Harder than Anything I've Ever Done

I've done a lot of hard things in my life. Most of them were things I didn't realize were hard until later when someone would say, "That must have been hard." I didn't notice - just kept plugging away knowing that with some persistence, patience, and ingenuity things would get better some day. 

But this thing I'm doing now - harder than I ever imagined. It's not fun. It is not satisfying. And it has no hope for a great outcome - at least not by anything I can do. The day it gets better ... well, I cry when I think about that.

I ... we ... live in a most generous community. Without them I would be a major mess. 

If you've been following our journey, you know that another tumor grew in Michael's brain and was removed Sept 1 last year. He hasn't been the same since. The whole tumor was not removeable. (The first time around they got the whole thing.) This time they had to "nick" some of the viable brain in the process of getting out what they could get out.

Recovery was slow. He had intention tremors in his legs that landed him on the floor daily until we (Amira and I) learned how to pay attention and place chairs strategically around the house that could be whipped behind him when we saw trouble coming. 

He has recovered to the place where he can walk around the house without even a cane. The tremors are gone. 

He can hear and understand everything that goes in his ears. He sleeps a lot. Maybe he's depressed. I know I would be. He watches stuff on the tv. Just watches. No comment, no annoyance, no excitement. He can answer yes/no questions effectively - except sometimes he says no when he means yes. He sometimes makes full, coherent, and correct sentences. He can tell you what position he played in high school and college when he played football. He can tell you the names of his teammates and friends. I tell him, "I love you". He says, "That's good". I laugh. Then turn away and cry.

We haven't had a conversation since mid August when he had a grand mal seizure. 

He is comforted by scripture. He likes quiet music. He drinks a lot of chocolate-banana smoothies and still likes potted-meat sandwiches. 

This is just the longest, hard journey I've ever been on. 

I am comforted by music, scripture, friends, and family. Our kids have all been to visit. Amira still lives with us (except for the three weeks we're in the middle of, while she is in Portugal helping a friend with a newly purchased house there). 
I've been preaching at a church down the mountain from here. The preparation keeps my mind off other things and points to Hope. And I preach at Michael's churches sometimes now, too. He's on permanent disability. We've been welcomed to stay in the manse as long as we need to. I'm grateful. 

Michael still receives treatment - chemo therapy in tablet form that he swallows once every 6 weeks as long as it works and an every-three-week IV infusion that constricts the small blood vessels in order to starve the tumor and help the chemo work. The treatment is tolerable - no nausea or hair loss. I don't know if it causes brain fog or not, but it's not interrupting life for him, like it does with many other types of cancer treatment. 

He asked me on one of our drives to get the IV infusion: Are we interrupting God's plan? 
I didn't answer. I don't know.

This is harder than anything I've ever done before. 

I appreciate your prayers, your emails and cards, your friendship, the meals and other support you all have provided. It's God's gift to us.

Thanks

  

Keep On Walking

I came back to our rental apartment in Durham, having spent the day sitting beside Michael who was a day past brain surgery to remove a recurrent tumor from the front of his head.

As I kicked off my shoes and sank down on the chintzy cloth-covered couch I heard a deep groan and a wail. Where did that come from? Except for me the apartment was empty. It must have come from a place in me I didn't know existed.

Man. This is a hard road to navigate. I had kissed Michael good-night and told him, “I love you”. He had looked at me with blank eyes. “Do you love me?” I had asked him. A monotone voice replied, “Yes, I love you.” I guess it was just too much that day. I sat crying. Loudly. Hoping no one in the other apartments was listening. Knowing Someone was.  

Most days I breathe deep. Sometimes those deep breaths turn into rock-heavy sighs that land with a thud in the bottom of my gut. My eyes brim over moistening my cheeks.  

My cheeks are probably marked with a permanent salt stain.

I have recently been listening to the music of david m. bailey David grew up, like me, the child of Presbyterian missionaries. I followed news of him as he fought brain cancer for nearly 14 years. He documented his journey (not exclusively about brain cancer) through music, but I didn't want to listen to it because it might make me cry. Now I listen. And cry. Of course, it's not all sad songs. A few weeks ago I nodded my head as I listened, and listened again, to Keep on Walking. And I said to myself, "yes. I need to keep on walking." So I have moved forward with the work that I have heard God ask me to do.

