shaynezucker.com
“I'm gonna smile my best smile - and I'm gonna laugh like it's going out of style - look into her eyes and pray that she don't see - That learning to live again is killing me..." Garth Brooks (“Learning to Live Again”)
I was free.
That was the only way to describe it. I cared not that the apartment wasn’t ready, or that I couldn’t walk very well. It didn’t matter to me that, deep down, I also feared I wasn’t ready. After all, just a week or so earlier, all I wanted to do was close my eyes and never wake up again.
No, nothing else mattered to me but the idea of freedom. The overwhelming joy of realizing that this nightmare had ended. Although I knew I had a very long way to go, the ecstasy of that first breath of fresh air (albeit Bronx fresh air) was better than anything I could imagine. The moment the cool November breeze hit my face, I knew I never wanted to be stuck indoors again. Of course, when I came in the hospital, it was early September. Now it was mid-November and quite chilly out. But, as far as I was considered, it was sunny, bright and warm.
After Renee got the car, I slowly got into the back seat (really, the middle seat – being a minivan). Because of the open-heart surgery, I was not allowed to sit in front of an air bag for about 6-8 weeks. It wasn’t the most comfortable place to sit, being six feet tall, but a bigger concern I had was how I’d be able to stomach the trip. I was still in a fog and I was concerned that I would get carsick.
I did indeed tire as Renee drove, but I was so excited to see the buildings in Manhattan, that I stopped worrying about being nauseas. On the way, we discussed the idea of my spending the weekend in Sea Gate. The advantage was that I would be in a safe place, where I’d have my meals brought to me and could rest, while Renee would spend Saturday night preparing for my arrival on Sunday. She had arranged for her friends to come over and help her clean and arrange the furniture (as well as receive it), without having to worry about me getting in the way, or being uncomfortable.
The sun was setting, and by the time we reached Ocean Parkway, it was dark. We drove first to the new apartment, so I could see it. It helped. I was very curious about what it looked like and seeing it made me realize just how much work was needed, in order to get it ready. It also gave me an opportunity to test my strength on the stairs. It took a little while, but I managed them. That gave me a big lift.
From there, we drove to the Griper’s house to pick up the kids. It was great to see them, but after a few minutes, I began to get a headache. They were all so excited, especially Mayer and Mendy, that they talked my ear off. I wasn’t complaining. I was thrilled to be with them, but it had been a long day and I just wasn’t used to the noise.
It was about a 20 minute drive to Sea Gate. For those of you who have never been to that part of Brooklyn, Sea Gate is at the southwestern point, a few miles west of Coney Island. It is a gated community, with a beachfront personality. The homes are nice, but not ostentatious. After driving around and getting lost, we finally found the facility. I’m not sure what I was expecting, but this was definitely not it. This was a house. A regular, run-of-the-mill house. The door was open, but no one seemed to be there. I heard voices upstairs, and immediately began to worry that I would be placed there, instead of on the lower level. As I walked in, I noticed a small synagogue on the right, followed by a kitchen. There was a door adjacent, but it wasn’t opened. However, it did have a number on it, so I knocked.
The caretaker was a young woman who spoke very little English. She led us to my room, which was nothing spectacular – very reminiscent to the old hotels I used to stay at in the Catskills or Miami Beach. It had a refrigerator, phone, lamp, small table – with two chairs – and a recliner chair. What was missing was a television. I shouldn’t have been surprised, with this being an ultra-orthodox run facility. I was more worried than anything else. I still couldn’t read very well. While I had been practicing and was getting better at it, I still became very fatigued when reading. There was no radio either. What was I going to do? Just lie there and watch the paint peel?
After Renee left, I decided to go to sleep. I had enough medicine for the evening, but we needed to separate each dose into individual containers (for a complete list, click – HERE). So, I took my meds and tried to fall asleep. However, I started to panic. The phone number for Hatzolah was on a sticky note on the wall, along with other numbers, but I had no idea which number was theirs. All of the instructions on the notes were written in Yiddish. I was worried that I wouldn’t be able to call, if I needed. For 10 weeks, I was at the beck and call of an entire nursing staff (although they were often less than helpful). Now, I was alone and scared. After fretting for about an hour, the meds kicked in and I finally fell asleep.
