Tag: epilepsy

Believe

Lead in: I am in my second year of seminary through the Iona Eastern Shore program, which allows our cohort to continue working while we are going to school. April 15-16, with a last minute switch, was a preaching weekend for me at Christ Church Easton. This is the text of the sermon I gave.

Churches/denominations that use the Revised Common Lectionary have prescribed readings for each day and Gospel readings for each Sunday. So we don’t get to pick what Gospel we preach on.

The Gospel reading for April 16 was John 20:19-31, which most people know for “Doubting Thomas,” the disciple who won’t believe that Jesus has been resurrected until he touches Jesus’s wounds for himself. We are all a bit like Thomas. The reading is where Jesus appears to the disciples for the first time after his death.

“Do Not Doubt, But Believe”

I’m a big fan of John’s Gospel. On the one hand, he’s a bit like the Rodney Dangerfield of the gospels—not enough respect to get his own lectionary year like the synoptic Gospels; on the other hand, every lectionary year is made better because we have John peppered throughout them.

For John, “believing” is a big deal. He uses the word “believe” 98 times in his Gospel, always as a verb, as something active and dynamic. He tells us at the end of today’s reading that these stories are written that we might believe that Jesus is the Messiah and through believing have life in his name.

Today’s reading is John’s version of Jesus giving the Holy Spirit to the disciples. Remember, John didn’t write Acts, that was Luke, so we don’t get the Pentecost telling of the story here.

There are scholars who say that John’s Gospel is the one most likely to have originated with an eyewitness account. We read the author describing himself as being there at the crucifixion and later, on the beach with Peter and the others. There are details in John that we don’t find in the others.

Let’s look at two stories of the giving of the Holy Spirit. At the beginning of Luke’s Gospel, he says that after investigating everything he wants to write an orderly account of all that went on, talking to everyone he can. Each Gospel sets out its witness to the good news of Jesus Christ, and I love Luke (he gives us the prodigal son, the Road to Emmaus, etc). But when I think humorously about the way stories get passed down over time, there is some part of me that thinks about Luke asking everyone for their recollection of Pentecost:

“And there was FIRE! Fire? Yeah, FIRE! It was intense! And then people were speaking in tongues, remember that? And people thought we were drunk, and Peter was like, noooo waaaayy, it’s only 9:00 in the morning…”

In Luke’s telling of the story in Acts, it is a public event, a spectacle.

In contrast, listen to John’s account:

“Jesus said to them again, ‘Peace be with you. As the Father has sent me, so I send you.’ When he had said this, he breathed on them and said to them, “Receive the Holy Spirit. If you forgive the sins of any, they are forgiven them; if you retain the sins of any, they are retained.’”

Maybe it’s because I tend prefer being understated, but I love the simple, straightforward, intimate and understated way John gives us the Holy Spirit. No crowds, no fire, no speaking in tongues. Jesus breathed on them and gave them a new Spirit. A new life in Him. A life that has overcome death.

Does that sound familiar? This is from Genesis, Chapter 2, Verse 7:

“then the Lord God formed man from the dust of the ground, and breathed into his nostrils the breath of life; and the man became a living being.”

I love that John sees what Jesus is doing and connects it back to the beginning (remember he starts his whole Gospel account with “In the beginning was the Word, and the Word was with God, and the Word was God.”) John wants to make sure we don’t miss what’s happening. This is new life, that comes through Jesus, which is giving us a direct connection to God.

I get excited about the Holy Spirit.

But let’s backtrack to where the disciples are in the reading and what’s going on.

Jesus has been arrested, crucified, and was buried in a tomb. The disciples scattered, afraid for their lives. Just before today’s reading, Mary Magdalene went to the tomb and found the stone rolled away, she ran and got Peter and the one whom Jesus loved (who we think of as John, the author) and they went in and found the tomb empty. And then the men left and went home. All Peter and John saw was the empty tomb.

Mary Magdalene stuck around, talked to angels, then encountered Jesus, who told her to go and tell the disciples, which she did. But none of them have seen Jesus for themselves yet. They might dismiss her story as being unbelievable story, saying she was overly excited at finding the tomb empty—she could have been hallucinating.

