Holding each other loosely: After my wifes brain aneurysm

August 20, 2015
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The author and his wife, ten months after her surgery. Courtesy of Peter Marty.

The neurosurgeon who operated on my wife’s brain told us to anticipate an 18-month window of healing. “After 18 months,” he said, “there’s a plateau. What you have by way of recovery at that point is pretty much the function you can expect for the rest of your life.”

Susan marked the end of her 18-month recovery period with a visit to the radiology lab. The new MRI results were what the neurosurgeon happily termed “uneventful.” The tiny platinum coil, half the thickness of a human hair, which he had inserted in a small blood vessel the night of the ruptured aneurysm, was holding strong. “We’ll see you in two years,” he said with a smile. “Go and enjoy life.” My 56-year-old Susan was thrilled to hear this pronouncement of freedom.

I don’t mean to use the word my as if Susan is mine in the possessive sense of that pronoun. Actually, I use “my Susan,” a phrase of affection, with great reservation these days. I love her dearly and count 31 years of marriage as my stroke of luck. But our journey together through this traumatic brain injury taught me some powerful lessons of nonpossessive living. Before she collapsed on the kitchen floor in 2013, I knew that life was a gift to be shared, not a possession to safeguard. But that was mostly knowledge in the abstract. These days I live far more intentionally in the gift-to-be-shared zone.

Susan’s 50-day stay at the University of Iowa Hospital would be a blur of indistinct recollection were it not for my diary notes, cell phone photographs, and the faces of gifted and caring practitioners emulsified on the photographic plates inside my head. She remembers nothing of those seven weeks—not a single nurse, CT scan, or strawberry yogurt parfait. We now conclude that this long, blank stretch of time in her otherwise striking return of memory is a blessing.

It all began with two hours in the emergency unit of our local hospital. One nurse grabbed a pair of scissors and cut off Susan’s new tennis outfit. Another went to work getting her hooked up to some high-tech monitors. Someone drew two vials of blood. Once the lead physician managed to stabilize Susan, two techs rushed her off to the radiology lab. Five minutes later I stood behind a cluster of white coats huddled around screen images of a massive subarachnoid hemorrhage. Two of the physicians didn’t say a word. Their silence signaled gravity.

The ER doctor determined that life support was critical, ordering intubation for a ventilator before the airlift to Iowa City. Within minutes, three air medics in blue shirts were wheeling Susan’s gurney out to the helipad. I followed behind, carrying my plastic bag of clothing scraps.

As I watched the helicopter fly farther and farther away, I pinned my eyes to the sky as if that slender mechanical bird was supposed to circle back. What I was really staring at was a challenge as old as Abraham standing over Isaac atop a woodpile, but as new to me as the emergency developments of the last three hours—the challenge of relinquishment. Would I be able to let go of Susan as a daily fixture in my life? Permanently? No one was around to advise me on this question, though I had a hunch an answer might be required of me this night.

Relinquishment became the question I contemplated during my hour-long drive westward. When you are behind the wheel on a highway and your only passenger happens to be the Lord, you can cover a lot of spiritual ground. I went to work practicing relinquishment, at least as an idea in my head. The Lord listened patiently.

My hands kept the car steady on the road, but my mind wandered. I wondered if I was addressing the question of “losing Susan” from the wrong perspective. She wasn’t mine to lose. She was never mine to own. Jews seem to get this straight, or at least Jewish theologians do. They know the difference between guardianship and ownership. As far as they’re concerned, we merely hold things in trust for God.

In ancient Judaism, land was the most obvious example of this conviction: “The land must not be sold permanently, for the land is mine; you are merely strangers and temporary residents in relation to me” (Lev. 25:23). Would the holding of a loved one in trust for God be any different than holding a parcel of land under similar conditions of trusteeship? I don’t think so, though this was more than my head was ready to absorb.

The first of three brain surgeries occurred soon after Susan arrived in the operating room late that night. It was a seven-hour ordeal that the surgeon warned us would be extremely high risk. He offered no assurance he could save her. Several family members and I stretched out on couches in the waiting room pretending to sleep. You don’t really sleep. You listen to your stomach gurgle as you wait for some update from the surgical suite you believe may arrive any minute. Dawn was a welcome sight.

Susan spent a week in intensive care before being moved up to the neurosurgical floor. By day, we whispered prayers and told old stories and strategized ways to distract her from requesting more Vicodin than was allowable. By night, Chopin nocturnes played quietly from my laptop—better medicine than any pills in a tiny cup.

Something went wrong on day 21. Susan retreated into her mind and entered a particularly dark period. She became largely unresponsive. Dreaded vasospasms inside her brain—something doctors warned could happen—began to limit our expectations of how complete her recovery might be. When she stirred, her hands lurched for the electrode wires affixed to her scalp.

In Denise Levertov’s poem “Suspended,” there is a line about one’s inability to possess God: “I had grasped God’s garment in the void / but my hand slipped / on the rich silk of it.” A cotton hospital gown with twill tape ties on the back is no match for rich silk. But as I stroked the faded blue print on her shapeless gown and stared into her blank face, it seemed as if Susan’s radiance was slipping away from my grasp.

She was not mine to possess, of course. A nurse named Jane, who adored Susan, reminded me of this one night when she stepped into the room around 8 p.m. Heading home from her second day in a row of 14-hour shifts, Jane whispered from the doorway, “I need to go home and take a shower, get some food, and move my car to a different parking lot. But I’ll be back.”

