In Locked Embrace

This article first appeared in the March/April 1996 issue.

NOT UNTIL MY ARM IS better,” 34-year-old Claudia snaps angrily for the fifth time in our initial session. Her husband, Vince, reacts as before, glancing away with a barely perceptible wince. Her right arm hangs flacidly at her side, her puffy, blue-fingered hand inert in her lap. A stroke two years ago left her with a hitched gait and broken, telegraphic speech, but her attention is transfixed by the paralyzed limb. During our conversation, she insists she won’t drive or do housework without full use of the arm. Returning to work, she now argues, is also out of the question until the arm is “normal.” Moments later, when I ask her about starting to socialize again with her friends, she cuts me off angrily. “Not until my arm is better.” I know that no doctor has told her that the arm will recover. In fact, several have ruled out any further improvement. She refuses to accept it. “I wait for my arm to get better,” she says fiercely. “I want my arm back!” As long as the arm is motionless, she seems to say with frustrating stubbornness, her life will also remain at a standstill.

Vince stirs and attempts a gentle appeal. “No one here is saying that your arm is not going to improve. But maybe you can try to be more active in the meantime.” Claudia says nothing and looks sullen. I wait for Vince to continue, but he looks away in resignation. When I ask them to describe a typical day at home, Vince replies slowly, “I have to work a lot and our three kids go to school. Claudia stays home. We haven’t gone out much since her stroke. We see relatives sometimes, but pretty much stay to ourselves.” Since the stroke, Vince does virtually all the housework, cooking, grocery shopping and child-ferrying. And the children have learned that they cannot ask Mommy for much help with homework or to take them shopping for clothes until she is “better.” The whole family sounds captive to Claudia’s waiting game.

I had first heard of Claudia a few weeks before, when her speech therapist, Diane, grabbed me in the corridor of the rehabilitation hospital to tell me about the “problem” outpatient case she had. Claudia spent most of their speech therapy sessions tearfully talking about her wish that she were dead, Diane related, but she vehemently resisted a psychotherapy referral. Under great duress from both her physician and her husband, Claudia had gone once to the hospital’s consulting psychiatrist, but had refused to see him again or to take the antidepressants he’d prescribed, insisting there was nothing wrong with her. Going to a psychotherapist now would be tantamount to admitting that she’s depressed, which, in turn, might open the floodgates to a vast reservoir of unacceptable grief and sadness. In this standoff, Diane was becoming as defeated and frustrated as Vince by Claudia’s refusal to budge.

I could understand Diane’s feeling of being stuck; it mirrored Claudia’s own desperate paralysis, her inability to move backward or forward either to become miraculously healed and exactly as she had been before, or accept her infirmity and the fact that she would be forever different than she had been. Keeping herself stuck provided Claudia with a provocative edge. When others attempted to get her to take steps toward adapting to her medical condition, she seemed only to dig her heels in further. I commended Diane for keeping her own anxiety in check enough to bear up under Claudia’s well-exercised need to ventilate. I also suggested she very gently broach the subject of inviting me to one of their sessions.

Physical losses of the sort Claudia experienced create daunting psychological challenges. As a psychotherapist working with people in these situations, my aim is to promote, in therapy, a sense of both containment and hope to use therapy as an unshakable vessel moving through rough seas. I hope to help patients feel that they can safely experience and ride out the frightening emotions that arise without being thrown into despair, while they learn that there can be life after disability. Once these clients experience more confidence, we work together to find meaningful answers for the “why” of what’s happened to them and the “how” of rebuilding their lives. It may take months or even a year, but most people eventually gain a foothold on firmer ground, and make the transition from frightened invalidism to fledgling self-reliance. Even working with the most severely and tragically disabled, I never cease being amazed by just how buoyant the human spirit is.

A small minority of rehab patients like Claudia, however, become more deeply mired in distress in the first two years following their injury. It is not that they are less strong than those who do well; they are, in some ways, stronger. Like Claudia and her husband, whom Diane described as a hard-working, blue-collar couple devoted to sports and family, they are usually upstanding people who’ve always believed that they can control their own destinies if only they apply themselves with the right effort. Frequently, these individuals have successfully handled previous medical crises by toughing it out without complaint until the trouble passed. When permanent disability occurs, they regard it as an affront, an insult to their pride and their right to self-determination. Any notion of accepting physical loss is rejected as a despicable act of surrender.