Now, they were hiding out together in a locked room, hoping not to be found or found out. As writer and pastor Frederick Buechner describes it:

“They had bolted the door and were listening for the dreaded sound of footsteps on the stair when suddenly Jesus was among them. He stood in their midst—always in their midst, this man, turning up when they least expected him—and told them to breathe his breath, his holy breath and spirit, so that they could go out into the world again and perform his holy work.”

6th century mosaic in the Church of Sant’Apollinare Nuovo, Ravenna

Knowing that they are going to be scared out of their wits, Jesus’s first words to them are “Peace be with you.”

He reassures them. He shows them his hands and his side, so that they know it’s him and that this is real. And the disciples rejoiced. Of course they did. If there are scenes out of Scripture that you would want to be there for—this has to be one of them! This is massive. It’s transformative. It’s life changing. It’s death conquering.

Jesus gives the disciples what they need to believe. And then he gives them his Spirit and gives them work to do.

But Thomas isn’t there. The other disciples tell him what happened, but he isn’t having it. “Unless I see the mark of the nails in his hand and put my finger in the mark of the nails and my hand in his side, I will not believe.”

On the one hand, we can say, sure, everyone talks a big game when Jesus isn’t standing there, just you wait… But I think this is true to life. How many of us, when hearing friends tell us an unbelievable story, decide, “I’ll believe it when I see it.” Even if it comes from people we trust, we still want proof. Thomas wants the same experience the others had.

So what does Jesus do? He comes back. He shows up again, just for Thomas. He gives Thomas what he needs to believe. Jesus doesn’t scold him, he is there for him and tells Thomas, “Do not doubt, but believe.”

Notice, Thomas doesn’t get kicked out of the club for doubting. That is one of the wonderful aspects of this reading—there is room in our faith for doubt. It is okay to want to see for ourselves. It’s okay not to believe just because everyone else tells you to. Jesus works with Thomas.

And Thomas believes; seeing is believing as they say. Jesus then delivers the showstopper of lines, a line so important to faith: “Have you believed because you have seen me? Blessed are those who have not seen and yet have come to believe.”

That’s us. I don’t know about you—I haven’t encountered the bodily resurrected Jesus in the flesh. But I have come to believe. How?

Think of the work Jesus is asking the disciples to take on. To help people believe, when they haven’t seen him for themselves.

Here is Frederick Buechner again:

“The risen Christ is risen in his glory, but he is also Christ risen in the hearts of those, who although they have never touched the mark of the nails, have been themselves so touched by him, that they believe anyway. However faded and threadbare, what they have seen of him is at least enough to get their bearings by.”

Believe. What does that mean here? Is that an intellectual affirmation? Is it convincing ourselves and never doubting? Is this just a box we have to check off? I don’t think so.

For the disciples, their belief was foundational to the mission Jesus gave them. If they didn’t believe, what kind of witnesses would they be? If they don’t believe, why would anyone they meet want to believe?

Jesus’s life and love and good news are dependent on the disciples to continue to spread it out into the world. He was inviting them into an intimate, dynamic relationship with him.

And the same thing is true of us now. If people are going to come to believe in Jesus, it probably won’t be because they have had a bodily encounter with the resurrected Christ; it will be through the Holy Spirit, which is carried and passed on by the NEW body of Christ, the church, US.

The former Archbishop of Canterbury, Rowan Williams, in his book, “Tokens of Trust: An Introduction to Christian Belief,” talks about a young Jewish woman named Etty Hillesum. She was in her 20s when the Germans occupied Holland. She watched her world turn into an utter nightmare. She was sent to a concentration camp at Westerbork before being shipped to the gas chambers at Auschwitz.

She wrote in her diary: “There must be someone to live through it all and bear witness to the fact that God lived, even in these times. And why should I not be that witness?”

Williams describes her attitude and commitment like this:

“She decided to occupy a certain place in the world, a place where others could somehow connect with God through her. She took responsibility for making God credible in the world. She took responsibility for God’s believability.”

What if THAT is what believing in God, believing in Jesus, means. That with and through our lives, we take responsibility for God’s believability. How many of us would say that we believe if that were the standard?

