Steve
“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?”
‘Hot pants’ Steve’s Dad snorted at the idea of two students, Carol and Steve, marrying.
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.
Focusing on what’s lost is natural in any chronic illness, but it can drive loved ones away.. and threatened to do so for a time in Carol’s marriage.
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!
Carol’s marriage entered difficult terrain as ME/CFS threw up roadblocks that threatened to estrange them.
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.
Acknowledging and getting Steve’s needs for adventure travel met opened room for him for him in their relationship
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.
The regret at not being able to engage in a loved one’s activities is something many people with ME/CFS face
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.
Through Vietnam, children and almost 15 years of ME/CFS, Steve and Carol’s marriage has lasted over 50 years.
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.
Very touching story, so nice that you’ve been able to stick it out through “sickness” as well. Happy 50th!!!! Something here for many of us to learn.
Greg
Carol,
I so appreciate your writings. It takes a brave woman to expose her soul and do it with such grace and eloquence. When we expose ourselves to others, we never know how we may be received. But, there may be something that we say that may give another person the courage to continue on in their fight. Something that may allow someone to not feel so alone, in a body that daily gives us a list of unknowns and constant challenges.
Those of us that are married and have been for a long time (33 years for me), know how hard it can be on our spouse. We are having to live in our bodies and we know how we feel —but, the person looking on and not experiencing the internal turmoil can not possibly completely understand. It takes a very special person to accept what is totally beyond their control and not be able to fix it. When they said their “I DO’s”, even though it was for “better or worse”, we all go into it thinking “for better”. It takes a strong person to honor their vow of “for worse”. We knew when we found those “special mates”, we found a true gem. But, there are many others that did not. I feel especially sorry for those that did not find someone that would stick by them.
We all need the reminder to try to be “selfless”, and trying to realize the importance of allowing the special people in our lives to be able to continue on with their lives —when we had all intentions of continuing on with them. It’s not fair of us to hold them back, just because we, by no choice of our own, can’t go hike a trail or stand under a waterfall. I can live through the experiences of my husband – who tries his best to bring me into the experience even when I may not can physically be there. I can experience it through his eyes. If he wasn’t having the adventure – then I would not be having it either.
I think that sharing our lives with others, makes us all not feel so alone in whatever we may have to deal with. Thanks for sharing your life with us Carol! What a beautiful picture you paint. Happy 50th!
My personal goal is, when I take my last breath — is to have no regrets. I want to be able to say, I have done everything I wanted to do and have friends and family surrounding me that feel that I have taught them something of value.
I wrote something that I try to live by:
Don’t think about how it was before — that was yesterday. Look forward to tomorrow and think about what you can do “GREAT” today. We can’t undo or redo yesterday. We can live today, and we can DREAM for tomorrow.
Issie
Issie- You have the most inspirational post.
Thank you,
Carole
A very compelling story. You seem to be a born writer. Although, sometimes, I think it is a little easier to be a woman with this disease, than a man. Simply, because in many ways, more is expected of a man. Especially, when there is no diagnosis, no cause. A man can’t be neurotic. He can’t just break down and cry it out, like a woman. He is the “provider”!
It also seems you were very fortunate to have resources, which many of us, do not. Probably, more than anything, that is the most compelling and compounding factor, worrying about making ends meet.
Regardless, it is a horrible disease, no matter who you are. RP
Hi Rich, I get what you mean about how hard it would be to have this disease as a man. I have 3 children, two boys and a girl, and I can hardly bear the thought that one of them might have to deal with this. (I think there is a genetic predisposition in my family.) I used to worry more about my daughter since women are most likely to be sick, but as my sons get old enough to start families it begins to dawn on me more fully how hard it would be for them to provide for a family, or how devastated they would be if they were unable to work. I try not to worry though, because it won’t keep my kids from getting sick and will only make me worse. Best wishes to us all, this IS a horrible disease, no matter who you are.
