Neuronarrative

Musings on the complicated business of thinking

Starting Over One Thought at a Time

A man's true story of surviving a near fatal brain illness and starting over.

Scott had been feeling a little dizzy for most of the morning, but assumed he might just be fighting off a cold. He was an athletic, undeniably healthy guy not prone to getting sick, and minor symptoms like dizziness didn’t usually concern him. That is, until this particular bout of dizziness morphed into something altogether different, and far worse than anyone could predict.

By early afternoon Scott was finding it hard to stand up without feeling like he’d immediately drop to the floor. Just before 3:00 p.m., he lost feeling in his right leg, soon followed by numbness throughout his right arm—and then an inability to move almost at all.

His wife rushed him to the hospital. His brother left work early and was already there waiting for them, though from the quick call with his sister-in-law he still didn’t exactly understand what was going on. Just the day before, they were grilling hamburgers and kicking a soccer ball around (a sport Scott not only played but coached as well) and Scott was his usual energetic self.  What could have happened in less than 24 hours? When he saw his brother, his bewilderment shifted to terror. Scott was frozen, barley able to move his mouth to say a single word, and the entire right side of his body was motionless as if cast in invisible concrete. 

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The attending doctor asked questions about whether Scott had been working with toxic fumes, or if he’d accidentally ingested anything poisonous, or was possibly bitten by a snake or spider. The answer was “No” across the board. The extent of Scott’s activity that day had been getting up after sleeping in a little — not unusual for a Saturday — reading the newspaper and playing with the dog.  He had not been sick for months before this — just a sinus infection he developed after surfing all day—and it was quickly quelled by antibiotics. 

A neurologist was brought in to evaluate, and his preliminary diagnosis was not good. Scott was most likely suffering from a brain tumor, the neurologist told Scott’s wife and brother, and he’d have to be rushed to another hospital in the city better equipped to handle it. Within a half hour Scott was in an ambulance racing to the other hospital. The neurologist told his wife that the medley of drastic symptoms Scott was experiencing indicated that his chances of recovery may be very slim, and she should be prepared for the worst.

At the new hospital, two more neurologists evaluated Scott and came to different conclusions about what was going on. One concurred with the earlier doctor’s diagnosis of a tumor, but the other wasn’t so sure. The MRI showed an abnormality in the left hemisphere of Scott’s brain, that was clear, but precisely what the abnormality was wasn’t clear at all. It could be a tumor, but it might also be damage caused by an aneurism, or possibly a different sort of lesion altogether. They did agree, however, that Scott would have to undergo emergency brain surgery. His paralysis was worsening, and with very little aside from the questionable MRI scan to go by, surgery was the only option to determine exactly what had struck down a healthy, 33-year-old man without warning. 

Five hours of surgery revealed a cause that no one had even considered: Scott’s brain was in the throes of an aggressive bacterial infection. It had spread so rapidly that multiple areas of his brain were already affected—causing a series of damaging micro strokes—and left untreated he would likely have died within hours. 

Scott was put on a cocktail of powerful antibiotics fed into his system continuously by a series of intravenous pumps. For the two days after surgery, the infection did not abate at all, but in the coming days it gradually weakened. After a full week of laying incapacitated in a hospital bed with tubes spanning from one side of the room to the other, Scott’s body was finally gaining the upper hand on the infection. By day 9, he was able to sit up in bed with assistance, though the paralysis on his right side remained. 

Fortunately, he was once again able to speak, and his words reassured his wife and many visitors that he was indeed feeling much better. In a few days, he was able to stand—again with assistance—and balance himself upright by shifting his weight to his left side. Though the situation remained far from ideal, standing at all was quite an accomplishment and Scott was visibly pleased that he could manage it.  

One morning in the hospital room, Scott pushed himself up from the bed with his left arm and actually stood without any assistance. His wife almost couldn’t believe it, but she knew the determination of her husband, and knew he would start forging ahead to recovery as soon as he was the least bit able. 

But then, just as he seemed to be starting on that upward bound road, something happened.  Scott fell back onto the bed, but not because he’d lost his balance. He fell as if he’d been shot—all at once, a complete collapse. He was unconscious and his wife tried to wake him, thinking perhaps the strain of standing had been too much in his weakened condition. Nurses ran into the room, checked his vital signs, and Scott was rushed out of the room on a gurney to intensive care. Within minutes he was being prepped for emergency surgery. Scott had suffered a major heart attack. 