Renee said that she would pick me up early the next morning and would stay with me over Shabbos. The plan was for us to walk a lot and enjoy my freedom. But once again, that was for naught. Late Friday evening, it began to rain and didn’t let up until Sunday. We were stuck indoors. It wasn’t so bad, but I was bored. Renee was exhausted and enjoyed getting a break from the kids. I simply had nothing to do. I tried to read a little, slept a little and talked a little. The day went by pretty quick. I wanted to go to the morning service at the synagogue, but again, I needed to stay away from other people.
On Saturday night, Ethan and Gregg brought over a dresser and night stand to the apartment and then headed over to see me. They brought me three gifts. The first one was my bottle of Vicodin©. The doctors had written the prescription, but I still had a large supply from before I got sick. The second gift was my little TV. It was a small color set (13”), without an antenna. After playing around with it, I finally was able to get one channel. Thankfully, the one station I got (channel 5), showed a couple of good movies. First was “The Producers” and then “Die Hard 2.”. The last gift (well, more like a curse), was that Ethan had caught a cold. I feel very fortunate I didn’t catch it. Truth was, I wasn’t too worried. I knew I should have been, but I wore a mask (or he did, I can’t remember), and it was just good to see them. Unfortunately, because of this, they couldn’t stay very long.
The next morning, Renee told me all about her evening. She said that Surkey, Monza and Lifsha all spent hours cleaning, moving furniture in and around, while keeping the kids out from under foot. She said that they didn’t finish until around 3am. Even then, she told me she wasn’t finished. I really didn’t care. I know it was very selfish of me. These wonderful people offered me a tremendous gift, allowing me to stay at this facility. Perhaps I should have been more gracious and understanding of what Renee had to go through. A lot of people went to a lot of trouble for me to stay there, and Renee had to take the brunt of their disappointment. However, they didn’t know how bad I wanted to go home. I wasn’t trying to be selfish, I know I could’ve just grinned and bared it, but when I found out I might not be going home, I just fell apart inside. It was the feeling of being held hostage for months in a dark cell, told I was free, only to be pulled back at the last moment. If the doctors had said that I’d be released the next week, I would have just dealt with it. But they said I could go. Now, other people, including Renee (for good reason), told me to stay.
It wasn’t as if Renee didn’t want me around. She was thrilled that I was out of the hospital. It was just that she had so much to do before the apartment was habitable. For one thing, although the phone had been turned on, there was no gas. The rep from Keyspan (gas company) showed up the week before, but Renee got stuck in traffic coming back from the Bronx. A few days after I came home, he arrived an hour and a half earlier than his scheduled appointment. When we called to complain, the rep said that although we had been told to be there between 12 and 5, that was only an estimate and they could be there at anytime.
Ah, welcome to New York.
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Our landlord had required we put in carpeting, before we move in, due to the apartment having hardwood floors. He was concerned that the noise, from 4 kids running and jumping, would annoy the downstairs tenants. I would have whole-hardily agreed with him, if we had tenants downstairs. But it was required and we had no choice. Renee had to find inexpensive carpeting as well as a new linoleum floor. The one in the apartment was horribly stained and ripped. It was disgusting. The whole job cost around $2,000. While it had to be done, the last thing I wanted to do was spend that much money. We were living on the remaining money left in the account and needed to save as much as humanly possible. To us, $2,000 was an enormous amount. Including the $4,650 we had to put down for the rent, our account would be dry in 3-4 months. I had only applied for Social Security Disability when I left the hospital. It can take 5-6 months before you receive your first check. Also, due to an extreme case of negligence, on the part of Montefiore Hospital, it appeared that it might take as much as 2 more months to start receiving Medicaid (it ended up taking 7 months total for me, 9 for Renee and the kids).
Renee still had a lot of boxes she left in Boro Park, including groceries, clothes and toys. On Sunday, while I was in Sea Gate, she brought that to the new place and started to put the apartment together. Monza had brought over two brand new beds for Renee and I, and Lifsha arranged for 4 more that were donated. Unfortunately, one of them came broken, but that didn’t matter, since there was no room for it.