Hi Rich,
Yes, I am fortunate to have the financial resources that allow me certain pleasures and activities, as well as the ability to sustain daily living. I didn’t become ill until I was 55 and able to retire with a pension and generous health benefits. For this, as well as the fact that I had already raised a family, I am grateful.
This cruel disease is made even crueler for ME/CFS sufferers with serious money problems brought on by their inability to work.
Carol
A true love story! 50 years is quite a milestone, CFS or not. My husband and I are halfway there. Many kudos to him, most of the past 17 years have been something of a nightmare for both of us. I love hearing examples of supportive family members, and wish we all could be so lucky.
Thank you Carol for your story. It is so nice to hear of the spouses who have been determined to hang in there. My husband and I have been married for 35 years and he has promised that he is in it for the long haul. That floors me sometimes, even though I am grateful and blessed. Why would anyone want to stay married to someone like me who is so sick and can only have a shell of an existence? I have to tell him all the time to stop talking because I am in sensory overload, I can no longer trust myself to drive, and I need help with all the household chores now. He runs all the errands and is sweet and kind enough to wash my hair for me. No illness is nice, but I think the ones that stick around for us with this nasty disease are braver than most. I feel for my friends that are alone. I would love to see an online chat or support group for our caregivers to give them an outlet. I am glad that your husband takes time to get away. I wish mine would, all caregivers need to have their own needs met and batteries recharged.
Congratulations on your husband. He gave his word and he’s kept it no matter what. It’s very inspiring…
The only problem is, I want to be the one that walks the mountains………
Carol, this is familiar to me as well. Ill at 30 and very active before that, my husband and I just had our first-born. I was a new mom of one year when “the flu” hit. My husband is a very independent person who can keep himself very busy and is creative beyond words. He likes his alone time…to a degree. It was very helpful that our business is on our acreage in a separate building so that meant that he was always around while our daughter was growing up – and I was struggling. Although he has never dwelled on the illness itself, it must have been horrifying to witness as things went from bad to worse. He also no longer wants to hear about it, 23 years later, although it is the biggest part of my world, writing and CFS community. So I do keep quiet about it and the CFS community fills that void for me.
It is harder now because he has more time and freedom and a little extra money to travel, but no partner to go with. This is heartbreaking for everyone.
We really need to find effective treatment. All our efforts should be on that.
He has always taken trips and motorbike rides whenever he has the chance. It was also very hard for me to get used to being left alone, especially when feeling helpless half the time. But somehow it works out and now I am confident I will survive these periods of aloneness.
But in the end, I wouldn’t mind a walk in the mountains myself.
Hi Valerie,
It really does help to hear how similar our spouses’ reactions have been. And I’m sure it would help if, as Cheryl has said above, these spouses could share their experiences and feelings. I’m not sure, however, that Steve would take advantage of such an opportunity anyway. He does, however, frequently surprise me, so who knows?
Carol
Thanks Carol, for sharing your chronicles. I believe all of us with ME/CFS go through similiar journeys….from trying to get diagnosed….to Dr. shopping….to trying any possible treatments in our quest for health….. then continously cycling through the various stages of grieving, coping, hoping and accepting.
BOTH my spouse and I are severely affected with this horrible illness….you can imagine the nightmare with BOTH of us unable to work and basically homebound. What does one do when you need your partner to be your caregiver….but now must try to be your own caregiver and also be your spouse’s with this debilitating illness?
Talk about a CFS marraige…..ours is indeed!
Thanks for responding, slp. I can’t imagine how you and your husband manage. I hope you have compassionate and helpful family and friends nearby, along with other kinds of resources.
All the best,
Carol
Carol- I hate to be the fly in the ointment here-but I do have a few questions.
!- Was your husbands Therapist a male or female?Did you go also?
2. If the situations were reversed, would you be taking these ESCAPES so you could talk or listen to your very ill spouse when you got back from vacation?
3. All caregivers need to get away and have space. His were Expeditions of monumental size.
4. You are much more forgiving than I would be , when you are the one suffering.
5.The fact that he would not listen or talk to you as sick as you were-was SELFISH.
