shaynezucker.com
"but now old friends are acting strange - they shake their heads, they think I've changed - but something's lost and something's gained in living everyday...” – Judy Collins (“Both Sides Now”)
| Part III -- Both Sides Now |
There are many stories to tell about my experience. However, to get the total story, you have to look at it from different angles. It would be selfish of me to assume that I was the only one affected by my illness. From the very beginning, I realized that as much as I was hurting, Renee was hurting too. This is her story, in her own words...
I was the one who wanted to move the family to New York. Ever since I had moved there the first time, when I was 17, I never really wanted to leave. However, because of a job transfer, after Shayne and I married, we had to move away. I spent the next 14 years trying to convince him that we should move back. I blame movies like West Side Story and The Odd Couple for this romantic notion of what New York was. Elisha and Mayer’s developmental difficulties were the driving force for making this move. When Shayne’s job ended in Dallas, I truly thought it was time to move back. I did some serious research and discovered that there were true advantages to living in NY. The services offered to families of children with special needs is remarkable. I was very excited.
I remember having incredible faith and confidence that this move was going to work out. I felt sure that Shayne would find a job quickly and we would be able to get the schooling and servivces the kids badly needed. Although Shayne felt differently (he told me many times over the years that if I ever moved him back to New York, he'd have a heart attack – really!), I thought he was being theatrical and silly.
We arrived near the end of Summer 2002 and immediately found a family that we could stay by for a couple of weeks. Shayne was finding job prospects rather easily and I just knew this would work. But something was wrong. I noticed a change in him. I actually became a little aware of this when he traveled to New York a month earlier for interviews. I specifically remember him calling me on the cell phone while sitting in a park in Lower Manhattan. I took notice that he was breathing heavily, although he felt it was probably from the heat. This was the first time I began considering that his arthritis may not have been the culprit. His breathing had never been labored like this. It wasn’t necessarily his heart I was concerned about, but an overall sense of his not being well. While he always worried where I was and when I was coming home, he became even more possessive of my time and attention. He called all the time while I was out looking at schools or shopping and he also started becoming more emotionally erratic. He was very quick to anger (not his normal trait) and emotional distant to me and the kids. Then again, we were all getting anxious and antsy, shoved together in such small quarters.
Interviewing for schools and jobs had started to slow and I was beginning to become a little concerned. I also discovered that because it was near the end of August, most schools would not even talk to me. It hit me that this was not Dallas, where the community school always take you in, regardless when you move to town. Here, we were just another family trying to get their children into increasingly overcrowded schools.
Things were looking up a little the week before his heart attack. Shayne landed two jobs and I had set up interviews at two prestigious schools. How ironic that Shayne would suffer the heart attack on the very day he was to begin work and I was to meet with the schools. Looking back, it was clear to me that these events were meant to be. The reason I feel this way is really because of what happened to Mayer a couple of weeks before and the response time by Hatzolah. Having called 911 in Dallas, a few months earlier, for my youngest son, who suffers from chronic croup, I knew from experience that the response time could have been fatal to Shayne.
When Shayne collapsed on the floor, I had a mixture of anger and fear. A part of me had built up resentment toward his behavior. I felt much of it musr have been due to his stress level and I questioned whether he was simply depressed. His “get up and go” seemed to have gotten up and gone. A part of me was mad at him. However, when he collapsed, I realized deep in my soul how real it was. Now, I was scared.
Hatzolah came in very fast and left even faster. I took no offence to their leaving me behind. It only exemplified the seriousness of the situation. I watched them drive away and immediately ran back in the house. Rachel, having witnessed the entire episode was still sheltering Elisha. I explained to her that I was going to find someone to watch them and that I was going to go to the hospital. I ran upstairs to the Zirkin’s (the family who took us in) and told them what happened. Having young children herself, Mrs. Zirkin could not watch them downstairs, but offered to keep an eye on them. It was still very early in the morning, so I decided to call my high school friend, Lifsha Epstein, to see if she could come over. Not being able to reach her , I chose to leave a message. With no other options, I told Rachel I would try to reach someone who could watch them and that Mrs. Zirkin would come down every 15 minutes or they could all go upstairs and stay with her. I found out later that Rachel stayed downstairs and chose the watch her brothers herself. I was very impressed. Eventually, a babysitter was located and took over.
