How to talk about it: when their child is not okay

At lunch, I sat next to a man who talked about his son’s mental illness with the same openness and ease he’d just described his morning workout. Legs and a bit of cardio, schizophrenia and bipolar disorder.

It was the first time he met his friend after a long period of travelling, changing jobs, being apart. They’d kept in touch: there was this Facebook message they had read and enjoyed, and that text one of them forgot to answer to; a meme shared at one point that made both of them laugh.

They shared a connection, you could tell. Didn’t hold each other accountable for the time spent or not spent working on it, though. She didn’t expect him to write back and showed it. No- said it. It seemed theirs was the kind of relationship where things always came easy- as both of them chose to rid themselves of all the unnecessary fuss that comes with expectation, and made room for acceptance. For leaving things be. Not as good or bad, but just the way they were.

There was food before them, but there were no distractions. There was no sense of pressure, so it didn’t seem like he had to summon up any courage to put words together, up his trust, change his pace, or his tone when she brought up his kid. This was an open conversation with a friend, one about the daily runnings of life with a child who’ll never be okay.

There were good days and bad days, sure, and many days when he’d wished his son would fully recover. Be well. It wasn’t easy. They had to admit him a few months before. Brought him home on a Saturday, rushed him back to the hospital when he seized. It was difficult for many around them to understand- both the workings of their child’s brain, and what his parents did to cope; although they cared for him to the best of their abilities, they remained constrained by the limitations of medical knowledge and, at times, prejudice.

This world here, theirs and yours and mine, and the boy’s too, is a world that’s still intent on generating half-truths about mental health, fueling them with fear, stifling acceptance. Yet none of this could ever diminish the child’s humanity, his existence and presence in the life of those who love him and whom he loves back- although most of the time, he’d show it differently from the rest of the kids his age, and thus find himself on the margins of the social construct that we have wrongfully, and out of a place of fear and ignorance, come to perceive as ‘normal’.

She might not have asked anything about the kid if she felt it would bother him. I wouldn’t have heard any of it if he’d been ashamed to share. It felt, at first, like I was made privy to information that was not meant to reach my ears. You overhear someone’s going through a hard time, and you might be tempted to tune in, out of curiosity; or you might reach in your pocket for barriers and start untangling your earphones, stick them in, listen to a podcast.

We tune out others’ ailments out of habit. We call it courtesy, and defend strangers’ private spheres by shutting them out when the things they say are things we don’t want to hear. When it could spoil our lunch, or interfere with our own fantasies about the world we live in. The rest is easier to listen in on.

It’s uncomfortable for many to think of what makes others’ lives difficult, especially since we’ve been conditioned to seek gratification at the expense of reality. You’d rather have unpleasant information stick with the other, be kept private- and when it doesn’t, you shield your ears from it, turn up the volume to the thoughts you do want to hear. I guess we’re not simply selfish, but have become self-protective down to a fault. Our most-used devices prove it.

His friend could have held back, too, not bring it up; let him come to her if he wanted to open up- and if he didn’t, let it be. It’s not uncommon when we feel lost before the circumstances of others. But that would have made it worse. Checking in on a parent with a chronically ill child communicates support, and those who’ve gone through it cannot say it or show it enough: they want to hear from you, to feel they are seen and heard. You’ll never be a bother. What’s not easy, though, is knowing how to do it.

*

When she first asked, I’d already gone through the first part of lunch without reaching for my phone. It was a small achievement, and I busied myself with the contents of my soup bowl and the sauces on the table just to give my scrolling fingers a little something to do. Suddenly, achieving the perfect blend of condiments to pour over my rice noodles became irrelevant to my new set of circumstances, yielding centre-stage to the words I realized were about to be exchanged to my right.

How would she do it- talk about his son to him? I never knew the right way to show others that I really cared about their grief, their worries, their troubles. I never knew if I ever truly managed to communicate that I offered my support unequivocally. I have always worried that I left out bits of words they said, didn’t read enough into their silences, or perhaps read too much. Made assumptions. Judged.

I’m always anxious I’ll offend, with my face and its occasional frowns and curls that I sometimes feel I have no control of or control too much- and I never know how it looks, so I could try to change it. I worry about my arms, too, which I always consciously arrange in positions I’ve read show openness. I worry about my words, which might come out wrong.

I keep fearing that all of this shows- that all my mental flotsam can hardly be translated into anyone else’s treasure. Worst of all, I know that it always ends up being a distraction from actually listening.

It seems ridiculous to worry about body language when someone you care for shares their pain, but then again, we have a way of thinking about the wildest things to shield us from words we don’t want to hear, not because we don’t care, but because we might end up caring too much.

We don’t know how to ease their pain, so we end up carrying it around our shoulders, instead; a weight not heavier on us than it is on them, and while felt deeply, still not really shared. So we don’t end up helping much. When a child’s mental disorder is the burden, how do we practically empathise with someone whose son or daughter is ill, permanently, if we haven’t gone through something similar ourselves?

In retrospect, breaking the ice was easier for her than I thought. It dawned on me that no amount of thinking can help you start better or worse, and going over it in your head usually postpones a question that might be needed without delay: How is he? Often, there’s no better way to ask it than that, the same way there’s no better or worse way to answer it, when something’s not right, than with the truth.