I'm starting slowly and locally. A group of five friends asked me to walk them through a program of trauma healing. We have started meeting weekly and will walk through the American Bible Society's book Healing the Wounds of Trauma: How the Church Can Help. For me it is a sort of practice - how to work with people who clearly understand English and need no translation! And of getting back onto that path.

If I am going to do this work fully, I am going to need your help. If you want to help, you can commit to praying for me, you can check on me to see how it's going and if I keep on listening to God's voice through it all, and you can drop a couple dollars here. I hope to raise enough to make this my full-time vocation for the next few years until I can retire. My hope is to work with Ethiopians and South Sudanese who have moved to the US in recent years, but that will involve more travel than I am free to do right now. That time will come, though, so if you are amongst those people or know some of them, let's talk. Who knows what God will do?!

three weeks post-surgery

This has been a hard couple of months. Michael's recovery from surgery has taken more time than it did after the first one. He has not been able to put together enough sentences to make a paragraph. Seizure activity in his brain has thrown him to the ground several times. We now have chairs strategically placed between where he hangs out and places in the house he wants to go to within our house. He has a cane, a walker, and a wheelchair and uses whichever one he needs at the moment. I am on constant alert, listening to every noise in the house when I'm not sitting beside him. We hold each other tighter than usual and tell each other I love you more often.

But what a blessing to have Amira, our daughter, with us! She has moved in and has started making this house look and feel like a home! Her presence makes it possible for me to run to the store or to the dentist. She's a joy to talk to. She even likes our dog Gabi! She's looking for paying work - and finding it pretty quickly. She's an Amira-of-all-trades and pretty good at everything she does. She'll stay till she goes somewhere else sometime. That's the plan for now.

 

Today I woke up discouraged. My prayer has been that God will allow Michael more days (weeks? months?) of productive work telling God's message that he is so good at doing. But the thinking process has prevented that. Until today. This morning after listening to our usual devotional podcast, he asked me what I thought. I was surprised, because he hasn't asked that for a very long time. I told him my thoughts and then cautiously asked him about his thoughts. What a joy to hear him tell me clearly and coherently what he has been thinking for these many weeks since the tumor returned in late July. He admitted that he was very discouraged, that he felt abandoned by God. And we talked about that for a little and then prayed together. His voice was stronger than I've heard it for a month. And his prayer was beautiful!

when we're all too busy to play

Thank you for walking together with both Michael and me. Thank you for lifting each of us up before the Throne of Grace, because sometimes its hard for us to do it ourselves. And I thank God for staying beside us, for giving us strength, and for what appears to be another miracle in the making. I thank God for all of you.

Three Things

 

Thing Number 1:  A Request from an Unlikely Source

About a month ago I received a very encouraging email from a colleague and friend in Gambella, Rev. Gnigwo Omod, the president of the East Gambella Bethel Synod (EGBS) which is made up mostly of Anywaa people. The West Gambella Bethel Synod (WGBS), whose offices are on the other side of town, is headed up by Rev. James Gatdet Tang and is made up mostly by Nuer people. 

If you've followed our work very closely, you know that the Anywaa and Nuer are frequently in conflict for reasons that are sometimes clear and sometimes not. This conflict has been going on for generations. Anywaa and Nuer rarely stick up for each other for any reason. There is a lot of jealousy and finger pointing in both directions. 

Gnigwo wrote regarding two issues. The first was a notification that the Nuer community had been attacked during a spiritual conference (much like a tent revival meeting) organized by the women of that area. He asked for prayers for the Nuer community.  A neighboring people group, who are notorious for such attacks on both Anywaa and Nuer, raided the area during the meeting, killing several people (mostly women) and injuring many others. In addition, he requested prayer for peace and reconciliation in the area and for the strength and courage for the church leaders in doing their part. 

Revs. James Gatdet Tang & Gnigwo Omod

Secondly, Gnigwo made a request on behalf of the WGBS for funds for the purchase of a Toyota Land Cruiser. This has been a need for many years. The one that synod has is more than 20 years old and is hardly worth repairing any more, because the repairs cost more than you would pay for a new car in the US. The Outreach Foundation has agreed to collect donations and send the funding on when it reaches the amount needed. I hesitate to tell you how much is needed, you will be horrified and maybe scared away from donating.  ... minimum $60,000 for a used one; it would be better if they could buy a new one - more than twice that amount! Would you consider honoring Rev. Gnigwo's selfless request by making any small or large donation to help carry on the work of the WGBS. 

