This huge developmental change with the kids occurred over a few months, but for her, there’s been no gap in time. She expected to come home and simply pick up where she left off. But things have changed. The trouble is that rather than working to reestablish and redefine her role, Susan tends to try harder to force everyone and everything back into what they were before the accident, which causes the kids to push back, which causes her to push even harder. It’s a vicious cycle that I finally had to talk to her about.
I told her how amazing the kids have been and that they didn’t need the same things they did just a few months ago. “Because of all your lost time, I’m sure it feels like it was almost yesterday, but it’s actually been a while and with a really steep learning curve. You have to give them some of the space they’ve become accustomed to having.”
It’s hard. In a little time, I’m sure we’ll once again find our rhythm, but right now we’re a little off.
Despite the daily appearance of new aches and pains, whether in her hip, her arm, or the splitting headaches she’s been getting that originate at the pin sites, Susan, in terms of her rehab, continues to greatly improve. We take short walks around the neighborhood, venturing farther each day before she needs to take refuge in the wheelchair. The fresh air is so refreshing, but what she really remarks on are the colors, the green of the trees, the blue of the sky. Three months of institutional floors and walls have given her a huge appreciation of the beauty of nature, and she’ll happily sit out front on the deck and call to neighbors as they walk by, each of them bounding over to greet her, tears in their eyes due not only to her survival but to her inviting smile and greeting.
As part of her home-nursing regime, she’s been assigned a few different therapists to come by on a weekly basis. First is the cognitive therapist, who will help her get back to daily living, everything from going to the bathroom and washing herself to doing simple chores. Then there’s a nurse, who will take her vitals and change any dressings. Lastly, a physical therapist will aid in getting her back on her feet. When the cognitive therapist arrived and Susan heard that she was there to help her relearn how to do things like the laundry and loading the dishwasher, Susan asked, “Oh, great. I bet my husband hired you to do this, didn’t he? He’s been complaining our entire marriage about how I load the dishwasher.”
Despite our insurance covering these sessions, after only one visit from both the nurse and the cognitive therapist, we told them they didn’t need to come back. Susan had already progressed past what they were there to help with. The physical therapist, though, was a different story.
While in the hospital’s rehab, Susan found that using a tall pole was more effective than a cane for helping her get up stairs, so before she came home, I went to Home Depot and had a piece of PVC pipe cut into two six-foot lengths. I then put a rubber tip on both ends, creating a sort of large walking stick. Right now, she can manage only a few stairs at a time, but she’s determined to build her stamina with the objective of eventually conquering them all. This ambition to make it to the second floor is driven by two desires: one, getting back into our bed; and, two, when her halo is eventually removed, finally reaching the nirvana of the oft-fantasized shower.
Dennis, her physical therapist, is helping her get there. Upon meeting her on the first day, like everyone who has reviewed Susan’s medical records, he didn’t know what to expect—perhaps someone writhing in pain, curled into a little ball unable and unwilling to move, possibly even unable to communicate at all from the brain injury. So when Dennis walked in, he nearly dropped in shock when he found Susan sitting up in her bed, greeting him with her trademark smile ready to go—in particular, wanting to head up the stairs toward the bedroom. He looked confused, like he had walked into the wrong home. He double-checked his clipboard, “Wait, you are the one who was hit by the bus, right?”
He told us that before arriving, his initial hope for her first day of therapy was to maybe, and that’s maybe, get her to at least agree to try to do a transfer, perhaps take a couple of steps; but even then, based on her injuries, he wasn’t going to insist. Instead, Susan was already on the move before he could even set his things down, trying to move her right leg off the side of the bed. As he moved to help her, Susan stopped and pointed out a stain on his shirt. “Dennis, um, what is that on your shirt?”
He confessed, a bit embarrassed, that before coming to us, he had stopped at the Rite Aid to get a chocolate ice cream cone and had a bit of an accident.
“Okay, well that’s a little gross and you need to wipe it up.”
She is anything but shy. Dennis, quickly realizing who was in charge here, dutifully complied. (It also gave Susan a much-needed parenting fix.)
In the couple of times we’ve now seen Dennis, his trademark phrase has become “You’re doing very well.” Susan hasn’t reached the top of the stairs yet, but she is getting closer. If she pushed it, she could probably climb them all, but for now she’s happy enough in her hospital bed in the living room, frightened that if she were able to get upstairs, she might not be able to get back down.
Friends often ask her how she is able to face the enormity of the recovery in front of her, adding comments like, “I really don’t think I could deal.” Her response, however, comes fairly easily. She tells them that as difficult as she knows her rehab will be, not trying was never an option. She also talks about when she was in the hospital how the doctors put the fear of God in her to get off pain meds as soon as possible. She can see what they meant, appreciating the danger of popping oxycodone and just lying in bed all day watching TV. “That’s not what I want my life to be,” she adds. “I want to have what I had.”
If you ask her what got her through all of this, she’ll say “love.” If you ask others, they’ll say “her attitude.”
