And sure enough, at 3:45 in the morning, it rang. I looked at the caller ID and saw it was the hospital. The head nurse apologized for calling in the middle of the night, but told me that Susan really needed to talk to me. I wasn’t sure how that was going to happen, since she couldn’t talk yet, so I told the nurse to tell her that I would be right there. The nurse relayed the message to Susan, who apparently mouthed the word Perfect.
At that hour, it was less than ten minutes before I was in her room. As soon as I reached her, I took her hand, ready for whatever was so urgent. She then looked at me and with a breathy hoarseness simply said, “I want to go home.”
That was it? This crucial, middle-of-the-night need? I’m not sure what I was expecting, but I guess it was more along the lines of, “What happened to me? Where am I, and why am I in this torture prison of a head restraint?”
I told her that if I could, I’d pick her up over my shoulder and carry her on out. She smiled and said, “Okay, let’s do it.”
If there was any question as to whether her sense of humor had survived the accident, rest assured, it has. She asked for some soup, and then with an expression that read, Can you believe it? she added with a little laugh, “I’m hungry.”
“Just let me get up for a minute,” she requested. I again explained that she couldn’t; she was too hurt. She didn’t believe me. “You don’t understand. I just need to walk around a little bit. My back hurts.”
I denied her request.
“Then at least take off my booties. I’m so hot.”
“You’re not wearing booties. Your feet are wrapped up, sort of in casts.” I explained that everything that’s on her—these things on her feet to keep them flexed, the stiff plastic vest that runs down to her waist and is attached to the metal around her head—is necessary to help her heal.
Then she got mad, like I, in my son-of-a-bitch, controlling manner, decided that this would be the best treatment for her and had ordered all this stuff for her. “I’m sorry, sweetheart, but I can’t do anything about any of this. I know it’s uncomfortable, but they have to stay on. So please, try to relax and not fight them.”
“Can I have some soup?”
“No, you can’t have any soup. They still have to feed you through the tube in your nose.”
“How about a Diet Coke?”
“No.”
She thought for a moment. “A smoothie?” She smiled, her sense of humor back.
“What day is it?” she then asked.
I told her that it was Tuesday, November 13th. The accident was on October 23rd and she’s been in the ICU for three weeks. She thought for a moment and said, “Wow. Crazy.” I nodded.
She didn’t know the half of it. I told her a little about her injuries, but I couldn’t bring myself to tell her that she broke her neck, so I gave it a soft spin, “You fractured one of your vertebra, but they’ve fixed it. And see, you can wiggle your toes…”—she did—“…and you can move your arms, so you’re not paralyzed and you’re going to get all better. It’s just going to take time…unfortunately, a lot of time.”
She looked at me and with complete clarity offered, “I’m lucky to be here.”
I formed the thought, but before the words could come out, the tears came. I finally managed, “I almost lost you.”
And then she looked at me warmly and with remorse said, “I’m sorry to put you through that.”
“It’s okay.”
“Do you still love me?” she asked.
“More than you know.”
And then with another smile, “Can I have some ice cream?”
Yes, it was great Susan was hungry. What wasn’t so great is that earlier in the day, she had charmed her nurse into believing that if they left her hand unrestrained, she wouldn’t pull the NG tube (nasogastric intubation, or feeding tube) out of her nose. But no sooner had they turned away, then up went that left hand and yanked that sucker out, and in doing so, removed her source of nourishment.
Taking advantage of the mishap, the team decided to give her a swallowing test to see if she could do without the feeding tube. Sadly, she didn’t pass, so the tube had to go back in. Naturally, both of us were disappointed.
Even though I wouldn’t be able to bring her home just yet, it would have been nice to get her some soup or ice cream.
day 23
Before the accident, if I had to define empathy, I’d have said it is the ability to recognize and relate to what someone else is feeling. As of late, however, I have a new understanding and appreciation of the word.
