”I can’t tell you how demoralizing it is to be helpless when somebody you love is suffering. It’s tremendously emasculating because the biggest problem you want to solve, you can’t, so every day is an experience of failure.”
Aaron Gell, quoting Laura Hillenbrand’s husband in “Chronic Fatigue Syndrome: A Celebrated Author’s Untold Tale,”
“Are you crazy?” asked Thelma, my future mother-in-law. “You’re 20 years old. A baby!” She glared at me with the same intense, big brown eyes that drew me to her son. Except that Steve was sweet and conciliatory and Thelma was in-your-face. “And you,” she turned to Steve. “You think you’ll finish law school? How can you possibly afford this?”
I sat next to Steve on one side of the dining table in my parent’s home. On a second side sat my parents, and on a third, Steve’s. I was a junior at Douglass College; Steve was in his first year at Rutgers law school. We met when I was a freshman and he was a junior at Rutgers, and had just decided we wanted to get married that summer. Our parents had called this pow-wow to discourage us. We needed to face reality. Wait, they insisted.
“Hot pants,” insisted Steve’s dad. “Hot pants. That’s what this is all about.
“Jack,” said Thelma, trying to suppress her husband’s crudeness, as well as her own smile. “Look,” she continued. “Do you know what expenses are involved? Where can you afford to live? Do you know the cost of food today? Do you know what meat costs? Bread? And what about Steve’s favorite cookies?” Thelma’s pantry always stacked packages of Keebler’s Vienna Fingers. “Where are you going to get the money to live on if you’re both in school?”
I can’t remember what my parents said, probably because they didn’t say much of anything, while Thelma, a busty Sophie Tucker look-alike, clearly dominated the session, with Jack declaring “hot pants” whenever Thelma took a breath. Jack Lefelt was a bald happy guy, who worked as a pressman for the New York Times and strutted through life like Damon Runyon’s Nathan Detroit. I knew that Jack was devoted to Thelma, and could see the same strength of commitment in Steve.
Yes, we were young and penniless but we patiently explained that married-student housing at Rutgers was cheap, and that we could manage financially if our parents just kept paying our tuition and if my parents gave us the money they would have spent on room and board. We each had some savings, and I would start working right after I graduated, so this arrangement would only be for one year.
We overpowered them.
We were married on August 31, 1963. We could afford no honeymoon. We spent our wedding night in a cheap Howard Johnson’s motel, our car packed with mops and sponges and scouring pads. We had only a day or two to clean the one bedroom Quonset hut with the kerosene heater we’d rented for less than $50 a month from Rutgers Student Housing before classes started. The next morning we ate our HJ pancakes as I beamed and kept admiring my gold wedding band, certain that the other diners knew I was now “a Mrs.” Awesome.
Being a married student was fun and special but housekeeping was a mystery. I was an English major who read books and wrote essays on literary symbols. Once I bought a duck at the supermarket and stuck it into our small gas oven at 350 degrees. That night we dined on duck fat. Another time, in a hurry after a late class, I pulled the laundry out of the dryer in the basement in one of the Douglass dorms and stuffed it into a laundry bag, which I then plopped on the back seat of our old Ford (which we called Prometheus).
On the way home, I smelled something like burning rubber, so I stopped at a garage, but the attendant couldn’t find anything wrong with the car. When I arrived at our Quonset hut, I dumped the laundry out of the bag and discovered that the metal on my bras had been hot enough to burn enormous charred holes in all our underwear.
We weathered a year’s separation while Steve was in Viet Nam and two colicky baby boys 22 months apart, who grew into two rambunctious, toddlers and then vengeful rivals chasing each other through the house with fireplace pokers and wooden blocks. We waited many long hours in emergency rooms for treatment for bleeding heads, broken bones, wasp bites and even a barbed fishhook caught in a knee.
On August 31, 2013 we will be married 50 years.
I have been ill for the last 14.
I was so right about Steve’s love and loyalty. Without complaint, he has driven me wherever I needed to go. He has pushed my wheelchair through malls and museums and over strange sidewalks. He has read about and supported all my strange treatments. He has helped relieve so many of my family burdens. Most importantly, he has massaged my feet.