When I think about it, I wonder if the two work reciprocally—that the love she feels from others and for others is the source of her unflinchingly positive attitude, and that her bright, positive attitude is what makes others love her so much.
And despite all she’s endured, Dennis is quite right…she really is doing very well.
days 92–98: week #2 at home
My angel has lost her halo!
It was a day as hotly anticipated as Christmas, and there was only one gift on her list: remove this godforsaken contraption.
A couple of weeks ago when we made our follow-up appointment with our neurosurgeon, Dr. Baron, we had heard that he intended to remove the halo, but we weren’t counting on it for fear of a huge disappointment if it didn’t happen. Susan has been getting some very bad headaches that are now beginning to increase in frequency and pain. As I’ve noted, for the most part, she has tolerated the halo remarkably well, but even so, one can take only so much torture.
It isn’t just being set free from the iron rods; she’ll also be able to take her first shower in months. I think about how I feel if I haven’t showered for just a few days, the itchy, greasy hair, the grime-covered skin. For Susan, this hasn’t been going on for just a few days while on a camping trip or until the water comes back on; this has been months. Yes, she’s had washcloth baths, for which I reach down the hard plastic of her body vest to wipe her down, feeling the knotted, now-stiff sheepskin fur or whatever that lining material is, but it’s hardly satisfying. Keep in mind, this is the same woman who has been featured in hair product ads in beauty magazines for her long, curly hair, which has now turned into an oily dreadlock. I tried using dry shampoo on her, but that was about as effective as dry-cleaning a stray dog.
So I got her dressed and we headed to Dr. Baron’s office with no idea what to expect. Do they put her under or sedate her to remove the halo? She hadn’t been instructed not to eat or to prep in any manner, so that seemed doubtful. Either way, we didn’t really care; we just wanted it done, however they do it.
When we arrived at the doctor’s office, we were informed that the apparatus wouldn’t be removed by our neurosurgeon but rather by �
�the appliance technician,” a term that sounded frighteningly similar to a refrigerator repairman. Still, we wheeled Susan back into a small examination room and waited.
Finally, the door opened and the appliance technician entered. He was an older gentleman named Max, who was actually one of the inventors of the halo, and also the man who apparently had supervised the installation of Susan’s. Upon entering, he informed us that his associate was supposed to have handled this appointment, and therefore Max didn’t bring his tools. If we’d give him a minute, he was going to go back down to his car and see if he had a spare set. And then he was gone.
I began to joke, “A spare set in his car?! Is he going to get the tool kit the auto manufacturers include for incidental repairs?”
After a few minutes, he indeed returned carrying a little zip-up tool kit—exactly like you’d find packed with the car owner’s manual and an emergency flare.
“Wait, you just do this yourself…with those?”
Without pausing, Max answered, “Yup,” and took a little ratchet wrench out of the case and began unscrewing the bolts on the large plastic vest. Apparently my joke was no joke. Tackling the vest didn’t seem too much of a problem. As far as the iron bars screwed into her head, I had no idea what he was going to do.
As he unscrewed the vest, and the looser it got, the more relief I could sense in Susan, until he finally pulled the pieces apart, freeing her from this primitive torture device. The first words out of Susan’s mouth were those of pure relief. “Oh, my God…” quickly followed by…“I can’t believe my own stink! Is that me?! Oh, my God, shoot me!”
Yeah, it was pretty bad. Despite the wipe-downs, we were only able to get her so clean, not to mention that the vest and its materials had taken on a life and smell of their own. We immediately wet some paper towels and performed a little sponge bath: back, underarms, gently on her neck. Her breasts are large, and she’s well known for using them to function as a sort of secondary purse. Going out for the evening, she’ll tuck lipstick down there, her phone—pretty much the entire contents of Mary Poppins’s magic bag can be stored there. So here, as I lifted them to clean their underside, it was similar to turning over a large rock in the woods, unsure of what we might find. Fortunately, nothing living.
Free of the large plastic vest, Max then fitted her with a hard collar to stabilize her neck. The halo was still screwed into her head.
“What about this?” Susan asked, pointing to the metal bars.
“I’m going to do that next,” Max replied.
“Right here?!”
Again, “Yup.”
He reached back into his little tool kit, pulled out a torque screwdriver, and began attacking one of the screws, slowing twisting it counterclockwise, like her forehead was a piece of wood. Susan’s eyes went wide, vocally accompanying each turn with an “Ahh.”
I never knew how shallow or deep these screws were, but I imagined they’d be free with a couple of rotations, figuring they were superficial little stubby screws mainly there just to keep the halo in place. This was so not the case. As Max turned and turned and turned some more, it became unsettlingly apparent that these were major bolts roughly two inches long and screwed directly into her skull! They went on forever, and here he was, unscrewing them like Susan was a piece of IKEA furniture.