Again his wife was told to prepare herself for the worst. The nature of Scott’s attack, caused by a massive arterial blood clot in his right leg, resulted in death more than 90 percent of the time. That he hadn’t died immediately was remarkable. The likely cause was the combination of blood clotting medication he’d been given during brain surgery to prevent internal bleeding, and several days of motionless confinement to a bed. 

The heart surgery lasted six hours, and concluded with the best possible outcome – Scott had pulled through. He would now have several days ahead of recovering from the surgery, even as he was still not fully recovered from the brain infection, and the path that had appeared to be getting a little easier once again became harder than anything Scott could have imaged just two weeks before. 

When Scott was finally released from the hospital weeks later, he struggled to fathom how his life had changed in an instant. On a typical Saturday morning he’d felt a little dizzy, and now he was a survivor of a lethal brain infection requiring brain surgery, and a major heart attack requiring open-heart surgery, and was left partially paralyzed.

Even beyond the physical outcomes, he was faced with a formidable group of mental obstacles catalyzed by the abrupt shattering of life as he knew it. More than once he asked himself, “How can I deal with this?” His doctors told him that under the best conditions, after months of physical therapy, he would regain only 60 percent use of his right arm and leg. That meant that a major part of Scott’s life—sports and other physical activity—was going to radically change. To do anything approaching what he’d been able to do before the infection set in, he was facing a mountain range of recovery. But even then, he knew that he’d have to come to terms with the reality of simply not being the person he used to be. His emotions bounded to extremes: sadness to hopelessness; disappointment to anger. 

Added to it all was a question that no doctor—not even nationally regarded epidemiologists brought in to study the case—could answer: how the infection had struck so far and deeply into his brain.  As it turned out, Scott’s case was a true anomaly. The type of infection that nearly killed him was not supposed to be able to pass through the blood-brain barrier – and yet, despite medical research to the contrary, it did.  

Scott went through many dark times in the months after he was released from the hospital, returning to a world that seemed almost foreign now. He suffered bouts of depression, and for periods—sometimes days at a time—he didn’t want to leave his house, or even his sofa. 

But Scott didn’t drop anchor and stay in the dark. He took one immensely significant step that was the difference between sinking deeper, or emerging to work through the obstacles.  He challenged himself at the very core of everything – his thinking. Scott stepped outside himself and gained perspective on the destructive thought process that was taking over, and then—like a journalist covering a story about his mind—he began deconstructing those thoughts. He challenged every part of the thought process–the dire assumptions he was making, the delusions of inevitability he’d succumbed to, and the pernicious thought that if he couldn’t be who he was before, then he simply couldn’t be. 

Scott also learned that the harder he tried to repress his feelings about what he was facing, the more they erupted and pulled energy away from the constructive work he’d started. So he stopped trying to control them and allowed himself to identify and experience those feelings; as he did, each lost a little more of its intensity.  

There is nothing clear cut about the challenge Scott was facing. Introspection is messy at best, and fraught with more setbacks than advances. But the crucial thing is that Scott didn’t give up on the challenge to change his thinking. No matter how long it would take, he wasn’t about to back off, and he never did.            

The conclusion to this story is that Scott struggled through success and failure to think differently about his new situation, and the changes he’d have to embrace to adapt to a different kind of life.  Doing so opened the mental door to the hard work ahead. He pushed himself through physical recovery to gain as much use of his arm and leg as possible, even though the outcome was just as the doctors told him it would be; roughly half the control he’d had before. Scott and his wife went on to start a family as they’d planned, and he became the father of a beautiful little girl. He eventually returned to coaching soccer at the school where he taught, and within a year he was even able to get on a surf board again. 

Most of us will never have to overcome the obstacles that Scott faced. Most of our lives won’t be interrupted so abruptly, and most of us won’t have to know what it feels like to adapt to a drastically different life than we knew only weeks before.

Scott’s situation is atypical, but it offers an example that all of us can learn from – a blueprint for what is necessary to overcome the obstacles that immediately appear whenever we are trying to push ahead, achieve, and accomplish. Sometimes those obstacles are small, other times they appear insurmountable. But the overriding truth is that we all face them, and how effectively we think about our thinking can make the difference between an outcome that leaves us wanting, or one that is ultimately fulfilling.

David DiSalvo, 2012

www.whatmakesyourbrainhappy.com

www.dailybrainnews.com 

David DiSalvo is a science and technology writer working at the intersection of cognition and culture.

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