MY BEST WRITING

Posted By on December 1, 2016

  • My Faith My Way (2016/09/01)
  • The Grief that Howls (2016/11/01)
  • Cancer: Emperor of All Maladies (2015/11/15)
  • Kids, Cars, and the Unpredictability of Life (2011/02/02)

FIGHTING BACK: One Mother’s Story–Chapter Four

Posted By on May 15, 2017

Valerie has cancer.

All at once I forgot about Ed’s reaction to my tears; normally, that would have been eating at me. But his biting behavior in the diner really didn’t matter anymore. I knew he was as shocked, as upset, as I was. And his conduct, I’m sure, was as outrageous as mine probably was.

Everything, all the problems, emotional, financial, and otherwise, fell into a bleak hole. Val’s illness and her return to good health became the main concern for both of us. But first, I had to get over the fact of her disease. My God! Little kids don’t get cancer—And forty-year-old Mothers don’t die either, do they, Sue?—Okay. Okay. Just calm down. We’ll fight this horror. Ed and I will fight it. And the four of us will bounce back from this ordeal in one piece. We will be fine!!

Dr. Wolff became our pediatric oncologist and I didn’t like him. I didn’t like Dr. Gagnon, the pediatric orthopedist, either. What’s more, I didn’t like anything connected to the field of pediatric oncology. I was indiscriminate: I didn’t like the medical tests, the chemotherapies, the doctors, all the different specialists and the scientific trials. Because my daughter needed results. Right now!

I couldn’t let any of the medical people know my true feelings, though. How could I? We needed help. Since the cancer hadn’t yet been identified, Ed and I allowed the specialists to do combat for us. All we could do was stand helplessly by, hold Valerie’s hand and love her, as always, totally.

“It looks like a neuroblastoma,” said Dr. Wolff in his usual monotone. “That’s a solid tumor mostly diagnosed in infants and children and it’s found in softer tissue like the lining of the abdominal cavity.” Dr. Wolff also thought that the malignancy in Val’s leg was metastatic and had spread from another part of her body. He spent a lot of time on various tests searching for the primary site, the original area of tumor development.

Stretching the time between biopsy and treatment even further were elaborate tests that could not be analyzed at Babies. These were sent out to research facilities in other parts of the country. I knew that the tests were necessary but treatment had not yet begun and my daughter was not yet on the path to recovery.

Take the catecholamines, a twenty-four hour urine test. For that one, I tracked my three-year-old like a secret agent, sneaking after her throughout the day, a special plastic container in my hand. I figured that every drop of urine collected was a step closer to a healthy child

What a process. Valerie still had a cast on her right leg to protect it from the damage caused by the tumor and the biopsy. She was not in any pain and the cast from the outset had never stopped her. But I did. I interrupted my daughter’s play, her TV time, her mealtimes and her sleep. I bothered her about peeing so often that my sweet, humorous little girl ended up hollering at me. “NO. NO. NO, Mommy. I don’t have to go!”

Per doctor’s orders, Val had to wear a special plastic bag with openings for her legs instead of panties, and over that, a plastic diaper. “Just in case,” I told her. That brought forth another shout. “I’m not a baby, Mommy!”

I checked her continuously. Neither one of us got much sleep that night. Both mother and daughter were inordinately grateful to see daybreak.

The entire sample had to be shipped to California. We waited three weeks for that analysis.

All along, the pathology, the special nature of the tumor, had been uncertain. On the list of possibilities was Ewing’s sarcoma, a rare bone tumor that occurs most often in adolescent males. As a rule, Ewing’s affects the long bones of the legs, that is, the femur or thigh bone and the tibia or shin bone. It was far down on the list and difficult to distinguish from similar tumors. The lab in California took an agonizing two months to determine the diagnosis.

The call came the beginning of March 1970. The primary site was in Valerie’s right leg and was not a neuroblastoma. It was, in fact, Ewing’s sarcoma. While Val didn’t fit the tumor pattern of an adolescent male it was Ewing’s with no sign of metastasis, according to the test results. Sure, they have to add that . . . “according to the test results”. There’s always some kind of caution in medical discussions. So much caution it’s confusing. I’m happy it’s nowhere else but—

Two days later, Ed and I were back in Dr. Wolff’s office; Valerie was next door in a small playroom watching TV. He was sitting at his desk, the medical report in his hand.  Dr. Wolff told us the biopsy wound had healed, the cast had just come off, the diagnosis made and treatment would begin: a multi-chemical, twice-monthly injection with reactions that would include vomiting, constipation, hair loss, lack of appetite and more. His list was long and scary. The professional wall is in place; I can hear it in his voice and I can’t blame him. What a job.

That first treatment was a shock, as were all the rest of the injections, I might add—none much different from the first. A nurse had come into the room as Dr. Wolff lifted Val onto the examining table. I couldn’t get close enough to hold her hand but I could see her face. As the doctor searched for a good vein Val watched suspiciously. The needle went in and my daughter howled. Then suddenly she stopped crying. Val looked surprised but the doctor only nodded. “The mixture often leaves a bad taste in the mouth; if it’s going to happen, it will happen quickly.” He didn’t tell us that! Val started crying again.

Neither Ed nor I were able to calm her—we were too far away—but the nurse tried. My God. She’s only three! Finally, when the injection was over, I held Valerie tight until her crying stopped and then brought her down from the table.

With our daughter back in her stroller and my eyes nervously on the doctor, I said, “How does a Ewing’s begin, Dr. Wolff? Where does it come from?”

He shrugged. “A tumor is a mass of new tissue with no physiological function. The mass goes haywire and invades the surrounding tissues.” He looked back down at the report in his hand.

That wasn’t enough for me. “I mean, what triggers it?” Shifting in his chair, Dr. Wolff shrugged again. I wanted to understand the unknown—what caused it to grow in the first place—but it sounded like I was cross-examining him. I hadn’t intended that. And it was clear that he didn’t like it. Oh boy. Be careful, Sue. Remember Dr. Gagnon; he didn’t like being quizzed either.

I stared at Wolff, then looked away. O God. He frightens me. I should watch my mouth. He’s too critical to Val’s health.

Ed and I avoided any talk about Val’s cancer that day. If given the chance, I would have discussed it endlessly but my husband’s frozen face and averted eyes offered no encouragement. Would I feel less alone if Ed and I talked about it? Or would I fall apart? Would he? Silence seems to follow me. Nobody would talk to me about my mother and now my husband won’t talk to me about Valerie, about her cancer. The dry taste of soot filled my mouth.

But we had to discuss Valerie’s illness with others. Who with? We decided on my dad, Ed’s two brothers, his one sister and two good friends, Phyllis and Isa and their husbands, Don and Sandy, but not Ed’s mom. Her heart problems were a permanent barrier to the truth about her granddaughter.

No one else would know. We were afraid if other adults knew what Val’s illness was, they would talk about it in front of their children. In turn, the children would say something to Val or Stacy and that’s not what we wanted. I wasn’t certain, though, who would be harmed more, the girls or Ed and me.

We discussed it briefly. Ed said, “If we tell the girls that it’s cancer, they’ll tell their friends who, maybe, would say cruel things. I don’t want that.”

“Well, I don’t either, Ed. But what if it comes out and hurts them in a way we can’t understand right now?”

“That won’t happen. They just can’t know, period. They’re too young.”

“You can’t know that it won’t happen!” I yelled, my thoughts erratic and scary.

The discussion ended with a bit of rancor on both our parts. But it was over. What, in fact, would happen was truly unknown to us. Nevertheless, it was time to talk to the girls.

“Val, come here, sweetheart. You, too, Stacy. Daddy and I want to talk to you.”

I pulled Valerie onto my lap, put my arm around Stacy and, trying hard to keep my voice calm, said to them, “Val has some bad cells in her leg and will have to take medicine for a while. We’ll go to Babies Hospital for the medicine but then we’ll come back home.” Valerie looked pale and laid her head on my shoulder but Stacy asked, “What kind of medicine, Mommy? Like cough medicine?” I pulled her closer and kissed her forehead, “Yes, Pussy Cat.” Ed kissed both girls but remained silent. I put Val down but she stayed close to me. Stacy ran off to her room to play.

Eventually, Val went off to watch television, and I said, with as much resentment as I could muster, “Thanks for the help, Ed.” He was dismissive, saying quietly, “You did fine.” My husband then turned and went downstairs to his office, his retreat.

The injections, beginning that first week, continued every other week after that. Poor Valerie, poor Mommy, poor Daddy, poor Stacy. And yes, Dr. Wolff’s list of side effects was on target: vomiting, hair loss and other chemical reactions that I thankfully can’t remember.

