Arriving at Claire and Martin’s home on a sunny winter morning, I walk up a wooden ramp to their front door. At my knock, the door flies open. “Welcome, come in!” cries Claire. She’s animated, vigilant. Martin sits behind her in a wheelchair, his face colorless, his gray eyes turned inward. “Hello,” he says, nodding briefly. It’s our first meeting of a two-day, intensive session.
This couple has been married for 27 years. For 20 of them, multiple sclerosis (MS) has been a constant presence. MS is a disease that eats away at the protective membrane of the brain, slowly shutting down muscle function and other bodily processes. You get around on a walking stick for a while, and then discover you need a walker. Soon, the walker can’t support you, and finally, you find yourself using a motorized wheelchair, as Martin had been for the past six years.
We enter a sunlit, comfortable living room with an aqua velveteen couch, two wing chairs, and an abstract painting covering most of one wall. Intuitively, I choose a corner for our work, one with a lamp shining brightly over a big, bushy plant. As we move the chairs into place and sit across from each other, I feel the tension in the air.
“Can we shut off this light?” snaps Claire. “I hate it.”
Almost imperceptibly, Martin’s face tightens. Then he turns to me. “When I got this dieffenbachia,” he says, looking at the plant, “it was just two straggly leaves. I’ve nursed it for two years into this beauty.”
Before I can respond, Claire says, “I wish I got the attention this plant’s been getting.” Martin looks away.
As we talk more, I find out that this disconnection has plagued them from the beginning, long before MS knocked at their door. Before getting married, they took a trip to France and Italy, and Claire suggested that they keep journals of their journey. One evening two years later, as they sat up in bed reading, she said, “How about we read our journals out loud? Just one entry, from the same day.” Martin agreed.
Claire flipped through her journal at random and found an entry from a day they spent in Rome. She read pages and pages of angst: Is he right for me? Will he talk? He hasn’t looked at me all day! Does he love me? Shall I marry him? Does he find me pretty?
Martin skimmed his pages until found the same date. He read: The Vatican. HUGE!
And here we have it: the woman riddled with angst, with many, many words; the man closed-off, monosyllabic. And then, as time passes and MS enters the room, the pattern intensifies. Her angst swells into frustration, bitterness. His silence twists into fear, hesitancy, numbness.
I begin my journey and I ask Claire and Martin the question I always pose: “What is your wildest dream for your relationship? Your deepest aspiration?”
“I dream of shared physical pleasure,” Martin begins after a brief silence. “When I could reach out and hug her, I didn’t even think about it,” he says, struggling to compose himself. “I took it all for granted.” Then he hangs his head and weeps.
When his sobs subside, I ask, “Would you be willing to go inside and find out more about your desire?” He nods. I guide him to close his eyes and visualize, in his innermost being, the pleasures of sexual intimacy. He breathes deeply, and after a moment, his face fully relaxes: “Yes, that would be so nice.” He looks radiant, open. I see that he’s a handsome man.
Suddenly, his eyes narrow. His hands tremble in his lap. I ask, “Who just showed up?” With a bit of guidance from me, Martin names this part of him: the Scared-Uptight-Silent-Boy. “Oh yeah, I know this boy,” he says. “He’s been there for a long time.”
I ask, “What would you like to tell him?” He’s silent for a moment then says, “I need to say to this scared boy, ‘It’s okay. You don’t need to get panicky.’” He breathes deeply, waiting for more. “And I need to say to myself, ‘It’s okay. You deserve this pleasure.’” He opens his eyes and sits up straighter in his chair. “Yes! What I dream about is to embrace the state of physical pleasure that I just experienced.” He grins boyishly. “I felt calm. I felt whole. I felt self-assured. Now, I feel open to all possibilities with Claire.” He steals a look at her. She’s gazing at him, listening, present.
I ask Martin, “What’s the image you have of this physical pleasure?” He blushes. I suggest, “Whisper it in Claire’s ear.” He does, his mouth grazing her lobe. She blushes, too. They chuckle, sharing some delicious, private moment.
Now it’s Claire’s turn to share her dream. But before she can speak, she’s hijacked. Her body goes stiff and her expression turns angry and sour. And I ask, “Who just showed up?”
