Other than that, the time we’ve spent together during this rehab period has largely been quiet and very sweet, except for a couple of times she’s felt Dr. McSegal has raised his controlling and lecturing head. I can’t help but feel the pressure of her looming discharge date, but I have to be careful to not let my intended support and encouragement turn into pedantic task mastering.
I’ve also taken the opportunity to finally read to her the many, many cards she’s received, which I’ve been holding on to until she could fully absorb them. With the majority of them, I’m only able to read a few lines before I have to stop, collect myself, and continue. What comes through collectively is the profound influence Susan has had on so many, and how wonderfully inspirational she is while being so, so loved.
To each, she responds, “Wow” or “How sweet,” somehow continually surprised by the absolute pure affection and admiration that is held for her. And as I pull out the next one from the stack, I think to myself that maybe one day she’ll get it…or then again, perhaps not.
And maybe that’s part of the reason why there’s so much affection there in the first place.
the unposted: part 11
Like that wave I experienced early on, just when you least expect it, something comes up and knocks you on your ass.
The other day, I was visiting an Aussie friend who invited me for tea. As we were talking, my cell phone rang. It was Susan, just checking in, and I stepped outside to chat with her for a few minutes. Just the day before, after reading to her the many cards she had received, I put them all in a big box, which she named the “box of love.” When I got home that day, a book had arrived for me, sent from her high school class, who had all been following the updates on the class’s Facebook page.
At this point in her recovery, Susan knew I was sending out the updates, but she hadn’t yet read any of them. While I was writing them, there were many times when I grappled with the fear that I might be disclosing information she wasn’t comfortable sharing. But the support we both received from these missives was so immense that I continued. They were written out of pure love, so where could the harm be in that?
And then this book arrived from her former classmates.
I told Susan that members of her high school class had been very kind and supportive in emails to me, and that they had also sent a book. The book was about a mother who was dealing with a brain injury her child suffered following a skateboard accident. When I told Susan this, she exploded. “You told everyone I have a brain injury?! Why would you do that?!”
“Because you did.”
“But everyone didn’t need to know that!”
My heart sank and my head spun. In that moment, my mind ran through all the other updates I had written. What else had I shared that could be perceived as a betrayal of confidence?
She was furious, but this was a different anger than the delusional anger I had experienced. This anger was rational. I tried to explain that I had simply written about it as one of her injuries, like one of her broken bones that was now healing. And that her brain injury was also healing.
She wasn’t having any of it, and, in that backyard of my friend’s house, I lost it, trying to explain to her through sobs that all I’ve been trying to do is help her, take care of her, take care of the children, take care of myself. I was doing the best I could. “The last thing I would ever do is something to hurt you,” I added.
Hearing my pain and frustration softened her. “I just don’t want anyone to look at me differently or treat me differently.”
“I understand. I’m sorry. They won’t.”
I didn’t think they would. I hoped to God they wouldn’t. All I could think about was the irony in this. These updates, written out of pure love, were going to become our marriage breaker, the cause of our divorce.
Following that phone call, Susan began reaching out to friends and asking them if she should be embarrassed about what I had been writing about. Fortunately, the response was a resounding “No.”
Hearing this made me feel much better and helped my cause with her tremendously, but I also knew that it wouldn’t be until Susan read what I had written that she would know it for herself to be true.
At least, I desperately hoped so.
days 62–64
“I’m walking! Oh, my God, I’m walking!”
Christmas arrived a couple days early for me when Susan gave us the gift of taking her first few steps. Supported by parallel bars, she stood seemingly much taller than ever and was even able to let go of the bars for a few seconds, standing freely on her legs. Full of conflicted emotion, recognizing how comparatively minuscule the steps were relative to the distance yet to travel, she tearfully acknowledged the enormity of the accomplishment.
After her exhilarating therapy session, now in the wheelchair, we left the hospital floor and ventured outside, Susan feeling the cool air on her face for the first time in two months, breathing in the fresh air. We strolled around the plaza area, enjoying a little walk together and talking. After a few minutes, I asked her where she’d like to go next, and in perfect form, she answered, “I don’t know. Is there a gift shop?”
Back in her room, my brother and his girlfriend came to visit and we just sat and talked. If I closed my eyes, the conversation could’ve been going on in our living room or at dinner. I haven’t been too worried about Susan’s cognitive functions for at least a week now, and my lack of concern was further solidified with my enjoyment of just listening to her. She talked about her birthday, which fell on Yom Kippur this past year, just a few weeks before the accident, and how she spent a good part of her birthday in services. She mused, ironically reflecting about the holiday prayers…“I keep thinking about Yom Kippur, ‘Who shall live and who shall die,’ and who shall get hit by a bus.”
Just like the rest of us, she too is grappling with the randomness of life and the bigger questions of “Why?” and “What if?” “What if I had just left a few minutes later?” But she doesn’t dwell on trying to make sense of it or going back in time; rather, she simply states, “I can’t believe I’m here.” And in that one statement, she covers two meanings, “I can’t believe this happened to me and landed me here,” and “I can’t believe I survived.”
