It was around this time that I received a call from one of the rabbis at our temple. In addition to asking me how the kids and I were holding up, she wanted to inform me about a call she had received from one of the congregants. She couldn’t tell me who it was—they wanted to remain anonymous—but this congregant wanted to know how I was doing from a financial standpoint as well. They were prepared to make a donation to help with our expenses if I needed it. I was left speechless.
“Wow,” I said. “That is incredibly generous.”
“It just speaks to how moved everyone is by what you and your family are going through.”
I generally have a hard time asking for help from anybody regarding anything. Not that I haven’t ever needed it, but I either feel it’s an imposition, or guilty or embarrassed, or that it’s admitting weakness if I can’t get through whatever it is on my own. But here we were facing exorbitant medical costs (even though I was hoping our insurance would cover the majority of it); I was no longer employed and had no idea when I would be able to go back to work; we were already in a fair amount of debt, digging deeper and deeper into a home equity loan, borrowing from my sister, and racking up credit card balances. So again, why was I grappling with accepting this token of kindness? Because, ultimately, it felt like another of God’s tests, that it would be exploitative of me to reap a financial bailout from the trouble I had gotten myself into, which began prior to the accident. And, if I took the offer, what cosmic consequence might I face as a repercussion? It was superstition mixed with pride mixed with guilt—the perfect Jewish cocktail.
But I have to ask myself: What good is it to have a village there to support you if you’re unwilling to accept the help? And part of me felt like I was definitely playing the “It’s okay, I’ll just sit here in the dark” martyr. It’s how I was raised. We didn’t ask for help; we figured it out on our own.
So still, to this day, my reluctance to ask for help remains intact. Maybe it’s because, for me and for many others, to take actually requires more strength than to give. Giving is effortless when it comes from a place of love. Taking, with a conscience, requires far more vulnerability and forces us to deal with whatever baggage we might have regarding accepting these gestures.
As for the financial offer from the rabbi, I ultimately graciously declined, but it still leaves me wondering: When someone is there to provide some much-needed light, why do we so often still choose to sit in the dark?
day 18
There’s a thing that Susan does, not just with me, but with many of you as well. When I tell her I love her, she responds, “Much more” or “More.” It’s cute, it’s endearing, but here’s the thing…it’s absolutely true. Her capacity to love is so great that no matter what you throw at her, she will come back at you with more.
It’s how she lives; it’s how she loves.
More.
Even in the state she’s in, she is still able to muster that warmth and glow. Which is how it was today, a much better day than yesterday. Fever way down, she was alert and more focused. When I took her hand, she looked at me, smiled, and squeezed my hand tightly. And then she mouthed, “Cold.” I got her a blanket and she mouthed, “Thank you.”
And then she mouthed a whole lot of stuff that I couldn’t decipher at all. But she was talking! Talking without sound, but still talking. And very connected. I told her about the accident again, about Michael’s school conference today, about Alyce’s speech contest last night. Some of what I said caused confusion, mostly because I think that in her mind, Michael’s school conference is still a couple of weeks away, and Alyce hadn’t even signed up for a speech contest before the accident.
Her warmth is hardly limited to just me. With the doctors and nurses, as battered and stitched up as she is, head locked in place within a metal dome, she still manages to give them all a smile when they come in to either check on her, shift her, poke her, adjust this tube or that line. Because that is who she is. And I know that right now if we stop and picture her in our minds, what happens? We smile. There’s something about her face, her energy, her life force that brings out the same in each of us.
Today, I went to the storage facility that houses what little remains of her car to see if I could find her glasses. Miraculously I did, and among some other items, I found a headshot of hers that she kept in the back-seat pocket. I pulled it out and looked at that beautiful face, her eyes warm and blue, her smile that just makes you want to look at it again and again. I slipped the photo into my backpack so that I could tape it up in her room and the entire troupe of white-coated magicians could see the treasure who has been hidden beneath the broken bones and bruises but is finally starting to reemerge. Because they haven’t really met her yet, but soon they will and soon they will know.
And, of course, at the end of the day, before I left her room tonight, I said, “I love you so much.”
True to form, she mouthed back, “Much more.”
day 19
“I want to go home now.”
And then she’d struggle to lift her broken body from the bed.
“You can’t, sweetheart. Not yet.”
Then she again attempted to shift her body, unable to lift her arms because of the restraints necessary for preventing her from pulling out the feeding tube in her nose or the breathing tube in her throat.
“Why can’t I just leave?”
These were some of the words I was able to decipher this morning. Susan was alert, and the staff had just recently shifted her position in the bed, but she still wasn’t comfortable. After a few lip-reading attempts, I was able to understand that she wanted the pillow removed from under her arm. So I did, and she mouthed, “That’s better.” This relief was short-lived, however, as she began to squirm again, trying once more to get into a more comfortable position. The sad truth was that there wasn’t a more comfortable position.
