At least I hoped to hell it would.
day 103
It was to be our first public outing, an event that had been on our calendar for weeks, another bat mitzvah.
Susan’s excursions thus far generally have been limited to short walks and the doctor’s office. Friends have been by the house for visits, but this would mark the official coming-out, and Susan wasn’t sure she’d be up for it.
When she woke up this morning, however, I encouraged her to give it a go. I knew the friends who hadn’t seen her (of which there were many) would be thrilled, and I also thought it would be good for her to take that step back into the social swing of things. Not that I had any concern that she might become agoraphobic or a hermit, but simply that it felt like a healthy next move. Still, she was nervous about people seeing her, especially her hair.
“Sweetheart, no one is going to care about your hair.”
“But I care about my hair!”
I finally was able to convince her to go and proceeded to help her get ready, beginning with rebraiding her thin little tail of hair. We also made a deal that she could have only two clothing changes. Usually, for an event like this, by the time she was ready to leave, our closet floor would be ankle deep with the casualties of outfits she tried on and rejected, but since I was the one who had to dress her, I gave her just two attempts. We succeeded on the second one. She then did her own makeup sitting on the shower seat in front of the bathroom mirror, using both foundation and wisps of hair to cover up the still healing holes in her forehead, which for her were the most conspicuous and embarrassing of her scars.
We drove over to the temple, and I wheeled her inside to the entrance of the sanctuary. After parking the wheelchair, she used the walker to get to our seats. The service had already begun, so we tried to enter as unassumingly as possible. As you might imagine, that wasn’t too successful. Almost immediately, friends who hadn’t seen her yet lit up at the sight of her. They’d quietly rise from their seat and come over to give her a silent hug, tears flowing down their cheeks, the purest of love gleaming in their eyes. They’d squeeze her arm, partly out of support for what she’s been through but also to touch the living example of this miracle, the action, in itself, somewhat holy.
Strangely, she is still surprised by the mass outpouring of warmth and emotion she constantly receives, whispering “Wow” to me after each visitor came by for a quick hello. As the service continued, the rabbi and I made eye contact, and he smiled and nodded hello to me from up on the bimah (stage). I smiled back and motioned with my head to the special guest sitting to my right. I could tell that he couldn’t initially see Susan because the person in front of me was blocking his view, but as he maneuvered around them and saw her, he, too, lit up in delighted surprise.
During one of the songs, he took the opportunity to come down off the bimah into the congregation to Susan’s seat. He knelt beside her, clasped her hand and whispered, “Is this the first time you’ve been back?”
“Yes,” Susan responded.
“Can you come up for a special blessing later?”
“I suppose,” she said.
“All right, I’ll call you. So good to see you!”
As part of the service, the rabbi traditionally offers a prayer for the sick and healing. This prayer generally covers the congregation as a whole. However, if a member of the congregation has returned after suffering a particularly difficult trauma, they are invited up for a special blessing. In past services, we had witnessed others who have received this blessing and supported them from our seats. This time we found ourselves the receivers.
At the appropriate time, the rabbi called Susan’s name, and as she rose from her seat and we slowly made our way toward the front of the sanctuary, he briefly described how she and Alyce had been involved in a terrible accident and that this was her first time back at temple since her miraculous recovery. As Susan made her way down the aisle, friends reached out their hands to touch her like they would the Torah when the bar mitzvah boy or girl parades it through the congregation during the service. Tears freely flowed, including my own, as she stood there and the rabbi blessed her, all of us collectively overcome by this sweet, powerful moment.
Following the service, we didn’t stay long. Susan was tired and wanted to have enough energy for the party later that night. We went home, and she napped in the living room hospital bed for the afternoon. A few hours later, we once again rallied ourselves and made our way to the party. I wheeled her in and parked her at a table where she happily held court all night, once again laughing with friends, telling stories, getting filled in on all the gossip…her favorite place to be. She looked beautiful despite her thin little braid, which no one paid a stitch of attention to, or the little scabs on the front of her forehead, lightly covered by her blond wisps. All they saw was their Susan.