Since they have no useable vehicle, Rev. James must beg a ride from another organization in order to make a pastoral visit to the community grieving the loss of so many people. Click here to give online and to find mail-in directions. Make a note on your check that your donation is for "WGBS Vehicle" or at the bottom of the online site check "other" and write that in.

And please do remember the Gambella region in your prayers. Violence continues to disturb the peace in Gambella town as well as the surrounding area. There seems to be no solution. We know that Jesus is central to any possible solution.

Thing Number 2: Rachel's High Adventure

I learned from my dad that life is always an adventure, but when going to new places and doing new things (like getting ice cream at a place you've never been before!) it's a High Adventure! I am in the process of starting a High Adventure.

Gabi & me off on another Jeep adventure!

For six months, I tried working at a local hospital - just to have something to do, to see if I can still do "American nursing", and to have some spending money. That zapped my joy and took up more time in the week than I had to give. So I sat down and talked to God who pointed out to me that I have gifts and training that fit a special need in the US. 

You are well aware, I'm sure, that there are many African immigrants who have come to the US to escape all the problems of their home countries and villages. What is very evident, though, is that those problems don't just drop off at the check-in counter for their flights out. Immigrating to the US is a lot harder than it might seem and when a person arrives carrying the baggage of years of turmoil and poverty, life in the US can be unbearable. 

As a Master Equipper in Trauma Healing, I am trained to bring people together to do part of the work towards healing those pains. I am now in the process of becoming a Bridges Leader to do just that as a vocation. Bridges is an organization that will help me to work through my own non-profit, which I haven't named yet! It will mean some travel to places like Nebraska and Minnesota, where there are many Nuer and Anywaa immigrants. It will probably also mean zoom meetings. 

In addition, there are people closer to where I live who have been affected by similar trauma. The opioid crisis hit the region of southwest Virginia where we now live very hard. Where coal was once a major industry, jobs are scarce now. I hope to connect with people here trying to put the next foot forward towards living a productive and peaceful life again. 

Obviously, I haven't worked out the details, yet, but this is the High Adventure I'm preparing for. Of course, I will need funding. I'll get back to that next time! And a lot of what I do will depend on how "Thing Number 3" progresses.

Thing Number 3: A Couple of Tumors

Having been completely symptom free and having always had "perfect" MRIs for

With hair again!

the past two years, we were surprised by the two small white blobs that showed up where they don't belong in Michael's brain this week. He is still symptom-free. We give thanks for that! And we give thanks for the progress in the medical and scientific understanding of our bodies that were so wonderfully and fearfully made. 

Over the next several weeks he will undergo a biopsy, treatment with chemotherapy, and surgery to remove what doesn't belong in his brain. The Duke Hospital doctors are hopeful because the tumors are still small and not "reaching out" (yet). 

Once again sadness overwhelms without knowing what, exactly, we are sad about. Our plans are all tentative. And yes, they are for all of us, but - no, it's not quite the same. We both rely on God's strength and love. Your friendship and care helps a lot.

Thanks for sharing our story.

Hope for many more First Days

So how does one (or two) live with the threat of a major unwanted life-change hanging inside one's head for a year and a half? It's been 19 months since that first day of the rest of our lives. I haven't been very good at writing about it. It's different for each of us. It's different for our children.

One day last Spring on a cool morning I looked out the kitchen window and saw Michael sitting in our back porch quiet place, one of the several prayer blankets we've been given around his shoulders. He was staring up at the big oak tree between our house and the church next door. It's leaves were fresh and green except for the large bare branch that needed to be cut out. He later told me he and the tree were having a conversation. (Didn't surprise me. On our first date he stopped to talk to a lamp post on a Cairo street. And trees in Dembi Dollo answered him back ... he said.) They had something in common - something dead inside each of them that needed to be cut out. And he talked to God about it, too. It was from that moment that Michael felt the assurance of God's peace about whatever happened. All fear vanished from his mind and heart. He felt the warmth of the blanket around his shoulders as if God had put it there and embraced him. 