It’s hard for all of us to believe.
Michael and Alyce left on Saturday to spend the holidays in Vermont with my mother and sister, Susan’s injuries forcing her to ponder her future participation in a sport of which she was never much a fan. “I guess I won’t be skiing again,” she tells my brother.
“I don’t see why not,” says his girlfriend, referring to Susan’s miraculous recovery.
“Yeah, but I don’t see why,” Susan retorts.
And I smile. She asks me, “What?”
“Nothing. You’re funny.” And she is, having a field day with the hospital staff when they suggest she decorate her halo for the rehab floor Christmas party. “Oh, sure, drape a little tinsel around it and maybe some Christmas lights…and then just shoot me.”
In fact, this year the rehab gathering would be the one holiday party we wound end up attending together. Making the best of the situation, Susan asked some of the other patients the equivalent of “What brings you here?” One patient, who was now up and walking, said that a horse sculpture had fallen on him and broken his back.
“Well, look at you. You’re doing really well,” Susan complimented.
“Thank you. I was actually having a hard time last week, but you really helped me,” he said.
“Me? Really? How?”
“Well, I was thinking that I had it so bad…and then I saw you.”
“Gee, thanks,” Susan replied before taking a sip from her drink.…“What a great party.”
He laughed and went on to explain that she had a great soul, and he thought that if she could have such a positive attitude with all she was going through, he should stop feeling so sorry for himself. So here was someone Susan had never even spoken to—maybe he s
aw her smile as she was wheeled to the gym or heard her laugh and joke from her room—and he was inspired by her energy and love of life.
It made me think about this thing, a “positive attitude,” and wonder if it’s something you can choose to have or if it’s hardwired. I do think you can choose to find and focus on “purpose,” whether that’s family, friends, goals, whatever will get you out of bed in the morning, and from that purpose a positive attitude is born. For Susan, that purpose is her kids, her friends, her home, me, all the life she has ahead of her.
This is how we spent the day. Hardly the place we thought we’d be, but happy just the same. There was no Vermont snowfall outside our window, but it absolutely was still very much Christmas.
days 65–67
She just keeps getting better and better every day.
Starting yesterday morning, I could immediately see that things were different. She had more energy, didn’t “ooh” and “ahh” in pain when transferring from bed to wheelchair, and was just ready to go. When we got to the gym and she was wheeled onto the parallel-bar platform, she scooted herself forward in her chair, and with just the most minimal amount of guidance, lifted herself to a standing position, then gripped onto those metal bars and took step by little step until she had traveled the eight feet of the platform. She then sat herself back down into the wheelchair by herself, we wheeled back to the starting point, and she did it again.
It wasn’t just the physical accomplishment that differentiated the day. It was the first day she really felt good about what she had done, really felt like she was making progress. She had been promised that the pain would diminish and that she’d get stronger, but it wasn’t until she was able to experience the truth of that promise that she believed it. Now she has and sees that this journey back to her former self will one day come to an end.
She is so generous with her therapists, effusive with her appreciation and love for them, building bonds of friendship that are a mere two weeks young yet still indescribably deep. They get goose bumps watching her achievements, and while sometimes she poo-poos their praise, other times she tears up. “I did that, didn’t I? I really did that!”
Yesterday marked the day her feeding tube, the G tube (or as Susan jokes, the U tube) was removed. At the bedside in her room, her doctor just pulled it out of her stomach with a pop. The hole will close by itself like the one in her throat did when they removed the trach, and since her catheter was also removed a couple of days ago, except for the halo, that’s it; there’s nothing left—no IV, no tubes, no stitches…just her.
Feeling elated from the day, I suggested we do some more exploring beyond the confines of the seventh floor. It was cold, but we bundled her up under a blanket in her wheelchair and ventured down in the elevators, first checking out the restaurant, then the gift shop, where she browsed some knickknacks, letting the feel of some clothing play against her fingers. We bought a few pieces of chocolate, which she ate with an ecstatic moan, and then continued on, finally sharing some French fries from the cafeteria.
It was our version of a foreign-holiday vacation, exploring this little town she hadn’t yet seen. We strolled along the plaza, in no hurry to be somewhere or to get back, appreciating the simplicity of a French fry and a piece of chocolate like they were delicacies. We greeted passing strangers, stopped to take in some of the art, looked out onto the city lights. Just me and my girl, alone together, holding hands, on our oddly romantic date. And when she smiled at me, her eyes so full of love, and mine, too, we might as well have been on our honeymoon.…
Albeit a destination to which we’d just as soon never return.
days 70–71
Neither Susan nor I have ever been New Year’s Eve people. Growing up, I’d have skied during the day and been so exhausted that I’d barely make it to midnight. In the years with Susan BC (before children), there were no wild parties or elaborate send-offs of the previous year, no resolutions or particular “clean slate” feelings regarding the year ahead. Mostly, it was just another night, followed by just another day. Our perspective on the holiday continues to this day.