Over the past few weeks, I’ve received countless messages from so many of you. I’ve seen your faces, heard your voices, felt your embraces. And with them, while they all contain an element of compassion, they also contain pain. Your pain, my pain, and Susan’s pain, all blurred together into one, all of us emotionally joined. This empathy has not been just about recognizing and relating; it’s been about sharing and experiencing.
Last night, our temple organized an impromptu healing service, intended for us to try to console one another in our collective pain, to create a safe place where, together, we could express our emotional grief. The evening wasn’t for just me or because of the accident, but for anyone who was experiencing a challenge in their life. I sat with my mother, who squeezed my hand throughout, hurting for Susan, hurting for herself, and hurting for me. She and I have sat together in temple on similar occasions in the past, holding hands as we comforted each other over the loss of my father, her husband, over the loss of my older brother, her firstborn son. But this time, even though she felt her own pain as well as Susan’s, I could tell that mostly she felt mine. And I have to admit it was comforting to just be a son for a few minutes with a mother’s hand to hold.
Overall, the evening was a perfect example of how a community’s love holds the power to heal—one another as well as ourselves. This morning began with Susan pursing her lips asking me for a kiss, to which I happily complied. Generally speaking, as soon as I walk in the room, she lights up with the same enthusiasm as a puppy whose owner has just come home.
The kiss was followed by a lot of conversation, and even though she has a trach, there’s now a bit of volume in her voice, which makes her so much easier to understand. And, like always, she’s interested in everything and everybody and constantly thinking about others. “Please bring the two Isabelles a little bouquet of flowers for their bat mitzvah this weekend.” How she even remembered that it was this weekend, I have no idea.
Physically, she began some therapy this afternoon, stretching her stiff knees and flexing her feet. They even sat her up in the bed, her legs dangling over the side. Even though her feet have yet to touch the floor, it was a huge baby step.
And through it all, all the smiles, the conversation, the warmth of the kisses, there was also the occasional wince of pain, pain felt by her, by me, and, I know, collectively by you as well.
All of us joined together by love and empathy.
day 24
When I woke up this morning, I checked my phone and there was a text from Susan.
I was totally confused. She couldn’t have sent a text. She can barely move her right hand or reach her phone on the bedside table. But nonetheless, there was a text: “Pls bring diet coke when u come.” (I later found out it was dictated to the nurse.)
What is it with this Diet Coke obsession! I’m not sure what it says when someone is taken off what was basically a continuous drip of a drug more powerful and addictive than morphine and immediately craves Diet Coke. I can envision Coke’s new campaign, “Diet Coke is so refreshing that coming out of a coma or three weeks in the ICU, it’s the first thing you’ll want to drink!” In any case, there’s no Diet Coke just yet.
In fact, no food at all, probably not until next week when they perform another swallow test. In the interim, the nursing staff still hasn’t learned that they need to keep Susan’s hands restrained, as she’s now pulled out her NG tube four times. After each time, it had to be rei
nserted, which is an excruciatingly painful ordeal involving inserting the two-foot tube up her nose and then down her throat, and then doing a chest X-ray to make sure it’s in the right position. You’d think they’d get it by now!
The problem is, half of what comes out of her mouth is lucid and rational, and so she very convincingly tells the nursing staff that if they release her hands, she won’t pull it out. However, if they comply, the other half, who still isn’t quite clear where she is or what’s happened to her, kicks in and she rips it out in an attempt to escape. So they’ve had to resort to tying her hands down, and now, between the restriction of the halo and her hand restraints, she naturally feels pinned down, which causes anxiety, frustration, and pure anger.
Physically, however, she is doing as well as anyone could dream, and they’re even beginning to talk about moving her to a rehab facility or placing her on the rehab floor here at the hospital, but all of that is yet to be determined. Until then, I know we’re in your hearts and minds. Keep us there. That, and many, many angels, Susan’s spirit and drive and love for you all, and your love for her are what have gotten us this far.