I am not nearly so spiritual or romantic as Michael. Way too pragmatic, probably. I have always dealt with each of life's turns navigating each pothole as necessary and looking for the straight-aways before accelerating. With each chemo treatment and each MRI, I paid attention to see what the side-effects and the report was going to be before getting anxious. And each month the MRI reports were good and the chemo was manageable by not planning too much and sleeping a lot for a week or so. I grew up knowing that my life was in God's hands and I just expect it to stay there no matter what happens. Fear has never been a very active part of my emotional make up.

Sadness, though, is something else. The thought of a life-change that involves significant loss makes both of us sad. Never, however, at the same time. We feel it in different ways, at different times, and, of course, about the prospect of different losses. Over the months we have both had days where we just sit and cry even though there's nothing to cry about ... yet. And we wonder about the future.

Last week Michael took his last trial vaccination at the Duke Brain Cancer Center in Durham, NC. And two weeks before that he took the last of his chemo treatments. On March 1st he'll have his "end of treatment" MRI. And we will wait to see how long the treatment will hold. The Physician's Assistant who examined him last week, encouraged us by letting us know that there are those who have survived a couple decades. And we know one person who lived 14 years. 

As we drove back up the mountains from Durham, Michael committed to hanging on to that Hope. With no monthly interruption that will knock him out of commission for several days, we can anticipate and plan to do interesting and fun things on days off. We're even working on planning a vacation! That will have to be done between MRIs, which we anticipate to be scheduled every 6 or 8 weeks; but that's plannable. 

We Hope that each day we have together will be memorable and will be the beginning of many good things. 

It is a great pleasure to have you on this journey with us. Thanks for the prayers and love that you have shown us in so many ways.

Roving Around to the Ends of the Earth

 I arrived in Addis on a Sunday morning. By the time I was settled in my guesthouse room, I had already been contacted by former Gambella mission friends who have now relocated to Addis. I hired a taxi to their house for a wonderful Sunday dinner and lots of reminiscing and talking about how to do mission best (or at least better). Monday, I visited with another mission friend, who is also a friend from school days in Addis. No shortage of things to talk about there, either! 

And then on Tuesday I arrived in Gambella to the house we left 2 1/2 years ago where some of our stuff is still, and more importantly, where many friends still are and will be for many years to come. I reunited with my  not-actually-adopted Oromo "grand-daughter", Meraaj, and her parents and brother, and enjoyed a good home-cooked Ethiopian meal complete with Ethiopian coffee, fresh roasted and ground! The best!

The next morning I was told we would leave "early" to go to Burbei to attend the West Gambella Bethel Synod Annual Convention - a gathering of all the presbytery and synod leaders to manage and organize the work of the church. I woke up at 7 and figured I had at least an hour, so I got a cup of coffee and got my stuff together and by 9 someone came to tell me we'd be going soon, so we'd go get some breakfast together first. We walked to the hotel, ordered and ate breakfast, walked back, sat and talked a while. The car came and we were on the road at 12:30. The five hour drive to Burbei was uneventful with the exception of one easily fixed flat tire. 

Arriving at the church where we were to spend the next four days, we extricated ourselves from the truck and began unloading our stuff from the back, and suddenly there were people grabbing our stuff and running and dancing with it across the field to the gate of the church compound. At the gate of the compound the women of Burbei Presbytery greeted us with the traditional feet, arms, and head washing along with lots of singing and laughing. 

I emerged fantastically welcomed!

First things first - all the travelers and welcomers gathered at the meeting place to give thanks to God.

Then we went to settle our stuff in the places where we would be staying for the next few days. I put my stuff in the "bileh" (a temporary shelter), where it would be out of the weather, and set up a mosquito net where I would lie comfortably on a mattress looking up at the stars until I fell asleep. Nights were cool - down to the low 70s (Fahrenheit). I would cover up with a doubled over sheet.

As more participants arrived there was more singing, dancing, washing, and praying throughout the evening. The meetings started after a communion worship service the next morning. 