Then came the series of sentences I didn’t understand. “Try again,” I’d say, and she would, mouthing them slower and more exaggeratedly, but I still couldn’t get them, which led to frustration for her, which led to frustration for me.
Each stage has its challenges: the initial trauma room and that first day, when I wondered if she was going to live or die; the subsequent surgeries and those worries; the ups and downs of fevers and respiratory issues. And here we are now, entering a different challenge—one that I’m happy to confront, mind you, but just a reminder that not only is this a marathon, but they keep changing the course and adding new obstacles every few miles.
This particular challenge: words without sound. Open to interpretation, misunderstanding, simple nonrecognition, like we suddenly speak different languages but are still desperate to communicate. She again mouthed something.
“You want me to scratch your left booby?”
Actually, that one I got. But so many others I couldn’t, which left me feeling helpless, because even if I could understand a request, chances are I couldn’t do anything about it. I couldn’t make her more comfortable. I couldn’t get her something to drink. I couldn’t bring her home.
So ultimately, as happy as I was to see Susan trying to communicate, I still asked her to not talk, to just try to relax and hold my hand. Which she happily did.
I stayed for a few minutes and then slipped out of the room. Her nurse told me that that was for the better. They want her off the ventilator and, as he explained, trying to communicate only agitates her, which makes her breathing more difficult.
Unlike Susan, I understood the nurse’s words only too well—like the difficulties she’ll encounter from withdrawal from the pain medication, the inevitable pneumonias that will send her back to the ICU once she’s been released, the hell of being trapped behind the iron bars of the halo for another six weeks. He wasn’t trying to discourage or frighten me, rather the opposite, to help me steel myself for the many miles ahead. Still, the words were sobering, especially coming off of yesterday’s elation of seeing Susan begin to mouth her silent word
s.
Then there are these words that I write, also without sound. These words that have elicited so many responses from you, stories of your own, thoughts, prayers, meaningful words shared with your loved ones, hands just being held.
And that sound I do hear…and understand beautifully.
the unposted: part 5
I left a piece out of that post.
Realizing that Susan was going to be in the hospital for some time and would probably want to check her emails, maybe watch some Netflix or something, text me and friends, etc., I bought her an iPad. When I mentioned this to her nurse, he looked at me like I was absolutely crazy. Up until this day, this nurse had been fairly positive and upbeat, and particularly enjoyed the music I had brought in for Susan to listen to, which was full of Broadway songs, standards, Barry Manilow, ABBA, all of Susan’s favorites. He would dance around the room, singing along as he checked her vitals and adjusted the ventilator…
“So when you’re near me, darling can’t you hear me…SOS.”
“I love working in this room. Your wife has great music.”
I don’t know about great, but…
Anyway, in addition to hoping that Susan would enjoy it, I also believe in the healing power of music, so I made sure that Susan had a little iPod setup. There were times when she gestured for me to turn it off or down, but for the most part, I think it was a comfort.
Back to the iPad.
When I told the nurse I had bought one for her, I got one of those strange reactions, similar to the “Oh, your life is never going to be the same” responses that I had previously heard from certain not-so-positive people. He said, “Oh, it’s gonna be a looong time before your wife uses an iPad.” In addition to the comment being steeped in negativity, I felt he was really saying to me, “Oh, buddy, I’m not sure your wife’s ever going to be using an iPad again.”
Where’s your crystal ball? I wanted to know. And even if you do base this on experience, why crush me versus saying something innocuous like, “Oh, that’s nice. They can be helpful with her recovery.”
I think he thought he was doing me a favor by speaking the truth, by forcing me to face reality. But when it isn’t a reality, at least not yet, all this attitude really does is become a hope-dasher, and who needs that? I’m happy to face the music when it actually plays, but for now, it wasn’t.
Because, just like ABBA, I was hoping for a little SOS.
day 20: november 11
I’m not sure when I started doing this, probably around the time of my first digital clock, but if I happened to look over at the time and saw that it was 11:11, I took that as a sign of good luck. And being that it was a sign of good luck, I decided that I would make an 11:11 wish and hold that wish until the time changed to 11:12, when that wish would be sealed. The “wish” over the years has basically remained the same: “health, happiness, success, and all good things for our families and loved ones.” Pretty all-encompassing, but I believe when you wish, you might as well wish big.
So on 11/11, a date that comes once a year, this entire day should be especially lucky. This morning, as usual, I walked down the hall to Susan’s room, anxious as always but trying not to speculate on what might face me. I passed by the few ICU rooms that led to hers, which I barely glanced into, just catching glimpses of family members in their chairs, solemn faces perched bedside by bodies hooked up to machinery. I heard the “toot toot toot” of ventilators as breaths were missed or tubes were bitten down on in pain, the same sounds I’d heard in Susan’s room just a few days earlier.
I reach Susan’s room and look inside. Her bed is empty! My heart stops as I try to process what I’m seeing. Dismissing the worst-case scenario, I think that maybe she’s been taken for a test, but if she had, they would have wheeled the entire bed and hers is still there. And then it looks like the shape of her body is there, off to the side. My mind immediately races to My God, did she manage to pull herself up and is laying half off the bed and half on the floor?!