That’s what Jesus is asking of his disciples. But he doesn’t leave them on their own to do it, he doesn’t abandon them. He shows up. He brings them peace. He breathes his Holy Spirit into them.

The fact that we are gathered here in a church worshipping and loving Jesus, trying to understand his life and example, and bearing witness to the good news of his Resurrection says that the early disciples, with God’s help and the Holy Spirit, were up for the task.

I wonder: are we?

Let me give a brief witness. Over the past month, my daughter Ava has been in and out of A.I. DuPont Hospital, three times, first for surgery, then with multiple ambulance rides for seizures she couldn’t come out of. She’s home now and we’re hopeful she’ll be back in school this week and going to her senior prom next weekend. But epilepsy is challenging at times, and it’s been a rough, slow, frustrating go of things.

Not once going through it, have we, or I felt alone. Through so many text messages, phone calls, people checking in before or after classes, the school systems offering help, prayers, hugs, you name it–I have felt the Holy Spirit and God’s love at work through friends, through this congregation, through family, sometimes through strangers–volunteers at the Ronald McDonald House or, nurses, doctors, and people working at the Einstein Brother’s Bagels at the hospital, who can tell you are beyond tired this morning.

My experience is not unique. One of the things that touches my heart the most is to hear how people have shown up, how people have been there, how people have been LOVE in the lives of others. The way we love one another, even as Jesus loves us, can help make God believable for others.

We can see the Holy Spirit being God’s love in the world. We can be the Holy Spirit being God’s love in the world.

In the dark and confusing times that we are in the middle of in the world right now, can our belief, can our lives, can our love, be a witness for God’s believability in the world?

Yes, we can be that witness. Yes, God’s love, moving through us, through our belief, and our lives, can be credible in the world. That’s how the Holy Spirit works. No fire required.

Amen.

Our Iona Eastern Shore seminary class with professor, Fr. Dan Dunlap and guest presenter, Dr. Tom Long, one of the United States foremost preachers. That is how we started Saturday.

It never doesn’t take a village: an Ava update

The expression, “It takes a village to raise a child” is incomplete. The thing is, as we go through life, it never doesn’t take a village. The more I have opened myself up, welcomed friendships, been with family, worked at the church–there is never an age we don’t need a village around us. We lose people we love, we go through illnesses, life gives us things we don’t expect and aren’t ready for, and we need people. And we can be there for people.

One of the places I have seen that most clearly in my life is with our daughter Ava. I have written about her story here and there (this Tidewater Times story is maybe the best summary), Ava developing epilepsy at age 10 after brain swelling has become a defining part of her life in a way no one wants.

The village around us has included people from the Oxford Community Center and Oxford Fire Department, people from Christ Church Easton, people from Caroline and Talbot County Schools, family, friends, churches, social media, prayer lists, and goes further than I came name or be grateful enough for.

As we enter into a next phase of Ava’s care and world, I want to give an update and background for those newer to the village.

Since 2014, a range of medications have not been able to control her seizures in a way that doctors, Ava, or any of us are good with. But since moving her care to Nemours A.I. DuPont Hospital a few years back, there has been progress and some hope.

Late this past fall, we found out that Ava is a strong candidate for epilepsy ( resective brain) surgery. It comes down to what part of her brain is causing her seizures and what other cognitive functions that part of the brain is responsible for. After a number of tests, it seems likely that the seizures are coming from her left temporal lobe. They were originally worried that they were coming from her frontal lobe, which would have ruled out surgery.

The goal is for her not to have seizures any more, or total seizure freedom as the neurologists like to say. Given Ava’s case and how things have progressed, resective surgery is the best chance for her not to have any more seizures. But there are other options if that isn’t a possibility. Her neurosurgeon told us that from where Ava is right now based on test results, studies, etc., 95 percent of patients have some form of surgery available to them.

In December and January she had a contrast MRI and an angiogram, both of which are to help map where important things are so that on January 30 they can do a “stereotactic implantation of depth electrodes” to then do a long-term monitor of her seizures. Simply put, they are going to drill small holes through her skull and put monitors on her brain, then pull back her medicine and watch her having seizures.

