Remembering Karis, by Valerie Kornfield Schalm, Pittsburgh

But God’s grace is wonderful

Acts 20:24 But my life is worth nothing to me unless I use it for finishing the work assigned my by the Lord Jesus—the work of telling others the Good News about the wonderful grace of God.

Valerie posted this reflection yesterday on her Facebook page.

Nine years ago, we said goodbye to Karis Joy.

With our family gathered today, we lit a candle, said a prayer, and remembered Karis with gratitude and longing (saudades)!

Among other things, we talked about…

…how delighted she would have been to welcome Dan to Pittsburgh, and how she would have loved his new house – with the big picture window, the deck in the back with a beautiful view, and the spacious kitchen…

…how Mom and Karis used to plan escapes from Montefiore Hospital during her free time and have great adventures, Mom pushing her wheelchair and IV pole up and down the Oakland streets, to the library (she had to be taken back to the hospital by the police), getting shut out of Montefiore in the maze of underground passageways connecting the various Oakland hospitals, popping up once in the psychiatric hospital and being taken as one of their patients, taking tunnels or going overland to the Children’s Hospital to visit patients there, to the Phipps Conservatory outdoor garden, even making it through upper Pitt campus all the way to the Franzen’s house once…

…how vibrant and strong and full of life she was, vivacious, passionate, excited about a million plans and projects and people, especially in times when illness did not limit her as much…

…how the struggle of her decline was a combination of losing physical and mental capacity…

…how she tried so many times to fix Abuelita’s (my Dad’s mom’s) old piano and took it with her from South Bend to each of her homes in Pittsburgh…

…how her dreams sometimes seemed too lofty, but sometimes found serendipity, like when she planned a fundraising website for a program serving underprivileged children near our home in São Paulo, and received a donation of $10,000…

…how she loved to create and enjoy art, and took several of us to local art shows and exhibits…

…how my work is connected to her life, both in the PICU and with wound and ostomy care. I hope to honor her and bless other patients and families as I connect with them in times of need…

Karis, we love you and miss you! Thank you for the ways you continue to walk with us. We look forward to the day when our eyes touch again! 

A story in three parts

But God gives joy

Psalm 145:7 Everyone will share the story of your wonderful goodness; they will sing with joy about your righteousness.

Psalm 90:14-16 Satisfy us each morning with your unfailing love, O Lord, so we may sing for joy to the end of our lives. Give us gladness in proportion to our former misery! Replace the evil years with good. Let us, your servants, see you work again; let our children see your glory.

A couple of weeks ago, at the beginning of a small group meeting, the leader asked us each to share in one word what we were feeling. I surprised myself by saying “joy.”

Why is that worth telling you about? Isn’t that a fairly common experience?

Well, not for me, not at this time of the year.

Since 2014, the cold, dark, gray days have put a dragging sense of foreboding in the pit of my stomach. I know what’s coming. The constant struggle to keep Karis warm as she bounces in and out of the hospital. The quickly approaching end of November date the nephrologist gave us when Karis’s kidneys would stop functioning. Her increasing lack of strength and energy. Her most-of-the-night pre-Christmas conversation with Hildete, when she and Pastor Vandeir visited us from Brazil, about her death and how it would impact her family and all she had wanted to accomplish and her sense that the Promise and the Prophecy given to her at age 16 had not been fulfilled. The aborted trip to Florida when she developed a line infection the day before we were to fly. The wrenching I felt leaving her behind in the ICU. Her middle-of-the-night call, her hoarse voice barely audible: “Mama, please come.” The diagnosis of H1N1, swine flu. And all the events leading to her death in the wee hours of Feb. 5th, the roads so icy we couldn’t make it to the hospital for several more hours.

Every other year before this one, at this time of the year, I haven’t been able to shake the waves of grief associated with the holiday season. So, yes: for me, to realize I was feeling joy and anticipation instead of grief and dread was an amazing experience, this ninth year since it all happened.