Then as I get closer, I realize…no, she isn’t on the floor. She is actually sitting up, in a very elaborate chair next to the bed! And as soon as I walk in, her expression goes wide with anticipation, and she mouths, “Can we go home now?”
I try to explain that we can’t leave, and she looks at me confused, wondering why not. I tell her that she has a lot of broken bones, and again she looks puzzled, “No, I don’t.” She says she wants to stand up and tries to do just that, but then quickly relaxes, realizing the effort is futile.
“Sweetheart, you should try to nap.”
“I’d rather nap at home,” she mouths back.
After several minutes of this back-and-forthing, her respiratory therapist enters, very pleased and with good reason. Susan has been off her ventilator for more than twenty-four hours, and, in fact, they have removed the entire machine from her room. She is breathing very well on her own, coughing in attempt to clear her chest, which is all great progress. The therapist, so encouraged, is going to recommend beginning speech therapy tomorrow, and to give us a little preview, she plugs up the air vent in Susan’s trach tube and tells her to take a deep breath in and then make the sound of an “A.” Susan does and out comes that “A,” hoarse and phlegmy, but it is definitely an “A.”
Susan’s next words were “I love you,” not so much to me but prompted by the therapist to say it, like when a toddler is told, “Say, ‘I love you,’ ” and they dutifully follow. Still, it is a thrill to hear!
And then as the therapist is finishing up, Susan mouths to her, “Where do you live? We live right here in Hollywood.” (My lip-reading has really stepped up its game.) I wonder how she knows we are near Hollywood when she barely realizes she is in the hospital, but what makes me really smile is that it is such quintessential Susan—making conversation, not asking for a drink or to untie her hands, but rather just pleasant socializing. And as the therapist leaves for the day, Susan mouths, “Nice to meet you.”
There is no one who can make friends like Susan Segal.
And that hasn’t changed one bit. So as this 11/11 transitions into 11/12, I don’t know what tomorrow will bring, what setbacks encountered or steps forward made, but I do know this: One very big wish has already come true.
day 21
She’s out of the ICU!
Another day without the ventilator, another day without fever, and suddenly they were moving her. Before we knew it, we were saying goodbye to our home for the past three weeks. It was both exciting and a little nerve-racking. Despite the constant trauma and tears that lived on that fifth floor, there was also a sense of comfort there…trust.
Now there would be a new room, a new team of nurses to meet, and even though I know it’s one step closer to getting Susan home, it will take some adjusting…for me, anyway. For Susan, she just greeted the new nurses with a smile; they were all new friends to make, new people to win over.
I wasn’t present when the speech therapist came around to do her assessment, but when I did return, Susan’s new nurse came running in, genuinely excited to tell me about it. The therapist and Susan had had a whole conversation, which began with Susan giving the therapist the name of her husband. Happily, she hadn’t come up with some drug-induced fantasy, which would have been recorded on the whiteboard in the space reserved for “family/contact,” leaving me to embarrassingly make the correction. She told her where we live, what I did, that she spends the summer in Cape Cod. All true, and all things considered, very encouraging.
Susan will spend the next couple of days acclimating to this new environment, which hopefully will get her back on a more regular sleep cycle, and with each day, I suspect she will gain more and more clarity. I’m still not convinced she is really aware of what happened to her and where she is. But that will come, and when it does, I’m sure there will be accompanying challenges.
Until then, she’s propped up in her bed, doing one of her favorite things, watching a movie. It’s a romantic comedy, and I doubt she�
��s absorbing any of it, but her glasses are on, and as she fumbles for the remote control to do God knows what, there’s comfort in this familiar sight.
I sit here thinking back on the three weeks that led us to this day—the countless hours of waiting and worry, the ebb and flow of tears, the deep exhales of relief that another day has passed. Even as recent as this time has been, like a distant memory, it’s behind us now. So now, with butterflies fluttering in my stomach, we enter the next chapter.
Yes, change can be scary, but it can also be really, really good.
THE SECOND PART: BEYOND THE ICU
don’t drop our guard just yet
As excited as I was that Susan was getting out of the ICU, I was also aware that we were far from being in the clear. There was a multitude of circumstances that could be disastrous, such as blood clots, more infections, the return of pneumonia, not to mention the continued neurological impairments and potential lasting physical issues. So while I could remain optimistic, the last thing I could do was become complacent.
My limited but seemingly endless experience with all this had shown me two things: be grateful for the progress, and remember that everything could turn at any moment.
day 22
I almost turned off my phone last night.
I never used to go to bed leaving it on, but understandably, for the past three weeks, I made sure it was on, fearful that the hospital would need to reach me. Last night, though, with Susan out of the ICU, I thought, You know, I think we’re out of the woods. I could probably turn my phone off. In the end, though, I decided to leave it on rather than tempt fate.
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