24 ~ (January 2006—May 2007)
The Tabernacle
The problem with pain is that it hurts so much.
It hurts so much that we do all kinds of things to avoid letting ourselves feel it. Especially when it goes on and on and on, with no end in sight. And when there seems to be no apparent purpose to it; when it doesn’t make sense.
During periods of intense, ongoing emotional pain, I have to know that God’s Presence is with me. I have to be able to throw back on him my anxiety, my worries, my weaknesses, my inability to make sense of life. I have to play “straight up” with God.
And that means that I have to be able to see through all of the different faces that pain wears in its great masquerade to avoid being acknowledged, expressed, and named, so that God in compassion can release me from its tyranny. Faces like anger, depression, bitterness, the temporary refuge of childish helplessness and dependency. Complaining, and blaming, and self-pity. Brittleness, irritability, reactivity. Desperation that leads to harmful ways of trying to feel better. Making people around me suffer. Or super-spiritualizing—that’s a handy false face for someone like me who has grown up speaking “Christianese,” but it actually keeps me distant from God.
Unless I want to—once again!—get trapped in one of the dead ends that any of these false faces leads to, I have to be able to say, “This hurts more than I can handle, Lord God. Help me! Let me know that you are with me!”
He has all kinds of ways of letting me know that he knows, understands, cares, and is actively involved with us. So often he does it through other people. Watching for how he does it can become a great sleuthing adventure. His interface with my experience challenges my preconceptions and prejudices and keeps blowing apart my efforts to make life fit into neat, tidy, closed, predictable little boxes.
What I’ve tried to do in this book is bear testimony to God’s faithfulness to us in our desert, working his goodness into and through and around what we have suffered. Here’s just one more little example of how God’s glory—his Presence—can break in like a laser, cauterizing my pain, or unmasking my dysfunctional reactions, or blasting my attempts at facile categorization.
One day in Karis’s hospital room, after watching the news, I was holding forth to her about the irony that a few blocks away from us, Pittsburgh’s Islamic Center was enjoying all of the protections afforded by American law, while around the world Muslim violence was erupting—killing, terrorizing, destroying property.
Karis tried to tell me that someone else’s wrong belief or choice doesn’t justify reacting in kind. How can it help to take on the same attitudes that we’re so quick to criticize? How could I generalize from terrorists to individual people living in Pittsburgh? Generalizations almost always break down, she told me, when applied to individual cases.
I was counterdefending my soapbox when there was a knock, and a head timidly peered around the door. A head draped with the same fabric that covered her down to her feet. An individual case. A friend of Karis’s.
“I’m sorry—I won’t stay long, and I won’t come again. It’s too hard for me to be in a hospital. Too much happened before in hospitals with people I loved. Karis, I just had to come once, to see you, to be with you, to touch you. I want you to know that I love you and care about what is happening to you. I can’t handle reading your website but I do let people tell me what is happening.”
We couldn’t see her tears, but we could hear them in her voice. Quickly gripping Karis’s hand, she was gone. As quickly as that, my worldview was changed, more profoundly than any number of rational arguments could have accomplished. Moreover, God’s Presence lingered palpably in that room, challenging us, encouraging us through the courage of Karis’s friend, comforting us through her words of love.
God can express himself in any way he chooses. This was my challenge through 2006, to hear what he had to say to me, to seek him in every situation. Although the transplant surgery in January was quite dramatic, during the rest of the year, God’s Presence with us seemed quieter, richer, calmer. Karis’s roller coaster still led us through shocks and surprises, but it seemed to travel, on the whole, more gently.
The doctors thought our golden girl had perhaps three months to live when her five-organ transplant was performed on January 10th and 11th, 2006. She spent the next seven weeks in ICU, then eight weeks on 7 North, then two months in the rehab hospital, altogether a huge investment of resources to preserve one little girl’s life. (Day-to-day details are recorded on her website. By now you have some idea what that might have been like.)
By July, my emotional resources were scraping bottom. God gave me places and people over the next few months to help me recuperate. “He leads me beside the still waters. He restores my soul . . .” During the next months, other members of our family also manifested signs of distress from living too long in overstress.
Karis was granted permission to attend a family reunion in Iowa on 4th of July weekend, before having to be rehospitalized with another central line infection. This frustrating little crisis turned out to be a blessing in disguise, since it led the doctors to remove her central line, a HUGE relief that we hadn’t experienced for many years. The infection disappeared and did not return. Finally released from the hospital on July 27th, she moved from Pittsburgh to South Bend on August 15th to resume classes at Notre Dame, after a 2 ½-year absence! This time Dave and I divided forces, because while Karis moved into her apartment, Valerie was getting settled in her dorm as an ND freshman! Though living on opposite sides of campus, the girls were a huge support to one another.