Her neurosurgeon gave a solid analogy: when they monitor seizures on the outside of her skull, it’s like listening to a conversation through a wall; they need to step into the same room to really hear what’s being said. Because they need to know exactly where her seizures are happening and what part of her brain it is to know whether they can remove it.

This is incredibly exciting and hopeful news. It is not experimental surgery, it is something neurologists have been doing and feel is her best chance to live without seizures. And we know a young man in our community who has had the surgery and has been seizure free and thriving since.

It’s also a lot to take in, process, and sit with, both as a parent and for Ava. Excited, hopeful, nervous, and scared are all words that are tossed around regularly.

For Ava’s part, she is a rock star. She knows what she wants and she sits through medical procedures like she is eating lunch. This past year, a tattoo artist friend was ready to do a big cherry blossom tattoo on her shoulder. He asked how she did with pain/needles. She didn’t flinch or seem at all bothered through two-plus hours of drawing, coloring, and shading.

As a parent, and as a family, there are small things that make you sad. We will be in the hospital for Anna’s 21st birthday, and depending on how long they keep her (one to two weeks), Ava may be in the hospital for her 18th birthday.

If she is a candidate for resective surgery, recovery would be three to six months. Ava is scheduled to graduate from high school in the spring and is especially looking forward to senior week after graduation. So surgery would be in the middle of the summer.

But one procedure at a time, one day at a time. January 30 and the stereotactic testing is coming up. Before that, and before having to be in the hospital for two weeks, both Ava and Anna will try skiing for the first time. There are experiences to be had and memories to be made every day.

“Thank you” isn’t enough for all the love, all the prayers, all the reaching out, all the positive energy, all the good vibes and thoughts, that have come from so many people. I am, we are, so grateful.

At no point in life does it ever not take a village surrounding any of us to get us through.

Companions on the way

If we’re lucky, we don’t do life alone. We have help. On his livestream sermon this week, Fr. Charlie Barton talked about having “companions on the way.” That feels like the right way to think about this past week.

Last Sunday, while in church, I got calls from my cousin and my sister, back to back. Something didn’t seem right, so I stepped outside. Our parents’ house was on fire. My mom made it out and so did her dogs. That was the report I heard before running to my car and driving to Oxford. I learned on the drive that my father was at work.

When I got there, firefighters from Oxford, Trappe, and Easton were actively fighting the fire, neighbors and friends were up and down the street, everyone seeing how they could help. The kitchen and living room were gone, smoke had been pouring out of the house; firefighters had to cut a hole in the roof to fight the fire which had spread into the attic. The cats did not survive the fire.

It was and is surreal. My parents bought that house in the late 1960s, it’s where my sister and I grew up, and all of our family memories have been, and everything my parents own. Displaced doesn’t begin to describe what they are going through.

And all this is the first part of companions on the way. From the firefighters, to the auxiliary, to concerned neighbors and friends, to people at Christ Church reaching out, showing up, bringing food, asking how to help; insurance companies helping with the process of next steps; real estate agents helping them to find a place to live for the the next year–it’s been companions on the way.

The view from the 12th floor at Johns Hopkins Hospital. Hope shining through clouds.

On Monday it was neurosurgery at Johns Hopkins Hospital. For the past few months, Holly has been struggling with Chiari Malformation, where the back of the brain blocks the spinal column. There were maybe three good days in 60+, taking someone who has been in great health and hitting her with vertigo, dizziness, skull-splitting headaches, nausea, no energy, not being able to drive at times. Surgery was the clear answer.

Companions on the way, part two. From family, to work, to friends, to prayer teams, to surgeons, doctors, nurses and medical staff, people showed up, and are showing up, to help, to pray, to bring food, to do what they can. We brought Holly home on Wednesday after a successful surgery, and recovery is underway.

A group of more than 100 bikers rolled up to A.I. DuPont on Saturday morning to drop off toys for kids in the hospital.