My three-part story today is one of gratitude. The first part was the thirty years of life with Karis. The second part was the long grieving of living without her. The third part is the discovery that joy can take the place of grief. It’s such a hopeful feeling. I want to say to everyone grieving a huge loss, “Don’t despair! It may take a long time. Each person’s experience is different. But I know now it’s possible to reach the third part of the story, when tears flow out of deep joy and thankfulness instead of the deep pain of mourning.” I’m tasting the joy Karis herself feels now!

Turn toward, not away

But Jesus predicts hardship

Matthew 24:7-14, 20, 25 Nation will go to war against nation … There will be famines and earthquakes in many parts of the world. But all this is only the first of the birth pains, with more to come. Then you will be arrested, persecuted, and killed. You will be hated all over the world because you are my followers. And many will turn away from me and betray and hate each other. And many false prophets will appear and will deceive many people. Sin will be rampant everywhere, and the love of many will grow cold. But the one who endures to the end will be saved. … See, I have warned you about this ahead of time.

One reason Karis cites in her journals for wanting her story told is the prevalence in some places of a “health and wealth gospel,” the idea that if you have “enough” faith, God will make you prosperous and free of suffering. A message Jesus neither modeled nor taught. Karis reacted passionately against the implied judgment of this belief on many of her friends who were neither healthy nor wealthy but lived their lives of hardship in deep faith and joy in God’s love for them, measured not in gifts of the world but in gifts of the heart.

Karis’s journals, written over twenty years in her tiny script

One time when Karis was hospitalized as a teenager, suffering from uncontrollable diarrhea and dehydration that led to several months on TPN (nutrition through her blood stream), “chained,” as she said, to an IV pump, a woman we didn’t know showed up in her hospital room. The woman told me she had crossed Brazil by bus to deliver a message from God to Karis. She then turned to Karis, who was too weak at the time to stand, and demanded she confess her sins of unbelief, get out of that bed, and live the triumphant life of faith. “You are a disgrace to the Gospel and to God,” she shouted at Karis. “Shame on you! Shame on your family, pretending to be ministers of the Lord. Look at you, wasting resources on hospitals and machines and medicines. Unbelievers! This money should go to the churches!”

She walked over to Karis and yanked her arm. “Down on your knees now, you hypocritical sinner! Confess your unbelief! Then stand up and walk and end this charade!”

By then, of course, I was loosening the woman’s grip on Karis and escorting her to the door. “I have been obedient! I have delivered God’s message! The rest is up to you!” She was still shouting as I closed the door and ran to Karis, who heaved with sobs.

Later, when she was stronger, Karis spoke to me about the woman’s visit, with an intensity I had not seen in her before. “Mama,” she said, “that woman blasphemed my Lord. I can’t bear it.” She began crying again. “It’s not what she said about me—I can handle that. I know I need to grow in faith, especially in faith to trust him when I’m weak and in pain. It’s what she said about who God is, as if he hasn’t walked with me and loved me and comforted me and provided for me with such gentle tenderness all my life. As if his words to me every day—words of love and encouragement—are not true. That hurt me to my core. Mama, please don’t let such a thing happen again. I can’t bear it. It’s like a sword piercing my heart.”

Then her smile broke out. “Maybe that woman doesn’t know about the thousands of people praying for me around the world. They can’t all be as deficient in faith as us, right?” She giggled. “Well, I’m in cahoots with God. From now on, I’m going to pray for God to heal whatever has wounded her. I’m going to pray she can know how extravagantly her Father loves her.”

Perhaps in Heaven Karis has been privileged to know the result of her prayers for this woman whose name we never learned. Lord, if she’s still alive, please care for her.

Reading Matthew 24—which sounds all too sadly familiar, doesn’t it?—this is what caught my attention. “Many will turn away from me … and the love of many will grow cold.”

Love God and love each other (John 13:34-35). Isn’t that Jesus’ central message? A direct contrast to “betray and hate each other.”

When we turn toward Jesus, our love for him and for people grows. When we turn away from Jesus, the natural consequence is hatred and slander.

Let’s turn toward Jesus. Whatever the circumstances of our lives.

Hold tightly!

But God keeps his promises

Hebrews 10:23, 34 Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep his promise. … There are better things waiting for you that will last forever.

