Getting the worst headache of your life should send you to the emergency room. Shane Byous can tell you. He is a strapping man with a strong southern accent. Byous was only 44 years old, an RN, and had been the director of an emergency room in Georgia. He says he “burnt the candle at both ends” until October 28, 2019, when “everything came to a sudden halt.” That evening, he complained of a severe headache. He went to get an ice pack for his head, then staggered to his bedroom. His wife heard the sound of his falling body collapsing.
In one sense, he was very lucky. His wife, Andrea, is a nurse and immediately started CPR while his son called 911. Soon, EMTs transported him to his hospital. A CT scan showed an extensive bleed in his brain and he was transferred to Emory University.
Subarachnoid hemorrhages
The sudden, unusually severe headache Byous experienced is typical of a subarachnoid hemorrhage, a bleed from a ruptured aneurysm (a weakened blood vessel), with blood collecting around the brain. It left Byous with a number of invisible disabilities. SAHs are uncommon, occurring in 10 to 14 out of 100,000 people per year, resulting in almost 20,000 cases in the U.S. annually. The most common underlying risk factors are high blood pressure, smoking, alcohol use, and family history. Most cases occur in those aged 40 to 65.
A quarter of people with subarachnoid hemorrhage die within 24 hours, and half die within the first six months. A rebleed has a mortality rate of 51-80%. Death is 62% more common in women than men and 57% more in Black patients than White ones. Older age also carries more risk. Only 10% who are comatose on admission, as Byous was, survive.
At Emory, doctors inserted an endovascular coil wires to seal off the aneurysm and prevent further bleeding.
Byous recalls he woke up five weeks later in the Neurology ICU, thinking only 10 minutes had passed.
He rather humorously explained that he realized, “I’m in the hospital. So I look over the ventilator, and it’s a big, nice touchscreen ventilator. Emory’s got some really nice equipment! It’s not what we have in our hospital. They have spent some money on some really nice equipment! Then, it occurred to me that I was the one on the ventilator.” Fortunately, his wife was often present to reassure and reorient him.
Invisible Disabilities
In addition to the brain bleed, Byous’ course was worsened by another cardiac arrest, kidney and lung failure. He has made a remarkable recovery. However, he is blind in one eye and deaf in one ear and sometimes has to walk with a cane. He fatigues easily and can’t multitask well. Understanding his own abilities is difficult—he thinks he can do more than he can, which gets him in trouble around the house. Yet he continues therapy and wants to write and tell his story to help others overcome their illnesses.
One of the other disturbing twists in this story is that Byous was briefly sent to a rehabilitation unit. He was not sent to a comprehensive specialty neuro rehab center because they were afraid that he would use up the (too short) number of days most insurance plans allow for rehab. Instead, almost as soon as he could walk and breathe on his own, he was discharged home with inadequate support. He says he “came home from a coma, and woke up during a pandemic.” The social isolation was so difficult—it was like, “You wake up from a coma, and essentially it’s like ‘The Walking Dead’ and everybody’s fighting about facemasks.” He had home PT but not speech therapy or occupational therapy, let alone more advanced neuro rehab that would have benefitted him. Byous adds, “Your support group during your recovery is super important.” You need someone “who is resourceful and tenacious.”
Byous also stresses that he learned a great deal from reading, networking, and what other people have used successfully. His neurologist placed him on memantine, using it off-label. “It’s been a game-changer,” Byous says. “It allows me to focus and stay on topic.”
Being a big guy without immediately apparent disabilities, Byous is now one of the 10% of Americans who have an invisible disability. That percentage will undoubtedly grow as medical advances, like the intensive care he received, save people who would once have died. Long Covid and the growing number of autoimmune diseases are rapidly adding to that. It’s important to know that many of these illnesses are covered under ADA protections. But not every place, including hospitals, will recognize and honor even simple ADA accommodation requests.
Invisible disabilities are complicated for patients to navigate in many ways. Autoimmune diseases, for example, often take years to diagnose, although the patient is symptomatic. There can be a lack of empathy from clinicians and the public, who might view them as faking illness to game the system.
Relationships And Recovery
Depression and PTSD are common in patients with SAH and traumatic brain injuries. Byous still has nightmares about the ICU stay and having all his limbs restrained. He was fiercely independent and proud of the support he contributed to his family. Now he can’t work and relies on others to take him everywhere. Survivor’s guilt sometimes haunts him.
One of Byous’ favorite quotes is “success is moving from one failure to the next without loss of enthusiasm.” He stresses that if something isn’t working, you can’t “get discouraged and quit. You just move on to something else and keep going.” He’s had to relearn to walk, frequently losing his balance and falling, even on the level. Yet his wife found that he had climbed ladders to change high air filters. Andrea says he’s not just obstinate—“he just doesn’t realize what a risk it is” and doesn’t have a realistic grasp of his abilities. And then, he won’t even remember having done it, so it’s hard to correct him.
The elephant in the room after a catastrophe like this is how it affects your relationships. Andrea says she now lives in a “perpetual state of anticipatory grief,” fearing he will die and she will be abandoned again. She feels she is “a weaker person than I used to be. I feel like it took all of what I had to save him and to keep him alive.” She’s become much more reserved at work, saving her energy for home. Andrea notes that she felt happier and safer in the hospital because of all of the monitors, and it’s hard now that they are on their own.
Both are suffering ongoing nightmares—Shane from having all of his limbs restrained in the ICU so he wouldn’t hurt himself in his delirium, and Andrea that he “will wake up dead one day.” She is now the breadwinner and is stressed by having to leave to go to work. “I worry about him every minute that he’s not with me,” she said, knowing that his life expectancy is only a few years.
“Everything we had planned is gone,” Andrea said. “We’re both still grieving the life that we had planned that we’ve lost.” She added, “He is truly my best friend, and I miss who he was. I am grateful for who I have.” Shane similarly focuses on his wife and says, “Gratitude is his best medicine.”
For other patients, both Shane and Andrea emphasize that restraints were the biggest problem. They suggest that staff teach family to be at the bedside and help so they can take the restraints off periodically.
They also caution, “If someone says they have a terrible headache like they’ve never had before, get them to the hospital.” Andrea also warns that she trusted he would be able to tell her if he needed help. “I didn’t know that something was so wrong that he couldn’t tell me.” She cautions that “you trust your instinct.”
Their final advice for others is to get therapy for the entire family. While they are enormously grateful for his life and continued improvement, an event like this shatters family and dreams.
Note: This post was written with input from Shane and Andrea Byous, as part of the NeuWrite Voices in Action course.
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