Instead, these survivors devote their considerable emotional strength to beating back concerned doctors and therapists, their ferocious attachment to a dream of recovered health and autonomy making them even more dependent and demanding of those around them. The therapeutic task with such patients is not so much containing strong emotions as uncovering the grief necessary to propel them toward accepting who they now are. Simply engaging them in this work is half the battle. The other half is working closely with their families, who, out of mixed anxiety, loyalty and guilt, often inadvertently reinforce the disabled person’s posture of determined helplessness.

ABOUT TWO WEEKS AFTER DIANE asked for my help, Vince was arrested for drunk driving. Suddenly, filled with concern about Vince, Claudia is not just willing but anxious to talk with me as long as her husband attends all the sessions. Diane arranges the initial meeting with me. When they arrive at my office, Claudia walks rapidly past me despite her stiff, disjointed gait. She has the fixed, strained smile of someone feeling both pressured and apprehensive. Vince has a tired, rumpled look and loose-limbed slouch. During the first session, he does most of the talking for both of them, in a low, plodding voice.

Vince appeals to me as a sort of comrade-in-arms, as do many caregiving spouses with whom I’ve worked, by saying directly, “How can we get Claudia to do more?” At other times, he raises his eyebrows and looks helplessly at me as if to ask, “What are we going to do with her?” When Claudia fumes at him for treating her like the culprit in their troubles, he withdraws into a deeper slouch.

In order to rebalance these mutually reinforcing interactions Claudia’s anger, Vince’s helpless defeatism I ask him to tell me in detail all he’s given up in his own life because of Claudia’s disability. He hesitantly begins telling me about his exhaustion at work, the never-ending round of chores at home, the total disappearance of any social life with his friends. I then wonder aloud about whether all those sacrifices are really necessary. But before he has a chance to answer, Claudia barks at me, “There’s nothing wrong with our marriage!” Vince withdraws in silence. They both resist the idea when I suggest that perhaps Vince is doing too much at the expense of allowing Claudia to do more.

Each effort I make to evoke their sadness about what has happened to them is beaten back. At every suggestion that this must have been a terrible blow, Vince shakes his head slowly and tells me, “What’s done is done. It can’t be helped. I just want to work on a better future.” Claudia is more aggressive. Every question I ask about how she now regards her life she deflects by insisting that she is waiting for her arm to improve before thinking about her life at all. It feels as if she is angrily hitting me over the head with the withered limb, saying, in effect, “Just try living with this, buddy, before you ask any more of your expert questions.”

With my every move blocked, I know I’m in the presence of what family therapist Peggy Penn calls the “binding interactions” of families dealing with chronic illness what I’ve come to think of as a locked embrace. On the one hand, Claudia clings to her husband and kids, demanding their constant attention and care, in order to feel less vulnerable and helpless; controlling them and their interactions with her seems to give her a fleeting sense of being in control of something. At the same time, she bristles at any encouragement from the family to do more for herself, as if their hesitant suggestions were betrayals of her and a refusal to fully understand or empathize with her predicament. She reacts as if they were giving up on her and her hopes for her future. They, in turn, feel guilty for trying to nudge her into more independence, as if they are being insensitive by pushing her too hard, and end up protecting her even more. In the meantime, by selflessly caring for her, they too divert themselves from their own painful grief and mourning.

When the individual’s need to cling meets the family’s protective clasp, the result is a locked embrace forming a cohesive system of family interactions that shields everyone from exposure to the devastating feelings associated with the physical or cognitive loss. Unfortunately, this mutual-protection game can be a greater impediment to rebuilding productive lives after medical catastrophe than the disabilities themselves. So Vince plays the dutiful, long-suffering parent to Claudia, who is forced, if she wants any affection and nurturing at all, to play the pitiful, wounded child. While these narrow roles may have thus far kept them from being emotionally overwhelmed by the losses they’ve endured, they are imposing limits on them that are choking off their lives and their marriage.

My plan, over the next several sessions, was to disrupt Claudia and Vince’s rigid pattern of interactions, and to slowly unlock what I’m sure was their underlying grief. To appeal to her belief that she can control what happens to her, I praised Claudia for not succumbing to her injury. I then urged Vince to turn the responsibility for many of the household chores back over to Claudia. Wearily, they both agree.