Constipation was another norm for chemotherapy and for that Val was prescribed Colace, an over-the-counter liquid stool softener. However, my daughter had diarrhea and a strange chemical odor that followed after each shot. Over a period of several months I’d say to the doctor, “Valerie’s not constipated, Doctor Wolff. But she does have diarrhea.”

His response? “Please continue with the Colace, Mrs. Goldstein. She needs it.” And so I did, for a while, but then when I recognized that diarrhea was Val’s personal reaction and not constipation, I discontinued it. She didn’t need any more unnecessary meds in her little body. Says Dr. Sue, with trepidation: but who knew more, the doctor who saw her for one-half hour every other week or the mother who took care of her twenty-four hours a day?

The hair loss didn’t bother Val. Her lovely baby hair came out in large clumps on her pillow and I whisked it away first thing in the morning before she could see it. Her new wig, however, was something else. Not thinking that she was only three and too young to worry about a new mop on top of her head, I took her to my beauty parlor for a very short cut.  Valerie thought her new wig was something to play with. I tried to tell her, gently, that it was not a toy but she didn’t pay attention.

She combed that wig constantly, put it on all her dolls’ heads and had a fine time. Then she would say, “Look, Mommy, see how pretty!” She never, ever wore it. Oh, well.

From time to time, once the treatments began, Stacy would ask, “Mommy, what’s wrong with Valerie? Why is she always throwing up? Yucky—.”

And so I’d remind her, “Val has some bad cells in her leg, honey, like an infection. You know, when you get a bad cold or when you have an earache, and the doctor gives you medicine to take? Well, it’s the same thing. We have to get rid of those bad cells; the medicine will do that, but it’ll take a while.” My God. They’re babies. Is this really the best way?

When she could, my friend Phyllis would drive into New York with Val and me, especially in mid-winter. I’d park two blocks away in a parking garage and she and I, with Val in her stroller, would walk to the hospital. When necessary, we’d pick the stroller up and carry it over huge mounds of snow at the sides of the New York streets. From time to time I’d shout out in alarm, “Watch it, Phyll. Valerie’s going to fall out!” Val would laugh gleefully and, soon, so would we as we climbed over those huge drifts on a sunny day in Manhattan.

On the way back to New Jersey after each injection, mostly with Ed, Val would begin vomiting. I’d hold her forehead with one hand and in the other hand, just barely cling to a large pot. We learned to carry that pot and a box of tissues in the car at all times.  I remember that my grandmother held my forehead whenever I vomited. Did it help? Who knows? Did my mother do that for me?

What about my other daughter back at our home? Poor Stacy. Baby sitters were not a problem, so I thought. She’d go to a neighbor’s house or I’d hire someone. I did wonder, however, about the many stomach aches she was beginning to have. I tried not to think too much about that. I had no mother so how do I know that I’m doing things right? Okay . . . stop thinking about my mother!

When Val was able to go back to preschool, I’d say when asked, “My daughter has a bone infection. She’ll be fine once it’s cleared up.” I never, ever, used the word cancer. I had become a believer like my husband.

No one suggested that this wasn’t a good way to handle things, that lying would cause additional pressures. Sure, lying was inherently bad but our concerns overrode the truth.

We had to protect both of our girls. That was our job.

So lie we did. It was our decision. And we lived by it.

###

 

 

 

FIGHTING BACK: One Mother’s Story–Chapter Three

Posted By on May 1, 2017

 Val at three

“Stacy, hon. Daddy, Valerie and I have to go into New York again. The doctor wants another look at her leg.”

No questions asked; no further explanation needed.  I wondered briefly about my mother; how would she have handled this? But she was not there for me: not to rely upon or to babysit, to cry with me or to advise. I told Stacy we’d be back later that day and would pick her up at our friend Phyllis’s house. She’d play with Johnny, Phyllis’s son. He was a year older than Stacy but they had fun together.

It was early Friday morning, four days after our first visit to Babies. I walked out to the curb with Stacy, kissed her goodbye and watched as she boarded the bus to kindergarten. Reluctant to face the day yet too cold to stand outside any longer, I ran into the house and called out to Valerie, “Come on, Pussy Cat. Let’s get you dressed.” I had already told Val about our return to Babies and her impending biopsy. I didn’t know how much she understood.

Ed and I spoke little during the hour and a half trip, our anxieties carefully hiddden from each other. With Valerie asleep in the back, the ride was strangely quiet.

Once at the hospital, we checked into the ninth floor’s pre-surgery unit where an aide walked us to a small room for one and in the room, I slipped Val into the hospital gown given to me earlier. Ed sat down on the bed next to Valerie. Space was limited. I leaned against the bed’s foot rail.

“Let’s color this sketch of a donkey, Val,” I said. “Here are the crayons. I’ll do the top hat in black, Daddy will do the legs in brown, and you’ll do the body in . . .  what color do you want, sweetheart?” After a while, a resident came in to give Valerie a mild anesthetic.

Although the injection was over quickly, Val’s tears outlasted the pain by far. She was not a big eater and had not missed either the food or drink withheld per surgical instructions. But now, poor little thing, she was clearly disoriented by the unfamiliar surroundings and kept repeating the word ‘home’ in between teary hiccups. A nurse peeked into the room. She said, with annoyance in her voice, “You’re not allowed to sit on the bed, Mr. Goldstein. It’s a hospital rule.” Her tone added to our edginess.

Too quickly, a male attendant came by to take Val into surgery. Ed and I hugged and kissed her; our daughter too drowsy now to protest. The attendant pushed a gurney into the room, transferred Valerie onto it and began to wheel her out the door. We backed away but followed close behind until we saw Val and her bed move through the double doors. Then, she was gone.

Those doors look too banged up, the windows near the top foggy with scratches. Why can’t we go with her, for a little while anyway? Okay. She’s having a biopsy, not major surgery. It’s just a little cut into her leg. They’ll find out what’s wrong and fix it.

A different nurse urged us toward the elevator. She told us about a waiting room off the hospital’s main lobby. “You’ll see it,” she said. “It’s right downstairs.” However, it wasn’t until we stopped several people along the way that we found it.

The waiting room, compared to the reception area at the Atchley, had table lamps that cast drab shadows. The bright lights that had hurt my eyes were missing here. Can’t please you, Sue! The waiting room’s furnishings were battered-looking, the sofas and chairs upholstered in dark navy. A large, squat table marred by an ugly cigarette burn was stranded uselessly in the middle of a lackluster carpeted floor. Two windows on the far wall gave a close-up view of the neighboring building and its scruffy exterior.

The half dozen people in the room were silent except for a petite, elderly woman who sat in the far corner muffling sobs that broke the strained silence. No one made eye contact. One man, ensuring no interaction with strangers, stood in front of the windows, his back to the room, his body rigid as he faced the dirty glass.

We waited once more.

“Okay, hon,” I said to Ed. “Tell me. How long can a biopsy of a little kid’s leg take. She’s so small.” No answer from my husband. But then, I didn’t expect one.

Unable to sit still, I wandered around until I saw the ladies’ room. I walked in. The bathroom was as cheerless as the waiting room, but it was clean and active. The in-and-out flow of humanity, with its different sounds and shapes, was an acceptable change of scenery for me. I made the trip three times in the hour and a half since we last saw Val.

Once more, I walked back to the waiting room, sat down on a couch and tried reading my book, Mary Renault’s “The King Must Die”. My thoughts pushed in. What if it’s malignant, if she has a big hole in her bone? It doesn’t make sense. She’s too young. Never heard anything like this. 

The sentences in my book turned into a kaleidoscope of madly shifting pictures: Val and Stacy running through the house, Val chasing Stacy, Stacy chasing Val, both skipping, hopping, jumping, laughing.

Ed moved about as well but his walks took him in a circle round the main lobby. Meeting back in the waiting room after one brief trip, he said to me, “You’re smoking a lot. You hungry? Want something to drink?”

“No thanks.” I stubbed out my Winston, got up and walked away. I wanted some water.

After I had a sip at the water fountain, I returned to the waiting room and rested against the doorway to people-watch. It was then that I saw Dr. Gagnon stepping out of the elevator, easily recognizable in a long, white lab coat that outlined his chunky body. A rusty red tone darkened his face, suggesting a recent sun-drenched vacation. The doctor’s walk was rushed and inattentive, head tilted forward and hands clasped behind his back. Val’s surgery was over.

I didn’t have to hear the words.   