And we’ve got many, many miles to go.
the unposted: part 6
Kids may say the darndest things, but take a grown woman with a brain injury, multiple fractures, a few weeks in the ICU, and some powerful painkillers, and she’ll come out with some pretty wacky stuff. Separating the tragic circumstances from the equation, these can often be damn funny; and while I find it odd and incongruous to be laughing at anything about Susan, sometimes it’s impossible not to.
To illustrate: Following the visit of a friend who had rather thin legs and was wearing black tights, Susan pulled me in for a discreet conversation. “I can’t believe what she did to her legs?”
“What do you mean?” I asked.
“What would ever possess her to cut them off and replace them with those iron bars?”
“Um, she didn’t, sweetheart.”
“Oh, yes, she did. I saw them.”
She then pointed to her halo. “I think maybe she cut them off to make this,” and then added, “that was nice of her, but she really didn’t have to do that.”
Overall, there is a great deal of confusion regarding the halo. Because it’s so foreign to her, Susan can’t really grasp the concept of what it is. At one time while another friend was visiting, she pointed to it and said, “Did you see what my friend designed for me?” I wasn’t sure if she was showing it off, proud of it like it was some sort of ceremonial headdress, or disliked it and was being polite because a friend had made it for her.
And then there are the hallucinations. When our friend, Geoffrey, came by to visit, he asked Susan where she’d like him to sit (because she couldn’t turn her head and he wanted to be in an easy sight line for her). She motioned to a little couch that was completely empty at the time.
“Right there next to the fluffy-headed giraffe is good. They’re cute, aren’t they? I think there’s a whole family of them here.”
Then, when Geoffrey took a seat next to the giraffe, Susan once again beckoned me to come closer. I leaned in and she pointed at the fire sprinkler head on the ceiling and whispered, “Tell my mom she should take a couple of those. They’re worth a lot of money…something like three hundred dollars each.”
Okay, sweetheart, I’ll be sure to rip a couple out of the ceiling before we go.
And for some bizarre reason, the military has played a big part in her hallucinations. She’s always on some mission, on a boat or submarine traveling the oceans, always a dutiful soldier. The one thing she doesn’t care for on these expeditions is what she calls “army soup,” which I figure is the liquid they are pumping into her NG tube as nourishment.
Much of the time when her doctors visit, she thinks they are military personnel, and when they ask how she’s doing, she gives them her assessment like it is part of an official review, her voice very formal and authoritative. “Everybody’s been doing a great job. Doug’s been amazing. He rescued fifty marines just this morning!”
Generally speaking, the doctors try not to smile or laugh at the off-the-wall comments. I’m sure they are accustomed to these kinds of delusions. But every once in a while they can’t help themselves. Like when Susan completed her update and concluded it with, “Very good. Thank you very much. Dismissed.” And then bid them good day with an official salute.
My friend, an anesthesiologist in New York, advised me that ICU psychosis is extremely common and that Susan would snap out of it in time. Causes of this syndrome have been attributed to head trauma, or the blackout effect of the ICU, or the disruption of sleep rhythms, or the drugs, or all of the above. Susan certainly has had her fair share of them all. So I’m waiting patiently for her to return to her normal self, hoping that her head injury hasn’t damaged her more permanently. It’s an easy fear to get lost in, especially when the delusions get dark. Fortunately, these are less common than the comical ones.
“Did you hear that so-and-so and so-and-so are splitting up?” a friend asked Susan one afternoon.
“Yes,” Susan whispered, “and do you know why?”
“Why?” the friend asked.
Susan placed her forefinger about an inch away from her thumb and said, “He’s got a very small penis.”