I remember driving to the Hospital and kept thinking that this can’t be a heart attack, that Shayne can’t die and that Mayer needed him. Losing his father would have been the most devastating thing that could happen to him. I guess I was numb, so I distanced myself and focused on Mayer’s needs. In hindsight, I believe this was my defense mechanism, but I also had a really deep faith that Shayne would be ok.
For the next two days, I was able to spend a lot of time with him, I sent the kids to stay with their aunt and uncle. Rosh Hashanah came and everyone’s spirits were high. Shayne was excited about the prospect of being healthy again and I marveled at the outpouring of love and concern the Jews from the immediate neighborhood showed toward us, as well as all the other patients. One woman would bake all week so she could hand out delicious homemade food.
I was informed the operation would take an hour per bypass. Since Shayne went in at 1:00pm, they figured he would be out around 5:30 or 6:00. I was told that I could wait there, or go home and return later. I chose to go home and stay with the kids, figuring I would call around 5. I had arranged for a babysitter to arrive around 5:30. When I called at 5, Shayne had not yet come out, so I went to the hospital and waited alone. My sister-in-law, Debbie, called a number of times, as well as my Dad, Lifsha and my dear friends, Monza Miller and Surkey Rabinowitz. Monza has been my “second” Mother since I lived in New York, as a teenager. She and Surkey really filled a lot of the void that I was missing, having no family here. I had met Surkey through an organization called Women’s League, a Jewish, non-profit, social service agency in Brooklyn that deals with children with special needs. I called Rachel numerous times, to keep her updated and to check on them, but she was still very anxious. She finally fell asleep around 10 and the babysitters agreed to stay the night.
Every time I spoke to Monza on the phone that night, she filled me with optimism. Even Debbie kept up a cheery front as the hours past. It wasn’t until they started showing up at the Hospital, between 9 and 10pm, that I really started to worry. I started going up to the surgical ward to see if I could get some information. Each time, they told me that he was still in surgery and that the surgeon would come out when he had a chance, for he didn’t want to leave Shayne at that time. For the next couple of hours, we spent talking and watching new mothers being discharged (yes, it WAS 10:00 at night). By 11, the lobby was quiet. It appeared everyone else had left. About an hour later, I received a phone call telling me to come upstairs, because the surgeon was ready to talk to me. Monza and her husband came upstairs with me.
While waiting upstairs, I watched a man come through the double doors and make brief eye contact with me as he passed by. He then turned to face me and went into a private room alone. Monza commented that she thought that it was Dr. Jacobowitz, Shayne’s surgeon. As I watched him pass, I felt in my heart that it was him and that he took this detour in order to collect his thought before talking to me. After about five minutes, he came out and approached us. He looked very tired and sad. My heart started beating fast and my mouth felt dry. I remember feeling that this was all so surreal. Once again, I found myself try to emotionally distance myself from the situation.
He introduced himself and explained that he had attempted to do a triple-bypass as originally planned, but discovered during the third one that he would need to do a fourth and then a fifth bypass. During the fifth, he made the decision to leave Shayne on the bypass machine, knowing that he had done all that he could and that the surgery failed. He also let me know, that due to the operation, Shayne’s heart had swelled and they could not close his chest cavity. The doctor’s final words to me were that the hospital was not equipped to keep him there and that he would need to be transferred to another facility. He told us to go back downstairs and to wait to hear from him. My brain was just too numb for me to do anything but go through the motions.
About two hours later, the doctor had called to let me know that he had tried Columbia Hospital, in Manhattan, and that it did not look promising. He told me know that he would continue searching for place for Shayne. He then asked us what kind of insurance we had. This sent Debbie and I into a panic attack, since we weren’t sure if we still had COBRA. I contacted Shayne’s brother, Bruce, since Shayne last worked for him. Bruce assured me he would check and make sure he was taken care of. Around 4:00am, Dr. Jacobowitz called me back upstairs again. This time to tell me he had a hospital that had a transplant program, not that he would necessarily need to have a transplant, but because they would be able to deal with severity of his case.