Matthew 28:20 “Be sure of this: I am with you always, even to the end of the age.”

One thing I enjoyed about having breakfast with our friends Mary and Bill was the “promise of the day” they read from a small card extracted from their “promise box.” I imagine Bill continues this practice even though Mary is not there to enjoy it with him.

The promise I most depend on is this one, the last words recorded by Matthew: “I am with you always.” Since Jesus is with me, I’m not ever alone. Everything I care about is under his care and sovereignty. And he himself is the fulfillment of all the other promises.

I want to tell you a “But God” story from last week that relates to this promise. The Karis book in Portuguese will finally be launched by Editora Betânia in Brazil on May 2, 11:00 Eastern time, through an Instagram “Live” @editorabetania. The book has been delayed by Covid, by scheduling issues, and by lack of paper for printing. Finally, though, it’s all coming together. You’re welcome to join us, though it will be in Portuguese!

With its own Brazilian-style cover and color photos inside!

Along with this exciting news, Betânia’s marketing director, Egleson, gave me a long list of tasks to complete. Since I’m not in Brazil, my part of the promotion of the book must be done virtually. It’s not intuitive for me! I had to learn to use Instagram and invite my Brazilian Facebook friends to follow me and Betânia on that site so they can attend the launch. I had to make videos and other posts that fit within Instagram’s parameters. (I know, it’s probably simple for you.)

I struggled one whole morning without much success with understanding a series of procedures new to me. In frustration I cried out to the Lord, “I need help! I need someone who can show me what I’m doing wrong!

Within seconds of my prayer, a message flashed onto my Instagram screen from a Brazilian friend I haven’t seen or talked to for at least twenty years. “Debra, do you need any help with online advertising for the Karis book? I’m trained in that.”

Yeah. I was (am!) stunned. But wait—there’s more!

When I told Vanessa her offer was a direct answer from God, she said, “Well, your need is a direct answer to my prayer. Last week I was diagnosed with metastatic cancer. I asked God to give me something to do to divert my focus from myself, my fear and worry about this health struggle. Then I saw your announcement on Facebook. I want to do all I can to help you let people know about this book. I’ve been reading other things I’ve found written about Karis, and her faith is helping to stabilize mine as I face a huge battle with cancer.”

My need is small. Vanessa’s is huge, literally life-threatening. That God could use us (and the internet!) to help each other is so creative and generous of our Lord. Could there be any greater confirmation that God is with me, even though this work is hard for me? That it is worth what it cost me and my family to write the book? At this moment, for me, I can’t imagine anything that would more effectively shout God’s promise, I am with you. And with Vanessa, facing the assault of cancer.

Many times, I have not felt God’s presence with me. I have cried out to him and have not seen such an immediate response. You too?

Yet our feelings don’t change the trustworthiness of God’s promise, for God cannot lie. He is with us, in our need, whether enormous like Vanessa’s or small like mine. Hold tightly, the author of Hebrews encourages us!

As if to put this word from God to me in bold and italics, yesterday in church we sang a song new to me. I hope it will encourage you as it does me.

Can you see angels?

But God’s world includes angels

Matthew 18:1-10 About that time the disciples came to Jesus and asked, “Who is the greatest in the Kingdom of Heaven?” Jesus called a little child to him and said, “I tell you the truth, unless you turn from your sins and become like little children, you will never get into the Kingdom of Heaven. So anyone who becomes as humble as this little child is the greatest in the Kingdom of Heaven … Beware that you don’t look down on any of these little ones. For I tell you that in heaven their angels are always in the presence of my heavenly Father.”

“An artist is one still able to see angels,” Madeleine L’Engle tells me in Walking on Water. “To be visited by an angel is to be visited by God. To be touched by an angel is to be touched by God.”

Shutterstock: melitas

Immediately, of course, I think of Karis. Dave joked as she was growing up that she needed two guardian angels, not just one, to keep her safe through all her adventuring and exploits. But in reading her journals, I discovered she had three, and often saw them and took comfort and guidance from them.

Those of us around her, intent on keeping Karis safe and alive, tried to limit her, because she seemed to have missed out on common sense. Where is the line between fearlessness and stupidity?