She was, without a doubt, the belle of this ball.
days 107–110
My baby’s back in our bed again.
Up to this point, she’s been sleeping downstairs in the hospital bed, because by the end of the day, it’s too much for her to get up the stairs. But she’s been getting stronger and stronger and was ready to make the transition. She got up the stairs (which every day she can handle better), changed into her nightshirt, and crawled into bed with an audible sigh of delight. I propped her up with pillows and she clicked on the TV, a smile beaming from her face. She’s still on some sleep meds, and so after a few minutes she dropped off into sweet slumber. I didn’t follow too far behind.
In the middle of the night, however, she had to pee, but unlike with the hospital bed, which she keeps tilted at an angle so that she can get in and out on her own, our bed is flat, so she couldn’t lift herself out of it. I woke up, got out of bed, went around to her side, and pulled her up to a sitting position and off the bed. She used the walker to get to the bathroom, did her business, and came back to the bed, managing to sit and swing her legs back up on her own. Not bad at all.
Two hours later, however, when she had to pee again, I couldn’t help thinking that, selfishly, maybe it would have been easier if she had just stayed downstairs. I’m sure this stage won’t last long…hopefully anyway. Until then, I’ll remain on the several-times-a-night-hoisting-her-out-of-bed peeing schedule.
Our social life has begun to return, and we had our first dinner out at a restaurant. We went with our friends Rob and Mimi, who coincidentally were the last people we had had dinner with before the accident. We arrived at the Chinese restaurant a few minutes before them and found the place packed. A few minutes later they arrived, but instead of wearing jeans or whatever for our casual little get-together, they were fully dressed in black-tie attire! Rob was wearing a tux; Mimi, a gown. And they had balloons for Susan and a present for me. It was a total red-carpet greeting.
I rifled through some tissue, opening their gift, and saw what I thought was a white apron. Mimi knew I liked to cook, so this wouldn’t have been out of the question. When I fully pulled it out, I saw that it wasn’t an apron at all, but rather a white doctor’s coat…and there, embroidered on the lapel was the name “Dr. McSegal,” and under it, a list of all my alter egos: “Lone Ranger,” “Joe Shooter,” “Turkey Joe,” and “Captain Rogers.” It was fantastic!
We spent the evening laughing, like no time had passed at all since our last gathering. At the same time, we recognized that even though little time had passed, much life had. On our previous date with Rob and Mimi, before the accident, we had talked about spending New Year’s together. Those plans, of course, didn’t materialize. When our waiter brought us our fortune cookies at the end of the meal, we thanked him and asked him why the restaurant seemed so unusually busy. He was surprised that we didn’t know…it was Chinese New Year! So, as fortune would have it, we did get to celebrate New Year’s together after all.
And now, as I write this, Susan sleeps peacefully beside me, her hand resting on my arm as she usually does, her little assurance that I�
�m still here.
And me feeling the comfort that she is, too.
day 115
Valentine’s Day.
What could be better than having dinner with three of the people I love more than any other—my wife and two children—all of us laughing and recounting various memories from the past four months. The anecdotes are becoming just that, stories about a time that is thankfully beginning to feel like a distant memory.
Alyce reminded me of one that I had forgotten. She said, “Mom, do you remember Lipton?”
Susan laughed and said, “No, who’s Lipton?”
There actually never was a Lipton, but when Susan needed to be shifted in her bed, they called in the “lift team” to assist the nurses. Susan misheard it, so whenever she wanted to be moved, she’d say, “I need to move. Can you please call Lipton?” And when the lift team arrived, she’d turn to one of them and say, “Thank God you’re here, Lipton, I need to move.” They never bothered to correct her.