But neither of us was prepared to survive the bombardment of illness, and as Chronic Fatigue Syndrome infiltrated our marriage, we have struggled to restore peace and friendship and passion, not always so successfully. While still working as a judge on the New Jersey Appellate Court, Steve once complained, “Before you got sick, when I came home from work I felt like I was walking into a sanctuary following the turmoil and stress of my day. Now I almost dread walking through the door.”
I understood. He was right. I was a sorry mess, unable to shake myself away from the one focus of my illness. I lost my sense of humor and barely talked about anything else, moaning in a boat on Cocytus, the river of wailing, where the newly dead who lacked the coin to pay Charon to ferry them across to Hades were condemned to wander for one hundred years. I was newly dead but couldn’t stop breathing. And Steve, worried sick that he had lost the me he had married, was desperate to make things better without a clue how. Like most men, I think, he didn’t want to talk; he needed to act. “What can I do?” he’d constantly ask. “Just tell me what I can do.”
I so appreciated his taking off from work to drive me to doctors and helping me to figure out how to adhere to certain treatment protocols, but I wanted him to listen to my doubts and fears and daily laments. His silence and body language were clear: “doing” isn’t passive. He refused to face and couldn’t cope with his once independent, busy and self-sufficient wife turning into this ultra needy and miserable zombie.
When I complained about a new symptom, he turned away in silence.
And so I felt immensely alone. Without parents or siblings to care and support me emotionally, I needed more than a ‘doer.’ Friends were wonderful, but I couldn’t burden them with tales from my constant panic and depression. Of course I knew that I shouldn’t burden Steve either, but thoughts of death had become my one consolation and I was sure I was on the verge of insanity. Though I spoke to therapists, I wasn’t getting the comfort I needed from a loved one. I was alone all day, and in the evenings, Steve just wanted to watch The NewsHour, prepare for the next day’s trial, and go to bed.
As he didn’t want to hear about my woes, Steve also didn’t want to talk about his. “You want me to pour out my feelings. I can’t. I just can’t. That’s not how I am.” Since I’d known him, Steve’s usual reaction to stress or worry or even to anger had been to clam up, to withdraw. I knew to wait and he’d eventually recover his good humor without grudges or complaining. But now he solidified into the strong, silent male cliché, the sea creature that snaps closed when touched. And here I was, touching and touching and touching.
Complicating and making everything worse was the lack of a diagnosis. Many CFS sufferers have the same experience: test results are negative. CBC is perfect; no MS, Lupus, Myasthenia Gravis, Parkinsons, Guillain-Barre, or other auto-immune diseases, no Parkinsons, no Leukemia. Care-givers like Steve start to believe what most doctors believed then and many still believe today: this crap is all in her head. And so resentment (unconscious, perhaps, but deep and real) takes root and propagates like a thorny weed. She must be doing this on purpose!
Struggling with these awful feelings, Steve finally faced the enormity of the change in our marriage and sought help from a therapist. Grumbling, he’d leave the house to sit in the shrink’s chair once a week. I never asked what went on, but once in a while he’d complain, “We sit and stare at each other. I wish he’d just ask me a question. It’s all so fucking awkward.”
Though he didn’t like it one bit, strangely enough, he persevered. And slowly he shared some insights. “I feel like I’m the one getting lost here. Everything is about you and your illness. I understand how you must be suffering, but I need some diversions. I have to think about myself too.” Hmm. I wasn’t sure I liked this therapist. But he also confided, “You know, he says to me, why would she want to do this to herself? What does she have to gain? And he’s right. I can’t answer that.”
And so a dialogue opened between us. We started talking about Steve’s needs, and gradually he became more willing to let me talk. He learned to respond with typical shrinky phrases (“That must be very difficult for you”) instead of insisting, “Well, what do you want me to do about that? I wish you wouldn’t tell me these things if there’s nothing I can actually do.” That made a difference. I needed to be heard and he was listening.
One result of the “I have needs too” theme is Steve’s adventure trips. I hate them but grudgingly accept their importance. The first summer when he rafted down the Colorado River through the Grand Canyon, I sat at my neighbor Nancy’s kitchen table and cried each day for the whole week. “I’m sick, I’m alone, this is too hard for me, I can’t reach him by phone, I don’t know if he’s ok, I get more scared and more stressed and so I get sicker, I can’t sleep, how can he do this to me?” Nancy held my hand. “I know, I know.”
