“Where are we going?” I’d ask.
“I have to get ready for the bat mitzvah. I don’t have anything to wear.”
Why she’s been so obsessed about this bat mitzvah, I have no idea. Since Thursday, to test her cognitive ability, I’ve been asking her, “What day is it today?” The answer is always the same: “Saturday.”
I’d tell her, “No, it’s Thursday.” Or, “No, it’s Friday.” But in her mind, it was always Saturday, the day of the bat mitzvah.
Of all the things to remember, she’s had that bat mitzvah ingrained onto her internal calendar. Yes, the persons of honor are daughters of two dear friends, but still…. So all day long yesterday, it was the same thing, holding out her arms, asking me to take her home so she could get ready. The gesture reminded me of what the kids would do when they were little and wanted to be picked up, begging for “uppy.” This was Susan’s uppy, and, along with seeing her spoon-fed Jell-O by the speech therapist to test her swallowing ability or seeing the nurses roll her onto her side to change the sheets, it wasn’t the first time I was struck by these childlike similarities.
So when I asked her this morning, “What day is it today?” she thought and looked at me like she has all those other times and answered, “Saturday.” I’m not sure if she really knew or not, but I said, “Yes, it’s Saturday” and then told her that in a few minutes, I would have to get going to get to the bat mitzvah. I was prepared, ready for the outstretched arms, ready for that simple, “Okay, let’s go.” She looked at me, tired from the battle, tired from the tests, tired from the sleep deprivation, and one step closer to fully coming back to me. And instead of holding out her arms, ready for her uppy, she sadly said, “I don’t think I’m going to be able to make it.”
It wasn’t defeat. It was just honest realization. All day long she finally slept. No more fighting, no more delusions, just long, long deep sleep.
And maybe tomorrow, my baby won’t be so weary.
day 27
Today was much like yesterday. Susan is still confused, still delirious, and still mad as hell at me for not getting her out of there. I try to explain it rationally, but it’s like trying to comfort a child mid-tantrum, frustrating and mentally painful for both of us. She was prescribed a medication to deal with these psychotic episodes, but it hasn’t helped as of yet, and when I research the drug she was given, one of the side effects is the very thing the drug is prescribed for. How to treat psychosis? Prescribe a drug that “may cause changes in personality, unusual behavior, or hallucinations.” We’re still trying to find a balance, but there are so many possible contributors to her mental state that it’s hard to pinpoint the cause and therefore difficult to find the best solution. It’s probably just going to be a matter of time until we exit out of this phase, but that day won’t be today.
As for her physical pain, other than some Tylenol, there’s still been no medication administered. No pain medication. Really?
I can’t help but again consider this enormous circle of support she has, the prayers said here and, for that matter, around the world, the empathy and energy sent. Has this collective light and love lifted Susan’s pain, diffusing it and allowing it to be absorbed among us? Another unanswerable question, but by the warmth of reception I received yesterday at the now famous bat mitzvah, I cannot discount it. Assuming that I’m getting just a fraction of what is being sent to Susan, she is receiving a huge amount.
Part of this is because her need has been so “loud.” Big in personality, big in love and generosity, it’s no surprise that Susan’s trauma is big and loud. But I can’t help thinking about the quiet ones among us, the ones who only whisper their pain or, worse yet, suffer silently. From the get-go, Susan’s condition has been so public; there is no cloak of secrecy about it at all. The accident was on the news all day, and family and friends were immediately notified. As I sat in services today, I thought about how many of us can’t be so public about our pain, and therefore don’t receive the benefit of so much love and support even when it is needed just as badly. Perhaps we have an illness that has a stigma attached to it, or a financial burden, addiction, troubled marriage? We all have something, but there isn’t always the opportunity to be so loud about it.
Before the accident, I was one of the silent ones. We’re advised to lean on friends, to share, to trust, to allow for the community to help, but it’s not always that easy.
And so, rather than put the burden on others to come forward, to put aside their fear or pride or shame or any other reason that keeps one isolated and alone, I think it’s a safe bet to just assume, not with pity or sorrow but just the understanding, that in the person next to you, there is most likely some need there. Oftentimes, the pain is just something we’ve learned to live with.
This morning, I was talking about how remarkable Alyce and Michael are and commenting about a child’s resilience and ability to rise to what life throws at them. I don’t think this resilience is limited to children, though; it’s in all of us—the ability to adapt and readjust, even when it seems impossible that we could survive those “if that ever happened to me” events. Life happens…to all of us, and we persevere. We find a way to make it our new normal and to deal. And when we can lean and learn and receive love from one another, we get through.
And so I look at Susan, spending another day sleeping, still not fully aware of much yet or making any huge stride forward nor slip backward, just living another day. And it makes me think…we don’t get something every day.
But at least we get another day.
day 28
“I can feel my brain getting clearer.”
That was what she said to me tonight, and it was true. She was sounding clearer, closer to being “back,” with just the occasional out-of-left-field comment.
