When we schlepped to the city yet again for Elliot’s umpteenth round of chemo and the results of his latest CT scan, we got good news for a change. The second set of drugs seemed to have gotten the tumors under control. This was something to celebrate. We had a fight instead.
Our bickering started after I checked the clinic’s public computer in the fourth floor waiting room. There was an email from Alex’s baseball coach announcing an 8:00 a.m. practice the next day when school would be closed for Good Friday.
“That’s ridiculous,” Elliot snapped when I told him. “Practice on a holiday? That’s so intrusive. If you have to take Alex to baseball how can we have breakfast together?”
“It’s not such a big deal,” I said. “You don’t have to go anywhere. I’ll just drop him off and come back.”
“These Montclair parents have no boundaries,” he said as we walked down the hallway toward the infusion unit. “They compete to do more and more and more for their kids’ relentless activities and never leave any free time to relax or go to a museum, or God forbid spend any time as grownups.”
My jaw clenched. The unit smelled like an odd mix of an old lady’s perfume, someone’s leftover tuna fish sandwich and the ammonia used to sterilize the floors. A receptionist ushered us into a small room with two big olive green BarcaLoungers for patients. Elliot groaned when he saw this room had no windows. He always insisted that a chair with a view was essential to his sanity. A heavy-set, weary-looking guy in there already was hooked up to an IV, trying to doze.
My stomach was knotted with tension, as if a spool of wire in my gut were getting pulled tighter and tighter. What days I worked, what we ate, when we ate, when we went to bed, where we could go on vacation, everything was defined by Elliot’s medical needs. I couldn’t stand to hear him complain about one of the few things that revolved around my son. An energetic ten-year-old, Alex was on two baseball teams. He adored the sport, wanted to get better, and had to play on the second spring team if he wanted a spot in the summer league.
“Being on two teams is too much,” Elliot insisted as he rolled up a sleeve to get ready for the nurse. “It’s taking over our life. Devon’s got her riding on Sundays so the whole weekend’s booked before it even starts. I drag my sorry ass into the city every day for work or doctors’ appointments. After all that I deserve some freedom on the weekends.”
“We hardly see all of Alex’s games,” I said.
The poor guy in the chair next to us was pretending to be asleep. These quarters were way too close for such a personal dispute, but I was tired of always being the accommodator, smoothing over every bump.
I wished we had a laptop. At home we argued by email, even when we were in the same room, because I never wanted the kids to hear us fight. A verbal fire hose, Elliot would start pouring out his legal brief and I couldn’t get in a word, so I’d sit at the computer and pound out a response. Then he’d say “my turn,” push his way into the computer chair and bang out a reply. We’d carry on like this, taking turns at the keyboard, until we petered out. Sometimes we simmered overnight, but by lunch the next day, it would be over.
“Truce,” one of us would email.
“Okay,” the other would answer.
Inside the clinic we did not have the benefit of such high-tech mediation.
“You write all these stories about overscheduled kids and then you go and overschedule yours,” Elliot argued.
“Chemo can’t be the main thing on the calendar!” I spat back.
Elliot was the one who taught Alex the joy of baseball. It had become their deepest bond. So now, after Elliot created this little baseball nut, he was trying to limit his ability to participate? I didn’t relish the idea of driving Alex back and forth to an 8:00 a.m. practice either, but it wasn’t that big a deal. What I really wanted to do was skip our usual long lazy vacation day breakfast and go to the gym. Between work, chemo, all the household chores and the kids, I never got any exercise anymore. My big indulgence was a once-a-month book club meeting, and sometimes Elliot gave me a sad puppy face when I gathered up my keys for that. As much as I loved feeling so important to him, his dependency could be imprisoning. He had always been clingy, but this illness had intensified his neediness and even made it legitimate.
My mother bear claws were getting ready to strike, just as they did whenever I felt my kids’ best interests under attack. Devon and Alex deserved to have passions outside the house and needed their healthy distractions, especially with all this cancer business going on. They would be little only once. I couldn’t put their lives on hold until Elliot’s situation “got resolved.” That was my euphemism, at least in public or with the kids. Got resolved.
This whole conflict hurt so much because I longed for my kids to love Elliot. I didn’t want them to think of him as the killjoy who came into our lives and said no to the fun things they cared about. What if they secretly wished him gone so they could do as they pleased and have me all to themselves? Then they would be consumed by guilt when he died, as if their wishes had made it happen. I could understand the desire for such freedom. There were times when I thought about how much easier my life would be when all this was over. So much sadder, but easier.
I was fuming silently about all this when a trim, pretty blond nurse with a peppy ponytail pulled aside the cubicle’s sliding door and started to go through Elliot’s chart.
“How are we today?” she chirped.