“I know this sour-faced, angry lady,” says Claire. “I think I’ll call her...Matilda the Martyr.
”I say, “Tell us about her.”
Claire grimaces. “Matilda steps and fetches all the time, every hour of every day—never gets a break,” she says between clenched teeth. “She does everything, all by herself, and she’s goddam furious. And guilty. And sad. She’s...lost her life.”
As I listen to Claire, I see the constant, grinding work of the caregiver. I’ve read up on MS, so I know a little bit about what it entails. I see Claire using small flex balls to massage Martin’s hurting neck, dispensing multiple medications, making blender meals to aid swallowing, giving attention to the increasingly complex bowel movements.
And for me, a story begins to emerge. I share it with them: “Once upon a time, a passionate and vibrant young woman met a soulful young man. They laughed and shared secrets and made wonderful love. But unbeknownst to them, a seed of disconnection had already been planted in their relationship. Twenty-seven years later, with MS in the picture, this seed had grown and mutated into something painful. Their relationship doesn’t belong to them anymore. They get hijacked by Matilda the Martyr and the Scared-Uptight-Silent-Boy. The more Claire becomes hostage to Matilda, the more Martin gets commandeered by the Scared Boy, which further triggers Matilda, and so on. It’s become a dance of survival, and neither of you wants to continue it. That’s why the three of us are here today.”
Suddenly, Claire exclaims, “I know my dream! It’s for the MS to go away.”
I glance at Martin, fearful that he’ll shut down. Instead, he turns his wheelchair toward her and says, “Yes! He’s an uninvited guest, an intruder who won’t leave, no matter how much we try to push him out the door.” They look at each other with understanding, complicity. She grips the arms of her wing chair and drags it closer to him. Her hand reaches for his knee. Together, they begin to cry.
After a few minutes, I ask, “What’s happening for each of you?”
Slowly, Claire says, “I feel how we share this. Neither of us wants it. But it’s here. Here for both of us.”
Martin muses, “Maybe we can just be here together, being sad together.” He hesitates, and then plunges in. “Maybe we can show each other our helplessness.”
Then and there, they make a decision: they’ll use this corner of the living room, where the plant grew from two scraggly leaves to this flourishing bush, to spend time together, sharing their sadness. “With the lamp off,” Claire adds lightly.
On a personal level, I know that couples need this deep unity to welcome and honor the uninvited guests who show up in all of our lives. I know it in my bones. Twenty-one years ago, I was diagnosed with breast cancer. My husband, Yumi, held my hand in a way I didn’t even know a hand could be held. He named the event Rallying Round the Boob, and he called our circle of supporters the Boob Brigade. We had an international Boob Brigade. My husband and I cried sometimes, but we also laughed together, even in the midst of our fear and pain.
Years later, depression knocked at Yumi’s door. It was serious, this visitor. I decided to marry the fragile, agitated man he was, hovering at the edge of life and death. Several months later, when Yumi was admitted to a hospital psychiatric unit, I crawled into bed with him. The nurse came in. “Who is the patient here?” she asked, her tone reproving. “I see two heads under the blanket.”
A teenager who was also a patient in the unit wondered aloud, “Did you guys just start dating, or what?”
But now it’s day two of my time with Claire and Martin, and we’re sitting in the late afternoon light. They’ve nearly completed their journey, during which I’ve witnessed many magical moments of connection.
Claire exclaims, “Today, the MS is gone! It’s the most exhilarating feeling. We laughed together over nothing, we cried together. For one whole day, the MS just walked out the door.”
Martin adds, “He’ll come back, no doubt. He’s pretty clueless—can’t take a hint. But the kind of connection we’ve experienced today is...well, it’s an act of transcendence.” His face, and even his body, looks confident, deeply alive.
Claire’s face has lost its tight lines; she’s radiant. “You’re my brave man,” she says tenderly.
He says, “You’re the one who brought me here.”
I don’t know whether to cheer or bow. I do both.
This blog is excerpted from "The Uninvited Guest" by Hedy Schleifer. The full version is available in the May/June 2016 issue, Unexpected Gifts: Six Master Therapists Recall Their Most Unforgettable Sessions.
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