The Hospital he found was in the Bronx. It was called Montefiore and it was affiliated with the Albert Einstein College of Medicine. The transplant team had only formed 18 months earlier, but were willing to take him. He informed me that team was on their way, and an hour later, they showed up. We waited by the ambulance for them and when they arrived, Dr. Jacobowitz took his leave. They didn’t allow me to see Shayne, or to accompany him to the Bronx. I was so exhausted that I had no strength to argue. I agreed to go home, although I don’t remember driving there. I barely recall closing my eyes, but two hours later, I was up again to get the kids ready for school. Monza and I then went to the Bronx to see Shayne.
We arrived at Montefiore at 9:00am. We were greeted by Sherman Casanova, the transplant coordinator, and Erin McNulty, the transplant social worker. Because of the swelling, Shayne was transported to the hospital still open-chest. There was plenty of gauze tape, so it wasn’t too frightening, but it was weird. They had expected him to wake up from the bypass operation already and were a little troubled. There were wires everywhere and monitors checking his every movement and breath.
One thing they were very concerned with was how long he would stay hooked up to the bypass machine. The hope was that he would breathe on his own and not need it. However, when they tried to take him off, his heart would barely move. They informed me that if he stayed on it longer that two weeks, some very serious complications could arise, including a stroke, brain damage or multiple organ failure. It was their goal to wean him off the machine before then and, if necessary, install a heart device called a LVAD. I was told that if needed, the LVAD could stay for up to two years.
When I went into his room, I was taken aback by the noise from the machines and the vibrations that made the bed shake. He looked gaunt and pale. Then Erin (the social worker) told me what they hoped would happen. She really didn’t know when Shayne would wake up, but they were somewhat confident that it would happen sometime soon.
I relied a great deal on Shayne’s brother, Mike. Although he lives in Texas, he and Shayne are very close. In order to save me the stress of having to deal with our checking account, which was still in Dallas, Mike took it upon himself to handle all of our expenses and finances from his home. In addition, some very wonderful people donated money to help us. Mike and I set up a system where the money would stay in Dallas and whenever it was needed, he would send cash via Western Union. It wasn’t the best arrangement, but it was sure easier than having to deal with it myself.
A number of people called Mike regularly to check up on Shayne. Many people were very generous with helping us financially, but I wished I had received a few of those calls myself. With the exception of a few very good friends, I think that most people were afraid to call me, for fear of upsetting me. Mike came twice to visit Shayne during his coma. Once with his brother, Bruce, and once alone while Shayne was in the coma (although Shayne seems to remember it). He also visited another time after Shayne had woken up.
Now that he was at Montefiore, though, things changed.
While I only received perhaps 3 or 4 phone calls over the few weeks from old friends from Dallas, I did, however, hear regularly from my Chicago friends, Debbie Mitchell, Ellen Wexler and my sister-in-law, Stephanie Notterman. They made me feel less abandoned and alone. I always looked forward to hearing from them. However, my main support system were my friends in Boro Park. I’m not sure what I would have done without them. They came to my rescue numerous times when I needed them. They helped me get the kids in school, get them to school, shopped, babysat and worried for me. One very special person was Ruthie Griper. I had met her through an article her husband had written in a local newspaper. When I called him regading it, he immediately invited all of us for Rosh Hashanah. When he didn’t hear from me a couple of days before the holiday (I was with Shayne at Maimonides), Ruthie tracked me down and found out what had happened. Thus began a wonderful friendship. She was always there to take the kids if I couldn’t make it home in time and to talk to me when I needed it most.
Back at home, things were difficult. Each night, I would get the kids down for bed and each night we went through the same routine. Mendy (3 at the time) cried that he wanted to go back to Texas. I couldn't blame him. His whole life had been turned upside down. Elisha (also 3) cried and kept asking for his Daddy. Neither of them could understand why their father wasn’t around. They missed their daddy, their home and their toys from Dallas (remember, all of their things were still in storage). Our daughter, Rachel (11 at the time) began having panic attacks. She would not let me out of her sight. If I went out for any reason, even to take out the trash, she had to know where I was going, when I’d get back and whether I brought the cell phone. She didn’t talk about her father much, but I could tell by her actions she was hurting.