The plan seems to take hold for a week or two, with a notable increase in Claudia’s activity level and a brightening of her mood. But three weeks later, she is back in the office and back to square one, complaining that she can’t do the things that Vince is asking of her until her arm gets better: He must do the chores, she insists stubbornly. I’m puzzled, wondering whether we’ve moved too fast. Then Claudia breaks into my rumination by announcing that since talking won’t revitalize her arm, she has decided not to come back for any more sessions. When I ask her to reconsider, she refuses. “Even if Claudia doesn’t join us, would you like to meet with me yourself to talk further about the situation the two of you are in?” I ask Vince. To my surprise, he agrees.

HE ARRIVES FOR OUR NEXT session wearing the same worn jeans and old sweatshirt and regards me with steady, somber eyes, waiting for me to guide the conversation. “I appreciate the fact that you’ve come in today so we can talk about how to improve matters at home. It must not have been easy to come without Claudia,” I say.

“We need the help. It’s been rough,” he replies quietly. His directness reveals that he wasn’t fully speaking his mind in front of Claudia. “Tell me how rough it’s been,” I suggest. He leans back, looking exhausted.

He relates again all he’s had to do since Claudia’s stroke: working the night shift so he can be home to take the kids to and from school; cooking, cleaning, laundry; comforting Claudia during her frequent rages and crying jags. He’s only sleeping three hours a night. “I think I’m wearing clown, but I have to find a way to keep going,” he tells me.

“With all you’ve been doing, it’s a wonder you’ve kept up this long. Why can’t you let up?” I ask.

He reacts defensively. “I’m her husband and I have to take care of her.”

“I know what you mean,” I reply, “but if you burn out, you won’t be able to.”

He is quiet for a moment, then says doggedly, “I need to keep going to make sure she’s all right.”

“Are you concerned she won’t be all right?”

He pauses again. “She was a 32-year-old, healthy woman who had a bad stroke. That’s not supposed to happen. None of the doctors could give us a good reason why it happened.”

“Do you have ideas about why it happened?”

“I don’t know.” He pauses for a long time before mumbling, “Maybe stress.”

I have a sense that we’re inching up on something important. “What sort of stress?” I ask.

He averts his eyes. “I don’t know,” he says. “We used to fight a lot. Maybe that had something to do with it.”

“That’s not usually what causes a stroke. Sometimes it just happens without anything in particular causing it,” I say too quickly, trying to relieve his self-blame. I think for a moment. “Are you trying to keep her from having another stroke now by doing everything for her so she won’t have any stress?”

“I want her to do more, but not if it’s going to be too much for her,” he answers. “I don’t really know what’s too much for her.”

“And if something else happened to her, you might feel it’s your fault. Is that right?”

“I guess that could be right,” he says slowly.

I tell him that I appreciate what a tough bind he’s in wearing out because of all he’s taken on, but afraid he’ll lose her unless he protects her from stress. But the only direction out of this dilemma, I tell him, is forward that is, if he backs off from some of the family responsibility Claudia will come forward to do more. I assure him that she can safely do so without jeopardizing herself and may also become less depressed and angry once she realizes that her family needs her again, that she is necessary to their welfare. I suggest that he choose one household chore to give up, then tell her how tired he is and that he really needs her to handle it for awhile. If she balks, he should emphasize that he needs her to do it for him, so he can manage better. Vince takes all this in blankly before saying, “I don’t know. I’m not sure she’ll go for it. But we’ll see.”

These types of family dynamics contain two important components: tragic bargaining and magical bargaining. Tragic bargaining brings to mind the old cigarette ad line, “I’d rather fight than switch.” Patients and their loved ones sometimes would rather be angry than feel sad about changes that illness has brought upon them. It manifests in a kind of unspoken, implicit compact the disabled person and his or her family make with the powers that be, based on the premise that if they take a resolutely aggressive, oppositional, uncompromising stance toward the illness and every adaptation it requires, then it will somehow be vanquished. Sometimes this fighting stance is expressed within the family; instead of realistically thinking and talking about what the impact of the condition is likely to be on all of them, family members argue endlessly among themselves about what brought on the condition, which specialists should or should not be called in, how the patient should be treated, who is being the most or the least helpful.

