow in our walk with the Lord then we need to be real about the ways that we too are attending a problematic pool party.

I would never go so far to call lupus and the difficulties that followed my illness a good thing but I saw so many examples where God used this tragedy to bless me. One example of this is learning to receive charity. We feel good when we help other people. There’s an extra puffiness we experience when we know we can reach out and help somebody. Maybe we even believe we are sowing a seed of some sort by helping somebody. I always wonder if I have unwittingly entertained angels (Hebrews 13:2) whenever I have helped somebody. But brothers and sisters, on the opposite end of that spectrum…it is not fun to need help.

Our culture teaches us to preserve our dignity at all costs. Some of us have been burned by needing help, ridiculed for taking a handout, seemingly suffocated under the weight of our shame. But receiving charity is not a mark of failure. No one gets anywhere by themselves. Both Thomas Merton and Dennis Brown agree, “no man is an island.” There is a strong sentiment within the culture to prove how much you are trying, that you are can do! But I submit to you that a crucial component of Christianity is reaching the limits of your agency. Where your try just is not enough, and you need to be made well.

This is beautiful to me because the man tried and it was not enough. Living with a situation like his for thirty eight years…that’s more than enough evidence to believe that this is his lot in life. That perhaps contentment in this stage would be wise. Save him from some heartache. Why try to get in the pool again? But thank God that this man’s story does not end there. He encounters Christ and Christ invites him to participate with God. It is a slice of being a co-heir with Christ (Romans 8:17). Faith is participatory; we cannot afford to hold onto what we have whether that “have” is excess or doubt. We need to be available in order to be made well.

In verse 8, Jesus said to him, “Rise, take up your bed and walk.”


I wonder what we can accomplish when we believe in God more than we believe in our circumstances. It seems that faith always has to come with a level of absurdity. If I tell you I’m going to breathe my next breath you probably won’t be that impressed. But if I’m telling you that while I am in a hospital bed recovering from pulmonary embolism, some faith may be required.

We cannot be so married to our dignity, caught up in our sense of self that we forfeit these opportunities to participate with God. God is calling us to be made well. God is calling us to ask our brothers and sisters if they want to be made well. What’s realer than that?

Truthfully being faithful is difficult and I think we develop a sort of Stockholm Syndrome with our problems. The devils we know seem better than the ones we don’t. (Or as my great, late grandmother used to say “Never lef sure fi unsure.”) But what happens when we quiet our circumstances enough to hear the Master’s voice beckoning us to “Rise” take up our beds and walk. Don’t worry about where you will go, just get going.

In verse 17, when it is clear that some members of the community are offended by what the Lord has done, Jesus answered them, “My Father has been working until now, and I have been working.”

Everytime I see this verse, I think about Brooklyn Tabernacle Choir singing “God is working.” It is seductive and rather simple to write off your life, write off the world even, and stay convinced that the world is going to hell in a handbasket. But I wonder what happens when we take the Lord’s Prayer serious enough to believe that God’s Kingdom come, God’s will be done on Earth as it is in Heaven (Matthew 6:9-13). Not focusing on the situation (and surely not ignoring it, by and by) but believing that God is working, that God loves you enough to invite you to participate in that work and making yourself available so that “He who began a good work in you will complete it until the day of Jesus Christ.” (Philippians 1:6)

I am convinced that we cannot follow Jesus by ourselves. To be Christian is to be in community. And the beautiful thing about the beloved community is that God continually calls us to love folks we may not even like. The least of these. Those the rest of society has the leisure to forget. We do not have that leisure.

We see in Deuteronomy 10, verses 18 and 19 that God “administers justice for the fatherless and the widow, and loves the stranger, giving him food and clothing. Therefore love the stranger, for you were strangers in the land of Egypt.” The Lord provides the example then calls us to be holy as God is holy.
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So where are we in this story? Are we going to be like our Master or are we going to care more about our sense of order more than one another? I pray that we guard our witness closely. It is conflicting, and rather silencing to say we love God when we do not show that love to our neighbors. In what ways are we forgetting that Sabbath was created for man and not man for the sabbath? (Mark 2:27)

Brothers and sisters, you do not need me to convince you of the world’s brokenness. The problematic pool party has too many attendees. Despair seems more logical than hope. Too many feel that it is over but praise be to God, we know the author of our story. And He intends far more than this. You are not defined by what ails you. You are not a prisoner of your problems.

May we see our Lord as our example and walk with such empathy. He got directly involved in the mess, he was not far removed. He lived His life worshipfully. May we open our eyes and pray with our feet so that we too may worship the Lord in spirit and in truth. In the name of the Father, the Son, and the Holy Spirit, Amen.

 

Heatrock of the Week KB feat. Lecrae “Sideways”

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.

“Splashpad” featured on Human/Kind Journal

Biggup Human/Kind Journal for featuring my poem “Splashpad.”

You can read “Splashpad” and other poems on their site here.

https://www.humankindjournal.org/humanities/a-poem-by-chris-burton

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!

Explaining Death

My little ones have seen a lot of it for their ages. At least I think so. I compare it to my time as a chaplain at a K-8 where parents would call frantically “our goldfish died and Johnny doesn’t know yet! Please advise!”

I didn’t have a chaplain to explain that our cousin Cam, who my boys just met for the first time at 4th of July, is gone. We just went to the funeral and tried our best to explain why everyone is sad and why we have hope that we will meet Cam again. I remarked to my wife, “They’re taking this really well. I hope that’s a good thing.”

We relied on this experience when Dat died in January. We were again on the road going to another funeral. The boys, now old enough to remember these sort of things for the rest of their lives, seemed to embody hope for the rest of our mourning family. Something about youth at funerals helps you remember that life goes on.

I remember my Granny Louise dying when I was five or six and being angry because I couldn’t fly to Jamaica again to say goodbye. My grandmother went to bury her mother by herself, as far as I knew, and I wanted to be with my friend. I was really sad because I had just met Granny Louise in the summer of ‘92. I’ll never forget the warmth of her hugs and the smell of her hair. I don’t know if I’ve ever felt safer.

My sons were still awake when the news of Chadwick Boseman arrived. In my stunned state I still wished to shield them, soften the blow of this mortal wound. “The man that plays Black Panther isn’t alive anymore. He was sick and we all didn’t know. He was even sick while he made those movies! We will miss him so much. Let’s watch his movies tomorrow and give thanks for his life.”

So today we will watch Chadwick’s work as T’Challa. We will see him portray James Brown and Jackie Robinson. Thurgood Marshall. At some point I will watch him portray an officer who has the power to shut down all the bridges into Manhattan. I will see him be the living conscious of veterans trying to pick up the pieces.

Watching Chadwick Boseman portray T’Challa in Black Panther is the happiest I have ever felt in a movie theatre. Ever. I am forever grateful. God bless your life.

Source: Instagram @chadwickboseman

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. 

Brian Mooney

Educator, Scholar, Author

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