Sure enough, close to midnight, the door opened. Jane tiptoed in. She pointed at the big green recliner and said with all the gentleness in the world, “You get some sleep. I’ll watch Susan.” It was an offer I couldn’t refuse. As I started to roll myself into the blanket on the recliner, I looked over to see Jane climbing into bed next to Susan. There she lay, atop the blanket until daybreak, keeping watch over some colored wires glued to the love of my life.

On day 27, Susan’s condition declined notably. It was becoming clear to Jacob, Rachel, and me that we might soon become a family of three instead of four. As aides rolled Susan’s bed down the corridor for her 11th CT scan, Rachel slouched to the floor outside room 5135. She cried. I sat down beside her and joined in the tears. Whether it was an attempt to comfort my daughter or a sudden wake-up call to the faith I had practiced for so many years, I readied myself to say a few words. A strange peace came over me.

Something told me that Rachel wasn’t longing to hear scripture from a pastor. She needed a dad. But a verse rattled around my head, which is what tends to happen for me during a crisis. From hundreds of graveside services, I knew this one well: “We do not live to ourselves, and we do not die to ourselves. If we live, we live to the Lord, and if we die, we die to the Lord; so then, whether we live or whether we die, we are the Lord’s.”

I said, “Rachel, I know this is hard. It’s really hard. I don’t like it any more than you do.” She kept pressing me, “Are we gonna lose Mom?” I told her I didn’t know. I offered more. “You know what I think we have to remember? As much as we love Mom, we need to remember that we also love God. We love God very much. God is the one who will hold our family together whether we get more time with Mom or not. That’s as good as we can have it. And, it’s pretty good.” We both cried some more.

Anthony of Sourozh, onetime metropolitan in the Russian Orthodox Church, says that if you hold on to something too tightly, you risk limiting the beauty of what you’re clinging to. You will also lose the use of your hands to that object. I thought to myself that if we are not permitted to possess some of the best things in life—grace and love, for example—why is it that we grip our favorite relationships so tightly? I didn’t have an answer to that question but, oddly, I held Rachel’s hand in mine as I pondered it.

Day 31 brought tough new developments. Susan’s state of mind moved into a rotating mix of catatonia, suicidal behavior, and dangerous psychotic activity. Posing a threat to herself and to anyone close, doctors moved her to a lockdown unit. Every time Susan swung out in violence, the alarm sounded, aides came running, and four of us hustled her into a straitjacket.

As the team of physicians continued to size up her erratic behavior, it became clear that more drastic treatment measures were necessary. They proposed an experimental drug and treatments of electroconvulsive therapy, or ECT. The idea of shocking Susan’s brain with electric current for the sake of triggering seizures did not strike a warm chord in me. But the medical team convinced our family that no other reasonable options were available. Susan was mentally alert enough for hospital personnel to require her signature on the waiver form, yet confused and belligerent enough to refuse to pick up the pen.

There was a humorous moment when Susan launched into an apocalyptic rant. The attending neurologist even turned theological when he said, “Susan, is there any chance you think you might be Jesus Christ?” Susan paused and looked at each of us before offering a long and winding reply, “Well, someone does need to save the world . . .”

The physicians made it clear to Susan that they believed her incapable of making considered medical decisions that were in her best interest. They informed me that my best option would be to take her to court. I now wondered if I was going crazy. “You mean litigation? Against Susan?!” Absurd as it seemed, that became the plan. Susan was assigned her own hospital-appointed attorney; I enlisted mine. A judge deposed the physicians and eventually ruled on the case. The evidence did not lean in Susan’s favor. Aides summarily strapped her to a gurney and wheeled her away to the ECT lab.

Two weeks after the ECT treatments, Susan was ready to be discharged. The electroconvulsive therapy was not without difficulty, temporarily erasing all of her memory. But she did come home. And most of her memory returned over the months of recovery.

Time restored her personality as well, bringing back to life the range of emotions that include her bright and enthusiastic way. The extent of her miraculous recovery has surprised many on her medical team who knew the steep odds she faced.

On many mornings during her 18-month recovery, Susan and I found ourselves waking to the same curious ritual. I turned from my pillow to hers and said almost instinctively, “I can’t believe you are alive,” to which she responded by glancing over from her pillow to mine, whispering, “I can’t believe it either.” Then we arose from bed and went about our day, trying to live as gratefully as possible, treating life as a gift to be shared.

An outsider might think Susan and I hold on to each other tighter than ever before, having survived such an ordeal. Actually, we hold on more loosely to each other these days, knowing that nonpossessive love has a beauty we were fortunate enough to have discovered.

Comments

A blessing!

Thank you God for our many blessings. Peter, your words are truly a gift. Thank you for sharing them so freely. Susan, my dear, sweet friend, I am so thankful you are well and survived this very challenging time. Dear God above, thank you for the lessons we have all learned throughout this humbling, stress filled time. Thank you for healing Susan. Rachel and Jacob, I'm so thankful your family is still four (and growing) and that you two are blessed with such wonderful parents. May God bless you all as you enjoy each day!

A grateful reader

Thank you Peter for sharing this experience. You are truly blessed in so many way including Susan in your life. I am blessed as your friend.