Photo by Sarah Diniz Outeiro on Unsplash

(The following short story/episode was inspired by reading “The person in the disabled body: a perspective on culture and personhood from the margins” by Ma’ayan Agmon, Amalia Sa’ar, and Tal Araten-Bergman.)

“BUT HOW DO I get through to him? Can I get through to him?”

It pained Marina Voth just to ask the question. It felt as if she was keeping her husband at a distance, keeping him in the third person, not party to this information session. And he wasn’t in the room. This felt secret, almost wrong. She stared through the big window in Jeff Smith’s office. Dr. Smith had a wide panorama view of the occupants of the Smith Centre for the Disabled. Most of the users suffered some form of brain damage, most often because of car-pedestrian accidents.

Like Marina’s husband, Roman.

Roman had been crossing a street in Kensington Market in Toronto during a vacation when he got hit by a car. He was crossing to where Marina was standing, holding some delicious eclairs he had found at one of the stalls, when a taxi spun out of control while taking a turn too sharp and too fast. Marna screamed. Oh, she remembered that scream. The sound of life being taken away. It still reverberated in her head at night when everything else was quiet.

But Roman hadn’t died. Not in the sense that he stopped breathing. But he couldn’t understand, now, just what that death had cost her.

Dr. Smith smiled, but Marina felt the smile was strange, as if he were hiding something. He was a little man, fastidious, in light brown corduroy pants and nicely pressed blue and white plaid button-down shirt. Though he wasn’t physically imposing, he somehow gave the impression of talking at you from a great distance away. “No, no. Ah, I wouldn’t say for sure. You understand, these things are, ah, delicate, or, better, ah, complex,” Smith said. “The human brain is, ah, hmm, incredible.

Perhaps the distance is created by the involuntary stress of every fourth or fifth word, Marina thought wryly; she felt like he was answering some stock question that he’d gotten fairly often. But that didn’t matter. She was starting to feel a little violent.

“Well, is he doing well here? I mean…what good is it here, anyway?” Marina stared out at her husband. Every time, every time she looked at him pain sprang up in her heart. She missed the light caress and kiss when he’d come home from work, the joy that used to be in his face when he saw her. Not the blankness, the confusion, and hostility that she encountered now.

Marina had lost a partner.

“What can be done, Dr. Smith? What can I do?”

“Ahem, ah, well those are questions, ah, that should be directed to your attending physician, or the neurologist working, ah, on his case,” Smith replied. He ran his hands, seeming almost to be an involuntary action that was soon followed by running his hands through his hair, checking out his reflection in the window.

What’s to be done? What’s to be done! Tell me, damn it! Tell me…something. Marina felt herself crumpling inside like a piece of crushed linen. Her very breath threatened to draw the tears up from her gut. Swallowing, as if there were a pill to get rid of, she just stared in silence at Roman. At the other visitors.

Just that morning, while Marina had been doing the dishes, Roman had come and stood beside her. He said nothing; he didn’t move. There was a little smile on his face, but one eye, the left, seemed to be working hard to stay open. A Bruce Willis squint was in the works. Marina had smiled at him, hoping the smile was for her, but it was very difficult to tell just where Roman’s gaze was telling him to look, what was registering, or not, for him. After a few seconds, when he said nothing and made no other movement, she squeezed his hand and kept on unloading the glasses and bowls from the dishwasher, drying cutlery wish a towel. She had to turn away from Roman at that moment. She realized that there had exploded in her heart an anger that she might not be able to contain. Marina had desperately wanted Roman to offer to help, to bend down and pick up a fork or two, or open the cupboard door where they stacked the plates. When it became obvious that none of those were realistic expectations, she drowned, yet again, in all the little deaths brought on by the accident.

Marina hated the thought, but she didn’t know if she was ready for a lifetime of this, this appendage to her life that was no longer the shared journey she had envisioned. Where were children going to fit in this lonely, alienating world? How was she supposed to love someone who wasn’t loving her back? Or, even if he did still love her, he couldn’t show it. Not now.