The apartment wasn’t very small (three bedrooms), but the rooms were tiny. In the front (facing E.29th St. - the apartment was between Avenue I and Avenue J), there was a living room, with three with three windows facing out. In there, we put two very old (maybe early 1900’s)and beat up dressers that were donated, as well as a black La-Z-Boy (yeah, yeah - old joke) chair, that Mike bought me (from the account). It was a necessary purchase. We were given an old couch, but there was nothing else to sit on. I didn’t want to stay in bed if I tired, so I needed a place to rest.
Behind the living room was the dining room. One of the things I really appreciate about the apartments in Brooklyn (and in Chicago, too), is the fact they have separate dining rooms. Someone donated a somewhat worn, but elegant dining room set, with a breakfront. The breakfront was scratched up a bit, but was very nice. Unfortunately, we weren’t aware of the unattached leg, on the table, until it was too late. But, after having it collapse on my leg, we just became more careful. I got an estimate for fixing it, but it cost about as much as a whole new table.
Right next to the living room was Rachel’s Room. This was very mall room, with a small closet. We managed a tall dresser, a long dresser and a thin bookcase, along with her bed. There was hardly any room to breathe. Behind the dining room was the kitchen. This was a nice sized room, but terribly inconvenient. It lacked drawer space and only had two electric plugs. One was by the entry and one by the oven. Because of the arrangement, there was absolutely no way to put the refrigerator in there. The landlord assured me that he was going to put a new electric line in, but when push came to shove, he decided I needed to pay for it. Since I was not willing to put money into his building, we left the fridge in the hallway, adjacent to the kitchen. We might have been able to place it across from the sink in the kitchen, but for some unknown reason, the apartment had two front doors, right next to each other. It was bizarre.
Behind the kitchen (and hallway), were the bathroom and two bedrooms. The bathroom was out of the 1920’s and had a serious leaking and clogging problem in the tub. Many times, the bathtub would fill up from the leak and not go down. We spent more time dealing with this issue alone, than anything else. The shower was horid as well. There were 3 faucets that washed your feet, legs and stomach. On the very top of the shower (straight up on the ceiling) was a very large shower head. I honestly felt like it was reminiscent to a gas chamber. The ware had little pressure, but the landlord went out and bought us a new shower head. In the many moths we lived there, I never got used to having the water come straight down like that. In fact, the only good thing about the bathroom was the power flush.
Next was the master bedroom. This was larger than the other room, but not by much. Like Rachel’s room, there was a small closet. We managed to put in two narrow, long dressers and a desk, but it gave us little room. The boys room was the smallest room in the apartment. This also had a small closet, but it had a built-in closet as well. We were able to fit a tall dresser in there, but only two beds, that had to be together. Because the kids were little, we were able to get all three boys in there. Unfortunately, there was absolutely no room for playing.
Now, 20 months later, I understand why it would have been better for Renee, if I would have not demanded to come home right away. But at the time, I didn’t realize, and perhaps didn't care enough to notice, what a hardship it was for her. For that, I’m very, very sorry.
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The first few days were a little unnerving. I went with Renee to do carpool and other errands. I wanted to do more, but the strength in my legs just weren’t there. Plus, it was cold outside and for some reason, my hands were constantly cold. So were my feet. In fact, when I took a shower, I noticed that although the temperature of the water was perfect for the rest of my body, it was scalding on my hands and feet. In addition, when the balloon pump was removed, the area around it (in my thigh) collapsed and left a gaping half-dollar size hole. It was bandaged in the hospital and I was told it would heal on its own. It was almost completely closed now, but it left me with extreme hyper-sensitivity in my thigh. I couldn’t place anything on my thigh and even water hitting it in the shower sent, what felt like electric shocks through it. Even my clothes had to be loose, in order for me to not wince with each step.
