January 11.
I watched my husband, inert like a mummy, slide through a CT scanner.
“I don’t know how much of your husband’s brain has died,” the doctor said after the scan was done.
A hospital social worker, who’d come to provide moral support, gasped and looked shocked. I decided not to dwell on the doctor’s statement. Some things are so awful that they either require time to absorb or shouldn’t be taken seriously. There would be plenty of time to panic later.
“We need to perform surgery,” said the doctor.
“Ah. How is that done? By drilling a hole through his skull?”
“No. We’ll go in through his thigh and run a catheter up through his blood vessels.”
Good. I was glad to be wrong, and glad that medicine had progressed past the medieval notions I’d formed while watching Frankenstein movies.
“Do it. Where do I need to sign?”
Later that night, when he woke up after surgery, he could only say “yeah” or “naw”. I wondered what else was gone.
“Do you know who I am?” I asked.
“Yeah.”
I gently quizzed him about our son, our life, and where he thought he was, receiving yes or no answers in response. He looked shocked when I explained what had happened to him. When he chuckled at one of my dumb anecdotes, I knew his personality was still intact.
Alright. He was alive, not a vegetable, and still himself. The rest could be figured out later.
Two days later, he was taken out of ICU and transported to rehab. It isn’t every day you get to follow your husband’s ambulance down the highway, and thank goodness for that.
My goal with hospitals has always been to not spend too much time in them. They’re places you visit if, heaven forbid, someone you know has a serious medical issue. You stop by, listen if the person cares to talk, leave magazines or flowers, and leave before you tire the person out too much. Maybe you take a casserole to the family, walk their dogs, or invite their kids over so the person can have peace while they recover.
Maybe you have to be hospitalized yourself. Again, speaking for myself, the goal is to get in, get your issue taken care of, and get out. “That nasty appendix is gone? Swell – thanks for taking it out before it killed me! Well, I’m in the middle of a project at work, so I’ll just be on my way. Toss me some pain pills, wheel me out the front door, and dump me at the curb.”
However, if you aren’t well enough to go home and you need help becoming independent again, you may get sent to rehab. That’s what happened to my husband. He spent three weeks in this room. When he arrived, he couldn’t stand, walk, speak, or otherwise take care of himself. When he left, he mostly could.
I was initially told he’d be sent to a place about seventy miles from our house. I’d need to be there, particularly during the last week of his stay, and it was too far to commute.
I started making phone calls, shaking people down to see who could watch my son. He isn’t really a child anymore, but he also shouldn’t be staying by himself overnight. That’s when I found out how fundamentally decent the people around us are. Some of the parents of my son’s friends were willing to have him overnight, and one family said they’d even take him for a week, even though it was a huge favor to ask of them. (They already had four sons, and really didn’t need my bottomless pit of a teenager emptying their refrigerator!) Fortunately, my in-laws dropped what they were doing, left their nice beach vacation, and jetted out here to keep my household from descending into savagery.
Happily, my husband was transferred to a nice facility about ten minutes from our house instead. That meant I’d be able to sleep at home and see my son a few minutes at night after spending the day with my husband. I was grateful.
I don’t remember asking what his prognosis was or what they were going to work on in rehab, although they may have told me. I’m not even sure I wanted to hear predictions. How is a doctor or a therapist supposed to give a prognosis on something organic and hard to measure like a brain injury? What are you supposed to say? “Most folks get at least a little better. He’ll probably get better until he stops getting better. Recovery usually goes quicker at the beginning then slower as the months go by, but everybody’s different.”
Regardless, the paper tacked to the wall in his room made the goals pretty clear: he was going to work on the skills he’d honed during the first 2-3 years of his life. They were going to try to get him up out of bed, out of a wheelchair, and eating and drinking things that weren’t purees.
On his second or third day at the facility, therapists strapped him into a harness that would support his weight, so he could learn to balance and walk again. One therapist steadied him from behind while another manually moved his right leg, which no longer worked. They managed to parody the rhythm of walking in this manner, and encouraged him to try to move his leg himself.