6. The EXPLANATION ” This way I can come home to you and listen sounds like a 2 yr old.
7. If you are satisfied with this it is your life-as you may not have a choice.
8. I just know I would resent the Hell out of someone going on these Extreme Getaways
and not feeling any remorse. A fishing trip should suffice.
I applaud your patients with HIM.
MY BEST,
Carole
Dear Carole and the rest of you,
I was not so lucky. In fact, I think I have PTSD added to my CFS consequent to how my marriage ended. I was diagnosed in ’94 when our daughter was only 7. I was Nurse Manager of 2 SC Correctional Clinics, we had built our house while I was pregnant and brand-new at my job. We moved into it when Erin was 2 weeks old. At 6 weeks, I returned to work, a very demanding job but one I loved. My then-husband continued to throw all the load on me: child care, grocery shopping, house cleaning, paying the bills, and everything else. In 1997 we moved into the “mansion” that we’d contracted and built ourself. Our other house was just fine by me but I followed my husband’s (and everybody else’s) wishes. By summer of ’99 I could no longer put one foot or one thought in front of the other and was forced to quit my career. He KNEW I had CFS but it never concerned him. Just me. By early 2000 I discovered quite by accident that he’d hired an attorney and had the divorce all planned out. In SC “Mental Abuse” is not a ground for divorce so he set about driving me over the edge. He completely stopped talking to me even to this day He would repeatedly take our then 12 yo daughter under his arm and say to me: “WE don’t want you anymore”. I know I don’t need to tell any of you how this felt and how it only served to make me sicker. In August 2000 I was forced to move out of our house with the last shred of “me” left. He wanted sole custody of Erin even though I had been the one there for her always while he went fishing, hunting, etc. I can’t even bear to finish this…. it has forever affected my relationship with my daughter, now 27. I have been totally alone now for 13 years. To the person who thought that your husband was being too nice to you and too nice to himself…. you must not have a clue! The price some of us have paid for having a chronic illness that is not only out of our control but one that stress only worsens is too horrid to even find words for. Cudos to all of you spouses that have hung in despite it not being well and good. I wish I’d had someone even close to you all. marcie
Marcie- My heart breaks for you. I can’t imagine anyone treating another human being that way-particularly an ill spouse and then taking your daughter. I know this is easy for me to say-“But you are better off without him” I have found out from therapy that some people are not capable of responsibility and kindness, and if we keep expecting it from them we will constantly be disappointed.
I can only hope he is responsible for your medical costs.
If you are referring to me about not having a clue- I have been ill since 1996. My husband has had numerous serious accidents. Some because he will not listen to his Dr. or me. In 2009 alone he had 8 surgeries in 11 months . I had almost been in remission- then another accident fell off of the roof after a few beers.
broke both wrists, , shoulder, third concussion in a row, had to have hip replacement surgery 5 times. knee replacements. From that accident on I have gone down hill. Just started getting better a few months ago. I have paid my dues. I expect him to take care of me as I took care of him. He is a Professional with a PHD. Just having someone there is not always the answer-it has to be someone you can rely on at least part of the time. I am so sorry for your desertion-As I said in my post to Carol-He was selfish!!!
Do you have good medical care? Do you have a therapist you can talk to?
We have been married 37 years. Just in case, he does decide to flee the coop- I have enough set aside to take care of myself. I have 2 businesses
I own and I run-without his help. We have 5 children . One will help me.
Thank GOD. Carole
The disease itself is devastating enough, both physically and emotionally, but to have to cope with not just indifference but actual hostility from a spouse is beyond imagining. I hope you have supportive family and/or friends who help you cope.
All the best,
Carol
Wow, c’est article est fastidieux, ma soeur ces ces sortes de choses, si Je vais dire elle.
Marcie- Just to let you know. I think of you everyday and hope peace is with you when you need it most. You are a survivor -I can tell. Sometimes when you are sick, that may not seem like enough.
Please seek someone to talk to – non-judgemental counselor.
My Best
Carole
Thanks. This helped