More questions followed, without grilling. She wanted to know how the child was doing: what he enjoyed, what he disliked, how he changed since she last saw him. Only after that, she asked about his diagnosis, the symptoms, what the condition did to his body and what course of treatment he was following. The boy came first. The disorder, second.

Her friend answered, comfortably. He seemed that he was very much in charge of himself, his son, their situation. Very cool, very collected, very much aware. He sounded like he had it all figured out, but I don’t think his friend assumed that he didn’t need anything at all, though- so there she was, buying him lunch, talking about it. People who really need help have a hard time asking for it, and we shouldn’t wait until they do.

There were no whispers on either side. No fear or shame about what was being said and heard. The child’s mental illness did not reduce this boy and his family to a hush. There were no sighs from her. No squinting, no ohs, no I’m sorries; no drama. No deep nods of relating to what she couldn’t, no attempts to trump his story with one she’d read or heard about.

There were no empathetic head tilts, certainly no grimaces. No chin-ups, no declaration of everything turning out to be OK in the end. They both knew the process and its finality very well- no need to show disrespect by denying that; often, a demonstration of positive thinking that’s aimed at comforting the listener ends up painting broad strokes of misplaced optimism over the reality of the sufferer.

He could have cried. He did say he found it really tough, really really tough at times. It was possible that he could have broken down right then and there because caring for a sick child is incredibly difficult, and talking about it, often even more so. She seemed to be there to hear and bear whatever emotion would come her way, however raw, unapologetic, or difficult to deal with. He allowed her in and she embraced his vulnerability, whether and however it chose to manifest.

How she talked to him about it felt right. She sounded open, accepting, inclusive; she expressed interest, she asked, listened and verbalized her effort to understand the daily workings of the lives lived with mental illness. It wasn’t an experience she could relate to, and it wasn’t one that she understood- the words for symptoms, the words for medicines, the words for side-effects- but it was one she cared about knowing.

There was clear and honest interest, ample time to answer. She made no assumptions and there was no second-guessing of any part of the story she was entrusted with; no alternative therapies or narratives suggested to the man who had to admit his boy to a residential treatment facility, so he could receive the care and treatment they couldn’t possibly give him at home. His parents could not fix this; this was their life story and they needed love.

I felt that helped infinitely more than by the faces we’re taught to make, questions we’re told to ask, and not ask. She didn’t seem to follow a pattern, or repeat words read in books- in a society still plagued by the burden of stigma, she made talking about mental health seem easy, attainable. Open, confident. Loud and clear.

Hers didn’t seem to be an internal culture of emotion aversion, of fear- you could tell. She didn’t make small talk to dodge a difficult reaction from him, didn’t ask him to pass the soy sauce when he fell quiet- instead, she asked if the treatment was working. No. It wasn’t. His last seizure was yesterday.

She left room for his silence to swell, expand beyond her reach and burst, when ready. Poking a hurt so deep with the realization that it might never go away is something that would force many off-topic. She stayed put- wanted to know what helped, and didn’t probe for what didn’t. She used the words her friend had used before, asked for clarifications.

Perhaps, she even researched it afterwards. She wanted to be sure she got it. She asked, she understood, she showed she cared. It was a gift, what she was giving him.

And she knew when to stop. When it became less clear that he was willing to talk, she understood. They spent about ten minutes on the subject, and he always had a lot to get done. He’d sounded comfortable sharing certain aspects of it, but when the energy to go over it started leaving him, quietly seeping away between his fingers, he paused- at first, momentarily, then, for longer.

She got up, walked to the counter and asked for the bill. Gave him some space to gather his thoughts, gather his things, place his fork and knife slowly across his plate, pondering a thing or two. When she returned, he asked her if she’d seen that movie out in theatres. She hadn’t, and didn’t get her feelings hurt.

It wasn’t about her, his reluctance to go any further. It wasn’t her cue to have a confidence crisis over the trust of a friend who is in pain, one that hollows him out beyond her ability to comprehend, no matter how easy it has become for him to talk about it. As much as he could share, he did. Now, it was time to go for a walk.

*

As I went over their conversation in my head in the library later that day, I realized that there was one question which I always ask that she did not:

‘What can I do to help?’

Of course she didn’t. She already knew the answer. Nothing. Absolutely nothing.

It’s such a common thing to ask, I find, that I doubt most of us stop and think about what it really is doing, beyond that question mark. But maybe she did. She refrained from it because it could have reminded her grieving friend of the futility of every thought and action of his or others’, directed at making things better, and how there’s nothing anyone could do that has not been done and failed to make his kid better.

The despair that might come with that realization, hearing that question over and over again, must be incredibly difficult to bear for many. Maybe she knew that he wouldn’t tell her anyway, he didn’t want to seem vulnerable, helpless. Maybe she wanted to leave him with the thought that she believed that in spite of everything, he still had some degree of control. It helps to know it, and to feel others do, too. And finally, maybe she didn’t ask because she didn’t want to put the burden of deciding how she could help him back on him-when he already had enough to feel and do.

Instead, what she was left with were meaningful questions, that showed interest, compassion, support, and simple, mundane acts to pass the time well. And that added up.