Michael and I have been to several of this kind of meeting. For me, they are wonderful days of fellowship and camaraderie along with the necessary business of church organization. We are invited guests, with no voting rights or responsibilities, but are given the chance to comment on various topics that come up. I don't understand nearly enough of the Nuer language to follow the discussions without interpretation, but I enjoy listening to decipher words I do know and try to figure out some I don't. I'm not sure Nuers actually speak their language - they swallow most of it, as far as I can hear. But laughing and joyful singing I can understand clearly - and that happens a lot! 

The "Convention Center"

The meeting was conducted tactfully by Rev. James Gatdet Tang, the synod president. The organizers made time in the mornings (5:30!) and evenings to pray for the meeting and participants. There were few disagreements, few tough decisions, but even the one that could have erupted in anger was well-managed because of the time dedicated to prayer and the wise leadership skills of Rev. James. Several years ago, Michael and I attended the first annual synod convention led by Rev. James. At that time the synod was struggling to meet all its financial responsibilities. Rev. James explained the process of keeping accurate records and making appropriate contributions up the church chain so that the work the members expected could happen smoothly. At that meeting there was a lot of animated discussion and not everyone left in full agreement. 

This meeting was very different. Most presbyteries are understanding the need for and the method of counting, collecting, and dispersing that serves the needs of all church workers. Presbyteries were given awards for meeting goals and for making attempts to meet goals. The participants left with a sense of accomplishment. 

Burbei Presbytery is on the western edge of Ethiopia, right up against South Sudan, after the asphalt road ends. It is one of the most desolate places I have ever been to. We ate fish. Nothing else is locally available. Some of it was fished out of the river a couple miles away and some of it was dug out of the mud where they were "hibernating" (is that what they do?) until the rains start again and the river rises over its banks. It was boiled or fried or made into a stew and was served with corn porridge made from dry corn brought from Gambella or a couple times with fresh corn brought from the river banks. The corn was ground on a stone at the "convention center". 

Burbei is one of those areas where any sickness is possibly fatal. Clean water from the borehole is a hot 30 min walk away and even hotter and more tired return with a full 25 liter jerry can on her head. No one complains. It's life. During the meetings a woman fell over with exhaustion with a fever from malaria (probably). I gave her the round of malaria medicine I carry with me just in case I get bit by a mosquito on my way back to the States. A million dollars couldn't have bought it for her - it simply is not available in Burbei. I'll get a replacement for less than $1 before I return to the States ... just in case. 

Next week I'm hoping to have some time with the East Gambella Bethel Synod and my Anywaa and Majangir colleagues to talk about their work and how I can continue to to support them.  But for the next few days I will be figuring out how to get Michael's books into suitcases without going over the airline weight limit - they're huge theology books and only a few of them take up half the allowed weight of one piece of luggage. Maybe I'll use the other half for hand roasted coffee. That should work.

The village outside the convention center.
The cows came home - as they do every night.

Raveling Back

When there's a pile of unraveled yarn or thread in my project basket, it means my mind has not been able to focus on what I'm doing. Life has been uncertain, ideas are running in and out of my brain, I'm mulling over plans, hopes, and needs and haven't found any answers. 

So there have been a number of unraveled projects in my basket recently.

Not sure if this is my mind or a knitting project.

Then a conversation with a friend and a simple suggestion about just doing what needs to be done put everything into perspective and I got my act together and re-instated my ticket. I'll fly out of Durham, NC on Sat morning. I'm feeling a little more focused.

Michael and I drove to Durham on Tuesday for his most-of-the-day appointments at the Duke Brain Cancer Center. Even as I was booking my tickets I wondered what the test results and doctor consultations would reveal and if I'd have to change my plans. There hasn't really been anything to indicate that we'd hear something unexpected, but, well, you know ... that worry is always there.

If someone was looking at his MRI and bloodwork with no knowledge of the history, they'd wonder what any one is worried about! Once again, God has kept the miracle going. Michael's got a beautiful brain and his bloodwork shows no damage from the monthly chemo. So the monthly chemo at the envelope-pushing levels continues and we continue to be overwhelmed by God's grace and kindness to us. 

And I just got a negative covid test, so tomorrow morning I'll get on a plane in Durham and fly to Washington, DC where I'll get on the Ethiopian Airline flight to Addis Ababa. 

I'll have enough time to finish a whole sock.   

After a couple days in Addis I'll fly to Gambella where I'll spend most of the next four weeks. 

And what will I do there? That is the question.