“You have to understand,” he explained when he returned, tanned and happy, “that I need this in order to be there for you. When I do something a little dangerous, I forget everything else and just concentrate on where I place the paddle so I don’t fall out of the boat and into the rapids. It’s a total escape and I feel ready and able to cope again.”
Okay. Though the image of a tumble into the rapids freaked me out, that made some sense. So he goes on these trips which I no longer dread. He’s hiked in Utah, ridden horses in The Grand Tetons, and dug for archeological artifacts in New Mexico. He summited Mt. Rainer, trekked up and down Mt. Kilimanjaro and The Inca Trail to Machu Picchu, and safaried in Tanzania. For four years he’s also taken sailing lessons with two judge pals at Wooden Boat School in Brooklin, Maine.
Full disclosure: I still feel lonely and abandoned and sorry for myself. I am utterly jealous of his energy and of his ability to enjoy himself so thoroughly without me. I want to go to Africa too. I want to experience the beauty of a surprise waterfall on a hike, the serenity of a smooth sail in sunsparkled waters. I know it’s hard for Steve to return from one of these adventures, high on comraderie, the beauty of mountains and snow, and the challenge of arduous tasks, to face my somewhat less-than-enthusiastic presence; it is equally hard for me to hear his happy stories. But I get over it. I accept and have never again freaked out like that first time.
It helps that we’ve been able to take some trips together. Cruises work for me: I can get around on foot on the boat and enjoy day excursions with my wheelchair when I feel strong enough. In 2011, I made it to our friends’ son’s wedding in France where Steve guided my wheelchair through the chateaus of Fontainbleau and Versailles, in and out of the art galleries of Barbizon and over dirt paths by the Seine. We spend four winter months each year in Tucson and if I’m stuck inside, at least the views are beautiful and I can commune with the saguaros and coyotes. How long I’ll be able to manage such travel, I don’t know. I fear a time is coming soon when the fatigue and pain will settle into a daily slush that prevents such exertion.
I still feel somewhat cut off from the world, but I care and talk about things that matter to Steve: politics, the economy, movies and tv and, of course, Rutgers football. My sense of humor makes frequent appearances and some mornings I’m even chirpy.
But I still can fall back into the depths of a crash too frequently. One big difference between us has proved a strong help to me. I’m a regretter: Why did I push myself?! I must be a self-destructive fool. Oh me, oh my. Steve’s a never-look-back-er. Though he slides into a funk when I crash for more than a day or two, he will not blame me. “Do what you can when you can,” he invariably insists. “Stop blaming yourself. You felt well enough and that’s good.”
Steve no longer sees the shrink. He’s like, “Ok. Been there. Done that. I know what I have to do. I just have to do it.” But even though it sounds as if he’s got it all figured out, he knows we’re in the midst of a long process, with some days more challenging than I can describe interrupting more frequently than we can cope with.
An important truth: We still feel the close bond that was cemented during that one lonely, frightening year he spent as an officer in Viet Nam, 1966-1976, a year that traumatized us enough to teach us the value of our relationship.
After flying back to New Jersey from Fort Lewis in Tacoma, Washington, where we had been based for almost a year, I started our separation working for a PhD in English at Rutgers, but never felt connected to most of the other students who were into the whole competitive scene, vying for grades and attention and more sophisticated and complex literary analysis. I loved my courses and excelled, but felt isolated and different, empty inside. It didn’t help that so many of my peers were protesting the war.
One cold winter morning, I dropped a bag containing a carton of soda bottles that crashed and splintered at my feet as I carried groceries into my garden apartment. I stood still momentarily, staring at the sticky soda and glass shards, overwhelmed with missing Steve and worrying about the mortar attacks on his base in Long Binh and the snipers on the road to Saigon. Then I sat down on the front steps and wailed.
Steve wrote me every single day. A few months before his return, I flew to Hawaii for a week to meet him for R & R, rest and relaxation. We barely left our hotel room on Maui. I came home pregnant. . .and ecstatic that he would return to me soon. Never, we vowed, would we get caught up in stupid silly stuff, as long as we could be together.
We had no clue what we’d be in for.
- Find more of ‘A Chronic Fatigue Syndrome Chronicle’ here.