Over the next week or two, I basically stuck to Renee like glue. Part of it was fear of being in the apartment alone, and part was that I was so excited to be home and with her. I’m sure I slowed her down quite a bit, but she never complained. Deep down, I’m sure she felt it a was a nuisance, but she never said a word. She handled everything with tremendous strength. She made sure the Rachel and Mayer were up and ready for school, even though they hated the school they were in, and got them out in time (almost on time, really). Then she would take me to various therapy appointments or shop or be on the phone with doctors, organizations, schools, or whoever she needed to speak to.
She and I went out a few times for lunch, as well. If I hadn’t forced her to take the midday breaks, she would have quickly burned herself out. As it was, she was doing everything for me and the kids as well. It was unfair for her to be burdened like this, but she handled it well. It appeared she was no longer the naïve, somewhat scared young girl I had married, but had matured to a very capable, caring and strong young woman. I was very impressed.
My social worker, Erin (from Montefiore), had arranged for me to begin physical therapy at Maimonides Hospital. Since I was only “Medicaid pending”, I wasn’t sure whether or not I would be treated. But Erin assured me all was well. I was also set up to see a psychiatrist, in order to my prescriptions (Effexor©, Trazadone© and Ambien©). In addition, I needed to see a psychologist to help me deal with the enormity of what I was going through. My first appointment was with the psychiatrist. I had a 9am appointment and got there a few minutes early. However, when I arrived, I was told that because I was a Medicaid patient, I would have to wait for the next available person. Apparently, it was a first come-first serve office. After about a two-hour wait, I was called in. I was introduced to a young (early 20’s) girl, who said she was doing my intake. After telling her my entire story, she brought me in to see the psychiatrist, who informed how the program works.
According to the psychiatrist, I was to next see, at my next appointment – next week – a social worker who will be in charge of my treatment. I was to meet with him/her (they would let me know when I came back), and again have an intake appointment. After another appointment, the social worker would recommend a psychiatrist. When I finally get to see the psychiatrist, he/she will, once again, do an intake exam, before recommending treatment. I was to be there every Wednesday, at 9am. As foolish as all this sounded, I agreed.
The next appointment was with the physical therapist. My appointment was scheduled for 2pm. Which gave us plenty of time to get the kids at school. When I arrived, there were about 20 elderly patients in the waiting room. I told the woman behind the desk who I was and she told me to have a seat. Renee was very concerned that there may well have been a number of sick patients there, and made me sit outside the waiting room. While I was wearing a mask, I was better safe, then sorry.
About an hour later, Renee started to worry about the time. We had to be in Bensonhurst, to pick up Rachel and Mayer, by 4. It was now 3 and I hadn’t been seen yet. She went up to the receptionist and asked her what the delay was. The lady behind the desk said that although we had an appointment, this clinic is also on a first-come, first-serve basis. In addition, even though we had a Medicaid-pending letter, she said that they would not accept us without full payment ($125).
Renee was furious. Beside the time that we sat there, exposed to who-knows what kind of germs, no one bothered to tell us we couldn’t be seen! Things like this do not happen in Texas, and over time it really began to wear us out. But for now, Renee called Erin to straighten it out. In the meantime, we had to leave, in order to pick up the kids, and rescheduled until later in the week.
When we returned, the waiting room was much emptier. After about a 30 minute wait, we were called back and told to disrobe. While in the process of getting undressed, no less than three staff members barged in the room, looking for something. It was unprofessional, not to mention embarrassing. When the physiatrist came in, he announced I should keep my mask on because he had a bad cold. In hindsight, I should have asked the same of him. He was coughing and sneezing terribly. No wonder the older patients were sick! During this visit, again a number of other people walk in and out at will. The doctor took down all the information, but seemed clueless in regard to heart failure and specifically, transplantation. This made me feel, oh so good. We were stunned. At the lack of professionalism and lack of knowledge. The next time we came in, they gave me the same run around with the insurance. In fact, they let me know that until Medicaid begins, we can not use the facility (unless we pay out-of-pocket each time).