I have no idea whether there was any truth to that, but this marked the period of Susan’s inappropriate and thankfully brief penis-obsession stage (apparently also another common result of a brain injury). During this phase, she would come out with completely out-of-character sexual comments, as well as some fairly outrageous requests. And while nothing says sexy more than a delirious woman with broken limbs, tubes hanging out of her, a trach stuck in her throat, and head encased in a halo, I have to admit there was something titillating about it. I even thought, Hmm, maybe a positive side effect of all this will be a spiced-up sex life. That fantasy lasted only a second before it morphed into a neurotic nightmarish thought. But what if she turns into some sex-obsessed nymphomaniac? I’ll never be able to satisfy her, and next thing I know, she’ll be seeking out anonymous sex to fulfill her insatiable desires!
Okay, so maybe I spun it out of control, but what it reinforced in me was that I would be very glad to have Susan back exactly the way she was. I knew that with the extent of her injuries, that was highly unlikely, but I hoped we could get close. That’s who I married, and who I’d happily have back again.
days 25 and 26
“I’m weary.”
That’s what Susan said to me as I greeted her this afternoon. And if there’s anyone who deserves to feel that way, it’s her. Over the last weeks, the amount of uninterrupted sleep she’s had has been minimal, waking every few moments from discomfort or from being roused by a staff member to wiggle her toes, squeeze a finger, receive a breathing treatment. And then there’s been her instinctive, unrelenting desire to save herself, to get up and leave and be reunited with her family, which is all part of the fight for her life. She emerged from that weeks-long battle in the ICU, and you’d think she could now take a break, relax, regroup. I certainly was feeling that way.
But it’s that second wave, one we didn’t see coming, that can really floor you. This is what hit me yesterday morning when I arrived. The nurses pulled me aside before I entered Susan’s room to tell me she was extremely agitated. The combination of all the drugs, plus the need to restrain her hands, had culminated in a paranoid delusion. (It also didn’t help that her TV was tuned to The Bourne Identity.)
When I got to Susan, she desperately insisted that the staff had “stapled her to the bed” and “kept her tied in the garage for the past three days while they took the children and shoved tubes down their throats.”
“Sweetheart, I know you don’t think so, but you’ve been right here in the hospital. The kids are fine; they’re at home now. We have to keep your hands restrained because you keep pulling out your feeding tube.”
Last night, after Susan pulled o
ut her NG tube yet again, they weren’t able to reinsert it, because after all the other attempts, they felt her throat was too swollen. That meant that it had now been more than twelve hours since she’d received any pain medication or nourishment.
No one is sure whether these delusions are reactions to too much medication or going cold turkey off it all, but since she wasn’t complaining of pain, we decided not to administer any more for now. Everyone was standing by in the event that she needed something; with her NG tube out, it would have to be an opioid. But because opioids might be the culprit of the negative reactions, they’re not anyone’s first choice to alleviate the pain.
As it turned out, Susan didn’t require anything, and by 7 p.m., they were able to get the tube back in and get nourishment going. It’s now been close to forty-eight hours, and she hasn’t been given anything for pain. I look at her lying there with all her injuries and can’t believe it. She’s not wincing when she coughs against broken ribs or cringing when rolled onto that shattered hip. Tomorrow this may change, but as of today she has gone two full days without anything—and it boggles my mind.
Overall, the day was a busy one, with back-to-back visits from doctors, therapists, nurses, more doctors, more therapists. By the time they started pouring in, Susan had calmed a great deal, though she was still confused and kept telling me she just wanted to go home. At one point she instructed me, “Tell the kids to pack. We’re leaving here in forty-five minutes,” thinking that the hospital was a hotel.
Throughout the day, Susan greeted each doctor and nurse warmly. And when each completed his or her often painful individual drill, she’d squeeze their hand, smile, and say, “You’re great. Thank you.” And then she’d turn to me and give me a nudge, indicating with her fingers that I should give them a little something for their trouble.
Those who witnessed this were politely amused. “It’s okay, Susan, we work for the hospital.” After each visit, over and over again, as soon as they were out of the room, she’d hold out her arms to me, her right wrist dangling limply because of residual nerve damage, and say, “Okay, let’s go.”
Struck Page 9