Michael shared his recollection of first visiting Susan in the hospital. “You were really mean to Dad, Mom.” I hadn’t remembered that from his visit but was reminded that when I wouldn’t give Susan an ice chip, I was angrily relegated to the other side of the room while she happily talked to her boy, asking him for an ice chip before then asking him to help her “get the carousel out of her bedside table,” whatever that meant. Michael hadn’t appeared too bothered by her anger at the time, but it’s clearly something that stuck with him. He also remembered, “Dad was doing everything, Mom, and you were so mad at him.”
Susan apologized, admitting that she didn’t realize what she was doing or saying, and even when I reiterated that as being true, I could tell that Michael was still upset by it. It clearly affected him. He knew it wasn’t fair treatment, and despite the excuse that her brain just wasn’t working right, it wasn’t enough to remove the abusive sting. He was defending his dad, and as much as I would have preferred that he had never seen the behavior in the first place, I was touched by his concern for me. It also made me appreciate how lucky we are that this was not something they had to experience under normal circumstances. I can’t imagine the longstanding negative impact on kids who have to live in an abusive environment every day.
In any case, there undoubtedly was some residual injury that both Michael and Alyce had experienced. I remember a few weeks into the accident and having a sit-down with them to make sure they were doing okay. They told me they were, but they did have some complaints:
#1.“You’re always on your phone.”
#2.“You’re always in the same mood.” When I asked them what mood that was, they told me that it was the same mood I have when I need to get a lot of work done—super serious and not really paying attention to anything else.
#3.“You don’t laugh and play with us like you used to. You’re just not as much fun as you used to be.”
My initial impulse was to respond with, “Of course I’m not as much fun! Do you realize what I’m going through?!” But from the get-go, it had also been my desire to maintain as much of a sense of normalcy as possible when I was with them at home. To a large degree I had succeeded, and their willingness to unabashedly share their complaints with me was kind of a twisted example of that success; they had been somewhat shielded by the ongoing seriousness, complications, life and death, back and forth that kept the rest of us on the edge of our seats with a nervous pit in our stomachs.
Rather than become defensive, I copped to it all. I told them that I would put my phone away when I was with them unless it was the hospital calling. Deal. I told them that I have been distracted by everything that’s been going on and will try to be more present. And lastly, I told them that I’d try to have more fun. Ultimately, that was the most heartbreaking to hear; as simple and obvious as it was, I had lost a lightness of spirit.
To prove that I could regain it, that night we played a rousing game of WrestleMania, the goal of the competition being to pin me down, sit on my head, and then fart. They succeeded in their mission, winning the contest, but for all of us, the laughter it generated was the real prize.
For me, the lesson was clearly learned. They knew that a huge priority for me was Susan and her health…but when I was with them, they wanted their dad. Thankfully, now, sitting around our Valentine’s Day dinner table, they have both of us. Before dinner was over, they did ask for one more thing…
“Mom, remember those puppies you thought you got us? Do you think we can get one for real?”
day 128
We’re taking yet another step forward.
Mile after mile on our journey, this new territory we’re about to enter is outpatient care, having exhausted our insurance allowance of home health care. We’re both sorry to see Dennis go, having grown quite fond of his commitment to Susan’s recovery. Like a teacher gravitates to a passionate student, I think health care professionals must be similar, or at least Dennis was with Susan. Instead of our allotted forty-five minutes, he’d end up spending upward of two hours with her, encouraged and personally rewarded by her progress.
That has come to an end, and now she’ll need to continue with an outside facility. From several friends we’ve gotten recommendations for other therapists who fall into what I’ll call the “brisket principle”—everybody loves theirs the best, and we absolutely must try it. We’ll probably end up checking out a few different ones to see who Susan responds to and who seems to be getting positive results. Though Susan is getting stronger and working hard, she still can’t fully straighten, as her hip has her locked into a slightly bent position.