Ed had seen him, too, and was now standing beside me. The doctor looked up, nodded, said to us, “Please come with me.” He motioned us to a room several doors away. It was a children’s playroom with a low round table surrounded by four scaled-down chairs. We both sat down but Ed quickly stood back up. The doctor remained standing and though not tall, at that moment he towered over me. He said, “I’m sorry to say that the bone tissue I removed from Valerie’s leg is malignant.”

  Cancer!

I sat immobile in the child’s chair, my arms around my knees, unable to take a deep breath. I stared at the floor, at the dirt spots on the linoleum, at the scuffed legs of another small chair nearby, at a pair of highly polished brown loafers. The doctor had small feet.

Ed, his face white, asked Gagnon some questions.  I tried to listen but the sounds melted into the air.

“I can’t hear you, Eddie.” Struggling to my feet, I shoved the mini-chair away. “I want to see Valerie. Now please.” Ed and I followed the doctor as he led the way to our daughter.

My chin started to quiver in the elevator. And then my teeth joined in, top and bottom banging against each other. I squeezed my lips shut, but I still heard those teeth banging in my ears; I was sure everyone else heard them too. Or maybe the sound was simply buried deep in my brain, their clattering solely for me to hear.

I had no tears, only the quivering chin and the banging teeth. I raised one hand to block the lower part of my face, hoping to stifle the sound and hide the weirdness, the betrayal of control. Ed nervously cracked every one of his knuckles, a dissonance I normally complained about. He and I stood side by side in the elevator, yet I felt alone, intent on curbing my body’s unfamiliar sensations. I didn’t think to reach for my husband’s hand or to move closer to him. He didn’t reach out to me either. We did not speak. We just stood there cut off from each other as the elevator inched upward.

I concentrated on the floor numbers above the elevator doors as they lighted one by one in tireless sequence. My mind chaotic, I wondered why the damned elevator diligently stopped on each floor whether or not anyone got on or off. Why not just shoot straight up through the clouds? Away from here, away from the desperate pain that I sensed would be with me forever.

On five, one woman plunged through the sliding doors as if certain they would close before she plunged through. Again on six a young couple raced out. On nine, we did the same.

The ninth floor—Valerie’s floor—was U-shaped and bright, with fluorescent lights running the length of the ceiling. We passed the nurses’ station and moved fast into the post-surgical ward, a room narrow but long and packed with youngsters of all sizes. They were dressed alike in striped hospital gowns and sitting or lying inside identical, oversized metal cribs. White bedding and blue blankets covered the mattresses. Filling most of the floor space, the cribs were each an exactly measured distance away from its neighbor.

As the young patients visited with their families or slept or moaned, all evidence hinted at medical trauma: bandaged limbs, transfusion bags, oxygen masks.

Valerie saw us approaching and stood up in her crib. “Sit down, sit down. You know you’re not supposed to stand on that leg, There’s a new cast on it!” a nearby nurse exclaimed. She firmly sat Val back down. Pride assaulted, my daughter’s face crinkled and tears tumbled down her cheeks. Her arms shot out to me in the familiar, demanding pose that, this time and forever more, sent tears to my eyes. I began to run to her. I needed to hold my child as much as she needed to be held. I grabbed her, remembering at the last minute to be gentle. Ed pressed in beside me and got his own piece of her. Even the doctor tried for a kiss. He was greeted with considerably less enthusiasm.

Ed and I each held one teeny hand. I talked to her, my words a puzzle even to me. “We’re going to get you some new toys to play with while you’re in the hospital, sweetheart. You’ll be here for a few—no, no, honey, you can’t stand up. The nurse told you that. There’s a playroom you can go to, with clay and finger paints, and—no, you can’t have any juice. Not right now. You can suck on some ice chips though. You like that.”

I don’t know how long she’ll be hospitalized or what kind of cancer it is. And that word, Prognosis! It’s so harsh sounding. Can’t ask that. Don’t really want to know. How is my three-year-old going to handle this? How am I going to handle this?

I turned my mind’s switch to off and gave my daughter a big, mushy kiss. She wiped the wet away from her face and I laughed. But what would we tell her? How would she understand being left here among strangers, strangers like that nurse who hollered at her. Ohmygod!

Worn out from the surgery and its aftermath, Val fell asleep before visiting hours were over. One weary-looking nurse told us, “Hospital policy doesn’t allow parents to stay overnight with their sick kids. There isn’t any place for them to sleep.”

“Besides,” she added, “the staff needs room to move around easily without any interference from others, and the children are more upset when the parents are here.” Really?Upset? That’s nuts!

It wasn’t right. She was a baby, confused, uncomfortable and away from her family for the first time. I knew it wasn’t right. But the hospital had its policy.

Ed and I each kissed Valerie gently on the cheek and whispered “So long, sweetheart, we’ll see you in the morning.”

On the way home, we stopped at a diner for something to eat. I thought that sitting down and eating might help ease our way into talking. We ordered and before I knew it I was crying, the tears coming down my cheeks in torrents. Ed looked at me in astonishment. With thinned lips he said, “Stop crying, Sue. You’re in a restaurant!” And I stopped. Just like that—the final nail in my coffin of tears.

###

 

FIGHTING BACK: One Mother’s Story–Chapter Two

Posted By on April 17, 2017

Eleven years after that jarring night in March when I learned my mother had died, my wonderful brother Stan was gone. He was killed in an automobile accident on the Henry Hudson Parkway in Riverdale, New York. Stan was twenty-six. I still miss him.

One year later, determined to build a new life for myself, I left home and moved into a Manhattan apartment with college friends. I soon met Ed and seven months after our first date we married—truly a new life.

Ed and I called a second floor walk-up in Plainfield, New Jersey our new home for one and a half years and then moved into a single family bi-level in North Plainfield. With the advent of two beautiful daughters born two years apart, Stacy in 1964 and Valerie in 1966, our family was complete. In short order, I had become a wife, mother and contented home-maker—a far cry from the single career woman I had planned to be.

The sense of being different, that lonely feeling of being unique, faded into the background although it never entirely disappeared.

I had a loving husband and two happy little kids who romped noisily through each day. Once in a while, though, the noise would abate and an easy quiet would fall on our home.

Like that one Sunday afternoon.

Stacy lounged at the end of our king-sized bed watching TV, belly down, one bare foot swaying casually in the air. Ed and I had our backs propped against the bed’s headboard, discards from The New York Times strewn haphazardly over the bedroom floor. Valerie, the baby of our family, napped in her room down the hall . . . or so I thought.

Valerie, three years old

“Listen,” I said. “Val’s crying again. Not a lot, but . . .” My quiet Sunday vanished.

I put the Book Review down, slid off the bed and glanced back at Ed whose eyes never left the Business section. Stacy remained focused on her cartoons.

Valerie’s cry sounded whiny rather than urgent. I hurried anyway. At three, she was filled with sunlight and self-esteem, leaped rather than raced to the next adventure, adored her more sedate, five-year-old sister and attempted at every turn to rule her family.

Today’s wake-up cry was a repeat of the day before. Once more, Valerie was fretfully bouncing up and down on her bed whimpering “MommyMommyMommy.” Silky-fine baby hair lay limp and sweaty on her forehead. Face flushed, arms outstretched, she waited for me, intent on instant comfort.

“What’s the matter, sweetheart? Bad dream? Something hurt?” Sniffling, she leaned into me and poked at her right leg. I folded my arms around her and kissed one of the two cutest noses on the planet.

“It must be pins and needles,” I said. That’s what I told her. That’s what I believed.

Comfort administered and accepted, Valerie jumped off the bed, ran to the door and promptly fell down, her head just missing the doorjamb. A brief howl and she was up and heading for our bedroom, her sister and the TV. On the way, she fell again sprawling face-forward on the hall carpet.

“Slow down, Val, and you won’t fall,” I called out, following her along the hallway. But the motion advisory was ignored. My littlest girl had places to go and things to do.

In our room at last and on the bed lying close to Stacy, a sib-skirmish erupted requiring Daddy’s authority. “Stop it, girls.” And for a second time, there was quiet. Ed raised an eyebrow my way silently boasting of father power.

Sundays with the children could be such fun. But not that Sunday.

For the rest of that day, Valerie continued falling until I sat her down on my lap, read her a story and tucked her in with a mushy kiss for good luck. She giggled, closed her eyes and welcomed sleep.

It wasn’t important, that falling-down. I knew it. But it wasn’t pins and needles either. Valerie might have smashed into something sharp and bruised her leg. Yet there was no bruise and if she had bunked her leg badly enough to cry about it now, why didn’t I know it when it happened?