It looked like hard work. These two therapists were lovely people, kind and sympathetic while also efficient and businesslike. One of the bright spots in this mess was getting to meet them. I was also quite fond of the occupational therapist, his first speech therapist, and several other people who worked with us. I’d name them all here and thank them, but I suspect that they’d like to have their privacy respected.
The facility also had an exoskeleton. I believe it’s used in more challenging situations.
Thankfully, my husband was still able to read and understand spoken language. He was quite aware of the manner in which his brain was malfunctioning.
I watched him test himself, reading words out loud then making more attempts when the sounds coming out of his mouth didn’t match the ones in his head. That struck me as a good sign, another indication that his intelligence and problem-solving abilities were still intact. He also had a good attitude, simply shaking his head, chuckling, and trying again when things didn’t go well.
Sometimes his brain would append strings to each thing he said: “kitchen room, garage room, hall room”. Other times, his brain would get in a loop that could only be stopped by ending the attempt to say that particular word. One day, for example, while attempting to read a list of foods, his brain decided to label them all “sushi”.
If I’d thought about it too much, the situation would have broken my heart. Imagine being a grown, brilliant, articulate man; an award-winning writer, former night editor at a newspaper, and a software architect. Suddenly the only words you can say reliably are yes and no. At times he must have wondered whether it would ever get better. But I never heard him complain or indicate that he was depressed during the entire process. He just kept chugging ahead, albeit with frequent naps.
After he’d been in rehab a few days he managed to convey, through grunts and gestures, that he wanted me to create a hot spot with my phone so he could have internet access for his iPad. Yet more evidence that his intelligence was alive and well.
We had a brief discussion (albeit with grunts and single words on his side) about cognitive psychology.
“You’re going to have some interesting stories to tell once you can talk again,” I told him. “What does it feel like, forming thoughts but not being able to say or write them?”
He pondered my question then, with great effort, drew this picture: thoughts forming in his head and only snow coming out.
Bizarrely enough, it never occurred to me that he wouldn’t make a full or excellent recovery. I didn’t know whether it would take weeks, months, or years, but I never doubted that it would occur.
In between speech and occupational therapies, the PT people worked on getting him to walk again. This therapist does have a head and a face, but I cropped the photo so as to respect her privacy.
This lyric struck me as amusing in an ironic way.
Dirge-slow versions of pop songs were often played in the dining room, with lyrics thrown up on a screen. I guess the rehab people were constantly looking for ways to get words to stick in people’s brains.
We spent many hours in the dining room, since it made a nice alternative to sitting in his room all day. I’d bring my lunch, once I was able to force myself to eat again, and he’d eat whatever his hospital-issued offerings were.
One day a fellow patient was groaning and making animalistic noises, sounds that shouldn’t come out of a human mouth. It’s sort of de rigueur on that floor. Maybe it’s even a good sign, being able to make noises on command or even at all.
“Remember that time we were in Maui and we heard humpback whales beneath our boat?” I asked my husband dreamily, for that is what the fellow’s cries sounded like. Later it struck me that I was a bit ghoulish.
Imagine hearing such sounds for hours at a time. That seemed to be the lot of the nurses and other staff. I’d see non-verbal, apparently inert people parked by the nurses’ station, so staff could keep an eye on them. Sometimes there’d be a brief discussion about wheeling a person to a new spot so they could stare at something different for awhile. At mealtimes, staff would hand feed whoever couldn’t feed themselves, gently cajoling them to open their mouths and chew.
The staff did what they could to help people, even when the situations were tragic and probably wouldn’t have a good outcome. It can’t have been easy.
His Pickle Rick t-shirt. I kept him supplied with obnoxious t-shirts in dark colors, knowing that food would probably get spilled on them.
Most of the therapists at rehab were young, in their twenties and early thirties. (The work is physically and emotionally draining, so it probably burns people out fairly quickly.) They see new patients wheeled in on gurneys week after week after week, and are tasked with getting them as independent as possible. On my husband’s floor, many or all of the patients had brain injuries, and a goodly number had communication issues.
