Then my sister spoke with the operations people about having the circumcision at the hospital so that even if I wasn’t there in mind, I could be there in body. They told her it was rare to have someone who is not licensed to practice in the hospital perform any kind of procedure there. And even though a circumcision was a minor surgery, it was still a surgery. Jonathan felt there was no way it could happen. He is a man of rules and order, and he knew this rule was in place for safety reasons, so he wasn’t going to challenge it. But he didn’t seem to know my sister very well, or the kind-hearted folks at Prentice and Northwestern. They all bent over backward to make it happen.
And wouldn’t you know it? Through Chabad, via South America to the States, Michelle and Roy found the same mohel I had made arrangements with weeks before when I was planning Jacob’s bris. Other rabbis came too. They told Jonathan to pray. Pray for a miracle. Pray that I would be okay. Pray that I would be there for our son’s circumcision. And so he prayed.
The miracle came the day before the bris.
I woke up. Maybe it wasn’t a true miracle, but the timing sure made it seem like it was. My vitals were getting stronger, so the doctors had started decreasing the medications that were keeping me in the coma.
The first thing I remember saying, as I looked down at my swollen belly, was, “Am I still fucking pregnant?” No one knew how much neurological damage had been caused by the AFE, but my husband said he knew at that point I was going to be okay because I knew why I was in the hospital and I was cursing.
He said, “No, sweetheart, you gave birth six days ago.” That blew my mind. “What do you mean?” I was devastated. Where had I been? Tears were rolling down my face. He tried his best to explain, but I honestly have no recollection of what he said. Apparently I was still heavily medicated.
I cried and cried and cried. I cried about the loss of myself, and I cried because of the pain. The pain was immeasurable. My kidneys had started to fail, which had led to more tubes, more tests, and more pain.
I was in a daze as they wheeled me from one hospital room to a different room next door. They gave me the deluxe primo suite they gave to their VIPs. Room 1368. It was a corner suite with a view of Lake Michigan in one direction and Chicago’s famous Water Tower in the other. It was bright and cheerful, and as a “special” high-risk case on the floor, I would be calling it home for the next few weeks.
At one point a patient transporter came to take me from one appointment to the next on a gurney, and when he brought me back he said, “What did you have to do to get this room?” I said, “I had to die. So not worth it.” I wasn’t in the mood to explain, and I guess he got the message: he slowly backed out of the room.
Painkillers kept me from fully comprehending anything. I understood, kind of, what had happened, but I was told to not read anything about it just yet. I’ve always been a researcher and full of curiosity, but this time I wasn’t arguing. I didn’t want to know too many details. If it was anything close to what I had been visualizing for months, I didn’t need to have that confirmed by reading other devastating stories about it. I needed my strength to heal.
Although it was hitting me periodically that I had thought this was going to happen, I still couldn’t wrap my head around it. And the fact that I came out of it on the other side . . . well, I needed time to decompress. Unfortunately, I wasn’t going to get much time to do that.
It had been seven days. Unreal. Maybe, I thought for a brief moment, this was all a bad dream. I knew it wasn’t. I had gone through a pregnancy. I had seen Jacob on several ultrasounds, but I didn’t allow myself to connect with him while I was pregnant because I didn’t think I would be around. The reality was that I had given birth and I had yet to meet my son.
I was scared to see him. I was scared of him. His birth had put me in this state, and I was afraid that my apprehensions and fears would impede his spiritual growth. I believe that positive or negative energy can affect people in many ways. If we sense something odd, we might reject it. Living beings can sense things. If you are nervous getting on a horse, the horse can sense it and you will become more nervous. If you are happy and positive, people tend to migrate toward your energy, but if you are negative, even a neutral person who has made no prior judgment of you will be repelled. I was worried that Jacob might not have a natural spiritual connection to me, his mother, that he might reject me.
So many things were going through my mind as my sister wheeled his crib into the room. I looked at him from afar. I wasn’t ready to have him brought closer. Jonathan went over to Jacob, picked him up, and brought him next to me. All I could do was stare at him. Jonathan then put Jacob on my chest.