Valerie slept through the night although the frequent falling began again the next morning. I started creating various scenarios: She was at my friend Jill’s house when it happened and Jill forgot to tell me; She tumbled down the stairs and the babysitter didn’t want to tell me; She banged into the sandbox at nursery school but didn’t want to stop playing long enough to tell anyone.

On and on my mind strained to make sense of what was happening but all the scenarios self-destructed.

Unnerved by her falls, I called our orthopedist and described our problem. His receptionist made an immediate appointment for us. I sent Stacy off to a neighbor’s house and moving fast strapped Valerie into the back seat of my Mustang. Once at his office in Plainfield Dr. Reesman asked three questions,

  • “Did she fall from a height?”
  • “Is she favoring her leg when she walks?
  • “Has she been irritable?”

With a shake of my head, I said, “No,” then immediately thought about my various, now totally irrelevant, scenarios.

Bending down to hold her hand and at the same time noting her gait the doctor led Valerie up and down a long corridor and discussed, as they walked, the differences between ‘Miss Piggy’ and the ‘Cookie Monster.’ Despite my worry, I couldn’t help smiling until a nurse whisked Val away for X-rays before I could give her a hug and kiss. Valerie didn’t appear frightened or upset but I was. My smile vanished as I watched the two of them disappear behind a closed door.

And at that moment, I remembered that Val had been cranky. Isn’t that the same as irritable? Of course it is: stupid me. But why couldn’t I have gone in with her? How would they keep her motionless on that hard table and under that big scary machine? My poor baby.

X-Ray of Child’s Tibia

After the X-rays were taken, Valerie and I sat in the waiting room eating Captain Crunch and Apple Jacks out of plastic baggies. I read her favorite Dr. Seuss book, The Foot Book, three times before we were brought back into Reesman’s office. Once there, Val clung to my leg, my hand resting on her head. We were both nervous.

The doctor pointed to six X-rays hanging on two rows of lighted view boxes. “These show an irregularly defined shadow on the tibia—see it? That’s the larger bone of your daughter’s lower right leg and probably the source of her pain. There are three possible diagnoses: a bone infection, an old break that never healed properly, or a bone tumor.” He couldn’t or wouldn’t tell which, but he did say that she was limping. Limping? I hadn’t seen that. How could I not see that? Limping? What else did I miss?

My anxiety increased when he recommended a consultation with a pediatric orthopedist in either Philadelphia or New York City.

I called Ed at work, told him about the X-rays and said I’d take them to our pediatrician that afternoon but would first drop Val off at a friend’s house.

After examining the X-rays, the pediatrician said he’d make an appointment for us at Columbia Presbyterian’s Babies and Children’s Hospital. I began to pin my hopes on an old break. An orthopedist can take care of that by simply resetting her leg, right?

Two days later Ed and I headed into New York with Valerie, her stroller, the X-rays, a beloved toy monkey with lumpy stuffing—Val had named it Monkey—a few of her books and baggies filled with snacks. Stacy would be dropped off with neighbors on our street.

We arrived at the Dana Atchley Pavilion, part of Columbia Presbyterian’s huge complex, and checked in with the receptionist on the fifth floor. The pediatric orthopedist, Dr. René Gagnon, would see us immediately. Surprised and pleased that there would be no down time, the three of us were led into the doctor’s office but had to stand by awkwardly while he sat at his desk and finished a long phone conversation.

After introductions, Ed handed over the X-rays. We watched without a word as they were clipped to the view boxes on the wall. I saw again the negative images of Valerie’s leg with that nasty shadow drawn in gloomy blacks and grays. It looked like a Rorschach splotch.

All business, the doctor scrutinized each X-ray while we waited. Fighting the urge to smoke a cigarette, I glanced at Ed as he tried to pull down his tie. It had begun the day too short, resisted all attempts to lengthen it and remained fixed in place three inches above his belt despite all the fidgeting.

Craving that smoke and no longer interested in the tie, I turned to the window. The scene was late December dreary with snow predicted. Val, in her stroller, was settled in peacefully, thumb in mouth when without a word, the doctor quickly removed every X-ray but two. He examined those for a second time while Ed and I anxiously looked on. Why don’t I just snatch them away and shout, “What? What do you see? Say something, for crying out loud!” I kept my mouth shut.

When finished with the X-rays, Gagnon sat Valerie on the examining table and probed both legs. Finally, he lifted Val to the floor and asked her to walk across the room. Not noted for her obedience, my daughter galloped wildly about the office, waving her arms, laughing and whooping, in her version, I suspect, of free will. Responding quickly, three adult voices shouted as one, “Slow down, Valerie!”

And she did, limping slightly. Following two self-important turns round the doctor’s desk Val came to a halt at my chair. I hauled her onto my lap and waited.

After a long pause, he turned to us, “Here are written orders for some blood tests and X-rays.” Scribbling his name on the bottom of two prescription forms, the doctor handed them to Ed and said, “I’ll talk to you after I get the results back. Don’t worry, the technicians will move fast. I’ll see you later.”

We were offered no new information yet a chill prickled my skin. Ed’s eyes remained on the doctor a moment longer. Val climbed back into her stroller and Ed wheeled her out. I squeezed through the doorway alongside them and put one hand on the stroller’s handlebar. I needed to keep physical contact with my daughter and my husband. I also needed to erase the memory of those X-rays.

Babies and Children’s Hospital was an immense old high-rise a few blocks down from the Atchley Pavillion. We walked a short distance up the block, pushed open the swinging doors that led into a massive two-story lobby and entered a world jammed with people. They all seemed headed in assorted directions as fast as possible.

The hospital staff, too, was on the move. Green-jacketed aides sped by pushing patients in wheelchairs while doctors, residents, and nurses walked briskly back and forth. Feeling out of my element, I expected—I wanted—to have Valerie diagnosed and then returned to the personal care of our local doctors. They’d be able to handle an old break or even a bone infection. I turned to Ed, “I hate this place.” He shrugged, a gesture I decided meant agreement.

The lab for blood work was on the fourth floor. It was a small, cramped space filled with chairs that looked like old fashioned school desks. Several long narrow tables lined the walls, their tops covered with microscopes, open texts and sterile packets of glass slides.

I held Valerie on my lap in one of the chairs while Ed and I took turns reading aloud from “The Foot Book.” I knew it by heart. So did he. So did she. But while the medical technician cleaned an area of her forearm with an alcohol swab, found a vein and inserted the needle, Ed and I read together, noisily I might add, “Feet in the day! Feet in the night! Wet foot! Dry foot!” It was an overly dramatic and unsuccessful attempt to distract Val.

Unprepared for the sudden jab, Val glared up at me accusingly, then began to cry as if her heart had broken. I held her close, her head to my chest, wanting to cry with her. I kept repeating, “Almost done, honey, almost done.”

When enough blood had been taken, the needle was withdrawn. Mollified by her choice of lollipops and a large Band-Aid over the tiny puncture wound as proof of a true boo-boo, Valerie calmed down.

The X-ray department on three was much larger and newer than the blood lab. It had a roomy reception area near a hallway lined with doors on both sides. Some were open and revealed wide, elongated tables and intricate overhead equipment. Most doors, however, were closed. These had signs hanging from a hook, ATTENTION. PLEASE DO NOT ENTER WHEN DOOR IS CLOSED. Young children are inside those rooms lying on huge, rock-hard tables. Must be awful scary for them.

The receptionist wrote Valerie’s name on a sheet of paper and waved us to some nearby chairs. We were tired although the day was only half over. Val was tired too. She looked up at me, head lolling to one side, her eyes droopy, one hand barely hanging on to Monkey.

After the X-rays were taken, with Val asleep in her stroller, we returned to the Atchley Pavilion, signed in at the receptionist’s desk, sat and waited some more. Trying to avoid any thought of test results and our upcoming talk with the doctor, I inspected our surroundings.

People were scattered about: relatives and friends huddled together in distinct units, individuals waiting alone, groups and singles deliberately separated as if to protect against contagion. Those who spoke whispered. We too sat by ourselves, whispered as well, and waited.

“What do you think will show up on those X-rays?” I said quietly. “Anything?”

“We’ll have to wait and see,” said my husband.

“Of course. More waiting. Waiting for blood tests; waiting for X-rays, waiting for the doctor. It’s ridiculous. This is awful.” I was clearly talking to myself. Ed didn’t respond and, thankfully, my little one was sound asleep, Monkey still hanging on.

Twenty minutes later, we were brought into the doctor’s office. Gagnon was again sitting at his desk and without preamble gestured to a new set of X-rays.

