My resilience is feeble. I feel like a rubber band stretched to the limit. In the past week I have said on three separate occasions “I am done!” or “I have lost my patience.” When our office landlord sent bills for additional charges, I thought I could consider giving up my practice.
The Israeli-Lebanon War has me glued to the television or radio for news and updates. When I see a mother mourning her soldier-son who has died in Iraq or Israel, I weep. When I hear of sons being called up for active duty, I worry. My agitation keeps me moving. I have trouble sleeping. Last night I dreamt that I was in Brazil, where men were on a rampage, seeking out women to torment. I awoke distressed, wanting to pull the covers over my head, not ready to face the day.
My son’s birthday is next week. He would have been forty-one were he still with us on this birthday. Although he had just turned thirty-four when he died, he was wise beyond his years. He seemed always to be a grownup, even when he was tossing rolled up paper balls to his colleagues at work, even when he was writing hilarious songs for someone’s birthday. Josh was serious underneath his upbeat demeanor. He made it very clear to us, his parents, that he was in charge of his life, that only he would make the important decisions about his personal life and his medical care. I recall a time when his dad wanted to join him at an appointment with one of his doctors. He insisted that his dad couldn’t ask any questions, except to him, and that he could only listen, “sit in” on the consultation.
The grief doesn’t change, doesn’t get easier. Beginning in early August, my grief hangs like a curtain of sadness over everything I do, every thought in a day. It begins just weeks before Josh’s birthday and continues through to the anniversary of his death in September. I am surprised and chagrined that it doesn’t seem to get easier with time. Even though seven rich years have passed, eight more grandchildren have been born, and two more weddings have taken place, the death feels like it occurred a few months ago.
I can remember the ups and downs of the days prior to his sudden decline. The ablation procedure that was supposed to repair the electrical workings of his heart was a failure. When I saw him the day after the procedure, he told me that paddles had been used to revive him, and then said he was “in v-tach.” I understood that to mean that he was experiencing ventricular tachycardia, an ominous development. He expressed no emotion, talking about himself in the third person, as if reporting on a case.
The following evening, color had returned to his cheeks, and he was jovial and chatty. Two of his favorite colleagues were visiting, and I saw the Josh his colleagues knew at the office as Josh told stories and teased them. I joined in with the good-humored banter, wondering if perhaps things were going to be okay, that Josh would be fine when this ordeal was over. I allowed myself to forget about the paddles and the v-tach and that he had no appetite.
Two days later, a Friday late morning, Josh called me at the office, told me that a nurse was going to talk to him later that day about heart transplants and asked me to be there. The urgency in his voice prompted me to cancel my afternoon appointments. When I arrived at his hospital room, Josh’s father and wife were already there. A nurse was explaining at length all the qualifications and the long wait for a transplant. When she was done Josh turned a pale green and began to cough and gag. Then he vomited. He scarcely had enough energy to breathe. A nurse brought in the almond shaped bucket to put under his chin while I stroked him and wiped his face, telling him he would be okay. I believed at the time that his guts were expressing the hopelessness he felt at the news that he would not qualify for a heart transplant, that all hope had evaporated. I left the room to heave up my own feelings, and to share that disturbing moment with my ex-husband. As we held each other, I overheard a doctor at the nurse’s station bellowing to his colleagues in a loud voice, “There is no way he could qualify for a transplant—he is in such bad shape, he couldn’t tolerate …” He was talking about my son as if he were a case, a dying person who was too sick to consider treating.
At that moment I realized that Josh could die.
I remember going to my office that evening to retrieve my appointment book and bag, and mindlessly vacuuming the hallway. I needed to move and do something while I absorbed the unthinkable. I continue to recall that time, that change in my lifetime, when I vacuum that hallway where the blue waiting room chairs sit.
The next morning, Josh’s blond-haired woman doctor, who had been his primary cardiologist for years, told us that Josh was being transferred to the cardiac intensive care unit to restore his strength over the weekend. She was going to be away for the weekend, but others would be looking after him. In the intensive care unit, Josh grew more and more withdrawn and weaker. He complained of being tired. He wasn’t even interested in our reading the newspaper to him or watching tennis on the television set that hung from the ceiling. His blood pressure was perilously low, and while I didn’t understand what that meant, the reaction of the staff who regularly checked the monitors told me all I needed to know. Josh was failing.
Monday was Yom Kippur, and at services we told the rabbi that Josh was in the hospital and not doing well. “Not doing well” did not convey my terror, but I imagine my sad eyes and drawn face did. Sitting propped up in his bed, Josh seemed unchanged in his hospital room in the intensive care unit. Gray pallor, immobile, uninterested in talking, Josh sat, staring at the silent television in front of him. I chatted about the news, told him about services, and then announced that I was going to do some errands and would return soon. I couldn’t sit with the silent sadness any longer, and I couldn’t think of anything to say. When I returned, Josh complained of stomach pains, saying that he had been constipated for several days. Nurses came by to check on his vital signs, indicating that his blood pressure was still very low despite the medications they were giving him to elevate it. At about 7:30 P.M., a nurse came by to say that they were taking him downstairs for some tests to determine what was going on with his stomach, that he would be there for a couple of hours and I should go home. Alarmed, I asked if I could accompany him or wait in his room. No, I was told, it may take some time, we will take good care of him. Reluctantly, I kissed him goodbye and left.
That night, Josh’s cardiologist called to say that Josh was not doing well, that we should gather the family together to see him before long. Hesitantly I asked how much time did she think he had. She said that it was probably a matter of weeks, maybe less.