Although still struggling to regain her ability to read, to write, to focus for long periods of time, to find the energy to handle a “normal day” of activities (including physical therapy to regain function in her right foot, weekly blood tests, all of her daily meds, confusion with her Medicaid insurance coverage, frustrations with her ostomy, etc., etc.), Karis gradually worked her way back during that first semester to the competency level of her ND classmates. She had an episode of bowel obstruction for which she was life-flighted to Pittsburgh, and a series of other complications in her daily life, but despite all that, she completed her first semester back at school with straight A’s (turning in her last paper eight weeks late, on the deadline for finishing an incomplete). Determined to succeed, and thrilled to be back in “heaven” (as she described ND), she often did more than her professors required. The harder she worked, the more quickly her old skills came back to her.
David and I said to each other, “Can we start to relax about Karis? Can we make plans based on the premise that she will be well?” After Christmas, I returned with Dave to Brazil anticipating settling back in, starting over there with work and home and friendships. Our tranquility, however, was short-lived.
During fall semester, Karis had been increasingly troubled by pain in her right hip. During her Christmas check-up with the transplant team in Pittsburgh, they ordered an MRI. On Feb. 5th, an orthopedist told Karis that because of steroids that had been used to fight rejection, she had developed avascular necrosis in both hips and could not continue with any physical exercise, even standing or walking, and in his opinion, needed immediate invasive surgery.
This was a huge shock to Karis and to all of us, and terribly discouraging. It seemed totally over the top, an outrageous assault to what was just starting to feel to Karis like getting her life back, a return to a semblance of normalcy. She consulted other orthopedists; the fourth one finally agreed to try conservative treatment, without immediate surgery but with no promises for the future. Karis moved into an apartment equipped for a person with handicaps. Besides significant pain, the AVN-produced limitations to her mobility introduced all kinds of complications to her life and despair over ever getting her life back to normal (whatever that is).
At the same time, Karis has periodically landed in the ER with dehydration. The docs call this struggle “Dumping Syndrome,” a distressing, frustrating invasion of her time and autonomy. Any given incident requires at least 24 hours of recovery time, a huge liability to a busy college student.
Like any transplant patient, Karis constantly walks the tightrope between rejection and infection, two dangers with opposite prevention and opposite treatments. Her stamina is limited, so she simply cannot keep up with the normal social rhythm of her classmates. Her sleep is haunted by nightmares left over from her comas.
It’s hard for us to know how to respond when people enthusiastically celebrate Karis’s victories and return to health. YES!!! But . . . Life is not easy. We all live with the sense that at any time, something else could happen. As I write this, for example, I have just been informed that Karis spent the day yesterday in the ER with dehydration and also a mysterious, full-blown, top-to-toe-hives allergic reaction to something as yet not named. One more frustrating, surprise twist of the roller coaster.
What will be next—a small crisis or a big one? How can we keep our sanity, our balance, when life is so disequilibrating? How can we keep dealing with the distressing, unanswered question of what this is all about? How can we keep being productive, maintain our confidence, nourish our relationships, plan for the future, keep laughing and finding joy in the multiplied blessings of the life God has given us?
The only way is by seeking the Presence of God one day at a time. Looking up and out and away from ourselves. Trusting him to cover us with his hand. Anchoring our faith in God's solid unshakeable character, the basis for our Hope, rather than in unpredictable and sometimes downright scary circumstances.
There’s so much we don’t understand. A few things, though, we can identify, looking back on our journey to this point:
- God’s amazing special touches, which we have tried to record in this accounting and which reassure us again and again that he is Immanuel, God with us.
- Life is all Gift, and Grace. God cares about the details. He is Elohim, the Creator.
- Forgiveness, of ourselves and of each other, allows us access to God’s grace. He is Jehovah-Raah, our Shepherd.
- We have been changed; our family relationships have been strengthened. He is Jehovah-Rapha, the Healer.
- The generosity and compassion of the Body of Christ, his church, has been overwhelming. He is Jehovah-Jireh, our Provider.
- So many other families are doing vigil with loved ones in hospitals worldwide, facing challenges familiar to us. So many others suffer in ways we can’t even imagine. He is El Roi, the God who sees. Even into Iraq, and Sudan, and Lebanon, and so many other places of anguish.
- He can use the most unlikely situations to work his character and perspective into us. He is Jehovah-Mekoddishkem, the Lord who sanctifies.
- God is not surprised by anything. There IS a purpose, even when we don’t get it. He is El Elyon, the God Most High.
- We don’t always have to understand. He is Jehovah-Shalom, the Lord our peace.
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