Part three. On Thursday, Ava and I made our way to A.I. DuPont Children’s Hospital in Wilmington. Her medicine has not been controlling her seizures this spring/summer and they wanted to keep her for an overnight EEG to monitor what is going on. As we checked in, we met a nurse practitioner who has worked in Easton and who has mutual friends. Talking to her and the neurologist on call this weekend, who is a specialist in pediatric epilepsy, someone who we had hoped to see but who has been scheduled too far out, they quickly asked if we could stay longer so they could cut back her medicine and work with some of her triggers so that they are more likely to be able capture some of her seizures to figure out the best course of action for her–whether surgery or different medications, or what.

So we find ourselves with a longer-than-anticipated stay at A.I. DuPont. We’ve watched the first Harry Potter movie and James Gunn’s new Suicide Squad (thank you HBO Max); Ava has beaten me multiple times at Connect 4 and I partially redeemed myself at Scrabble. She has a mummy headwrap on and the doctor said her EEGs are showing “sparks” (the conditions for/beginning of seizures) all over the place, much more than when we got here. So we wait, and oddly hope for seizures, knowing she is in good hands and that they can give the doctors here information that could hugely help her moving forward.

So that’s Sunday to Sunday this week. At every turn and at every corner, companions on the way have stepped up and made their presence known. Family, friends, and co-workers check in.

And I am carried by gratitude: for my parents both being okay after a devastating fire and for their finding a way forward to what is next; for Holly being able to have surgery to come back to herself and be healthy; for Ava being in great care and now on the radar screens of incredible doctors who have met her, are beginning to know her, and be personally involved in her case.

And for far too many companions on the way for me to name here. I feel frustrated for not being able to be in multiple places, this week especially, but can’t thank enough everyone who is there and helping.

Mountaintop Experiences

Sometimes hospitals can be mountaintops. Mountaintop experiences are those moments or experiences in our lives that rearrange things, change our hearts, bring us closer to God.

Two years ago today, while visiting her mom’s family in Pennsylvania, Ava had a seizure that led her to be flown by helicopter to Children’s Hospital in Pittsburgh. I was sitting in my sun room at home at 9pm, and got a phone call, and was on the road within a few minutes.

She spent 10 days in pediatric intensive care and all told about a month in the hospital between neurology and the rehab unit. After EKGs and MRIs and who knows what other acronyms, the likely diagnosis was that Epstein-Barr Virus had gotten into her spine, and caused her brain to swell and provoked that and subsequent and ongoing seizures. The doctors, nurses, and technicians at Children’s were rock stars, stayed the course and sent Ava home to conquer 5th grade. Since then, she has been on medication to manage her seizures and we have learned a bit about the world of provoked epilepsy. Ava’s has been a good story, with her making honor roll at school, playing sports, and living a mostly normal life, albeit mornings and evenings feeling like a pharmacy.

Mountaintops are what you make of them. The main thing I remember is the amazing support, prayers, good vibes and good deeds from so many people. It redefined what community meant to me. What Ava went through, and her attitude, and watching her come back to herself gave me a sense of gratitude I wouldn’t have come to any other way. It showed me first-hand, the way a community of people praying can change the heart(s) of the people being prayed for. I have been in a constant and growing conversation with God since (not that I always listen the first time or catch what He’s saying).

Yesterday’s Gospel reading and sermon at Christ Church Easton were about a mountaintop experience–Luke’s story of Peter, John, and James witnessing Jesus’s transfiguration, “And while he was praying, the appearance of his face changed, and his clothes became dazzling white.”(Luke 9:29). You can’t get much more mountaintop than that. I like how Frederick Buechner brings transfiguration back to everyday life:

“Even with us something like that happens once in a while. The face of a man walking his child in the park, of a woman picking peas in the garden, of sometimes even the unlikeliest person listening to a concert, say, or standing barefoot in the sand watching the waves roll in, or just having a beer at a Saturday baseball game in July. Every once and so often, something so touching, so incandescent, so alive transfigures the human face that it’s almost beyond bearing.”

When I think back to two years ago in the hospital and getting home, I have seen that look on a face. It was there in Anna caring for her sister; it was there in Ava getting home, excited to see her friends and start the school year. And because of that mountaintop experience, when I remember to look with the eyes of my heart, I see it now.