“Valerie will need a biopsy, a bone biopsy. It’s a simple surgical procedure and the only way we’ll know for sure what we’re dealing with.”

I couldn’t take in what he was saying although he continued talking.

“I’ll remove some bone tissue, send it to pathology, they’ll analyze it and the results will tell us where to go from there.”

He told us the biopsy shouldn’t take long but Val would need general anesthesia,

“I’ll be cutting into her bone; don’t know what I’ll find. It looks badly damaged. Badly damaged? Good God! The doctor continued, “She’ll spend the night in the hospital. Everything depends on what the biopsy shows. At that point, we can start thinking about treatment.”

“What kind of treatment?” I said, my voice a bit louder than normal.

He frowned. “I have no idea, Mrs. Goldstein; that’s why I’m doing a biopsy. Hopefully, we’ll find out what’s wrong. Then we’ll devise a treatment.” Hopefully? What’s going on here? Eddie’s so quiet. What else should I ask? I’ve annoyed Gagnon and I sure don’t want to do that again, not when he’s going to be operating on Val. Ohgod. What will I tell her about the overnight? Ohgod, Ohgod. Slow down, Sue, just slow down.

On the way home, Val slept in her car seat while Ed and I talked disjointedly. I was, trying to make sense of the day. It was useless.

“I can’t believe this is happening. She’s so healthy. What could have caused it. What’s IT?”

“She’ll be okay,” said Ed. “I liked the doctor.”

“You did? He’s not very talkative, but I guess it doesn’t matter as long as he’s good. He was annoyed with me, made me uncomfortable . . . in fact, I felt like an idiot. He said her bone is badly damaged. Oh boy, my heart skipped a beat after that! Maybe he was overreacting. Doctors tell you the worst possibilities.”

“He didn’t want to say anything until he’d done the biopsy.”

“I know that,” I said, getting annoyed with him.

“Look at this traffic. What a mess. We need gas but I’ll wait till we get to New Jersey.”

“Get it now. How much is left?”

“Don’t worry. There’s plenty. And gas is twenty cents a gallon cheaper in New Jersey.”

“Eddie, for crying out loud—”

As we reached the Holland Tunnel, the car began to sputter and slow down without any help from the brake pedal. Oh yes—the gas tank was empty!

“Eddie?”

But Eddie was too busy wrestling the car off the highway to answer me. No longer just annoyed, I was full-blown angry. I wanted to get home, make Valerie comfortable and hug Stacy. Eyes fixed on my husband, I waited for his comment. Did he seem sheepish, distressed, chagrined? No. And what did he say? Certainly not, “I’m sorry, honey.” Instead, I heard, “There’s a gas station up ahead. I know exactly where it is. You stay in the car with Val. I’ll be right back.”

The slam of the car door shocked Valerie awake and ratcheted up my anger. I offered her two Oreo cookies from my handbag, one for each hand; Oreos were always available for child-soothing purposes. Contented, Val’s face smeared with chocolate, the two of us sang “Old McDonald had a farm E-I-E-I-O . . .” and when she got bored I pulled out a sheet of paper and two pencils and we played tic tac toe until Ed came back with a metal can holding the gas: just enough to get us back to the station.

I looked out the passenger side window and muttered to myself. It was satisfying: “What a day. So lousylousylousy!”

The rest of the trip was made in silence. Glad that Val had fallen asleep again, I sat as far away from my husband as I could. I understood it had been a grueling day for all three of us but the worst of it was over. Val’s leg would be treated properly and she would mend. In any event, kids heal quickly. That’s what everyone says. And that’s what will happen.

###

FIGHTING BACK: One Mother’s Story–Chapter One

Posted By on April 3, 2017

FIGHTING BACK: One Mother’s Story

by

Suzann B. Goldstein

 

PART ONE

THE SECRET SITS

 We dance round in a ring and suppose,

  But the Secret sits in the middle and knows.

                                                ( Robert Frost, 1942)

 

I don’t remember my mother. She collapsed and died one Saturday night in March while my parents were playing bridge at the home of friends. Her name was Edna. She was 40 years old. I was 9 ½.

Sue's Mother

Sue’s Mother

My dad woke me late that Saturday night—I had been  sleeping at Granny’s, my mother’s mother.

His arms tight around me, his face slick with tears, Daddy said, “Ah, sweetheart, Mommy’s gone. She’s left us … she became very sick and left us … we have to be brave.” I had never seen him cry before.

Still half-awake and failing to understand how my mother would have left me, I climbed out of bed and, in my pajamas, began to wander around my grandmother’s small apartment. Aimlessly eavesdropping my way through the people that had gathered that night, I soon translated my father’s word gone into the shocking word died.

I don’t recall much about the rest of that night except for the agitated behavior of my parents’ siblings and their spouses. Clutching soggy,  balled-up handkerchiefs, my aunts and uncles carelessly swiped at swollen eyes and inflamed noses. Some clustered together in Granny’s living room, others stood alone in her hallway, but all appeared wrapped in pain. Even now, I hear their voices thick with tears: “I spoke to Edna this morning. She sounded fine.” “What’s Max going to do? Who’ll take care of the children? He has to work.” “Has anyone called the Rabbi?” “I can’t believe it … a cerebral hemorrhage!” “Can Mom handle the kids?” “Oh no! They’ll be too much for her.”

Their angst generated foreboding far greater than any spoken words conveyed.

In that burst of trauma, most memories of my mother disappeared: our daily interactions were erased, my early childhood years were blotted out and my mother’s mothering, for me, ceased to exist. Before long, my young mind also recognized that something else had changed. I had become unique among my friends. They all had mothers.

Sue’s Grandmother,
Granny

No member of my family and no one I knew talked about my mother. Our life seemed to pick up where it had left off before her death. I never             spoke to anyone about her and never told anyone that she had died and that I did not remember her. It was as if my mother’s death was a clandestine event, a secret kept from everyone including me.

And over the years I wondered. Where did those 9½ years go? How did they vanish? Who could I talk to? Did I willfully forget my mother? Was I angry with her for leaving me, abandoning me by dying? Had I been abused; was it my fault? Or was I embarrassed because I was different from my friends.

The hidden questions persisted until I accepted the fact, much later in life, that my loving dad, in awakening me from a child’s sleep on that terrible night, tears of grief streaming down his face, had unwittingly driven the shock and subsequent memory loss of my mother from my mind.

Finally … finally … I got tired of me analyzing me. Finally, I accepted what I could not change.

I have photos of my mother holding me in her arms, a smile on her face and I look at them now and again. They trigger few memories. I don’t remember if she picked out my clothes in the morning or took me shopping or if she told me bedtime stories or kissed me good night. All that time lost, all that living and loving obliterated.

It wasn’t until years later that I started questioning older family members about my mother. I did not question my father; I thought it would be too painful for him.

My aunts, my mother’s younger sisters, talked of her affectionately. Aunt Bea said, “She was my best friend.” Aunt Florence said, “When you left for school in the morning, your mother would stand by the living room window, hold back the curtain and peek out, just a little, and she’d watch as you walked down the street till you were gone from sight. She adored you.”

Aunt Florence went on, “After your mother’s funeral, you sneaked into her closet and pulled off a button from one of her dresses. You clutched it in your hand for most of the seven-day Shivah, the Jewish mourning period for our lost loved ones.”

Sue’s Father

Aunt Sylvia, my mother’s sister-in-law, said, “Your mother was a rare one. I loved her so much and miss her to this day.” David, a cousin on my father’s side of the family, told me that his mother looked up to mine and always smiled when she talked about her.

I never asked Aunt Anna Bresler, uncle Ben’s wife, about my mom. Uncle Ben was Dad’s brother; he and Aunt Anna were quite a bit older than my father who was the youngest in his family. I’m not sure why I didn’t ask Aunt Anna; she must have known my mother well. I do remember what she said about me: that I was standoffish, even cold. I thought, in turn, that she was much too old for me. Was that the source of my apparent indifference? That particular complaint has always disturbed me. If I was ‘standoffish’ maybe it was because I was young and embedded within my immediate family of three: Dad, Stan and Granny. Or maybe Aunt Anna, who had three sons, just didn’t know what to do with me. Was I being defensive, here? Maybe.

At any rate, my fact-finding tour was over. I was too late.

There is very little else I know about my mother. Except for two solitary sparks of recall:

It’s summertime. I’m five years old, wearing a white, short-sleeve cotton blouse and dark blue shorts. My mother is at my side in a small curtained-off cubicle at The Emergency Hospital, a freestanding health care facility on Main Street in Bridgeport, Connecticut. A neighbor’s German shepherd had bitten me. I lean against her as I stand on a shiny metal examining table and I feel her arms around me holding tight, her hand gently turning my face away while the doctor swabs the bite on my right thigh. End spark one.

