An impossible Choice

Wherever the action is, there you’ll find Soukaina. She spends her days strolling along the ward’s courtyard, observing life as it is lived by her fellow patients. Not yet 15 years old, she is always dressed in the same stained pair of pajamas; her feet drag along a pair of pink plastic slippers, and her hair is haphazardly covered by a disheveled headscarf. She makes her rounds at a steady pace, arms swaying heavily by her side, shyly looking around at her passers-by. She halts in the occasional doorway, quietly watching as other women are having coffee with their visitors. Then she moves on to investigate what’s going on at the end of the hallway there, where her doctor is conversing with an anonymous face. She makes a u-turn, stopping briefly to poke her head inside the nurses’ office, then fixes her attention on what the gardeners are doing to the bed of roses in the courtyard. She finally ends her tour by settling down beside the group of women seated on a bench, basking in the morning sun.

Soukaina always maintains a bit of distance. She does not like to be touched; any well-intentioned attempt to shake her hand, or make an offering of candy, invites a subtle dance of evasive shifts and shakes of the head. Soukaina has a voice, but prefers to parcel out her words in great moderation; any verbal overture is shyly answered with a quick and tiny smile. At every Thursday morning ijtima’, Soukaina’s doctor performs the ritual of trying to coax out a phrase or two. “Kif bqiti?” she’ll ask, her voice sweet as honey – how have you been? Each week, these questions hang suspended in the air, lonely and heavy with awkwardness, until a few other patients decide to speak up on Soukaina’s behalf. “Oh, the other day she was so chatty!” they’ll say. “Soukaina loves to talk with me, we were laughing and crying together all afternoon!”

***

Soukaina has been on the ward for as long as I can remember. She was there when I first arrived in November and has been a stable presence ever since, quietly strolling through the corridor as other patients come and go around her – like a fixed point of light within a changing image. Over the course of these long months she and I have made slow but steady progress in the buildup of a communicative routine. By January she began to return my greetings with a smile; by February she developed the habit of sitting down beside me as I wrote up my notes, occasionally stretching out a cautious but pioneering finger to get a physical impression of my notebook. By March she began to ask me for the time – always a rapid whisper, barely audible, but words nonetheless! – and by April, she took to following me as I made my own rounds across the ward.

It was around this time that Soukaina was briefly discharged. Her absence did not last long, however; she had spent not four weeks at home with her family before she returned to the hospital and once again took up residence in her old room, as though nothing had ever changed.

Yet something had changed.

I had always thought of Soukaina as an empty notebook; as a set of pages without a story. Beyond the smiles, her eyes were blank – an infinite whiteness that led me to see Soukaina as a moving body without emotions, a conscious mind without thoughts.

This new, re-hospitalized Soukaina remained mute, but now the light seemed to have been turned on behind her eyes. The blankness of before had made way for images, for bright colors in broad brush strokes. I saw an abstract painting, now; a palimpsest of stories each racing out to envelop the beholder.

For a few days, the entire ward reveled in what we thought of as a very pleasant change in Soukaina. Her smiles had become broader, her voice more solid, and her eye-contact more eager. Real communication had begun to seem like a possibility.

Then, from one day to the next, the smiles disappeared. I arrived on the ward one Monday morning to find her sobbing in the courtyard. She saw me as I entered, ran over, and grabbed my hands. For the next three hours, she refused to let go. She dragged me along as she walked restlessly through the corridors, drawn mostly toward the exits – as though she was waiting for someone, or something. The stories in her eyes had become jarring, glaring, frightening in their blackness.

Apparently it had been this way all weekend. “Meskina,” the nurses sighed. “The poor thing – she’s suffering from horrible anxieties and hallucinations.” Whatever had turned on the light behind Soukaina’s eyes had also unleashed something sinister – a monster seemed to have emerged from the shadowy recesses of her mind and now haunted her without reprieve.

Whatever it was, it had exhausted Soukaina’s small body; whenever I managed to sit her down for a moment, her head would begin to loll with the heaviness of sleep, her entire body heaving in yawns of primordial force. Yet she refused to lie down in her bed for a nap, no matter how sweetly our coaxing – and how potent the sleeping pill she’d been made to swallow. It seemed that circling around the ward was Soukaina’s only source of comfort at the moment.

As she pulled me along, I tried to ask her what the matter was. “Yak la bas?” What’s wrong? And Soukaina would simply look at me, a heart-wrenching urgency in her eyes. Her mouth would move, but the sounds remained stuck in her throat. Breathing heavily with the weight of anxiety, she simply pulled me closer, grabbing my forearms now, as the tears ran down her cheeks.

***

Soukaina has schizophrenia, but the autism she was born with has pushed the mute button on her suffering. She is haunted by terrifying delusions and hallucinations that she is unable to communicate to the outside world; she is imprisoned in the tower of her own mind, with a monster in her cell.

Soukaina had always been on Clozapine, a relatively old anti-psychotic drug usually prescribed only as a last resort for those who don’t respond to anything else – because while highly effective, Clozapine comes with a high risk of potentially life-threatening side effects. The drug had pulled a heavy blanket of sedation over what little communicative ability Soukaina had had. But at least, her doctor reminisces, it had gotten rid of the hallucinations - and it had left her calm, content, “gérable."

Soukaina’s parents, however, had not been satisfied. They remembered Soukaina as she had been before illness laid claim to her mind – peculiar, yes, but nevertheless talkative, receptive, capable even of going to school. Hoping for a better outcome, her parents had convinced Soukaina’s doctor to re-hospitalize her and try a new approach to treatment.

“But do you see what happens when you mess with something that works?” The doctor sighs. “All we’ve managed to do is de-stabilize the patient.” Hopefully, she adds, the parents will now realize that Clozapine really wasn’t all that bad.

***

What I find saddest of all about Soukaina’s story is that the doctor has a point. While it may be tempting – worthwhile, even – to dream of perfect cures, there are times or cases in which the reality of psychiatric treatment forces one into an impossible choice between two very imperfect options. While listening to the doctor talk, I had the urge to protest. Could “calm and manageable” ever be a desirable outcome for anyone, given the beauty and creativity that the human brain is capable of producing? Is it ever acceptable to accord someone a fate of diminished mental capacity, if the trade-off is a reprieve from psychiatric symptoms?

It isn’t. Yet I realize that this is not what the doctor is arguing for. She does not see “gérable” as the ideal end-result of Soukaina’s treatment. Not in the least. But in her capacity as a psychiatrist, she is nevertheless compelled to play the role of the realist. And the heart-wrenching reality of this situation quite simply is that Soukaina has to choose between freedom from hallucinations, and freedom of communication.