I can’t imagine how rough it must be getting a read on a patient who’s in that state, much less connecting with them as a person. Heaven knows they tried, though. I figured that if my husband wore shirts depicting some of his interests – bands, motorcycles, cartoons – it might make it a little easier for them. “Oh, that’s the guy who likes Triumph motorcycles and 80s New Wave bands. Hey, he smirked at me today!”
Maybe it paid off. Near the end of his stay, he wheeled into one of the gyms and a guy yelled “Hey, Pickle Rick is in the house!”
Longing to get out. About a week before discharge, he decided he wanted to go outside. To be fair, he did try to communicate this by gesturing at the window, saying the word “open”, and making swooping motions with his hands. I didn’t understand, though. The next thing I knew, he was rolling his wheelchair through obscure areas of the acute rehab floor, looking for heaven knows what. When he saw the elevator bank, he sped up. I stopped him.
“Patients can’t just leave the premises without clearing it with the staff ahead of time,” I told him. “If you hop on that elevator, it’s going to cause a royal stink.”
His facial expression was decidedly unrepentant. For a man who was struggling to form words and sentences, he did an amazingly good job of conveying ideas like “they didn’t tell me that” and “nobody told me I couldn’t”.
The situation reminded of a story his mother likes to tell about his being two or three, heading out for parts unknown on his tricycle, and her having to call the cops to find him. Evidently his personality hasn’t fundamentally changed.
His coworkers were lovely, turning out in droves to phone, email, or send gifts. People he hadn’t heard from in years got in touch, full of encouragement and amusing stories. A couple checked in with me every few days, and offered advice on jumping through bureaucratic hoops.
It was a lonely time, and their kindness made a huge difference in my life.
“Do you want your right hand to work again? Then you’re going to have to use it.”
It’s hard to remember now, thankfully, but the entire righthand side of his body was malfunctioning. I had to constantly prop his right arm up, remind him to not let it flop around, and so forth. Once his speech began to return, he described the way his arm got “turned on” again, with control gradually moving from his shoulder down to his hand. It must have been an odd experience.
Getting ready for discharge. Bless the OT people. I gave them pictures and measurements; they gave me a list of changes to make to the house and drilled us on procedures. Should I ever need to do so, I know how to get a person in and out of a shower from a wheelchair, in and out of a bed from a wheelchair, and so forth.
“Have you thought about getting him a motorized wheelchair?” asked a well-meaning relative, before reeling off a long list of other changes that an infirm, permanently handicapped person would, in his opinion, need.
“I think his goal is to not be in a wheelchair at all. I’m following OT’s recommendations otherwise,” I said as gently as I could.
By that time I was on edge from weeks of running back and forth to the hospital, coping with paperwork and bureaucracies while my husband napped, cancelling my participation in projects, running home to check homework and pretend I was a decent mother, getting up at 5:30 in the morning to walk dogs/cook my son’s breakfast/take my son to school, and waking up in the middle of the night with anxiety attacks. I’d been sleeping on the couch, when it wasn’t otherwise in use, and I couldn’t remember what sleeping in a bed felt like.
I’d also heard a few too many stories about how Uncle D– never was the same after his brain liquified and leaked out of his ears, no he wasn’t, and that was pretty much it for Uncle D– up until the time he died. While I’m sorry this happened to Uncle D–, who by all accounts was a lovely person, such stories were not in the least comforting.
My husband was using a walker rather than a wheelchair by that time. He was thoroughly sick of wheelchairs, walkers, hospital beds, blood pressure cuffs, and anything else associated with hospitals. I suspected that I’d have to stash his walker in the back of the car when he was discharged. Otherwise, he might roll down the window and hurl it out on the highway as we drove home. If I even hinted at the idea of getting a motorized wheelchair, he’d probably demand that I stop to pick up a can of gasoline and a book of matches.