Spark two reminds me that my mother did her own more tender form of swabbing when she cared for me after I fell down some concrete stairs and scraped my back.

 It’s summertime. I’m seven or eight years old and standing on a chair in my friend Carole’s kitchen. She too is standing on a chair. Our two mothers are dabbing at our scratches with clear cool water. Carole and I had tumbled down her front porch steps and landed hard on the concrete sidewalk. End spark two.

Sue’s Brother, Stan

That’s it. The ability to remember the first part of my life, that part anchored by the pivotal role of Mother, had all but vanished except for those two episodes. They are forever locked in my memory and hint at the loving warmth I received when she was alive.

Yet I consider myself lucky. While the gap created by my mother’s death was never filled, my dad, my big brother Stan and my grandmother took over the essential job of mothering me. They had much love to give and they gave it without pause.

I remember all three of them in radiant detail. Dad, my loving single parent, came to school for all the parent/teacher conferences. He hovered over my brother and me and rushed home from his hardware store in downtown Bridgeport if either one of us became sick. He took us out to dinner to celebrate our birthdays and he cooked our meals when we ate at home—no gender stereotyping here!

Stan, 4½ years my senior, took his position as second-in-command seriously. Based on his personal knowledge, he taught me the relevant information of the times while judiciously amending all to suit the ears of his younger sister including, NEVER KISS A BOY ON YOUR FIRST DATE.

And Granny? She was my superb and willing babysitter in-chief during the day while Dad was at work. Granny was wondrously soft, surprisingly strong and invariably at my side or in the background, whenever one or the other was needed.

They are unforgettable.

Even so, none was my mother. She was not only stolen from me by death but removed from my memory as well. And I am puzzled: had my mothering been poorer because of that loss?  Did my children receive all the mother’s love that they needed and deserved? I don’t know. But I’d like to think they did.

I do know that I keep missing a woman I don’t quite remember.

In gratitude for what I can recall, once a year on Yom Kippur, the Jewish Day of Atonement, I light a candle in my mother’s name along with all the others I have loved and lost. I recite the prayers and when I come to her name I whisper, year after year, the same several sentences, “Mom, I remember your sisters telling me their special stories and talking about you with love. And I remember your hands holding me, touching me gently, pouring clean water over my scrapes and soothing me, loving me. The two memories of you empower me. They add bounce to my life, and I smile.”

As the years pass the good memories, what I call my nourishing ‘moments-in-between’ continue to move me forward. I keep them close: the two brief vignettes about my mother; my dad’s notion that joie de vivre exists even under tragic conditions; Stan, my protective brother who held my hand all the way; Granny whose love never faltered; my wonderful husband Ed, my lodestar; and my two beautiful daughters, Valerie and Stacy, who convinced me that their grandfather’s love of life was, indeed, genetic.

Time races by. My inconstant life urges me to adjust, to connect, to persevere. Though I am anchored to the past, I have learned to savor the present. My loved ones taught me that. They keep me on my toes.

###

A LUCKY PUSH

Posted By on February 1, 2017

“Don’t push your luck, Sue,” a jogging friend said to me, apropos of something or other. His comment surprised me. Luck? What was he talking about? What kind of luck did I have?

Take jogging. I was followed on a placid, tree-lined road in a rural-part of Warren by a weird guy in a red convertible. He continued trailing me, slowing down gradually as he got closer. He finally said, “Hop in. I know a great place to jog.” He frightened me. I hollered out “Leave me alone” and moved further into the woods—not a very smart move, I know. But I never jogged there again.

Several years later, I was jogging—I love it—tripped on a broken piece of sidewalk and sprawled face-first in Beach Haven, New Jersey. I knocked out a front tooth and damaged four others. Don’t ask about the dental bills . . . I didn’t give up jogging although from then on I did it with my eyes pinned to the ground.

Okay, forget about jogging. What about gambling? Black jack, bingo, the lottery? My pockets remain empty.

It’s obvious. I lack luck.

More examples abound. On New Jersey’s Route 78, I switched lanes too fast one day, just like everyone else—there wasn’t a soul in sight—until I heard the siren call of a cop behind me. He gifted me with a speeding ticket.

An unpaid volunteer preparing to do my part for the citizenry of New Jersey? Despite the beautiful January snow swirling around outside, the low visibility and my husband Ed telling me to stay home, I was on my way to a ten a.m. meeting of the Somerset County Review Board. I was driving carefully and there was no human being or moving vehicle around. None!

My car hugged the curb on the slippery right side of the street as I shifted into low gear. I repeat, there was nothing moving on that street. Yet, out of nowhere, a police SUV materialized on the other side of the road, skidded toward me and slammed into the driver’s side of my beautiful little Mustang, not quite totaling it or killing me. His SUV had pushed me into a snow bank. One-half block from my house for God’s sakes! In order to get out of the car and, since the driver’s side door was battered shut, I was forced to crawl over the passenger seat and scramble out the passenger side window.

The snow bank is another story.

By the way, the police are not responsible for any accidents caused by them that occur on their watch. In other words, I paid for the damage to my car that insurance didn’t cover that was caused by him, the cop working for the city that day. Some luck.

Well, maybe a little.

Or a lot. Meeting Ed was very lucky; he remains the best thing that has ever happened to me alongside the birth of my children.

Contrary to my friend’s advice I do push my luck, whatever there may be of it. And because everything in life requires some sort of effort, why not luck?

With that in mind, does your luck help you or hinder you? Do you even believe in it? Tell me. I want to know.

###

Editor: Edwin C. Goldstein

 

 

 

 

A WOMAN TO REMEMBER

Posted By on December 1, 2016

 My cousin Polly died in her sleep on November 19, 2016. And I wept for all we had lost. Polly Wittenberg Rothstein was one month past her 80th birthday.

This is not a New York Times or a Wall Street Journal obituary. It is simply my remembrances of a cousin loved for who she was and for how she lived her life. Although she’s now lost to us all, our memories will keep her unique.

Polly and I were close as youngsters. As we grew older, though, and carried on with our lives we moved apart. Yet we remembered always the closeness that she and I experienced as children and that blossomed again each time we saw each other, no matter the number of years gone by.

My mother died when she was 40 years old and my dad, my older brother Stan and my grandmother, my mother’s mother, brought me up. I suspect that my Aunt Sylvia, Polly’s mother, took pity on them and would invite me to spend weekends at the Wittenberg home in Fairfield, Connecticut.

Aunt Syl was affectionate, beautiful to look at and fun to be with. Uncle Harold, a warm, amiable man was Aunt Syl’s husband and my mother’s only brother. They were a wonderful and intact family. Many years have gone by since Uncle Harold passed away and, just a short while ago, on January 20, 2016, Aunt Syl died. She was 101 years young.

Polly was the oldest of Aunt Syl and Uncle Harold’s three girls; Martha was the middle child and Judy was the baby. I loved them and I believe that they loved me.

The weekends I spent with the Wittenbergs were filled with laughter and long talks. At night, I’d sleep with Polly in her full-size bed. Their cocker spaniel, Queenie, slept between us. I remember one night, in particular, when Queenie suddenly sat up, looked at me, looked at Polly, looked back at me and vomited . . . over me. Yuck. The shrieks were heard all over Fairfield. I have many memories of my times at the Wittenberg home but that one, you will agree, was outstanding.

Most of all, though, I remember how stalwart and forward-thinking Polly was. Early on, she began an organization that fought for a woman’s right to a safe, legal abortion regardless of age, race, ethnicity, or income. One afternoon, we cousins were at Polly’s home in Purchase, New York after funeral services for another aunt of ours. When the chatting finally petered out, Polly’s husband, Jesse, told us about the right-wing politicians in Westchester county, New York who viewed her with hate as well as the death threats she received all because of her stance on women’s choice. Polly just ignored them and fought on. Jesse was so proud of her but what a shock to learn that people hated a cousin we loved dearly.

Polly had surgery in her 70’s due to an ongoing problem with her back. That surgery led to a stroke which left her almost completely paralyzed from the waist down. But it did not stop Polly from doing what she wanted. She traveled widely in and outside of the United States with her crutches, her walker and her motorized scooter. For example, she frequently flew to California to visit her mother, a recent resident of Laguna Woods, her sister Judy and Judy’s family. What’s more, she flew to Guyana to visit friends and bird count for the Audubon Society.

