Lupus?! A wha dat?!

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Tag: lupus

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.

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.

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. 

Remember

Had the chance to visit Charlotte for my friends’ wedding. I hadn’t been there in a few years, since Coltrane was in the womb. Bri and I lived there until 2012 and previously whenever we would visit, we felt the weight of regret. We’d think about the house we wanted to buy, the lives we sought to lead, the friends and communities we were leaving behind.

It would especially burn whenever we visited Trinity. Trinity Episcopal School is unlike any other place. Even on this trip, as we greeted friends, walked around campus, and worshipped during community chapel, we left with the hope that we’d find a school like Trinity for our boys in Brooklyn.

Charlotte is a lovely city. At one time we thought we’d spend the rest of our lives there. We wouldn’t be upset if God led us back there later in life. I was thankful to revisit a chapter in our lives that is highly significant without feeling the burden of unfinished business.

It was the first road trip Bri and I have taken since the last flare-up. Life altering events give you a chance to see the impossible in the ordinary. Sitting in the car for more than an hour would’ve made me anxious in January yet we were able to retrace our old haunts on the highway, including the Natural Bridge in Virginia. Truly, in all things, give thanks.

Times feel much simpler now. I’m only a couple of weeks away from returning to work. I have an endoscopy tomorrow (following that bloody vomit episode from April).

Cannot thank you enough for your love, support and endeavoring to understand. May you, in your time of need, have a community that reflects what my community has been for me.

 

With love,

 

Chris

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.

To love and be loved

3 Then the Lord said to Satan, “Have you considered My servant Job, that there is none like him on the earth, a blameless and upright man, one who fears God and shuns evil? And still he holds fast to his integrity, although you incited Me against him, to destroy him without cause.”

4 So Satan answered the Lord and said, “Skin for skin! Yes, all that a man has he will give for his life. 5 But stretch out Your hand now, and touch his bone and his flesh, and he will surely curse You to Your face!”

6 And the Lord said to Satan, “Behold, he is in your hand, but spare his life.”

Job 2:3-6 (NKJV)

Feels fitting that Ash Wednesday and Valentine’s Day cross streams this year. In my last update I mentioned how chronic illness has made me think about mortality more than I’d like to. I try to mask it in gallows humor but it is sobering when jokes about your demise are left unfunny on the ears of those who love you. I don’t think about death from a fearful place. If anything I feel charged to enjoy each day and be fully present. Love and loss are inextricable. I refuse to love as if I am incapable of loss; my human limitation would pervert that love into a sort of entitled emotion that takes loved ones for granted. Instead I would rather fuel my love with an understanding of impermanence. I’m not going to look at the clock the whole time but my loved ones ought to be cherished. Prayerfully I am doing that.

I definitely feel loved in return. It’s not something I take for granted. The phone calls, visits, donations and acts of kindness my family and I have received from you all is beautifully embarrassing. Thank you for seeing me.

I have three appointments this week. The appointments with my primary doc and nephrologist went really well. My creatinine level, formerly as high as 6.6, is now .98. It feels good to see your doctors tell you that your health is heading in the right direction.

After my primary doctor appointment, I got a call from my cardiologist. The last echocardiogram I did still shows something on my valve. As a result, I am scheduled to get a transesophageal echocardiogram in the upcoming weeks. Pray for me as I pray for you.

Chris

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.

 

Out of Egypt

Then Joseph got up, took the child and his mother by night, and went to Egypt, and remained there until the death of Herod. This was to fulfill what had been spoken by the Lord through the prophet, “Out of Egypt I have called my son.”– Matthew 12:14-15 (NRSV).

 

God’s relationship with Egypt is fascinating. Once the greatest civilization on Earth, it is used as an instrument throughout history to illustrate God’s ultimate greatness. Perhaps this is most vivid in the Exodus story but is rather noteworthy in the life of Christ as well.

 

Things got hot for our Lord’s family very early. Herod, upon hearing word of this “King of the Jews”, tried to deceive the wise men and orchestrated a massacre. How fragile is your power if you need to harm the innocent in order to keep it?