He was breathing so softly and sleeping. He was beautiful, but I couldn’t appreciate his beauty. I couldn’t wrap my arms around him, with everything I was hooked up to, and I didn’t have the strength to try to work around it all. In that moment, I wasn’t his mother. I felt like a stranger to him. Jonathan and my sister were his parents. I couldn’t breast-feed him, I couldn’t change his diaper, and the worst part was, I didn’t want to.
I cried. I told Jonathan to get him off of me, I needed to get some rest. I asked everyone to leave, and Jonathan brought Jacob back to the nursery. Jonathan understood, although he felt a little sad that there hadn’t been a bonding moment, especially given all we’d been through together. He was sure it would come later. I wasn’t so sure. I felt like a failure. The following day was going to be a big day, so I tried my best to sleep.
I was dirty. I felt disgusting. It felt as if I was surrounded by germs and I could see all of the bacteria around me. I wanted to breathe fresh air and sit in the grass, but that wasn’t going to happen anytime soon. I also wanted to pull everything off of me and start running, but I couldn’t move my legs. They had swollen to five times their normal size. For perspective, I had weighed in at 173 pounds when I went into labor. I started my pregnancy at 120 pounds. Now I weighed 220 pounds. I had acute renal failure, and the fluids were backing up. I felt like Violet Beauregarde from Willy Wonka and the Chocolate Factory, who kept ballooning in size until she almost popped. I didn’t know how I could actually expand any more.
I had heard they started me on dialysis while I was in a coma, but what did that mean? I was so drugged up, I was surprised I knew anyone was there. I really don’t remember anything from those first few days. At one point I forgot there was a baby in this story and I was just trying to make sense of how I got to this point and how I was going to get out of it. I looked down at my body and saw that there was a catheter inserted to help me pee, there were IV lines running in many directions, and there were bloodied spots on my neck where the port was hooked up to the machine for dialysis. I had another IV piercing my left shoulder. My left arm was more swollen than any other part of my body.
I also had an incision with staples running from my sternum to my pubic bone. The C-section had been left partially open to heal better and to allow blood clots to be pulled out with tweezers by seemingly skittish nurses. At one point, Jane, one of the seasoned nurses, came in and asked if it would be okay to bring in some student nurses to learn how to take care of wounds. These were young girls who had mostly seen healthy births and whose experience hadn’t gone beyond keeping small incisions clean. They had seen nothing like this. One of them was helping the resident clean out the incision, and I saw her look like she was about to throw up.
Forget her, I was feeling everything and needed to throw up myself. I had no food in my stomach, so all I could taste was the bitterness of the medicine I was gagging on. I couldn’t eat—not that I wanted to in those moments. The edema (the swelling) was so bad that it was putting pressure on my stomach, so even if I had managed to eat a morsel of food, my stomach would have expanded and I wouldn’t have been able to relieve the pressure by going to the bathroom. The edema went all the way to the bottoms of my feet, where it felt like constant pins and needles. The intense pressure caused cramping in my feet, which made it ve
ry hard to walk. I gave up trying to deal with it.
I also kept telling the nurses the catheter was painful. I complained several times that I felt like I was swelling in that part of my body, but was told that everything was normal. Finally, my doctor came in and saw how swollen my vagina was. They pulled out the catheter. It was instant relief and deflation. Everything relaxed, and in five minutes the swelling was subsiding. Jonathan was again surprised by how well I knew my body, even while I was heavily medicated.
Someone was stupid enough to hand me my phone, and I started making phone calls and posting on Facebook, almost continuing where I had left off. I called my best friend Rosalind to tell her the bris was happening this week. She had no idea what I was saying, because I had a croaky throat and she was unaware that anything had gone wrong. I posted on Facebook that I “dies, but now aliv out coma but liv.” When Jonathan started getting frantic calls from friends, he grabbed my phone and saw what I’d posted.