Polly loved animals, all animals. As far back as I can remember, she had dogs as pets. And birds! Oh boy. She bird-watched whenever possible. One summer afternoon at a family reunion my husband Ed and I held at our home, some of the cousins were talking in our den when without warning Polly, walker in hand, stood up and rushed outside to our deck. What was she looking at? A distinctive bird, naturally.

Polly took advantage of everything. And that included doing what she felt she should.

When Ed and I lost our surviving child, Stacy, to breast cancer, Martha drove from Cape Cod, Massachusetts to Polly’s home in Purchase, and then drove the two of them to our synagogue in Basking Ridge, New Jersey for Stacy’s memorial. Then Martha drove with Polly to our home in Warren and along with many of our cousins, including the Wittenbergs, Goldsteins and Breslers, joined us in sitting shiva, a period of mourning for Jews. When they left that night Martha drove to Purchase, dropped Polly off and the next morning drove back to her home on the Cape. Some driving, huh?

I’m not certain Martha knew this but the next day, paralyzed as Polly was, she got into her car and drove to our house. Alone!

I must emphasize this. Polly drove by herself. Without her helper, Jay, who took her everywhere. Polly had even tied her left leg to the bottom of the driver’s seat in order to inhibit its jerking motion. Once settled into her car, she hurried to our home and sat shiva with us once more.

We insisted at the end of that evening that Polly not drive home in the dark; and so she slept in our guest bedroom. After Ed and the Wittenberg cousins who stayed over, Lewis and his wife Cathy along with cousin Jane’s husband Bob, went to bed we three—Polly, Jane and I—talked into the early hours of the morning about all things sad, wistful and cheery. And then, a few hours of sleep later and some breakfast, Polly drove herself home.

My cousin Polly is now gone. There is more, much more, but I will close now and remember her, quietly, gently and by myself.

Polly was beloved by our family and her multitude of friends. We will miss her.

And now it’s your turn.

Please tell me about the Polly in your life. What did she or he do that made the world a little brighter for us all?

∗∗∗

Editor: Edwin C. Goldstein

 

 
Editor: Edwin C. Goldstein

The Grief That Howls

Posted By on November 1, 2016

40788-2001 I recently read an article written by The New York Times columnist Jane Brody1 regarding the loss of a spouse and the healing that takes place. It was titled Recovery Varies After a Spouse Dies. The early research maintained that “the vast majority of surviving spouses adjust well.”2 New research suggests, however, that a more varied adjustment takes place.

Brody continues by noting that factors like ‘a general feeling of loneliness’ or ‘problems at work’ go beyond the “. . . limited set of measured outcomes” that were originally used. The conclusions of the newer studies found that “It can take two or three years or even longer for some to recover from bereavement.”3

I don’t know about the reality of spousal death: mine is alive and well, thank goodness. But it made me think in a different vein. What about children who predecease their parents? Someone could write an article about Recovery for Parents After Their Child Dies. Does anyone want to read that? No? Well, it may be that recovery is the wrong word. The better word is indefinite. For many parents, the grief that follows lasts an indefinite period of time.

But I don’t even want to write about the death of a child or children or the recovery period of a parent. Instead, I want to write about what not to say to these parents.

For example, when people hear that my husband Ed and I lost our only two children to cancer they look at me and wonder aloud, “How does one overcome such tragedy?” I don’t reply since I don’t know. I haven’t overcome anything.

What often follows, despite the response, or lack of on my part, are conversations of unsolicited proposals about how to get on with life. And so folks will say,

  • Relax
  • Join a bereavement group
  • Go to a shrink
  • Visit Italy
  • Go back to school
  • Go back to work
  • Play golf
  • Take an antidepressant
  • Keep busy

I don’t presume to know how others react to these proposals. My personal reaction? . . .  I continue to work hard to remain quiet. I want to look as if nothing’s changed for me, to appear as I once was and to smile though my pain festers inside.

Here, also, are some other things not to say to bereaved parents4:

  • “Your child is in a better place. You should be happy about that.”
  • “I know just how you feel. Our pet died this year.”
  • “It’s time to put this all behind you. No one wants to be with folks who are always feeling sorry for themselves.”
  • “Why don’t you have another child next year so you can put what’s happened behind you?”
  • We have to hold our family gathering at your house or it just won’t be the same. You need to stay busy.”
  • “The holidays are a time for rejoicing and giving thanks for what we have. Don’t spoil it for everyone else. Let’s pretend this never happened.”
  • “What do you mean you don’t want to decorate your home for Christmas? We’re coming over and will do it. That will put you in the holiday mood.”
  • “I know you like shopping—let’s go out together, I have so many people I have to buy presents for.”

Many years later, my head finally said ‘time-out’, and I listened to a bit of advice not asked for but given anyway. I joined a bereavement group. Ed and I differ on how we handle our losses; no less pain, just different, and I went to the meeting alone.

There were about ten of us in the group including parents who lost a son that past week, another two who lost a son twelve years before, the rest with their losses in-between, sons and daughters of varying ages. We told our stories. Everybody cried. And nobody told me how to overcome.

That night, among those mothers and fathers, I recognized, once more, that numbers really don’t count. We have lost our children, whether one child or several, and in the process, we lost a piece of our inner selves. We have been changed irrevocably, in ways that more fortunate parents haven’t whether that change is noticeable or not.

And I recognized something else that night: the need to remember that human beings are individuals. Those of us in the bereavement group have suffered through a horrific happening, or happenings as the case may be, something that we never expected and that nature, I believe, hadn’t intended: the death of children before their parents.

Although we have our losses in common, we handle our pain in distinct ways. Some of us can’t stop crying. Some of us keep it all inside. Well, yes, we’re individuals! We’re separate spirits! No news there: we’re similar in some ways, different in others. And every one of us needs to be reminded of that from time to time.

So I smile because that’s who I am. I’m feisty. I’m in control—most of the time. I accept that I don’t handle certain situations well but I do my best. I’ve lost my children and suffer my pain my way, because that’s who I am.

Which brings me back to conversations on life and situations that speak to grief.  To that end, it’s perfectly all right to say, “I’m sorry for your loss.” And then, let it go.

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Editor: Edwin C. Goldstein

 *There is a plethora of support groups available for anyone interested. This is not to suggest support groups offer answers for everyone or even partial resolutions for some. But for those who are interested, the Internet affords many examples of bereavement websites including the following:

  •  www.compassionatefriends.org . Grief support after the death of a child.

1) Personal Health. September 27, 2016.

2) J Fam Psychol. 2008 Apr; 22(2): 203–211.

3)  Klass, 1999; Rubin, 1993.

4) CompassionateFriends.org

 

 

 

 
Editor: Edwin C. Goldstein

NAVIGATING CANCER: A Lay Person’s View

Posted By on October 1, 2016

 

images10Cancer! What a word. The sound of it alone shivers the soul. Although every major illness creates the same reaction, I am most familiar with cancer. I know its nightmare best.

I am a medical sociologist who has lost two children to cancer: Valerie at 9 and Stacy at 37. I have endured the illnesses side by side with my children although I do not presume to have the education or the knowledge that a physician has. I do know, however, that whether it is a relative, a friend or an acquaintance, the person newly diagnosed often finds that the information about the causes, the treatment and the side effects appear labyrinthine.

And because the illness is complex and because there are so many different types , I’m going to reduce the data a bit so that, hopefully, the most significant pieces stand out. Please take the following under advisement, think about it and then use it as you’d like.

At the start, when seeing a board-certified oncologist and/or hematologist for the first time or the umpteenth time, the most important thing you can do is to bring along someone you trust to the appointment. In other words, you need a proxy: a husband or wife, a parent, some relative or close friend. The proxy role in the medical interaction, of course, is not new; most parents have been proxies for their sick children just as many adult children or spouses have acted as proxies for their infirm parents or mates.

And so, after that medical appointment, bounce all that information you received back and forth between you and the proxy. Make sure you understand it, that you both heard the same thing.

If you still don’t understand something—or anything—ask the oncologist and/or hematologist again. Take notes, then go online to a reputable site (I have offered, further down on this post, some websites to look at) if you have a computer; if you don’t, go to the library. Ask away until you know what he or she is talking about.

Those of you who have been newly diagnosed with cancer may decide to think it through first before deciding which treatment is best. Take your time.

Since we want all the medical information possible before making any decisions, I offer below, a condensed checklist from the 9th Annual Cancer Guide for the Newly Diagnosed*. The questions are fairly inclusive and they don’t have to be asked all at once. Some of them don’t even have to be asked. It’s your decision. You pick and choose.