Then there was Mayer. Our oldest son had not yet turned 9 and suffers from Asperger’s Syndrome. He and his father were (and are) very close. Everyday, he would lead the prayers at school (a Jewish Day School). He made sure to do to extra mitzvahs (good deeds) and really behave. It was not an easy thing for him to do.
The apartment we were in was tiny. It had 1½ rooms; a small living area, a littlel bathroom and a tiny kitchen. It felt like we were living in an Econo Lodge. Thankfully, I never had to cook. People from all over Boro Park brought dinners over. Occasionally, we would go around the corner to the Pizza shop or the bagel store. Every once in a while, I would give in and take them out for hamburgers. Being that we keep strictly Kosher, it was quite expensive. However, we all enjoyed going down to 13th Avenue and being around all the people who lived there. We loved going to the ice cream store, the music store and all the little bodegas that dot this very Jewish neighborhood. It made a very difficult experience more tolerable.
Of course, a huge concern was schooling. We hoped to have the kids enrolled as soon as possible, but we hadn’t selected a school before Shayne got sick. We were fortunate to find a place that would take them, no questions asked. However, we found out very quickly why.
I was able to move the twins to another school pretty quickly. When the Headmaster of another school, Rabbi Applegrad, heard about what had happened, he immediately accepted them without asking for any money. Tuition for the school is in the neighborhood of $15,000 per student and they have a waiting list. It was truly a miracle that they were able to attend. Furthermore, I had spent a lot of time arranging educational evaluations for them. The twins were born 8 weeks early and had signifcant develpmental delays. Thankfully, they were awarded occupational, physical and speech therapy as well as one-on-one in the classroom with an aide. These were the very services I had hoped to acquire for them in our quest to move to New York.
Rachel and Mayer, though, were stuck. They hated every minute of it. Most of the students at their school were children that could not get into other Jewish schools because of behavioral reasons. The Principal did all he could for my kids, but it was really not a good experience for them. I was able to transfer Rachel out mid-year, but because of Mayer’s special needs, we had no choice but to keep him where he was. I tried to get him into a special needs school, but was repeatedly told that he was too high-functioning. The regular schools kept telling me he was too “special need”. We were stuck between a rock and a hard place . It was a tough decision, but I never gave up trying to find a better alternative.
One of the more interesting things about this experience was that I really learned my way around New York. I had driven in the city before, but now I had to navigate through neighborhoods I had never before been to. Each day, I drove the kids to school (two to Flatbush and two to Bensonhurst) and then I’d go into Manhattan via the Battery Tunnel to the West Side Highway, passing Ground Zero and then up the Henry Hudson. When they began construction on it, I switched to taking the BQE (Brooklyn-Queens Expressway) and over the Triboro Bridge to the Major Deegan Expressway (I-87). When they started to fix the Deegan, by the Triboro Bridge, I made my final switch and would take the FDR in Manhattan to the Willis Avenue Bridge, which brought me into the Bronx. I spent many crying moments on the phone with my father in Rhode Island and brother-in-law, Elliot (Debbie’s husband) in his Crown Heights dental office, trying to figure out where I was and why I was passing Shea Stadium and not Yankee Stadium, which was where I needed to be.
I spent a lot of time in the car those few weeks. My cell phone bill exceeded $1,500, which drove Mike bonkers. What could I do? There was a phone in the apartment, but it wasn’t our line. The cell plan we had was from Texas and was not set up for the amount of calls I placed. Finally, Mike set me up on a different plan that alleviated the enormous bills. One of the things I did enjoy, while driving, was listening to Haneshama Lach 2, by Shalhevet Orchestra. It is a powerful Jewish music CD I had purchased at either Gal Paz or Mostly Music, both located on 13th Avenue.
At this point, I want to mention four particular friends of Shayne and I from our childhood. Ben Meltzer met Shayne back when he was 14. After Shayne and I got married, we used to hang out with Ben and his first wife. Shayne has known Gregg Goldenberg for over 35 years and I've known him since I was 14. Shayne and Ethan Miner have been friends for over 25 years and I met him also when I was 14. Geoff Dworkin, the newest friend of the bunch met us when Shayne was the NCSY director in Oak Park, Michigan. Geoff was the chapter President during Shayne's first two years. Since then, he has been an integral part of our lives.