My priority is to deal with the stuff we left there. It's not a lot, but decisions need to be made. 

Between sorting, thinking, and disposing of, I will be visiting with friends and colleagues and discussing ways that I can be involved with the ongoing work of the church in Gambella. 

The first thing I'll be doing, though, is taking a road trip out to the edge of Ethiopia to participate in the West Gambella Bethel Synod yearly convention, where the leaders from all the presbyteries come together for business and fellowship. It is always held on the grounds of one of the synods. The Youth usually put up shelters - one for each presbytery - to be used to keep stuff in and to sleep in for those who want more protection than a mosquito net. I'm hoping to find the small tent Michael and I left. Or else I'll get a mosquito net.

This is one of the gatherings I look forward to. There is always so much joy and delight. Lots of singing. Sometimes there is a fight - when church leaders don't agree - but laughter is most common. 

I hope I'll be able to have a strong enough internet connection to keep you updated more frequently than usual. 

I am sad that, for the first time, Michael and I won't be returning to Ethiopia together. But I'm glad that, at the end of my trip, I'll be returning home for the first time ever. Now to figure out how to live in my two homes at the same time.

Thanks for your accompaniment. Thanks for the prayers. 

Rejoice with the Rejoicing; Weep with the Weeping

 

Have you ever been so overwhelmed by God’s goodness and mercy that you were left speechless?

Surprising as it might seem, the excitement in the exam room a month ago, left Michael … and even me … speechless. 

Michael, as you know, is part of a vaccine trial at Duke University Brain Cancer Center. They only see people who are dealing with brain tumors.  We go monthly. The routine goes like this: a tech meets us at the door and escorts Michael to the scales and BP cuff and takes all his vitals, then a nurse escorts us to the exam room where she asks all the questions about how he’s been since last visit, then a nurse practitioner comes in and goes over the day’s lab work, does the neuro-checks (you know: touch your nose, walk heal-toe without falling over, subtract by 7s ...)  and shows us the MRI. She then goes and consults with the doctor, who comes back in with the nurse to reiterate what’s already been said by the NP and make sure we understand the next steps. This time, though, it really felt like the doctor just wanted to be in on the fun – yes, fun! 

The nurse practitioner said, “We rarely see MRI’s this good.” Then when the doctor came in, she said, “You know what all the excitement was out there just now? We were all talking about how your MRI is the best one we’re going to see all day, or longer! Look! What was a small spot last time, is hardly a shadow now! And there's no sign of any new growth anywhere else!" 

And Michael and I just sat there. Yes, it is all so very overwhelming. Exciting. And overwhelming.

 And then, later in the week, we received the news that a friend and supporter, whose wife has been to Gambella to talk with me about health work there, died ten months after being diagnosed with the same kind of cancer.

And so our excitement is tempered. We are humbled. 

In the midst of our joy, we mourn with our friend. We mourn with our other friend, whose wife “received her eternal healing” from cancer, (as her husband texted me) just a few months ago. We mourn with so many others who do not receive a miracle, who struggle with daily problems of life, who seek relief from endless burdens, whose loss seems overwhelming.

Long ago I stopped looking for reasons, reasons for miraculous healing, reasons for death too soon, reasons for trials, reasons for amazing blessings. Together, Michael and I persist in our assurance that God is good, that God hears our pains, that God weeps with us and comforts us and gives us strength. And that God smiles and dances and rejoices with us when we are joyful. We persist in our attempts to show our gratitude for all good things by, as faithfully as we know how, doing what God has for us to do. Sometimes our work is to cheer each other on in joy and sometimes it is to sit quietly and mourn together for what is lost.

We are thankful for scientific knowledge; we consider it a gift of God. We are thankful for the opportunity to benefit from some of the most advanced medical knowledge regarding the cancer that invaded Michael's brain. 

Michael will continue with monthly chemotherapy (tablets at home) and immunotherapy (injections at the brain cancer center) for the next year. He will be on the highest doses of chemo possible “because he tolerates it so well”. He tolerated one of those highest doses in January and will take the next series in a couple weeks. It is timed so that his worst days fall between Sundays so he is able to look strong in the pulpit every week!

Thank you for your support in the many ways you have shown it to us. All the notes, cards, calls, emails, visits, and prayers sustain us. We thank God for each of you.