The Checklist:

·    What is the goal of the treatment? Is it curative? Will it extend life? Will it help with the symptoms of cancer? What are the chances that the treatment will work? How will doctors determine if a treatment is working?

·    If the treatment does not work, are there other options?

·    What are the potential risks and side effects of the treatment offered? How do side effects of this treatment compare with side effects of other treatments?

·    How will the treatment be given, how often and for how long?

·    Are there ways to prepare for treatment and decrease the chance of side effects?

·    Will daily activities be restricted in any way? Diet? Work? Exercise? Sexual activities?

·    Are there any clinical trials to consider?

·    How much will the treatment cost? Will it be covered by insurance? (some oral cancer medications are not covered by insurance although the government is trying to correct that).

·    After treatment, what are the chances of being cured, in remission or relieved of symptoms?

Each of the above questions should be weighed carefully: the positives, the negatives and the risks versus the benefits.

Some Reliable Resources:

·    National Cancer Institute: www.cancer.gov

·    Memorial Sloan Kettering Cancer Center: mskcc.org/cancer-care/treatments/symptom-management/integrative-medicine

·    American Cancer Society: cancer.org/AboutUs/HowWeHelpYou/rumors-myths-and-truths

·    American Society of Clinical Oncology: cancer.net/sites/cancer.net/files/myths_and_facts_about_cancer_fact_sheet.pdf

Many emotions come with a cancer diagnosis. Cancer requires not only an oncologist/hematologist who is medically well-qualified but requires, as well, someone who will listen and respond to your concerns, both physical and emotional (please see my post from 5/02/2016, Grand Rounds: The Parent’s Side). Do not be shy or reluctant to make your needs clear.

Be good to yourself. Since cancer survivors are growing in large numbers, treating yourself with thoughtfulness and diligence are as important as treating the cancer itself.

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Editor: Edwin C. Goldstein

*CURE Magazine in Association with the American Cancer Society: 9th Annual Cancer Guide Newly Diagnosed. 2016. p. 39.

 

MY FAITH MY WAY

Posted By on September 1, 2016

10068882[1]My husband Ed and I along with most of our extended family and friends will celebrate the beginning of the Jewish New Year, Rosh Hashanah, with dinner at our home. On the eve of the holiday, we will light yahrzeit candles in memory of our loved ones who have died. I will also recite one of the few Jewish prayers I remember from Hebrew School. I’ll cry and Ed will hold my hand tight. It is always hard for both of us.

And so, once again I am compelled to reexamine my faith, or lack of it. And when I do, I think back to one of our younger daughter’s many hospital stays throughout her six-year battle with cancer.

Valerie had been hospitalized at Babies and Children’s Hospital in New York City, this time after surgery to remove her right lung because of metastatic bone cancer. The procedure left our bouncy little eight-year-old pain-ridden and cranky. Her eating habits were always poor but this latest assault to her body suppressed what slight appetite remained. So, when she wanted Oreos, I raced to the hospital cafeteria—Oreos by choice, though any cookie would do—nutrition be damned.

In a rush to return to Val, with cookies in hand, I took a shortcut. And, as often happens with shortcuts, this one turned into a drawn-out route through the main lobby of the hospital. On that accidental tour, I passed the hospital’s chapel.

A weary-looking woman, her sweater stretched tight over a very pregnant belly, was walking through the doorway. Never noticing the chapel before, I slowed down and peeked in. The chapel lights, turned low, cast a hazy, quiet authority over the interior and urged me to consider, anew, all things theological.

Brought up as an Orthodox Jew, I had attended Hebrew School at a conservative synagogue in Connecticut to prepare for my Bat Mitzvah, the ceremony symbolizing religious responsibility for a thirteen-year-old Jewish girl. I rebelled when I was twelve and began to torture my father with an infinite number of complaints delivered in a whiny voice. He gave in before long and I was allowed to quit. No Hebrew School, no Bat Mitzvah.

I cracked a bit of Dad’s heart with that decision but it healed quickly. He loved me too much. Yet, whenever Bat Mitzvahs were mentioned, he’d look at me and shake his head from side to side, the religious slight bringing a sad smile to his face.

While not confirmed as a Bat Mitzvah, I held a fixed belief in God: my father’s God; the God of the bible stories that I read incessantly as a child; and the God who answered all my prayers—if my father or my older brother Stan didn’t answer them first. Naïve? Perhaps.

My immediate family, close-knit but small, included my grandmother who lived in the apartment across the hall from us. Her daughter Edna, my mother, had died at 40 when I was nine years old. I do not remember her. It was my father, my older brother Stan and Granny who doted on and nurtured me throughout my growing years.

When he was twenty-six, however, Stan was critically injured in a car accident, and remained unconscious in a New York hospital until his death six hours later. I prayed. Oh, how I prayed for his recovery but although Dad and I were at Stan’s bedside throughout his ordeal, he never awakened. My brother was unable to hear our last parting words of love. That night I lost my best friend.

Belief-altering? Oh yes. Stan’s death did that. And so, in a meteoric turn around, the believer within me vanished and I withdrew from anything based on faith. Instead, my secular values rose to the surface as did my ample supply of optimism and tolerance.

As time passed, despite a persistent uneasiness about my religious views, I came to trust in the best part of the individual. Multiplied by the vast numbers of humankind, the essential quality of goodness affirmed the core of our humanity. Reality sometimes denies this, I know, but I tend to ignore that.

At any rate, confidence in the individual essence held sway over my father’s omnipotent, unknowable God. To me, that God, supposedly benevolent, often appeared to lack mercy. When questioned, Dad and others with a religious bent responded to personal and worldwide horrors with a sigh and the explanation, “It is God’s will.”

I had never been able to grasp the concept behind that statement. A doctrine about individually controlled human behavior made more sense to me. I understood that.

By and by, in searching for further details to structure my earthly opinions, I came across the Hebrew concept of Tzedakah, a charitable conviction that includes a variety of practices, such as giving aid and money for those in need or simply offering a smile or a courtesy. It’s an obligation that rests on rich and poor alike and requires respect for everyone. Thus, we give of ourselves and get back from others. Or not. In any event, it is a good formula to live by.

Years later, with Valerie seriously ill, I still tried to be helpful to others, to be as humane as possible and to give what I could, when I could. But after Val’s lung surgery, I found myself calling for—praying to?—someone, something, to deliver my daughter from her dreadful illness. Divine intervention? My father’s God? Fine. I simply needed it done.

And like a wartime soldier alone in a dank and dirty foxhole, the disbeliever in me stepped back, just a little, just in case, and left open the possibility of a tender force hovering above and around. Help, however, did not arrive.

We lost Valerie to bone cancer when she was nine and our surviving child Stacy died at thirty-seven after a twelve-year battle with breast cancer.

If asked soon after, I would have replied that my position on religion had hardened even further. As it turned out much later, it had only altered somewhat. Times change, beliefs bend and thoughts become carefully, if minimally, modified.

Today, I recognize that I am clearly in doubt about an omnipotent being watching over us. Yet no doubt exists in my mind that my husband and I will be together someday with our daughters and all of our loved ones. I also know that Dad is watching me from above in every instance religious or otherwise. Is that spiritual? Or is it my personal history and Jewish tradition coming to the fore?

The Hebrew concept of Tzedakah, the prayers recited on the holidays, the special yahrzeit candles lit in memory of Stacy and Valerie and our other loved ones, the dinners with our family celebrating the Jewish holidays, and my effort to ensure that they all do happen—a need I am somehow unable to resist—connects me to a faith that remains embedded in my psyche. I am comfortable with that.

I am curious, however, about that pregnant woman in the chapel; and my thoughts shift back to that day, not for the first time. I have wondered about her over the years as the questions continue to pop up one by one. Who had she been visiting? Her sick child? A young relative? Did she have strong religious beliefs? What were they? Did those beliefs help her through the tough times? Or was the chapel merely a calm spot in a chaotic universe?

I should have asked her back then.

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Editor: Edwin C. Goldstein

Suzann B. Goldstein is co-founder along with her husband Ed of THE VALERIE FUND, a nonprofit organization that supports comprehensive health care for children with cancer and blood disorders throughout New Jersey, New York City and the Philadelphia area. Suzann and Ed endowed and renamed The Rutgers University Cancer Institute of New Jersey’s breast cancer center, the STACY GOLDSTEIN BREAST CANCER CENTER. Suzann has her Master of Arts degree in medical sociology from Rutgers, The State University of New Jersey. She is a freelance writer and poet and has written a yet-unpublished memoir, WHY ME? One Mother’s Story. Suzann can be contacted through her blog www.unexpectedlives.com or her website www.suzannbgoldstein.com.