We thought, silly us, looking at all we had invested in her life, that she “owed” us this: to walk within boundaries of safety, to not risk her costly life on (to us) frivolous pleasures. I placed value on what it took for me and others to support her in her extravagant ideas.

But for Karis, every day of life was Gift. So many times, doctors had said her broken body could no longer support life, yet she lived on. This made her careless, or overconfident, or too trusting, from the point of view of us who did not see her guardian angels or accept her absolute conviction that she would live “not one minute more or less than God has planned for me.”

“Where is the line between responsible faith and reckless presumption?” I would ask her.

“Ah, Mama, you worry too much. No one has ever solved the dilemma of free will vs. predestination. You need to embrace the both-and, not try to reduce it to either-or.” A deflection. I was not comforted. I did not worry less.

So if an artist is one still able to see angels, in what ways was Karis an artist? I remember her economics professor at Notre Dame telling me that after he graded Karis badly on an essay filled with her customary multi-hued imagery and made her rewrite it in proper academic diction, she thereafter submitted two essays for every assignment: one she wrote for herself, and one she wrote for him. “Economics is about Life,” she told him. “I can only understand it in that context. Then I translate it for you into the language that makes sense to you.” His view of his subject was transformed.

And that’s what she did for all of us who paid attention. She taught us to listen, to see, to go deeper. To embrace mystery, rather than try to tame it. To touch Joy. And Freedom.

Ah, Karis. I’m so glad James sees you dancing. With the angels. With Jesus.

Therefore we praise you, joining our voices with angels and archangels and with all the company of heaven, who for ever sing this hymn to proclaim the glory of your Name: Holy, holy, holy Lord, God of power and might, heaven and earth are full of your glory.

Build each other up, by Rachel Myers

But God’s love keeps us safe

Jude verse 20 But you, dear friends, must build each other up in your most holy faith, pray in the power of the Holy Spirit, and await the mercy of our Lord Jesus Christ, who will bring you eternal life. In this way, you will keep yourselves safe in God’s love.

[A note from Debbie: After Karis died, we started collecting reminiscences people wrote about her in a memory book. In God’s exquisite timing, Rachel Myers just sent me her contribution to this book and gave me permission to share it with you as well. Holidays are challenging times for me, as I imagine they are for anyone who has lost a close friend or family member. Rachel’s thoughts came at just the right time to touch that tender part of my heart—an example for me of what Jude says, that as we build each other up, our hearts are kept safe in God’s love. Thank you, Rachel.]

When Karis passed, Debbie invited me and others she called friends to come and pick a piece of her jewelry to remember her by. I chose the most colorful one – a necklace of all sorts of tiny stones, in every shade of the rainbow. I never saw Karis wear it to my memory, but it reminds me of her because it’s so unpretentious and cheerful. My two-year-old daughter, Paige, loves to try on my necklaces and this one is a favorite of hers, too. It brings me joy to share it with her, though she doesn’t yet fully know why.

I knew of Karis for a while before I had the joy of knowing her personally. I could tell by the way folks mentioned her name in conversation that she had endeared herself to many. By the time I became her friend, she had already been quite sick for a while. The season for ambitious adventures was over, but Karis’s enthusiasm and knack for building meaningful connections was probably stronger than ever.

What I remember most about our times together is her earnest kindness, gentleness, and positivity. The daily obstacles she faced just to remain alive would leave many of us in despair, but I never heard her complain, even when she was clearly in pain. She was more content to listen than to talk. She would always end our chats by asking how she could be praying for me.

Karis made the most of what she had each day: whatever strength, time, and opportunities there were to serve those around her. She was a living example of the character produced by suffering. I work in a hospital where I meet many people living with chronic illness. Those on this path can choose to either feel bitter about what they’ve lost, or to celebrate what they have. I honestly don’t know how I will handle it when I’m faced with the same decision, but I’m slowly practicing for the latter.

Karis’s example continues to encourage me to cherish the opportunities for human connection that each day brings because they are so much of what brings joy and meaning. I have learned to relish chances to go deeper in conversations with my patients and to be a blessing to them. Karis certainly knew there is so much joy in giving!