The next week, I went back to the psychiatrist, I waited about an hour and a half before they finally determined he wasn’t there. Apparently, he hadn’t come in at all, and although I was given an appointment time with him, I was not on his schedule. Once again, I shuddered at the total lack of intelligence, professionalism and above all, empathy. Here I was, just out of the hospital, still suffering from the effects of my stroke, and they basically didn’t give a damn. Not even as much as an apology. They were rude when speaking, and apathetic while listening. It was truly unbelievable. But after my earlier experience with Maimonides, it shouldn’t have surprised me.
The only saving grace was a very nice, young Russian woman, who agreed to see me the following week. However, that too, was short lived. After re-telling my story, and in fact beginning to trust her, she let me know that I would be treated by someone else. The person who would treat me had his own intake nurse and I would have to meet with her first. That was the last time I ever went back. I decided right there and then that the treatment was far worse than the problem. Beside the fact that I had no desire to tell everyone my story (at least I felt that way then), the traveling back and forth, along with parking, was driving us crazy. I still couldn’t drive and Renee was overwhelmed. After the first couple of visits, I started taking a car service, but at $20 round-trip, we couldn’t keep it up.
The trip to Maimonides was only about 5-6 miles, but because traffic is so utterly ridiculous in Brooklyn, it often took us 30-45 minutes, each way. For morning appointments, it wasn’t so bad. But only a few were in the morning. Also, because we were Medicaid pending, I could only go to one appointment per day (Medicaid rule). I was supposed to see the physical therapist – twice a week, the occupational therapist – twice a week, the psychiatrist, the psychologist and the speech therapist. In order to go to all these appointments, I would need to alternate. On top of that, Renee would have to schedule it all around carpool and any other appointments she had for the kids (she basically had zero time for herself).
On top of all of this, although we were always early or on-time, the doctors and therapists were consistently about 20-30 minutes behind. If we were late arriving, we would lose our place. There was another issue that took up my time. For the first four weeks (post discharge), I had to be in the Bronx for a biopsy. They would schedule it a day in advance and require I arrive two hours early. I usually got there at 10am (after carpool). They would prep me, attach an IV line and take my blood. I was not allowed to eat after midnight the night before and had to pack a lunch. I usually got into the cath lab at around 12 and was finished by 1. However, since they still had to go through my groin, I had to lay still for two hours afterward. Once I was able to get up, I still had to go across the street to Dr. Garcia’s office for a mini-physical. Often, Renee had to either send the kids to the Griper’s house (the bus took the twins, but we had to leave money for Rachel and Mayer to go by car service), or had to go back to Brooklyn, pick them up, and head back to the Bronx, to pick me up. All said, I wouldn’t get home until after 7 or 8pm. One time, in fact, we didn’t get home until after 10.
This was the hardest thing to deal with. It exhausted me, it exhausted the children and it really exhausted Renee.
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The next week was Thanksgiving. Thanksgiving had always been one of my favorite days. Renee and I both have childhood memories of family gatherings and football (at least I do). Both of my brothers, my father and I have been die-hard Dallas Cowboys fans for years. On a number of occasions, we attended games on Thanksgiving, including the memorable 1974 game with Clint Longley. I can not remember the last time I missed a Cowboy game on Thanksgiving. Even in Yeshiva, where TV was not allowed, I would sneak out of the dorm and find somewhere to watch.This year, it was a little simpler. We invited David and Tzipi Jarcaig (and their kids) along with Neil (Kleid), to join us. It seems that although religious Jews in the South celebrate the holiday, it’s much more subdued in In New York. But for me, I was even more excited because Cablevision was set to install cable TV (and internet) a few days before.
Renee was really against us having cable because she saw how addicted the children were before we moved to NY. While we lived with the family in Boro Park, we had a little 13 inch TV, but only used it for Jewish videos. The kids really found better things to do with there time. She had done such a remarkable job with them, that neither of us wanted it to go back to the way it was. However, I was stuck at home all day (unless I was at the therapist) and I was bored. I still wasn’t excited about watching TV shows, but I felt so out of touch and isolated. Surkey had gotten me a computer, and though my typing was abysmal, I wanted to contact my friends and see what I’ve been missing for so long.