“How about one of those elevated toilet seats?” asked the well-meaning relative. “Maybe you should install a grab bar, too.”
I gently repeated my line about following OT’s recommendations. Inside, though, I was imagining how my husband might destroy such a toilet seat if I left it in his bathroom. Was he strong enough to wield a sledgehammer yet?
One day I arrived at the rehab facility and found him wandering around his room, sans walker. This was after weeks of being strapped into a wheelchair with a rear-fastening belt so he couldn’t escape it without help and having the words “impulsive behavior” scrawled on his mobility status sheet. He’d been trained in proper use of wheelchairs and walkers, crossed his heart and promised to obey rules, and therapists had scrawled their names on pieces of paper.
“Where’s your walker?” I hissed. “You’re signed off to stroll around your room with the walker, not run laps in the Olympics. If the nurses catch you wandering around without it, they won’t be pleased.”
He gave me stink eye. It’s amazing how good he is at that.
“Dude, they’re trying to keep you safe while you’re in here. At least pretend to respect their rules.”
He stepped over to the walker, very deliberately lifted it off the floor, and began sauntering around his room while holding it in the air.
Argh. Just … argh.
On the positive side, the rehab staff had gotten him walking again.
Taking a walk the day after discharge. If I was a superstitious person, I would have regarded this double rainbow as a good omen. However, I tend to be crabby rather than superstitious, so I quizzed my husband as we strolled around our humble suburban neighborhood.
“What’s that?” I’d ask, pointing at the objects around us. Sometimes he knew the words, but usually he didn’t. Flower, bush, palm tree, gravel – most of those words were gone, it seemed. I tried to teach him the word flower, but it wouldn’t stick. I became frustrated, far more frustrated than I should have been.
Then I saw a flash of grey out of the corner of my eye. “What type of car was that?” I asked.
He barely glanced at it. “Toyota Corolla.”
“What year?”
He reeled off a year.
“Hybrid or purely internal combustion?”
“Combustion.”
“How many cylinders?”
“Four.”
“Where was it manufactured?”
“Japan, Ontario, or Tennessee.”
Ah. He might not remember the words for plants, but he could still talk about cars.
“Tell me the difference between a solid state drive and what you’d call a spinning rust drive,” I demanded. After that, I interrogated him about the components in PCs, the purpose of load balancers and routers in networks, and how to diagnose various problems. Sometimes his language was fragmented, but he clearly knew what he was talking about.
Got it. He could access the words for the things he cared about more easily than he could things like plants. Alright. Wasn’t that good, in a sense? It was at least a place to start.
Working on an antonym/synonym worksheet. Rehab was just the start of recovery, in many ways.
3 1/2 weeks after the medical disaster began, I was trying to get him to write and speak in sentences. On this particular day, I gave him a verb, asked him to come up with different forms of it, and write some sentences:
“A lover’s walk can never be talked over.
What can this talk be done?
It is with talking that’s lover’s comes deny.”
It was progress. What he wrote was a little odd, but he clearly understood how to structure sentences. He even accessed some new words and used his right hand to write.
7 weeks after the medical disaster began:
“A pulsar is a rotating neutron star formed by a super-massive event. The stellar cores that remained after the supernovae were about one-and-a-half to three times the diameter of Earth. But the mass was about a billion times greater.”
It took him ten painful minutes to pen a couple of paragraphs about neutron stars, including the one above. Still, it was progress.
We’re now sitting at 13 1/2 weeks out. His speech has become more fluid each week, particularly when he isn’t tired. Exhaustion is now his worst issue, but even that is slowly improving.
Life has changed. It isn’t easy yet, and I don’t know when or if I’ll ever be able to sleep through the night without checking to make sure that he’s still alive. I actually appreciate it when he snores now, because I can tell that he’s alive without waking up and hovering over him.
But things are better, far better than they were January 11. He’s home, he’s alive, and he was even here to see our son shave the first time. Somehow we’ll adapt and work the rest of it out.