I also am working to enjoy the moments I might otherwise take for granted, like when my daughter is asking me to show her all my jewelry for the hundredth time. None of us know what the future holds for us or for our children, but I sure hope to hold what I’ve been given with my heart and hands wide open, as my friend Karis did.

But God is with us, even in lockdown

Acts 28:30-31 For the next two years, Paul lived in Rome at his own expense, [bound with a chain to a Roman guard, v. 16, 20]. He welcomed all who visited him, boldly proclaiming the Kingdom of God and teaching about the Lord Jesus Christ. And no one tried to stop him.

Acts 16:25 Around midnight [in prison in Philippi], Paul and Silas were praying and singing hymns to God, and the other prisoners were listening … See also Ephesians 4:1, Philippians 1:13-14, Colossians 1:9, 24, 4:10, 2 Timothy 1:8, Philemon 1:1.

John Bunyan was arrested in 1660 and spent twelve years in jail for preaching about Christ. While a prisoner, along with other works he wrote Pilgrim’s Progress, one of the most read and beloved works in the English language.

Bedford UK 7/04/2017 A bronze statue of English Christian writer John Bunyan stands on St Peter’s Green, Bedford, England. The statue was sculpted by Sir Joseph Edgar Boehm, it was erected in 1874.

Three centuries later, in 1963, Martin Luther King Jr. wrote Letters from a Birmingham Jail.

Over his 27 years of imprisonment 1962-1989, Nelson Mandela wrote his Conversations with Myself, collected and published in 2010.

Any of these three, and so many others, could have broken under the stress of what they and their families suffered. Instead, like Paul almost two thousand years before, they used their time as prisoners to write.

Karis penned hundreds of pages from her own “imprisonment” in hospitals. Even when she could be home, unable to get away from the prison of her ailing body, she wrote precious words of encouragement to others.

Did you know that thousands of people have used Covid lockdown to write to write? Publishers have been flooded by this work. Last year, 100,000 titles were added to Amazon every month! Many artists created master works or composed music.

Covid lockdown hasn’t been fun or easy. For many people, it’s been awful. But people around the world have grown closer to the Lord through their time of isolation. Like Paul, they have responded with prayer and worship. Through the Holy Spirit’s empowering, they have boldly (Acts 1:8) shared the Gospel. They have taken time to reflect on their lives and have seen God’s faithfulness and presence with them even in their loneliness.

On this blog, since we entered “Ordinary Time,” we’ve traveled with Peter, Paul and others through Luke’s account of the Holy Spirit at work during the often stressful and painful earliest days of the Christian church. Luke concludes his book with the brief description of Paul imprisoned in Rome cited above. Did his life end there? Many people think not; see, for example,

There’s so much we don’t know, because it wasn’t written down or what was written wasn’t preserved. I take from this once again the encouragement to Remember and Tell what we notice God doing in our world, in our generation. I’m waiting for your story! How has God been at work in your life? I would love to know!

Let’s take for ourselves these words Paul wrote to Timothy from prison in Rome: God has not given us a spirit of fear and timidity, but of power, love, and self-discipline. So never be ashamed to tell others about our Lord. … Keep a clear mind in every situation. Don’t be afraid of suffering for the Lord. Work at telling others the Good News, and fully carry out the ministry God has given you (2 Timothy 1:7-8, 4:5).

But God protects

Acts 26:21-22, 30-32 [In his defense before Governor Festus, King Agrippa, and his wife Bernice, Paul said] “Some Jews arrested me in the Temple for preaching that all men must repent of their sins and turn to God, and they tried to kill me. But God has protected me right up to this present time so I can testify to everyone, from the least to the greatest …” Then the king, the governor, Bernice, and all the others agreed, “This man hasn’t done anything to deserve death or imprisonment.” And Agrippa said to Festus, “He could have been set free if he hadn’t appealed to Caesar.”

Sometimes, God uses what seems to us flat out wrong for our good and to accomplish his purposes.