Dr. Alvin, Roman’s family doctor, occasionally murmured that there were chances that the brain injury might change, that somehow it would resolve itself so that Roman might not be this silent, six-foot two-hundred pound jellyfish that had to be directed everywhere.

Dr. Smith seemed unable to understand the little bits of hope that they held out to Marina, who was just starting to realize that the majority of her anger was rooted in a grief that was going to overwhelm her if she couldn’t deal with it standing up.

“Help…” she whispered. Roman half-turned, but it was away from the window.

Dr. Smith was not sure what to say or do. He kept his hands close to the lapels of his white coat; it was a short journey from there to smoothing out his hair. He coughed several times.

“Help. I need…I really need help,” Marina said, again.

“Ah, well, yes. There are several groups, ah, you might think of, um, joining for support,” Dr. Smith said, though it looked as if he was addressing the silence around Marina rather than the woman herself. “One is especially for women, ah — I — I don’t know, ah, which one would help you.” Dr. Smith’s constantly moving hands fell into his lap. He stared at the top of his desk, and Marina got the sense that such an honest admission was out of character for the good doctor in this particular room.

Then his hands resumed their smoothing, his eyes directed at Roman Voth. Marina thought about trying to make the little man feel better, but she was too jaded now to think about his feelings. It helped her, now, that he’d finally said something honestly, without holding her at arms-length, though a quick glance at the doctor now told her she had resumed her original far distant position.

“I mean,” Marina said, no longer sure why she continued talking to him when he couldn’t give her what she needed, “that I miss my partner, the man I married. I miss being able to do things together that didn’t depend on me helping him into the bathroom, bathing a 34 year-old man. These — these…” She faltered, tears in her eyes. “These days,” she carried on, whispering, “are so empty. The house. It’s horrible. I’m all alone, with a man turned into a mannequin in his easy chair. I want something to interest him, to lighten the — the atmosphere. It’s so very, very heavy. Just heavy.” A tear rolled down her left cheek.

Roman had bent over, looking a little closer at something that was hidden from Marina’s view. Then, just as quickly, he resumed his standing position, vacant stare. Marina hoped he didn’t get angry here; she hoped he didn’t — what? Embarrass her?

She quickly softened; he couldn’t embarrass her. It wasn’t his fault that he got hit. But Roman wasn’t the one left holding the bag. Roman wasn’t the one who had to push through the darkness of being without a partner. Roman wasn’t getting much sleep at night; that was true. He had to be on some kind of sleep medication. But she wasn’t getting much sleep either, waking up a thousand times to check on him. As if he were a baby in her bed. The household chores were piling up around her. She shuddered thinking about the mess she had to go and deal with now as Roman was here, safe, being looked after.

Dr. Smith saw the shudder. “Ah, Marina. Are you, ah, cold?” He stood up, suddenly the very picture of action. Of course, there’s a desire for people to do something, anything when emotions get the better of people. “I can turn the temperature up in here.”

Marina stood, sadness etched all over her face. “No, doctor. Thank you.” She extended her hand. “I’m afraid there are things I should be doing right now.” Exhaustion fell over her like a heavy cape but she gamely thrust it aside. Without more ado, she went through the clear glass door.

On her way out, she stood on tiptoe to kiss Roman’s cheek, said good bye and that she’d be back soon. She wished she were excited about that.

Truth was, she didn’t want to come back, and that made her want to scream, too.

*********************************

Those of us who acquire disabilities later in life, by accident or disease, especially in the midst of familial and career relationships and responsibilities, sometimes neglect the pain that these events cause for our loved ones. Not every disability/impairment rocks the world, but most require significant shifts in mobility, child-care/dependent raising, work, etc. To say nothing at all about the stigma. Add to that the unawareness of the person dealing with the pain, with the loss…and dis/ability truly affects everyone. I want to sing the songs of these heroes, too, because those who stick it out are incredible human beings. Of course it isn’t always pretty, but I pray the gods take more of the ugly days away.

Former hairstylist, perpetual philosophy student, swallowed by poetry, writing, ideas