You don’t want to know, I thought to myself. Elliot was trying to relax in his big soft BarcaLounger. I was balancing on the little hardwood chair squeezed in there for the patient’s hand-holder. The cubicle was so cramped I had our jackets and his knapsack in my lap. I stewed about this too. The clinic’s brochures all talked about how the caregiver needs support, but my chair was too rigid, upright and angular to be comfortable. While Elliot could nap for the hour or two of this infusion, I had to keep shifting positions. I couldn’t help resenting the fact that nobody cared if I got any rest. I was the one who would drive us back through rush hour, who would have to make dinner while Elliot was sleeping, who had to make sure the kids got their tests signed and dentist appointments booked and presents ready for the next bar mitzvahs. These chemo trips ate up the whole day, what with waiting for the blood test results, the doctor, the drugs to be mixed and an infusion room to open up. And it was like that every two weeks. Of course it could be much worse. Elliot could be even sicker. Or he could be a child. But for the moment I wanted to flip the finger at such perspective and rage.
“So Mr. Pinsley, do you have any nausea or diarrhea?” the petite nurse asked as she filled out the routine questionnaire on symptoms. “Any tingling? Numbness? Mouth sores?”
“What about irritability,” I burst out. “Why don’t you ever ask about that?”
The nurse was taken aback. I didn’t care.
“And why don’t you ever ask how I am? Why is everything always about the patient? What about the exhausted family who has to take care of him?”
Somebody else’s IV monitor beeped with urgency.
“I’ll be right back,” the nurse said as she scurried away, surely glad for a reason to flee. Elliot and I sat in tight-lipped silence.
The nurse returned a few minutes later to jab a needle into the port in his chest and get his IV started. She must have thought me such a shrew, giving my husband a hard time while poison pumped into his veins. My cheeks burned with anger and shame and disgust at my lost temper, but it’s impossible to go through so much stress, for so long, without ever fighting. Still I was haunted by the possibility of infinite regrets if something horrible should happen that very night. Would I want these to be our final hours together? That question, always present, put an awful lot of pressure on every single encounter.
What I was discovering, alas, was the strain of living each day as if it could be Elliot’s last. It puts a mountain of stress on a marriage, and a family, when one person’s needs are so intense and undeniable. There’s no balance to the negotiations that are an integral part of resolving the competing demands of normal, everyday life.
Elliot needed me. He needed me to drive him home, to make his food, to get his medicine from the drug store. He would need me in two days to unhook his IV. We would have to make up soon enough. This was too hard a road to travel without getting mad at each other sometimes, but it was even harder to go it alone.
And so, as I drove my drowsy husband back over the George Washington Bridge, I gave in, took the fall, apologized. I just couldn’t bear to let the quarrel drag out.
“I’m sorry, we’re both just too tired,” I said. He nodded, put his hand on my knee and closed his eyes to doze.
And the next morning I took Alex to baseball.
It wasn’t the last time this issue flared up. Any conflicts between us usually centered on who came first, my husband or my kids. I was stuck in the middle, torn between them, and I got tired of being the diplomat. Maybe if we’d been together longer we would have worked all this out already. We’d been married only six years when Elliot got sick. I read once it takes seven years for a stepfamily to feel like a unit. In some ways, his illness became a crucible. It amplified his needs and forced me to stand up for my kids when they deserved my time and attention. Maybe that’s the key to a good marriage—emerging from negotiations with respect instead of resentment. Maybe a marriage is like a muscle that you have to strain and flex and stretch to strengthen. If you just let it lie there, comfortable, it becomes lax and weak.
“Listen, first off, I love you and I love the kids,” Elliot wrote me after a similar dust-up. “One way or another, for all my occasional gruffness, I think you all know that. Or should. Second, among the unspoken issues in our life is the irrefutable reality that so many of the family-life/balance issues are things I went through with my three kids before. It doesn’t make me an expert, but it does make me a tad wearier, going through it again now, at fifty-six, with Devon and Alex, no less as I’m battling cancer and daily fatigue. That doesn’t mean they should be deprived of things that make them happy, things they like to do and should do. But maybe it should mean that you need to understand that my capacity to adjust to their often over-busy schedules and the concomitant late dinners, rushed breakfasts and the general sense that our life is a whirlwind of kid activities, is somewhat diminished…. I’m doing my best to accommodate, but frankly, I need things to be a little less scheduled and hectic, a little easier.”
“Okay,” I wrote back. “Truce.”
Time and again I gave in, probably more easily than I should have. But the guy with the cancer always had the trump card. Barring another unexpected catastrophe, my children and I were going to be together for a long time, longer than Elliot would be with us. I hated thinking about that, but it was the bitter truth. There would come a day, unfortunately, when I could do with my children whatever I wanted. For the time being, while Elliot was with us, I would make sure they had what they needed, but real balance would come only over the long haul. I could only hope that my children would learn to emulate my empathy rather than my tendency to submit.