All the movement is in a positive direction, but it would be a lie to say that the voyage isn’t becoming tiresome. I’m tired—tired of all the schlepping around and caregiving. Just as Susan wonders if this is what her life is going to be now, an ongoing regime of recovery and therapy, I wonder the same thing. Will we ever get back to where we were, and will it, or she, ever be the same?
Just after Susan’s accident, a friend of a friend and her husband reached out to me. We had never met, but like many in the community, they had been dramatically moved by the event. This was especially true for them because they had been involved in a car accident of their own in which the wife also suffered a broken neck. After her accident, she, too, was confined to a halo, but in her case had a miserable experience in it. She became extremely claustrophobic, so much so that she needed to be medicated. (Hearing her story is what prepared me for Susan to have that trouble as well.) Initially paralyzed from the neck down, she put in a great deal of hard work and, miraculously, is walking again.
What was interesting, now that they were finally meeting, other than sharing various stories and commonalities, was seeing how inspired Susan was by this woman and, conversely, how inspired this woman was by Susan. Each saw such enviable gifts of strength in the other, minimizing their own situation compared to what the other went through. The friend commented, “I only broke my wrist in addition to my neck, and I know how difficult it was for me to rehab just that. You broke everything!”
Susan replied, “But you were paralyzed from the neck down and are now walking again! How amazing is that?!”
Both have experienced pain and hardship that no one deserves, and each was still taking steps toward recovery, steps that involve digging deep to find the required strength. Sometimes, as we experienced with this friend, it’s hard for us to see just how far we’ve come or how strong or inspirational we are unless it’s through the eyes of others.
That certainly has renewed my strength to keep up the fight and walk with faith that we’re continuing to move in the right direction.
the unposted: part 15
One step forward, two steps back.
Susan was taking it day by day but was growing tired of waking up without signs of marked improvement in either her hip or with her various aches and pains. If she knew for sure that there was a pot at the end of this murky rainbow, then that would be one thing, but she d
idn’t. The pain could follow her for the rest of her life, and the thing I worried most about was that it would eventually chip away at her spirit.
She continued her physical therapy, but even though she was working hard and they were working hard on her, she still couldn’t stand up straight, and that was discouraging. Some of her PT was particularly aggressive, and though she could always handle a strong massage, there were times I was really worried that the therapist was going to break her hip in an effort to free it up.
Another visit to Dr. Allison and another set of X-rays confirmed the continued existence of the heterotopic ossification. He was now expressing concern that the HO was indeed what was restricting her movement. He had previously hoped that it was only tight muscles, tendons, and ligaments, and that she might be able to work through those issues, but that doesn’t seem to be the case. The solution would be to surgically go in and cut away the excess bone to free up movement, but he wanted to monitor it for another month or so more before we made the decision to go back in. If she could avoid more surgery, he (and we) would prefer it.
Susan expressed her frustration about her pain and lack of progress, and Dr. Allison reminded her that it’s been less than six months and that people with these kinds of injuries typically take at least a year to heal. While that was reinforcing to hear, it wasn’t completely encouraging in terms of the long period of recovery time still ahead of her. She wanted it to go faster.
On a more positive note, the visit to Dr. Baron, our neurosurgeon, went much better. Susan was sick of the hard collar she was still required to wear and was hoping he would liberate her from it. She felt that her neck was strong, and her own self-diagnosis was that she could do without it. It was my opportunity to now say to her, “Yes, Dr. McSegal, but let’s see what Dr. Baron has to say about it.”
Dr. Baron did another CT scan and returned with the news that she had fusion, but he would still like her to wear the collar for another month. Of course Susan was happy to hear that the break had healed so well, but she was disappointed in the additional month’s prescription of the uncomfortable neck brace. So, what did she do? Well, when Dr. Baron said, “One more month,” Susan did what she does best…negotiate, and responded with, “No, I think it can come off today. My neck feels strong.” Dr. Baron looked at the X-rays again, and while I expected him at best to maybe cut the time down to say two weeks, he turned to her and said, “Okay. You can go naked…around your neck, that is.”
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