The day didn’t start out that way, though. Rather similar to yesterday, it began with a story, told with less anger but with total conviction of its veracity. I have learned to not challenge these tales, to instead just listen. As soon as I entered the room, Susan was very eager to tell me something, which she proceeded to do through her raspy trach voice.
“You’re not going to believe what they did now.” The they she was referring to is the nursing staff who, according to Susan, over the past few days, have perpetrated many heinous acts.
When I try to explain that she’s confused, it’s only brought wrath and mistrust toward me. So I’ve learned my lesson, and this time answered, “What? What did they do?”
“Well, around a half hour ago, they came in and woke me up and told me that I was in charge! I mean, I’m happy to take on more responsibility, but I don’t even know the kids here. Some are thirteen and fourteen, and it’s just not fair of them to ask!”
“No, it’s not,” I said. “They should never have asked you to do that.”
“I know! It’s not right!”
“Don’t worry about it for a second more. I’ll take care of it.”
“Thank you,” she said.
That was the end of it, and she relaxed with an easy sigh, now able to just enjoy me being there.
As the day progressed, so did Susan, starting with physical therapy that had her sitting on the edge of the bed for ten minutes! This was the goal and she hit it, which means the next step will be to transition into a wheelchair.
Following her physical therapy, she had speech therapy. Her voice is getting stronger, but her swallowing unfortunately is not, which means that tomorrow afternoon, she’ll be getting a feeding tube put directly into her stomach. There are pros and cons to this. The pros are that she’ll be able to get that NG tube out of her nose and therefore shouldn’t require hand restraints, which have been a major source of her agitation. The con is that it’s another tube, and our goal is to remove them rather than add them; but for the short term, it feels like the right move.
Among the various questions the speech therapist asked Susan during her session was what she did for a career. Susan answered, “I�
�m a singer. I love to sing…all kinds of music.”
Though it’s true that she loves to sing, I asked the question again. “Sweetheart, what do you do?”
This time she corrected herself and answered that she taught parenting classes and was an actress who does TV or movies or voiceovers. “Whatever someone will hire me to do,” she said with a smile.
Her first answer was interesting, even if brought on by exhaustion or semi-delirium or both. The truth is, singing is a defining part of who Susan is, and music has always played a big role in both of our lives. I always joke that it’s a good thing we didn’t meet in high school because I would have immediately rejected her based on her record collection. But as different as our tastes in music are, we share the same love for it.
In her session with the speech therapist, when asked to speak an “A,” Susan didn’t just say “A,” she sang it. She didn’t even know she was doing it. It was just raw and instinctual.
Afterward, fairly wiped out by all the therapy, she lay there and made a little face with her mouth.
“What?” I asked her.
“I’m sorry.”
“About what?”
“Putting you through all of this.”
It was another part of her finally reemerging, her vulnerability laced with a little sorrow.
“It’s not that it’s my pleasure…but it’s my pleasure,” I answered.
She smiled, understanding what I meant.
Susan has always said that when it comes to marriage, she doesn’t believe in acting out of “compromise.” She believes you do things for each other because you love each other, and that’s it. And she is true to that advice, not always happy about doing something with or for me that she doesn’t want to, but doing it anyway because she loves me.
I reminded her of this and told her that this is one of those things.
“In sickness and in health,” she said.
“Exactly.”
And then she waited a beat before asking me, again that raw vulnerability poking through, “Am I going to get better?” The sweetness, the innocence, the hope, instantly broke my heart.
“Yes. You’ve already come so far.”
She forced a little smile, and fighting sleep, her brain getting cloudy again, she looked at me one last time. “I just want to get better and sing a song again.”
And then she let her eyes close and drifted off, so very tired.
I wanted to tell her, “You already have, sweetheart. It’s a beautiful, sad, inspirational, and wonderful song. You just haven’t heard it yet.”
the unposted: part 7
It was around this time that I received the first hospital bill.
“I can’t wait to see how much this is going to be,” I muttered to myself.
When I opened it, it took me a minute to even process the number. This was the amount that was billed to insurance, not that I owed…yet. And the reason it took me so long to understand it was because the number didn’t even fit into the little “amount billed” box. It spilled off the page to the right and was cut off, so it looked like a bizarre half-number. When I finally figured out what it was supposed to read, I just let out a laugh. $1,507,236.75.
My heart didn’t sink, I didn’t go to Oh, my God, how am I ever gonna pay this off? Instead, as I said, I laughed, because there was no way I’d even come close to being able to pay that sum. And this was only for the first few weeks or so; we weren’t even close to getting released. For the time being, I wasn’t going to worry about it. Fortunately, I had good coverage from the work I’d done with the animation guild. And, frankly, without that insurance, I don’t know how I would have coped. It would have added yet another gigantic heap of stress onto an already barely manageable situation.
I hadn’t gone back to work in all this time; I was still trying to get notes out of the network on my pilot, but the response remained, “Stay focused on the important stuff, your family. Don’t worry about this right now.” Rather than acting as encouragement, these words began to sound like the kiss of death, sort of like the boy or girlfriend who says, “Really, it’s not about you. It’s me,” or “I just don’t think I’m ready for a relationship right now.”