Claudia and Vince direct their anger outward, at the health care team members, whom they accuse of being negative, incompetent and just plain wrong. What makes the bargain “tragic” is that many patients wind up pushing away the very people who could help them because it would mean admitting that their old, pre-disability selves were, in effect, dead. For the therapist, the key to handling tragic bargaining is refusing to be pushed away by the repelling forces of patients dead-set against any compromise. The first hurdle for me was to quell the self-doubts Claudia and Vince raised in me. By maintaining contact with the family and awaiting an opening to help them shift from hostile engagement to more empathic joining, I hope to help them eventually replace their anger with the transformative experience of sadness.

Magical bargaining is the adhesive force that keeps the family clinging together in a collective folie of shared superstition and irrational beliefs about how to deal with the disability. When confronted with the evidence of impermanence and vulnerability brought on by physical loss, all families seek some way of gaining a handle on fate, of mustering some action or idea that gives them a sense of control, which often takes the form of a bargaining ploy “If we do or feel this, then that will happen.” So they bargain, “If he takes his medication exactly as prescribed and does his exercises religiously, then he will surely recover fully.” Or, often as likely, “If we don’t allow ourselves to feel sad, then this terrible event will have a happy ending after all.” Even when their expectations are not panning out, most families I’ve seen are still loathe to relinquish those beliefs.

In truth, there is something about the medical treatment of physical illness that supports this quasi-logic. As health care team members, we trace as best we can the connections between disease and symptom, symptom and treatment, treatment and outcome, using all the scientific evidence available, but there are still gaping holes in our knowledge that we bridge with prudent guesswork and plausible belief. This is especially true in rehab, where many commonplace physical, cognitive and psychological treatments lack empirical scientific evidence and much of the emphasis is on intangibles such as will power and family support. Little wonder that our patients and their families are receptive to the seductive power of magical bargains.

Claudia and Vince have a number of magical beliefs. “If I keep Claudia protected from stress, then she won’t have another stroke,” Vince seems to believe, along with, “If I do everything at home, then Claudia won’t feel stressed” and, “If Claudia doesn’t have another stroke, then I will have fulfilled my duties as her husband.” Claudia’s magical bargain can be boiled down to, “If my arm gets better, then all will be back to normal.” The corollaries seem to be, “If I maintain my will that the arm will return, then my arm will get better,” and “If I avoid activities that might be difficult for me, then I can better maintain my will.” Taken together, these beliefs are mutually reinforcing: Claudia can’t avoid difficult activities without depending upon Vince’s protection, so she demands more services from him; Vince can’t prevent stress if he challenges Claudia’s will, so he capitulates. That’s why they are locked into a pattern that resists alteration.

With some families, the beliefs can be directly challenged through logical persuasion. With others, I try to end-run around them by eliciting those emotions that the bargains serve to contain. Occasionally, I may use paradox to exaggerate their power for instance, prescribing that the patient act even more dependently so that families rebelliously shove them off on their own. When these approaches evoke tragic bargaining, then I can only shift the beliefs slowly, through prescribing tasks designed to expose family members to contradictory evidence, to create more flexibility in the family’s functioning. In this case, if I could somehow help Claudia take up the reins of wife and mother that she has abandoned, she and Vince would both have tangible, daily evidence for the fact that life continues even in the face of disability. But cracking superstitions can be a painful process. What I’ve seen again and again is that as the family moves out from under the weight of its magical bargains, strong emotions long-feared and submerged begin to arise.

DURING THE NEXT SEVERAL sessions with Vince, he reports some progress at home. Each week, he asks Claudia to take on one additional chore and after the expected initial reaction of vociferous griping, she has always risen to the occasion and complied. But Vince seems, if anything, more despondent. I am not sure if he is feeling increased anxiety about Claudia or if he is simply pessimistic about whether these recent changes will have lasting effects. Either way, he seems ill at ease, vague, out of his element.

I ask him repeatedly about how he is getting his needs met in the marriage. “My needs?” he says with perplexity. “You mean like what I want? It’s hard to think about those things now.” But I don’t let him off the hook. I make him focus on what his dreams once were for the marriage and ask him to measure how much of what he desired he is getting now. Do he and Claudia have any fun together? Does Claudia ever cook for him, show him any affection? How is their sex life? What plans for the future have they had to postpone? What do they talk about? Do they talk to each other at all? He largely avoids answering the questions directly, shrugging them off. To my repeated suggestions that he ask Claudia for what he needs, he looks at me dumbly, as if I were speaking a foreign tongue.

