by Poorna Bell
‘You have a hole in your heart.’
THUMP.
‘It’s an inch across and you’ve had it since birth.’
THUMP.
We all looked at each other, and then at the doctor.
‘I don’t understand. How am I only finding this out now? I’m thirty-one. When Mum had hers, she couldn’t even walk up the stairs when she was a child.’
The doctor explained that a hole in the heart is always congenital, and I’d had it from birth. But presumably the rest of me had been strong enough to keep going, and I’d carried on without even realising the effects of it. But now it had reached the point where the heart couldn’t cope any more. It was enlarged, and that hole needed to be closed.
THUMP.
An inch across.
She left the cubicle and my parents’ arms swept around me like a ball, and we all cried.
We cried because I had been such a healthy baby, it seemed unlikely I had inherited Mum’s hole in the heart so they didn’t arrange for me to have a scan.
We cried because if we hadn’t caught it when we did, I could have had a stroke.
We cried because until I had an endoscopy, we wouldn’t know if I needed open-heart surgery or keyhole. When the doctor explained this, I saw my mother, through her tears, briefly touch the deep scars that ran down the middle of her chest, the marks of a time when life was hammered back into her.
They wanted to keep me in overnight for observation.
My sister came, then my close friends. ‘Where’s Rob?’ they asked. I wondered that too. It had been three hours since Mum called him and told him the news.
When he eventually arrived, he gave me a kiss and stayed while people drifted off back to their homes. I was so pleased to see him. He was the person I found comfort in, who would look after me, nuzzle me and tell me it would be all right.
I was transferred to the cardiac ward, where I was the youngest one there. I caught sight of my reflection. A frightened brown girl cast dark against the white walls, white bed. The sound of ventilators and coughing briefly breaking the silence of people willing their bodies to heal.
‘Do you want dinner?’ he said when we’d barely settled.
‘That’d be nice, thanks,’ I replied, part of me wishing we’d had some time to talk before he rushed off. I didn’t know if I was being dramatic but it was as if he couldn’t bear to be in the same room as me.
He fetched me some noodles, and I’d just finished eating when he said: ‘Well, I’d better be off, love. I’ll come and fetch you in the morning, all right?’
I didn’t want him to go. I didn’t understand why he’d taken so long to arrive, and then was so quick to leave. Wasn’t he supposed to stay and comfort me? Wasn’t that what married people did for each other?
When I returned home the next day, I felt broken. I was quite literally broken – an inch across, in fact. Over the next few months while I waited for the surgery, I couldn’t do more than walk. For the first time in my life, my body felt like it was running on a low battery, getting slower and slower. I closed my eyes and thought of all that blood leaking through the wrong side.
Running to the bus stop was out of the question, and I had to figure out other ways to keep fit, so I walked everywhere, went for swims regularly.
My life with Rob during that time was a blur.
Our families were concerned about how he was handling it, but he seemed pretty nonchalant. ‘People keep asking me if I’m okay,’ he said, ‘but I don’t see what good worrying will do. I know you’ll be fine.’
While I don’t remember much, from my diary entries I think that, like the ECG, there were zigzags between the good days and bad. We would have a few that were awful, punctuated by his lack of sleep and communication, and then a few days that by contrast were wonderful, full of affection and love.
There is an entry that says: ‘We have become closer than ever. I didn’t think it was possible to love him any more than I do, but he is amazing.’
Although the strongest memories are of what Rob didn’t do around that time, there are flashes of good ones that I know to be true because that’s who Rob was, for most of our relationship. He may have been crap at times with the supermarket shop, or getting out of bed, but he rubbed my back when it was sore.
When we lay in bed and my feet were like ice blocks, he’d let me press them against his legs uncomplainingly so they’d get warm.
When we were snuggled in bed, I’d ask him to get me peppermint tea and a hot water bottle, and he’d do it willingly. When I ordered something from IKEA and got fed up with it, I’d hand him the instructions, a tangle of furniture that was meant to resemble a bookcase and a screwdriver, and he’d get on with it.
In fact, a lot of the house stuff – whether that was moving big boxes around, shovelling shit (he did this, literally, when someone crapped next to our tent at Bestival), walking the dog, carrying the bags and taking out the bins – he took care of. If one of us needed to take the car to the garage or go on a mission that was awkward and needed two bus journeys to get there, he’d do it without so much as a gripe.
But a few days after that diary entry, I wrote the following, and clearly we must have had a conversation in which he talked about being suicidal:
I’m just going to come out and say it: Rob’s depression is getting me down. I’m trying, I really am, but the effect of dealing with his stuff and my surgery has just worn me down.
I can’t talk to anyone about it either, and that’s the hard part. I just didn’t think the first year of marriage would be like this. I want him to sleep well and enjoy life but the more time goes on, I wonder if that day is going to come.
I hate the person I become when he’s depressed. Needy. Fearful. Unloved. And yet I do know the whole time that it’s the disease, he’s not being like that on purpose. But it is hard to explain to other people why he’s said two words all evening. Or why he sleeps all day. Or why we can’t do things because he can’t sleep at night.