We made a deal. We would leave the TV in our bedroom, and only use it for sports, news or something special for the kids. I told Renee that once I felt more capable, I would disconnect the TV from the cable and leave the Internet connection as is. She was okay with that (at least I thought she was). So, for this Thanksgiving, Neil, David and I were going to watch the Lions game (Neil and David are both from Detroit) and the Cowboys game.
Unfortunately, Brooklyn is serviced by Cablevision. For those of you not familiar with this company, try to imagine the most stereotypically bureaucratic utility possible. That would be only half as bad as Cablevision. Sparing the details, it was a nightmare and I only really wanted it for football games and internet. They were far less expensive that Verizon’s DSL and I couldn’t get any reception without cable. So I bit my tongue and dealt with it.
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Over the next few weeks, I had a number of visitors. A very special man, Rabbi Shain, from Boro Park, came to see me a couple of times. Geoff, David, Neil and Ethan came by as well. One that stood out was an old friend from my NCSY days, named Sheri Kass (nee Margolis). When I met Sheri, she was teenager, from Pittsburgh. Because of my work with this organization, as a youth director, we developed a friendship. She had contacted me, via Internet messenger, while I was still in Dallas. It had been a number of years since we had spoken and she told me she had now been married for a couple of years, had a son and lived in Flatbush. When we moved back to NY, I called her to tell her we had moved to Brooklyn, as well. Then, after my heart attack, I called to let her know. However, right after I fell into my coma, Renee had switched our cell phone service (it’s amazing how quickly phone companies will shut you off for owing $2,000). Because of this, she had no idea what had happened to me. She had lost touch with NCSY, and only spoke to people who didn’t know me. She decided to call Neil, but he wasn’t around much and she lost touch with him. So, when I called her after I had gotten home, she had no idea, and was quite shocked.
She came over and brought Chanukah presents for the kids. Because of my immune deficiency, she left the baby at home. We visited for a little while and promised that, since we now live in the same neighborhood, we’d get together. I was anxious to meet her husband, who she spoke so lovingly of. Unfortunately, we only saw one another just a few more times. But, she became an IM (Internet messenger) buddy, and continues to be a close friend, and someone I chat with on a regular basis.
In the neighborhood, there were a few other very special people, I had the pleasure to meet, as well. Two were Rabbi and Mrs. Segal, who lived up the street. They knew everyone on the block and were a great help to us. Another couple were Jerry Gross and his wife, Barbara. They were wonderful - getting me rides to the Bronx and helping with day-to-day stuff. I can’t even begin to thank them enough.
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The next couple of months really seemed to fly by. In mid-January, I was starting to feel stronger and we were starting to get very concerned about our financial future. We knew that I was far from being ready to go back to work, even part-time. After many discussions with doctors, friends and confidants, Renee decided to get a job. It would be impossible for her to work full-time, since I couldn’t drive yet I couldn’t even if I wanted to). It was still overwhelming to just to survive day-to-day alone. But, the responsibility of taking care of the home was too much to consider.
Pretty quickly, she found a job working in a pediatrician’s office. Her job was to answer the phones, take notes during office visits and prepare injections as well as other tasks. Renee enjoyed working there. Dr. Mermelstein’s staff was friendly and it enabled her to get out of the house and focus on other things for a while. It also forced me to stop relying on her and to become more able. It took a lot of time, but it eventually paid off.
By February, I finally got approved for Medicaid, although there were many problems with it. For one, they didn’t cover Renee or the kids. Medicaid was only supposed to take 30 days from application to getting the decision (which appeared to be a no-brainer). Until approval, I paid over $1,000 a month for COBRA. After a number of attempts at clearing up this oversight, I came to the conclusion that the fault lied with Montefiore Hospital, not Medicaid. The case worker at Montefiore turned in all of our paperwork in late. On top of that, she did not submit all of it. She sent in the entire application for me, but failed to include all of the information for the rest of the family. She claimed Renee never gave her the paperwork and that she only had my information. However, that was not true. Renee had filled out all of the forms with her originally, and because of the way it was submitted, mine could not have been approved without it. We had to send her duplicates of the original application. But, after two more months of writing, we were told we were denied, due to missing paperwork. I was informed by the case worker that, during the waiting period, I would not be able to reapply. This caused a serious dilemma. For whatever reason, Medicaid did not send us a letter of denial. When I called them, they said that it went out and that I should receive it shortly. I waited. And waited. And waited. After two weeks, I started calling anyone and everyone involved. Medicaid told me there was nothing more they could, or would do for me. The case worker at Montefiore was even less helpful.