 

Jesus’ family would stay in Egypt until Herod’s death fulfilling, as verse 15 states, the words of the Lord through the prophet, “Out of Egypt I called My Son.” In this instance Egypt once again is God’s instrument; a holding device where the promise is nurtured and cultivated. It fits thematically with the permanent truth that patience is necessary. There are plenty of “Hold on!” moments in Scripture (no doubt they are there as mileposts for us to be encouraged in our waiting). The waiting can feel like bondage.

 

Hospitals can be Egypts. Since 2012, I have been hospitalized six times. My last stay cost me the opportunity to be with my family on Thanksgiving, attend my youngest son’s Christening or be with him on his birthday. Everyday that I was able to I would look at the calendar and mark how many days I was confined to a hospital bed. I would argue with doctors and nurses with the hope that they were miscalculating the time of my discharge. One episode found me yelling at a young doctor who, around day 19 of my stay, unpreparedly estimated that I would be there ten more days. “Ten more days!” I exclaimed. It was entirely unacceptable to me. I had lost too much already, I thought, what more do you want from me!

 

Friends and loved ones I spoke with would hear me compare my situation to that of Batman’s in The Dark Knight Rises. It felt like lupus had broken and imprisoned me in the pit. There were no prayers there, no reading of scripture but as the psalmist reminds us in Psalm 139, God was there. The Holy Spirit is a wonderful roommate. I was broken, had nothing in the tank, no sauce but I knew this was not it. Unlike my attack in Charlotte, in which I woke up everyday thinking I had died, I did not believe that this would kill me. The situation was dire at times but the greater problem to me was not being with my family. Sometimes we consider our Egypts to be prisons when they are merely holding centers.

 

In both my hospital experience and in the story of our Lord’s family, timing is everything. We are not in control, there are too many variables for us to master without the Master. What we see as a crisis does not catch the Master by surprise. He is not powerless in the face of our circumstances. The severity is real. Whether Herod or lupus, there are forces in our life that seek to smother our destinies. Thanks be to God that He is a shelter.

Flared Up

PrednisoneAzathioprine 

If you take that medicine

How you gon get thin?
Aye
Flared up 

Now I’m flared up
Blue fingers

Red hands
So much fatigue

Can’t stand

Arthritic in my joints

I’d tell you how I’m feeling

But what’s the point 
Kidneys

They talking bout my kidneys
Stressed out

Thinking what my kids need
Overdraft

Can’t hit that overdraft

I think that I budgeted

Forgot to do the math so now I’m
Flared up

Now I’m flared up

Weekly Wha Dat?!

Blow is the James Baldwin of our time. Using his gifts as a storyteller, he writes of poverty, race, bullying, gender and sexuality – the issues, struggles and process of self-discovery of our era.” 

“When we look at the life of Moses, we see humility isn’t bashfulness. It isn’t self-deprecation. It isn’t about ignoring your strengths (or weaknesses). Humility doesn’t mean you can’t be confident. True humility is understanding where your confidence comes from—and that confidence should come from your identity in God.”

“I never thought anything like this would ever happen to someone like me,” Erika Schoonover said. Schoonover and her fiance Josh Wilberger have had to put off their wedding for years. Schoonover has lupus, and she’s already lived past the life expectancy for someone with her disease. 

” I do not relate these experiences to gain sympathy. I broke the law knowing there would be consequences. I tell my story because this is the side of the system we didn’t get to see where I grew up. In the wealthy suburbs of Massachusetts, our shared narrative told us that people who didn’t live where we lived, or have what we had, weren’t working as hard as we were. We avoided inner city streets because they were dangerous, and we relied on the police to keep people from those places out of our neighborhoods. Whatever they got, we figured they deserved. My total, unquestioning belief in this narrative was the reason I arrived in Roxbury, fresh out of law school, eager to incarcerate everything in sight.”

Brian Mooney

Educator, Scholar, Author

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