This is the entertainment business, and I knew if they really cared about the project, they’d be saying things like, “Not to rush you or anything, and sorry about your wife and all, but when do you think you’ll be up for tackling the notes?” Not saying anything was their way of letting the thing crash into the Bermuda Triangle of television where so many pilots just disappear. I’d keep trying, but I couldn’t help feeling discouraged.
Still, the important stuff was getting better. So, like the hospital bill and many other stress inducers, I was going to put the show aside and heed the network’s words, stay focused on the big stuff and try not to think about it for the moment.
If one thing had to die in this whole ordeal, let it be my show.
day 29
The best-laid plans…
Last night at midnight, they discontinued her NG tube in anticipation of putting the PEG (percutaneous endoscopic gastrostomy, or stomach-feeding tube) in today. At 5 p.m., they took her down and two hours later, she returned…without the PEG. The story as I heard it was that a trauma patient came in, and Susan got bumped. I certainly know what it’s like to be on the other end of that, so I couldn’t begrudge it too much. Priorities are priorities. And despite being disappointed, I’m just trying to hang on to that “Well, maybe things happen for a reason” philosophy.
She was complaining of neck and shoulder pain, so I rubbed her shoulders, but when she asked me to rub her neck, I dared not even touch it but rather rested my hand against it, hoping that just my touch might help. I’m not sure it did, but she did enjoy the shoulder rub, which to many of you will come as no surprise. Susan is like a needy cat or dog when it comes to massage, and honestly, I have a low tolerance for giving them.
Early in our relationship, as with most courtships, I offered to give her a massage and she eagerly accepted. As the years have passed, like other romantic gestures, the massages have dwindled, and I happily let anyone with the will and a strong hand step in. So today, when she asked, I complied and then complied again and again, switching from right to left to right. “Higher, more to the center, down, right there, good.” Even as I rubbed, she had the nerve (and the delusion) to ask the nurse if they “could have a good masseuse who worked here come on by,” like our “hotel” was now some luxury spa.
Following what felt like a two-day session on her shoulders, Susan’s physical therapist arrived. Since yesterday went so well, today they planned to try to get her into a wheelchair. Initially, she was tired and not really feeling up to it, but knowing how important it is to get up, I pressed, and she ultimately agreed to try.
Unlike just sitting her up at the edge of the bed, this was a complicated procedure, involving disconnecting many tubes, positioning a slide board to bridge from the bed to the chair, and a lot of shifting, lifting, and sliding. But we succeeded, and she was in it!
While I felt the rush of a major accomplishment, Susan experienced the opposite, nearly crying over how hard the simple act was and growing discouraged and frustrated about her inability to do anything. I reminded her that in four sessions, she’s gone from sitting at the bed for three minutes, to five minutes, to ten minutes, to now sitting in a chair. It was huge! And it was, but for Susan, in that moment, I think she realized just how long and difficult a journey this would be.
Once in the wheelchair, we cruised around the entire hospital floor, and though she initially enjoyed the change of scenery, I also think it was both scary and exhausting for her. After about fifteen minutes, she wanted to go back to her room, to the safety of her bed. I took the long route “home,” and after wheeling her back we embarked on reversing the process to return her into bed. It was excruciating—painful for her and painful to watch. The ordeal took about forty-five minutes and wiped both of us out. In addition
to her exhaustion, it also left her with that pain in her shoulders again.
As I rubbed her shoulders once more, she looked at me and said, “I know. This is your worst nightmare.”
I leaned into her, gave her another squeeze, and replied, “No, this is nowhere near my worst nightmare.”
day 30: the night before thanksgiving
Thankful that the “How close she was to dying” wasn’t any closer.
Thankful that I get to sit in a room with her even when out of frustration, anger, and disorientation she tells me to get the hell out.
Thankful she wants to go home so badly, which gives her the spirit to fight so hard.
Thankful for her mother’s strength, despite seeing her daughter in so much pain.
Thankful for family and friends, who have caught so many of my tears.
Thankful for the music and laughter, which is its own medicine.
Thankful for the arms around both of us, even if miles and miles away.
Thankful for my children, who in each of them I see the very best of her.
Thankful for another day to feel.
Xxoo
days 31–33
I guess, to begin, I have to go back to Tuesday night…
I had heard two stories about why her PEG (the stomach-feeding tube) hadn’t been able to be put in that night. First, there were the four traumas that bumped her in priority. The second story, however, was quite different and sounded more likely to be the real reason: When they got her into the procedure room, they realized the vest that attaches to her halo had to be modified to allow access for the feeding tube, and they weren’t prepared to make that alteration in the moment. Why this hadn’t been thought of in advance, I have no idea.
In any case, when I returned to her Tuesday night, I asked her what had happened and she rolled her eyes, like, Can you believe this? She wasn’t upset, just felt like the whole thing was ridiculous. I asked her if she had been waiting in her bed down in the procedure room the entire two and a half hours? She answered yes, seemingly quite lucid about the whole thing, until she added with exactly the same casual conviction…
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