The endless insomnia, backaches, toothaches, stomach cramps. My God. I know that depression is tunnel vision but I barely register as wallpaper.
And what the fuck do you do when your spouse says they have entertained thoughts of suicide? How the fuck am I supposed to handle that? Something has to change. I love him so much but I am so tired of feeling resentful and out of my depth.
I don’t remember that particular conversation about suicide, but I do know that it was around the time Rob started to talk about the amount of debt he was in. We were talking thousands.
‘I don’t understand – how did you accrue so much debt?’ I asked. He wouldn’t let me see his accounts.
‘Wedding stuff,’ he replied.
‘But my parents paid for most of the wedding,’ I said, shocked.
He said things mounted up, and he was now crippled by the amount of interest he was paying off on credit cards.
We were in the middle of selling Oakdale Road to buy a new house, but eventually he asked if we could use the equity to pay off his debts (and some of mine from previous years), and we’d rent until we managed to save up enough for another deposit.
In the middle of one of the most difficult times of my life, I realised we had lost our home. I didn’t feel I could shout at Rob about it, because I hadn’t contributed anything to buying the house. In fact, my irresponsible borrowing around the time of the wedding meant I couldn’t help us out either.
By the time my surgery was scheduled – and it was keyhole – I lost sight of what was going on with Rob. I was drawn into fixing my own body, and the huge emotions that came out of that.
I needed my mother more than I wanted Rob. She knew what this felt like, and she provided a comfort no one else could, yet I could see the guilt on her face. She felt it was her fault because I’d inherited the gene. But she wasn’t responsible for it any more than Rob’s parents were responsible for him having depression.
My mother wasn’t expected to live bey
ond her teenage years. A sickly child, she was one of the first to have pioneering surgery that fixed a hole in the heart. The success rates weren’t high, but my mother looked it in the eye and fought through.
Although my procedure was keyhole, and I only spent the night in hospital, it took my body three weeks to recover. It took my mind a lot longer.
During that time spent convalescing at home, I learned a lot about Rob. Despite me being the patient, he spent more time in bed than I did. But when I asked him about it – ‘Look, I don’t want to piss you off but when are you working? You seem to spend most of your time lying down?’ – he got really defensive.
The resentment drifted through the house like dust. Always there, but never so tangible it took form as an argument. For once, I was the one who needed help and looking after, and I didn’t feel I could rely on Rob at all.
This is one of the hardest things when it comes to looking after someone with mental illness. It doesn’t matter what problems you have or if you’re having a bad day. You have to constantly shelve your emotions because the other person will always need looking after.
When you have the flu, be prepared to put on your coat and drag your diseased, bedraggled ass to the shops to get some Lemsip, because you can’t rely on it coming from your other 50 per cent. You’re both Florence Nightingale and Universal Soldier, in that you’re patient, loving and resilient as hell.
Because when I sat there in bed with no energy, wanting to be alone, not understanding why the fuck my husband was still in bed at 11am when he should have been working, it took every ounce of willpower not to scream: ‘IT’S NOT FAIR!’
Then, just when I thought I couldn’t take it any more, it just wasn’t on, he’d bound into the room with a beautiful, wide smile on his face and talk about the big commission he’d landed, or ask me to go look at baby owls with him in the park.
I mean, seriously, how mad can you be at someone who wants to go see baby owls? But this constant yo-yoing, veering from low to high, meant I wasn’t asking the right questions. Before I had long enough to dwell on it, to truly observe what was happening, Rob’s tempo would change and it would be all right again.
At the mention of suicide, I know I asked him to go and see his GP. ‘He needs to refer you to a therapist, or to a psychiatrist, Rob.’
When Rob was eventually referred to a psychiatrist, I asked him how it went.
‘All right, but I don’t think she knows what to do with me.’
‘What does that mean?’
‘She looked freaked out. I don’t think she can handle me.’
I had no idea what this meant.
Then Rob announced the doctor had discharged him. None of this made sense, but he said he was feeling much better.
While I thought I was the one going mad from the constant seesawing between high and low, I wasn’t the only person who experienced it. One of his best friends, Jesse, knew exactly what I was going through.
When I first met Rob, he told me about the idea of the Big Family. He said Jesse and he were staunch believers in it. It meant that wherever in the world you were, they would try to put you in touch with someone in that country who would help you out. Whether it was a couch for the night or a shared meal. Then you paid it forward and, inch by inch, the world became a more known place and life became more connected.
When my sister was in New York and in the painful, raw throes of her marriage ending, Rob called upon the Big Family and Jesse immediately put her up in the flat where he was living at the time. It’s something that my parents have never forgotten – Jesse is pretty much like a black Vishnu in their eyes. It was little wonder that Jesse would go on to become one of the great loves of myself, and my New Zealand and Indian families.
Rob was introduced to him through a mutual friend named Toby while visiting New York in winter, and he knew Jesse had just been diagnosed with HIV at the age of nineteen. Jesse was angry, and felt like his life held nothing for him any more. ‘What was the fucking point?’ he said.