During a number of evenings that I spent at the hospital, Ben would drive up from his home in Silver Spring, MD and just sit with me for hours. He was there with me in the ER one night when I fell and twisted my ankle badly and he would always walk me to my car when I would leave the hospital late at night (remember this was the Bronx - not the safest place in the world).
One afternoon, about two or three days after Shayne was transferred, I had just arrived from Brooklyn when I saw this man sitting on chair just outside Shayne's room. It took me only a moment to recognize Gregg. I hadn't seen him in 12 years, but here he was just sitting there waiting for me. As it turned out, Gregg was working at Einstein Medical Center (actually, he ran the kosher kitchens), and brought me the first real meal I had seen in days.
Ethan spent many evenings checking on me and keeping me company, as did Geoff. After Shayne woke up, they both spent the most time with Shayne - Ethan trimmed Shayne's beard and Geoff would calm him with his guitar playing. To me, it seems that these guys were more than just friends, they were family. I will always hold them in very high esteem.
The first weekend in Montefiore was a very difficult one. I sent the kids to stay with Debbie and I went to visit with Shayne. Because he was in the CICU, I could only spend a few minutes at a time with him. It was very frustrating. For sleeping, Surkey arranged for me stay in the outpatient weekday surgical unit. It was in a part of the hospital that was completely separate from where Shayne was staying and a long, long walk to his room. Since it was the weekend, it was completely deserted. The lighting was very weak and it felt very eerie. I decided, hastily, to sleep in the waiting room by the CICU.
This room was a little better, but not much. Another problem was that in order for me to see Shayne, I had to call the nurse’s station. There was a phone on the wall, but since I am an observant Jew, I can not make phone calls on the Sabbath. I had made arrangements with a few nurses, but whenever I encountered a new staff member, I had to explain it all over again. Unfortunately, many of the nurses were very cold and impersonal. To me, it seemed they considered my husband to be just another bed. Getting information from them was simply impossible. They were supposed to keep me informed about everything, but more often than not, it was an exercise in futility. In fact, I had asked them to notify me immediately if Shayne’s condition changed. Yet, on the Sunday he woke up, and no one called to tell me.
The next day, Monday, I arrived to find Shayne awake and trying to eat lunch. It was the first time I had seen him upright in three weeks. He had lost a lot of weight and had a full beard. He clearly needed a haircut and a shave. But that was the least of my worries. He was having a hard time controlling his movements. He shook uncontrollably and was very agitated. He was aware of where he was, but had a hard time remembering even the simplest detail. When asked about his children, he said he had five. He recognized me and knew who I was, but was indifferent regarding the kids and could not remember their names or ages. He was not interested in hearing about them, either.
The doctor felt that this was a reaction to the anesthesia he had been under for three weeks. They told him that he had to be sedated longer because he was restless and agitated, but unable to breathe on his own. They had tried to extubate him twice while he was asleep, but each time, he was unable to breathe. The doctors felt that this was a neurological problem and would, hopefully, correct itself.
I guess Shayne had enough of the tube being down his throat and finally just yanked it out himself. The nurses and doctors quickly came into his room and hovered over him to listen to his breathing. He finally began to do it on his own. A couple of hours later, he woke up. Of course, I didn’t find this out until I called them later that evening. Ironically, this was the holiday of Simchas Torah. One of the theme of this holiday is that of renewal. Each week, portions of the Torah (Old Testament) are read in the synagogue. On Simchas Torah, we end and then begin again from the very beginning. I attribute much of his recovery to the fact that during this time, synagogues, yeshivas (Jewish schools) and people from all over the country added a special prayer on Shayne’s behalf. It was an amazing outpouring of love and concern from so many people. I was deeply touched. I went into the holiday with the knowledge that one boy, Yehuda Zirkin, the son of the family we rented the room from, went to his Rosh Hayeshiva (headmaster) in the Mir Yeshiva, one of the oldest and largest yeshiva’s in the world, and asked them to include Shayne in their prayers. Although this was not normally done during a festive holiday, he would not give up until the Rosh Hayeshiva agreed. Furthermore, there were prayers made at the Kosel (Western Wall) in Jerusalem and in cities all over America.