He arrives for our fifth session in terrible shape, looking shaken, heavy lids shielding his bloodshot eyes. “How are you?” I ask. His voice is, if possible, even tighter and lower than usual. I lean close to hear him and smell the alcohol on his breath. “She made me very angry this week,” he says. “Our 7-year-old daughter needed someone to go with her to get some materials she needed for a project at school. I was working overtime that day and couldn’t be home until the next morning. My daughter asked Claudia, but Claudia said no she wouldn’t even walk over to the store. My daughter pleaded, but she just said no over and over.” He pauses and then begins talking louder. “It’s one thing for her to say no to me, but this is for the kids. When I heard about it yesterday, I blew up. I told her she wasn’t the only person in the family with needs, that she had a responsibility to her daughter. She was furious and started yelling back at me, saying I didn’t understand, I didn’t know what she was going through. And then, all of a sudden, we both started crying. I don’t know what happened. We must have cried for 20 minutes.” When they finished crying, Claudia and Vince spent the next four hours talking about everything that had gone on in the family since the stroke. They hadn’t talked like that for years, says Vince, perhaps ever. One part of the conversation hit him hard. “She asked me what happened the night she had the stroke, how I found her, what I did,” he says. “I never knew that she had no memory of it. It hit me then that we hadn’t ever talked about it, not once since the stroke happened. We avoided it for that long.” He stops, still looking incredulous.

I’m floored that they’ve broken through the silence. “It must have been great to finally talk openly and pour out what was in your heart,” I say.

“Yeah, it was nice,” he replies, though his flat tone and drained facial expression belie it. I ponder this in confusion momentarily, then ask him, “Well, what’s the matter?” He gazes at me without speaking, as if levelling an accusation. “Something seems to be wrong,” I say. “It’s just that I’m feeling very depressed,” he says in a low, confessional voice. “Like, our not talking for so long kept some of the feelings away and now they’re hitting me all at once.” He stops for a long minute to keep himself from crying. “Our whole life got screwed up by that stroke,” he says raggedly. “Everything we had built together for years just disappeared. I just can’t take it right now.”

I tell him that I can understand how devastating this has all been and what an exhausting struggle he’s been waging. But I add that as bleak and terrible as things seem now, I think he and Claudia are finally on the road to better days. “You and Claudia have been through hell,” I say, “but at least now, by feeling the hell and talking about it to each other, yon can actually begin to pass through it. That’s better than being in the stalemated limbo in which you and she have been stuck for the past two years.”

I saw Vince twice more after that. He was still facing overpowering sadness he took off work for several days and just sat around the house but his mood had lightened appreciably, and he seemed more open to the possibility that he and Claudia might have a future after all. Both were cooperating more around the house; he was continuing to let go of chores he had taken on after she had had her stroke, and she was picking up the slack in order to help him, she made it clear.

Not long after these improvements began, I was contacted by the state agency that funded Claudia’s psychotherapy. They informed me that having recently become aware that she had not been attending sessions, they would not pay for therapy for Vince alone. After discussing this situation with Vince, he asked her if she’d be willing to rejoin us. She still said no. As a consequence, he and I had only one more session before we had to terminate. He told me that, while things are far from perfect at home, they’re going better and he believed that he could handle it from here. Although his words expressed a certain reservation, he looked less hangdog, more confident and optimistic than I’d ever seen him.

When 1 call him six months later, he reports that matters have continued to improve. Claudia is now driving and taking more charge of the kids. Vince has begun to bowl regularly and gets together with friends to watch the ball-games. Not that Vince and Claudia have completely transcended their tragedy and achieved a state of marital beatitude. Claudia still holds tenaciously to the hope of regaining the use of her arm, and continues to verbally blast any doctors who challenge her. Vince still is not fully reconciled to the reality of a different kind of marriage than they’d had before the stroke. And yet, the sudden flood of sadness and grief that the couple finally allowed to wash over them has led to changes that have made the family’s life more satisfying than it was. The physical loss and the limitations it imposes upon them still comprise a heavy burden. But letting themselves recognize, accept and grieve that loss, even if incompletely, has loosened their locked embrace, allowing them to move and breathe a little more freely.