She said it didn’t really hurt, but felt really, really strange. With our kids, she had had two C-sections, so she was familiar with doctors tugging on the insides of her body while she was numb, but this was a completely new level of bizarre. And, unlike with the birth of our children, I wasn’t afforded the role of being just a horrified bystander. As Max removed the screws, I was tasked with holding the halo in place so that it wouldn’t tip over, which, like a sconce in drywall, would have ripped the metal, threaded spikes right out of her head.
Finally, the first one came free, revealing at least an inch of depth into her skull. “Oh, my God!” Susan exclaimed.
Yeah, no shit, I thought. There’s a gigantic hole in her head!
“They’re easier to get out than to get in,” Max casually offered.
Okay, interesting to know. “How do you get them in?” I asked. “Do you have to predrill?”
“No, I just use a torque screwdriver like this one. They go right into the bone.”
Terrific.
I continued to hold the appliance in place, my arms tiring as Max removed the second, third, and finally fourth screw. He had trouble removing the back screws, as they were all knotted and stuck with matted hair, but eventually, accompanied by Susan’s “Ows,” “Ouches,” and involuntary tears streaming down her cheeks, he finally succeeded in pulling those out, along with clumps of her greasy, bloody locks.
Then, with them all freed, he lifted the metal crown of thorns from her head. Blood slowly dripped down her forehead from the holes left behind, the imagery impossible to ignore.
“What happens now?” I asked. “Does she get stitched up?”
“No, the holes will close on their own.”
I had seen how her trach hole had closed up like that, but I just couldn’t imagine these closing in the same manner. After all, this wasn’t just skin; it was bone, too.
“Just make sure to keep them clean,” Max instructed.
“How do we do that?”
“A little hydrogen peroxide on a Q-tip and just clean around and in the hole.”
“In the hole?” I confirmed.
These things disappeared like black vortexes into her skull, and I was supposed to stick a Q-tip in there and twirl it around? Max brought one out to demonstrate and then gave another to me to attack the next hole. Circling the opening and wiping away the blood was fine, but sticking it in there and twisting it around made my entire body cringe…just another one of many residual acts I never would have guessed in a million years I’d be performing.
For Susan, however, getting that thing off her head was a huge thrill. The next immediate task was to deal with her hair, which currently was a greasy, bloody, scabbed, and matted mess. We had brought a comb and brush with us, and at first I gently addressed the area, trying to coerce it into submission, but that quickly turned into an unrestrained assault. Making any progress on the snarled knots required pulling out large clumps of hair, which came out disturbingly easily…lots of it, handfuls that I discretely threw into the garbage to shield Susan from seeing how much she was losing. I was eventually able to get it somewhat under control and tie it into a small braid.
Meanwhile, Max had forgotten to bring the waterproof collar that would allow Susan to take a shower, so he headed back to his office to locate one. Once we were done here, we’d meet him there to pick it up, a stop we were definitely going to make before heading home.
A few minutes later, a nurse arrived to take Susan for some X-rays, and afterward we were required to fill out a questionnaire. Among other ridiculous questions, it included if Susan’s back or neck pain prevented her from “exercising”? Yes… “driving”? Yes… “sleeping”? Yes… “sex”? Actually, it wasn’t so much the back and neck pain that prevented the sex as much as the two broken arms, crushed hip, broken leg, not to mention the giant pot rack screwed into her head. Fortunately, Dr. Baron rescued us from our paperwork. He breezed in, asked us to follow him, and then just as quickly breezed out.
Before we were able to get up and maneuver ourselves out of the examination room, we had already lost him.
“Hello?” we called out into the maze of his office.
“Just follow my voice,” he shouted back, but then went silent again.
“Okaaay…but you’ll have to keep talking.”
Like following an audible breadcrumb, we eventually found him in another exam room where he brought up Susan’s X-rays to show us how she’s been healing. After going through the X-ray-deciphering exercise once before, I was curious to see if they’d make any more sense to me now. They didn’t. However, Susan, surprisingly, somehow seemed to be able to see exactly what he was talk
ing about.
“Wow,” she said as Dr. Baron showed her the initial X-ray of the break. He again pointed at these white spots, which he said were the detached bones from each side of the spinal cord. He then indicated how close each one came to severing the arteries that led to her brain, illustrating once again how very lucky she was not only to be alive but to not be paralyzed.
“Now I want to show you where we are today.”
He pulled up another X-ray, which was dark and looked as foreign to me as the others. Again, Susan seemed to get it right away. “Wow! Look at that!” she exclaimed.
“Um…I haven’t loaded in the X-ray yet,” Dr. Baron flatly responded.
Okay, thank God it wasn’t just me who had no idea what we were looking at.
He then made a couple of adjustments, and the picture came into focus. After his explanation, I could see that, yes, her spinal cord did look straighter and like bone was growing. This is what he was so excited about. Susan, however, was duly sobered by it all. “Geez, I was almost a goner, huh?”
Dr. Baron nodded, still fixated on the X-rays.
Then looking at the plate and screws in there, Susan tried to lighten the mood.
“They’re gonna love me at airport security.”
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