Finally, I took the initiative (actually, Renee got really fed up with my inaction), and went to the Medicaid office personally. I informed them of the problem and all that had happened. They confirmed that there was certainly an issue of mistreatment and incompetence by their office and that the true fault was the ineptitude of the Medicaid case worker at Montefiore. Knowing Medicaid, I have no doubt this woman is still employed by them.
The greatest miracle that happened at this point, was that we were able to find another school for Rachel. I say we, but in truth, the credit goes to Renee and Surkey. Surkey introduced us to a man named Rabbi Mintz. He, in turn, set up an interview for Rachel with Rabbi Levy, the headmaster at Bais Yaakov D’Rav Meir, a well respected Jewish day school for girls. It had gotten so bad for her at her first school, for a number of reasons, that we jumped at the opportunity to move her, especially to such a wonderful school. Rachel immediately fit in and was really happy for the first time in months.
Unfortunately, we were not so lucky with Mayer. He and Rachel had been in the same school. Although the situation wasn’t as critical for him, he still suffered for being there. He wasn’t very well liked and was constantly bullied. One time, one of his school mates actually threw wet cement on him. The children from this school had come from very different backgrounds. Many of them were at this school because they were not accepted at the better schools. There were a number of children who behavioral issues and no other place to go (if they wanted a Jewish education). At one time, this school thrived, but because of the deteriorating neighborhood, as well as an influx of immigrant children, the school opened it’s doors to everyone. While certain children, especially children from the former Soviet Union, thrived there, it was clearly not the right place for either Mayer, or Rachel.
However, because of Mayer’s disabilities, we were unable to place him anywhere else. Renee tried many, many places, but all of the “mainstream” schools felt he was too “special needs” (being from his current school did not help matters at all) and all of the special needs schools considered him to be too high-functioning. We were stuck, so Mayer had no choice but to stick it out. It was very hard, for me as well. I hated that he was being tormented. It broke my heart to see him walk into the school each morning. But he did it and although he is still way behind educationally (especially in his Hebrew/Jewish studies), he is a stronger boy for it.
It was around this time that I finally gave up on my therapies. Truth be told, I was only supposed to have physical and occupational therapy for two months. My doctor’s had been impressed with my progress, even though I was doing it on my own. My motor skills had continued to improve and I was able to type better. Plus, walking to the store became easier and I actually looked forward to the biopsies, since it gave me a chance to spend time lying down and sleep (ironic, isn’t it). I spent a good deal of time listening to music, which was something I had no desire to do, when I was in the hospital and chatting on the internet. I conversed online regularly to Sheri, Geoff D., Jeff M, Mike and my nieces, Deena, Sarah, Shayna (who just got engaged this week) and Kory, an old friend from my single days, who know lives in France.
One other person I chatted with was Mikey Butler. Mikey was a miracle himself. Born with cystic fibrosis, Mikey outlived all expectations. I had met him about 7 years earlier, when I lived in Oak Park, Michigan. His father was a leading figure in the organization I worked for (NCSY) and Mikey, who lived in Pittsburgh, was an inspiration to everyone who came into contact with him. I had heard that he had begun to take a turn for the worst, but was dealing with it quite remarkably. He found the Internet to be a very useful tool in keeping in touch with his friends (who came from all over the world). I found Mikey online and asked him how he was. He spent the next 20 minutes talking, not about himself, but what I had endured. Everything was about me and my family, nothing about the condition that would take his life in just a few short months. It caused me to really think about my priorities and how fortunate we all are, even when we don’t realize it ourselves.
It was now April, six months post-transplant. This was when I was supposed to be “officially” out of the woods. I felt better than I had in months and I was optimistic about my recovery. I went into my six-month biopsy, confident in my improvement and optimistic in my future.
However, as often the case in my life, security is fleeting…