I wanted to be immediately better, immediately. I needed normalcy. I tried to get out of the bed at one point on my own. Big mistake. I watched everyone talking as I “sneakily” inched my way to the edge of the bed, stood up, and then all at once saw everyone again, but at a 90-degree angle. I smacked my head against a pole and the edge of the bed, and everyone screamed.
If I was in pain from that fall, I didn’t feel it. The drugs took care of that. Luckily, I didn’t pull out any of the lines leading to my vital organs in that instant. I had to promise everyone I would stay put. My type A personality had to be kept in check, but I didn’t give in without more fights.
My mother bought me a new dress for the bris, so I could change out of the blood-soaked hospital gowns. I couldn’t sit up, and I certainly couldn’t take a shower. My sister did her best to comb my matted-down, unwashed hair. Ever try those shampoo bags in a hairnet? I did. They don’t work. My face had a yellow pallor, so my sister applied makeup to help me look somewhat alive. I didn’t look alive. I actually looked like death warmed over. In fact, my photographer friend Lori, who came to shoot the bris, said there was no life behind my eyes. But I was alive. I was alive, and my husband was looking at me, and I could feel his heartbeat. I could see the tears in his eyes when I could actually look back at him and talk to him. Next to our wedding, it was the happiest I have ever seen him, and lucky for me, my friend captured it on film.
I have no idea how long the bris was, but it was long enough for people in the religious community to come up to me, one by one, to tell me what a miracle it was that I had survived. What a blessing that G-d showed up and bestowed a miracle upon our family. Friends of mine tried to lighten the mood by telling jokes, but I could see the fear behind their eyes as they looked at me in disbelief, amazed that I actually pulled through.
Northwestern is a teaching hospital, so I had to get used to groups from different departments like cardiology, nephrology, pulmonology, and gynecology wanting to visit the “miracle mom.” They asked me a ton of questions and then read my charts, and again, one after another kept reiterating what a miracle it was that I had survived. I guess I understood the rarity of surviving an AFE, but their attention made me feel like a sideshow act. I had become a case study at the hospital.
Chapter 8
LIFE IN MY HOSPITAL ROOM became routine. I got used to having my vitals checked at certain times of the day. I also got used to my family having conversations about me in the room, but not including me. The catheter was gone. The tape that had held the drainage tubes in place was removed, along with layers of my skin, causing deep scars. I couldn’t lie flat, I couldn’t lie on my side, and sitting up was painful. There was no way to get comfortable. Everything hurt, including my psyche.
I was still heavily medicated, but at points of clarity I began to feel again. I felt intensely sad. Crippling sadness. I was grateful to be alive, but I was bedridden, my brain wasn’t functioning, and I couldn’t walk. I was afraid I was going to stay that way.
The fear and sadness were usually interrupted by another doctor, nurse, or group of students taking a “field trip.” I overheard one doctor say that the hospital had only ever seen ten cases of this rare condition, and only four of us survived. The three others had neurological damage, but my preliminary reports indicated that I was okay in the brain department. They kept saying they couldn’t believe I survived. Maybe they thought it would help to hear it, but it didn’t.
Why did I pull through when others didn’t? It was a question I tried to answer with Dr. Elena Kamel one early morning. She is one of the founders of the Women’s Group of Northwestern, where Julie is a partner. Elena had come to remove my sutures with Julie. While she was trying to distract me from the pain, she held my hand and told me she had come to my ICU room every night when no one else was around and brought her siddur, or Jewish prayer book. Elena said she prayed and prayed for me to recover. She told me she noticed my small royal blue and gold siddur on the nightstand and told me that her grandfather had given her the same unique style of prayer book many years before, which she brought with her every night that she prayed in my room. Connected by that prayer book, Elena told me that she had kept close track of my case, reading every chart and talking to the other doctors. With tears streaming down my face and with a shaky voice, I asked her, “Why did I survive?” Elena replied, “I can’t give you a medical reason why you survived. I think you need to go spiritual on this one.”
Spiritual? Like G-d pulled me through? Maybe. But wasn’t it me who had told everyone this was going to happen? How did I know? These “big” questions were too overwhelming to deal with at this time and made me more exhausted thinking about them.