But then along came Rob, who pushed himself into his life.
‘I was desperately lonely and afraid when I first met Rob,’ he told me. ‘That’s just the truth of the matter. It felt like doors were closing left and right, and what I thought my life was going to be was no longer what it was actually going to be. And that just filled me with emptiness and fear. I think that’s important to say, because my relationship with Rob represented options.
‘I mean, I know he knew that he pulled me out of a terrifying time in my life, but I don’t know if he knew the potential being friends with him showed me. He opened the world to me. By, like, literally taking me around the world and showing me things. But also by harassing me – I mean, I admired him so much, but when I was nineteen I didn’t think I was any good, anyone worth being around.
‘But Rob would harass me. He’d call me on the phone. He’d email me so often – and I mean, really often, probably like five times a day for fourteen years? Or more. He was the engine of our friendship. And him wanting to be friends with me kind of showed me that I was someone worth being friends with.’
However, he also knew Rob had his moods, and there was something comforting for me in knowing that he absorbed them too. That it wasn’t something I’d done or said.
‘God, did I know those moods well,’ he said. ‘He would be excited to see me, then, at the drop of a hat, he would go cold, disinterested, flippant, unkind. But Rob was always like this. And I got used to it – I learned to not take it personally.
‘When he shifted, I would shift with him – read with him in silence, try not to annoy him.’
Jesse also dated Mikey, who co-owned the house with Rob.
He shared a story about their break-up. For all of Rob’s difficulties, and the stress of switching track to keep up with him, it made me cry that someone who was capable of giving both of us such warmth and love was no longer here.
‘I remember I had an awful visit to England after Mikey broke up with me,’ Jesse said. ‘I tried so hard to come back to London and just do the city like I used to, but it wasn’t the same and I wasn’t the same and I fucking hated it.
‘I was sleeping on the couch in the living room and Rob came down early in the morning and kicked me awake and put my head on his lap and sung to me in the early morning light. And it was . . . one of the greatest comforts another person has ever given me.’
When I was diagnosed with my hole in the heart and recovering from the surgery, there was a lot that Rob should have done, and didn’t. It wasn’t about the physical things; it was about being there for me emotionally, and he was absent.
I searched his eyes endlessly to find him. I tried to call him back from the distant place he had gone to, but he was a man travelling his own desert; unreachable, and in a landscape with no map.
I stood at the shoreline alone for most of the time, pinned there by a body that could no longer keep pace, as others swam further out to sea.
But, like he did Jesse, he gave me the greatest moment of comfort I had ever experienced.
On the day of my operation, we woke up early. I remember brushing my hair slowly in front of the mirror, and looking myself in the eye. We got in our Honda that smelled of dog, waved goodbye to Daisy and drove to St Thomas’ hospital in Waterloo, where we met my parents.
There was a jolt of excitement and fear. I knew things would never be the same, but I also knew that if my heart had managed to power on with a one-inch gash in it for thirty-one years, then it was remarkable.
But as we sat down in the hospital coffee shop, the smell of beans roasting in the air, the worries of others held in pouches under their eyes, I started to become afraid. I felt small, like I was shrinking to fit in the door to Wonderland.
I breathed the smell of my own mortality and saw the smallness of my own life. Whatever charmed existence I had led was now in the hands of my doctor, his robotics system and a balloon that would swim through my body and clamp a hole in one of
my most vital organs.
Rob saw my fear. He looked at me and gestured for me to come over and sit on his chair. I hesitated – my parents were there (we didn’t do public displays of affection in front of them) and people would think it was weird; us sitting one in front of the other like we were on a tandem bicycle.
‘Just come over,’ he said gruffly.
I sat tentatively in front of him. The chair was big enough.
He pulled me in closer and put his arms around me, wrapped me tightly in a circle and kissed the back of my neck. In that moment, it felt like being at the centre of everything. We closed our eyes and went to that place where our love for each other came from.
It was exactly what I needed. I felt safe, I felt loved and I thought, If this is all there ever is, and that blasted balloon explodes my heart into pieces, this is enough.
Then I caught Dad’s eye.
I was never sure what my dad thought of Rob – he’s not a massive fan of tattoos, he was concerned about Rob’s depression before we got married, and Rob tended to clonk around their house breaking things and leaving mud everywhere.
But while we don’t talk a huge amount, we do often know how the other is feeling without needing to speak.
I sensed Dad nod imperceptibly.
Acknowledgement that whatever his turmoil about the impact Rob’s depression was having on me, my father knew that my husband, in that moment, had been what he believed a man should be: protective, attentive and strong.
Maori legends best paint an understanding of the close relationship between people, earth, sky and water. Rob loved stories about the taniwha, colossal beings of the sea, gods and monsters made of strength, sinew and spine, sometimes benign when acting as protective guardians, sometimes destructive when tossing people down their gullets like oysters.
When he was in New Zealand shortly before he died, he mentioned taniwha in one of his emails. I liked to hear about the details of his day.