That evening, as people were breaking their fasts, I telephoned Josh’s brothers who lived outside of Washington to encourage them to visit Josh in the coming days or weekend. I found myself leaving frantic messages on answering machines. When I finally reached Josh’s dad who was at a breakfast at a friend’s house, I broke down in hysterical sobs. He understood what it meant.
At three in the morning, the phone rang. Josh’s wife was calling to say that they were about to put Josh on a ventilator, and if I wanted to talk to him, I should get there soon. Mindlessly, I jumped out of bed, threw some clothes on, and with my husband in the passenger seat, speeded to the hospital, relieved that there were very few cars on the road. When we arrived, Josh was already on a ventilator and heavily sedated. The doctor on duty blurted out “it is a matter of hours.. .there is nothing else we can do.”
When I think about my grief, I find myself missing the Josh I got to know as an adult, and resenting that that special time was cut short so precipitously. I wish we had talked more before he died. I wish we had been able to talk about what it was like for him, living with health problems all of his life, and what the last few years were like for him. My early years with Josh were so painful and fraught with worry. When he was finally an adult I could enjoy, an interesting and companionable adult, his health deteriorated. I am aware that he wasn’t much of a talker about personal issues, and that I was hesitant to talk about painful themes. Yet I am left with how much I miss him, how much I would love to talk with him about so many things, what he is reading, what he is thinking about, what is going on in the world. Josh was broad in his interests: science fiction, the universe, politics, Judaism, science and technology, medicine, travel, sports. Josh was vitally interested in the world, and could talk knowledgeably about many areas. The only interests we didn’t share were sports and science fiction; those he shared with his friends and his brothers.
That last day in Josh’s life was a miserably cold and rainy fall day. It was an interminable day, a day without order, a day without schedules, meals, and places to be. I moved numbly, unaware of my body, unaware of my surroundings. I only knew that I wanted Josh’s siblings to get to the hospital so that they could say good-bye to him. The two who lived in the area, Suzanne and Adam, arrived at the hospital in the early hours of the morning. Armed with their cell phones, they got busy contacting their three brothers: Peter practicing pediatrics in South Carolina, Ben at graduate school in Ann Arbor Michigan, and Justin practicing psychology in Chicago. It seemed to me that they spent endless hours on their cell phones, making arrangements. At one point, my husband grabbed me by my elbows, escorted me to the cafeteria, and put some food in front of me. I forced myself to eat something. Knowing I wanted a cigarette, I went outside to stand in a shelter from the rain. For those few moments, while I watched the rain and smoked my cigarette, I could feel the pain.
Josh moved in and out of consciousness most of the day. Doctors checked on him, nurses moved in and out of the room checking his vital signs and changing his position or plumping up his pillow, irrigating the ventilator and his lungs. All this while the monitors kept up their morbid beeping throughout the day, beep-beep, beep-beep, beep-beep, counting down to when the beeping would cease. Colleagues from his office arrived in small groups, walked up to him, said a few words, and then left to stand outside his room or gather in the waiting room. They stayed most of the day, keeping vigil, sharing stories about him, sometimes laughing, sometimes tearful. A couple of his close friends stroked my arm; words irrelevant. From time to time, I moved close to Josh’s face and talked to him. Words were too trite to express what I was feeling, but I said them anyway. Mostly, I wanted him to be comfortable and to know that his brothers were on their way to say goodbye to him. In the early afternoon, the rabbi came by to say a prayer over Josh’s head. As the day settled into darkness, Josh seemed less and less conscious.
At about five o’clock, Peter arrived with his wife and two year old Gabrielle. Gabrielle told me that her father was a doctor and he would make Josh better. About an hour later, we heard that Justin was at the Baltimore airport where he would wait for his brother Ben and Ben’s wife, who were expected in about an hour. By 8 P.M., all the children were present. It was so important to me to have everyone together, gathering to say their good-byes. I needed their presence to sustain me.
At midnight, the brothers and their partners prepared to leave. I was beyond exhaustion, beyond feeling anything, barely able to stand. I decided to leave, knowing that Ben and Justin would stay with Josh. How many times I have regretted this decision! I should have stayed.
At 2:30 A.M., the phone woke me from a deep sleep. Ben said softly that Josh had just died. I gasped and then wailed, from deep inside. It felt as if a part of me had just died, that a live part of me had been removed from deep inside my body. I grasped my stomach, it felt empty. My baby was gone.
I have been looking at photographs of Josh. I want to remember him as happy and full of exuberance for life. Recent ones, those taken shortly before his last procedure, look sad and tired. Josh’s face is wilted, unsmiling, his body sunken into the seat, his swollen stomach protruding into his lap, his back bent with fatigue. His receding hairline and reddish mustache make him look older than a thirty-four year old. Earlier photos are full of grins and mirth. It was so easy for Josh to find humor and fun in everyday events. .
It is the day after Yom Kippur once again and I am lighting another Yahrzeit candle, the candle that burns for twenty-four hours to remember the loved ones who have died. Ben called on Yom Kippur to ask how I was doing, recalling that fateful time seven years ago when he returned from a breakfast diner to get my frantic call telling him that Josh was dying. He recalls his last encounter with Josh in August when we were celebrating Josh’s thirty-fourth birthday. Ben’s wife had remarked on how bad Josh looked, how she wondered if he would make it. Ben wouldn’t hear it, insisting that Josh would be all right, he always came through. We all believed that Josh’s spirit would carry him through, that he was a survivor.