Karis recognized this—eventually. For a long time, her goal was to live in sub-Saharan Africa to work as a journalist in defense of women’s rights. She designed her own major at Notre Dame to that end, including study of Arabic and French. She never made it to Africa. She was crushed when her doctors said, “Absolutely no way.” She described herself to me as a prisoner of her body and of those who cared for it. During her last years, she seldom made it out of Pittsburgh. We were thrilled when she could be home from the hospital from time to time.

But God brought Arabic and French speakers to Karis, not just from Africa but from Middle Eastern countries as well. Her chief surgeon was Egyptian and attracted to Pittsburgh intestinal transplant patients from across the Arabic-speaking world. They found here a small blonde woman in a hospital gown toting an IV pole just like theirs, who spoke their language and loved them.

We were both pretty tired when this photo was snapped!

Paul spent two years (!) as a prisoner in Caesarea, first under Governor Feliz and then under Governor Festus. During that time, he was brought out to testify multiple times, although all the Roman authorities agreed he had done nothing deserving death or imprisonment. Ironically, God used his captivity to protect him. Had he been set free, his enemies would have killed him. Instead, (spoiler alert) he will travel to Rome (Acts 23:11) under the safety provided by Roman law to its arrested but not-yet-tried citizens.

A Brazilian idiom says, “I was happy and didn’t know it.” Are you dealing with constraining, unjust circumstances? Sometimes what we most struggle against, God uses to protect us from greater harm. One day, we’ll understand it all, from the perspective of the One who loves us more than we can comprehend.

Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take. Proverbs 3:5-6

But God compels

1 Corinthians 9:16-17, 26 Yet preaching the Good News is not something I can boast about. I am compelled to do it. How terrible for me if I didn’t preach the Good News! I have no choice, for God has given me this sacred trust…I run with purpose in every step.

Paul was compelled to preach. I feel compelled to write. What sacred trust has God given you?

“This one’s a fighter.” The veteran nurse smiled back as Karis gurgled and grinned, enjoying her bath. “That’s why she’s still alive, not all this paraphernalia. I’ve not known another baby so passionate to live. Don’t lose sight of HER in the middle of all this medical stuff.”

The nurse showed me how to navigate with soap and water between and around the ileostomy on her Karis’s tiny tummy, the Broviac catheter coiled on her chest, the naso-gastric tube emerging from her nose and taped to her cheek.

Hiding most of this under a frilly dress, and taping a matching bow to her bald head, the nurse said, “Go home to your little son. He needs you too.” She settled Karis into a stroller, grasping her IV pole with one practiced hand. “I’ll take Karis around with me to cheer up the other patients.”

At PACA, her school in Brazil, her shirt covering the central line through which she was fed every night.

LIFE in capital letters compelled Karis. On her birthday yesterday, I reflected on how apparent this was even at a few weeks old. And how her bright smile continued cheering others for the next thirty years, years the doctors told us she would never live. “Unplug everything and let her die now,” they told us. “That’s the merciful thing to do for her.”

No. God knew we needed her smile, even through the tough times and the pain. Her zest for life invigorated us. Again and again after that first time, God’s restoring touch reached down to meet her heart’s thirst for more, more of this life, more time with her Beloved, as she called those she loved (virtually everyone who crossed her path). Until finally, she said, “Father, take me Home.”

And now she is truly living LIFE. I imagine her joy and enthusiasm infecting everyone in Heaven as she welcomes more of the Beloved into her Father’s home through these Covid months. Crooning cradle songs in Portuguese over more than two thousand babies dead from Covid in Brazil, but growing up now well and strong. I see her delighting in Jane Pool’s stories and finding just the right shade to paint our dear Alicia Helmick’s nails, wearing one of a collection of brightly-colored shirts saying “Been there. Got the T-shirt.”

Comforting the hundreds of pastors from across Latin America taken as they steadfastly cared for their people: the Good Shepherd will raise up others to love their congregations and their families. Listening intently as those who found life too hard on Earth pour out their stories and find healing in the presence of the Lord . . .

She’s busy. She’s well and strong. Happy. Thrilled with LIFE.

And I miss her.