With the kids still away, Susan and I had our own little New Year’s celebration in the hospital. I brought in some takeout, we wheeled ourselves into the seventh-floor dining/rec room, and as we satisfied Susan’s Chinese-food craving, we looked back on the year. Over the past few days, we’ve both heard the same comment from different friends, “I bet you can’t wait for this year to be over, huh?”
After opening our fortune cookies, Susan, locked in her halo, her broken body sitting in a wheelchair in the hospital where she’s spent the past two months, said to me, “Well, you know, aside from this crazy accident, it’s been a pretty good year, don’t you think?”
If ever there was a statement that could sum up her optimism and view on life, this was it. She wasn’t going to be defined by the accident, the pain, or the struggle. It didn’t consume her, it didn’t wipe away all that came before it or color all that is to come. As huge an event as it is, it was still kept in perspective to the rest of our lives, for which there is so much to look forward and be grateful.
After dinner, we went back to her room and watched a little television. At 9 p.m., we got texts from the kids celebrating the New Year. “Kiss Mom for us, tell her Happy New Year and that we love her.” I did, we wished each other a Happy New Year, and at around 9:20, the nurse came in with Susan’s nightly meds and we kissed goodnight.
Yesterday, her accomplishment was walking ten feet down the hall with a walker; today was twenty-five feet; tomorrow will be tomorrow. If time were measured simply as a whole, like the chunk of a year, how much would be missed in the steps we take each day and the countless moments that got us here, whether painful or joyous.
So we continue to move forward with hope, knowing that hope is tied to fear, just as strength is to weakness, relief to pain, healing to illness, joy to sorrow, and love to heartbreak and grief. All being perpetually linked, we choose to have both rather than neither.
For the past few years with the kids, we’ve gone to the same New Year’s party, spending the night with dear friends. As part of the evening, we go around the table, together with all the children, and each come up with one word that encapsulates the year we’re moving on from, and another word that projects the year ahead. It’s a chance to stop and reflect and visualize, both backward and forward.
So after saying goodnight to Susan, I headed over to the party, where we continued the same ritual, albeit this year carrying more emotional weight than previous years. When it came time for me to share my word for this past year, I said, “appreciation.” Appreciation for all the friends and family who have offered so much love and support, appreciation for all the good we have in our lives, and a deep, deep appreciation for the fact that it easily could have been so much worse.
My word for next year was “onward,” for tomorrow, the beginning of another year, and more importantly and simply, for the beginning of just another day…a Happy New Day.
days 72–78
Her time in the hospital is rapidly coming to an end. Gulp.
A hospital bed is being delivered to our home, a friend built a little wheelchair ramp for our front step, the kids are excited, and we’re definitely nearing the next chapter of this adventure—wonderful and scary…for all of us.
Susan is now able to walk for extended stretches with the walker and has even been able to ascend a stair or two. Whether she’ll be able to make it up the stairs to the second floor of our house is a different story. That will remain to be seen once she gets home, but given her rate of improvement, even if she isn’t able to ascend them now, it won’t be long before she does.
In anticipation of her discharge, we even practiced getting into the car, which she was able to do without a problem. This alleviates the need for Medivans or other wheelchair transport, which comes as a nice relief and a reminder that that prophecy made months ago by one of our awfulizers would not be
coming true.
When the departure day comes, in many ways Susan will walk out of the hospital as she imagined, baby step by baby step, favoring her right leg and a little hunched over, but remarkably, she will do it.
And then I will happily drive her…
Home.
the unposted: part 12
How do you have the strength and stamina to keep going?
Around this time, this was one of the most common questions I was asked. The other was “What can we do to help?” The latter wasn’t just empty politeness. Friends felt incredibly helpless; they couldn’t visit Susan to keep her company; we had plenty of food; the kids were well cared for; another friend even sent her housekeeper over to clean the house for me. But they were anxious to do more.
In the grander scheme of things, in times of crisis, people show up for one another. We see it around the world when there’s been a disaster—earthquake or fires or floods or devastating hurricanes. It’s unfortunate that these things have to happen, but these horrible events do bring out the best in humanity, when we come to the aid of those in need. On a much smaller and personal scale, that is exactly how our community was showing up for us.
The funny thing is, when I would ask friends to just keep sending love and positive vibes, they felt that wasn’t enough. “Of course we’ll do that,” they’d say, “but what can we really do?” Like the love and positive energy were just insignificant things.
What they didn’t understand, especially for me, was how important they were, and, in fact, the answer to their first question. How did I keep my strength and stamina? When I sent out an update, and the next morning had a hundred emails in response telling me how moved they were by our circumstance, how it had made other husbands look at their own marriages, how others cherished and valued their families more, how people were forwarding my emails to friends of theirs who were also going through difficult times and found comfort through our situation, how others from all around the world, from every religion, were praying for us…that was exactly where I got my strength to continue.
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