The next day, while hooked up to the dialysis machine for my four-hour “cleansing,” another group from cardiology approached and asked to “interview” me. “Do you know how lucky you are to have survived this?” Question after question was hurled at me as if I were being interrogated. It was uncomfortable, and I felt like a science experiment. They talked about me as if I weren’t there. I broke down crying.
CARLA, THE NURSE ATTENDING TO MY SESSION, asked me if I prayed and then asked what my intentions were on the outcome of my situation. Maybe the drugs had impaired my thinking, but I wasn’t following her in that moment. She then told me a story.
Years before, she had been in a terrible car accident, and she had found herself where I was now—on dialysis to help save her life. She told me that her then-two-year-old daughter kept asking her grandmother why her mommy looked like a monster and that her daughter refused to be held by her. This brought Carla to the brink of letting go and giving in to her misery, but then she made a decision. She said to herself, “I am going to live, and I am going to be stronger than before, and I am not going to let my negativity or anyone else’s consume me.”
This was not just “positive thinking” on Carla’s part, but a strong intention to live. And not just in a physical sense but in a spiritual sense as well. That was it. In that moment, I understood. It was spiritual energy she was telling me to harness to pull myself out of my state of mind. Up until that point, I’d been focused on the physical world. That was the moment when my spiritual recovery started, and it made all the difference in my physical rehabilitation.
That same afternoon my family rabbi from LA, Rabbi Mentz, surprised me by showing up in my hospital room. He told me to change my sadness and frustration with the doctors telling me how lucky I was to be alive into appreciation for the doctors who kept me alive. It wasn’t every day, he reminded me, that doctors look at a case and say they have witnessed a miracle beyond all scientific explanation. Their wonder also validated the great work they’d done to save me. I needed to turn this thing around.
Call it mind over matter, but I started getting better. I was determined. After six days in a coma followed by many weeks of not “being there” mentally, I wanted to feel a part of the world as quickly as I possibly could.
I forced myself to get up and walk. I pushed through the p
ain, through the blood clots coming out of my incisions and dropping into the already blood-soaked mesh granny panties the hospital provided, and through the enormous weight gain. I pushed through it all.
The constant attention from my doctors and other hospital staff began to wane, and eventually they went back to business as usual. At one point, a social worker came into my room to check on Jacob’s status: Could he be discharged now? Jonathan wasn’t there, so she asked me to fill out the paperwork on his birth certificate. Still drugged up, I misspelled Jacob’s middle name as well as my own. The social worker also wanted to find out whether we had someone at home to help care for him once he was discharged and whether our home would be a safe environment for him. My sister said the conversation between me and the social worker was comical.
SOCIAL WORKER: Do you have help at home?
ME: Oh yes, we have 12 people who live with us and help us 24 hours a day.
SOCIAL WORKER: Okay, that’s unique, but great. Do you have any stairs?
ME: Nah, we live in a one-story apartment. [We actually have 32 steps.]
SOCIAL WORKER: Do you have means to get around the city?
ME: Yes, I have a personal chauffeur, who works 24 hours a day for us.
I wasn’t being sarcastic. I genuinely believed that. Now, maybe at that point you would think she would stop taking notes and realize I was heavily medicated and slurring my words. But no, she continued.
SOCIAL WORKER: Okay, so driving isn’t an issue. Does your husband work?
ME: Oh no, he is retired. He stays at home with me 24 hours a day.
My sister was smart enough to call Jonathan and tell him to get back to the room immediately. He posted a note on the door that said: NO ONE IS TO TALK TO MRS. ARNOLD WITHOUT HER HUSBAND’S PERMISSION.
Rosalind, my best friend, flew into town to see how I was doing. Picture a laugh-out-loud, hysterical, beautiful, witty Nuyorican—except that she’s from Framingham, Massachusetts—and that’s Ro. No one in my family had warned her about the severity of what had just happened to me. Maybe they thought she would be too frightened to come, but they didn’t count on the tight bond we share. I knew she would be there no matter what.
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