The following is an episode I wrote for my memoir, Tell Me the Planets, that wasn't included in the final version of the book. It tells the story of a family I met during the course of my work at Headway East London - Stephanie and her husband Theo, who had survived a brain injury two years before we crossed paths.
7th June 2015
A colleague forwards me an email from a woman called Stephanie in San Francisco. The email explains that Stephanie’s husband, Theo, survived a head trauma in a ‘stairwell accident’ in December 2013. She includes a link to an online magazine that has published an article she wrote about the experience.
It’s a raw and vivid account of the immediate effects of her husband’s trauma. She describes the moment the accident happened and the ‘brutal’ sight that confronted her when she ran outside after hearing the crash: her husband lying a story below next to the smashed writing desk he’d been carrying. Eighteen months on, she says, the memory still flashes into her mind whenever she hears a siren or sees blood.
She describes the impossible-sounding task of sustaining nightly hospital visits across the three months of Theo’s stay in intensive care while still looking after her children; and the terrifying future she glimpsed as Theo emerged from coma. She describes the occasion when Theo, weird with post-traumatic amnesia, asked her to fetch his wife:
‘I am your wife,’ I said.
‘No, you’re not,’ Theo insisted.
‘What does your wife look like?’
‘And what’s her name?’
‘Oh, she looks like me,’ I answered with false brightness. ‘My name is also Stephanie. That is because I am your wife.’
‘No, you are not.’
I can’t imagine a better-chosen account of coma recovery. The loved-one begins to emerge. They sound the same, look the same - but then elation is lanced by horror as catastrophic vacuums open up in the membrane of surface appearance. What have we lost, the family asks? What will become of us? Is there still an ‘us’?
Perhaps even more affecting is her description of the impact on the children - three-year-old Delilah, Pir, who is six, and Joseph, eight. She describes the trauma reactions surfacing in the two boys after seeing Theo fall that day: bed-wetting nightmares, unprompted drawings of their father’s bloodied face. And later, after his return home, how sensitive the children are to the changes in him:
Theo is easier with Delilah’s laughter and hugs than with the angry movements of his sons, who miss being tossed into the air with the certainty of being caught, of roughhousing on purpose, and not because their father no longer understands the strength of his damaged hands.
Over dinner one night, Pir said in his clear, sweet voice: ‘Papa, you were a much better dad before your accident.’
8th September 2016
A little over a year later I find myself standing in the long, glazed lobby of San Francisco International airport. I send a message to Theo telling him I’ve arrived safely and asking if he’s still happy to meet this afternoon. The sun is blazing outside, which helps with the foggy feeling in my head.
I reply, saying I’m in good shape and that I should be with him in about half an hour. The former is maybe not entirely true. As my taxi and moves into the southern outskirts of the city, the highway becomes crowded by haphazard, temporary-looking wooden buildings. For a moment I become worried that they are too close to the road. I remind myself to take it easy, that I’ve barely slept in the last 24 hours.
Previous visits to brain injury projects here in the US have left me with the suspicion that things are as bad or worse for survivors on this side of the Atlantic - with long-term provisions in short supply and the non-profit sector badly under-resourced. Maybe this is partly what’s making me feel uneasy. Through the back window of the taxi and the haze of jet lag, America seems big and bright and thinly drawn, like I might fall through it into something else.
'I was thinking, "Some of you guys are fucked."'
The unsteadiness of Peter’s gait is immediately obvious as he greets me in the quiet lobby of his office building, as is the slur in his speech.
‘Do you need anything? Some water? Do you want to use the restroom?’ The words run together gently as they did on our video chat. He’s dressed all in black and, as in the video, looks a little fuzzy around the edges, as though he might have got out of bed not long ago. But in person he also has a pleasing solidity - someone you might want to hug. He gives me a short tour of the office floor - there are glazed cubicles, cool artwork on the walls, bookshelves that give a homely feel. We sit down on a large sofa suite along one side of the open space and Peter reminds me of the facts of his injury.
‘I was a 3 on the coma scale,’ he says.
‘That’s the worst score you can get, right?’ I say.
‘Yeah. I was in a coma for five weeks and had post traumatic amnesia for about a month, I think.’ The body-snatcher conversation must have happened during that time, I’m guessing - the one Stephanie reported in her article. I am your wife.
‘Given what happened to you,’ I say, ‘it’s incredible how well you’re doing.’
‘Honestly,’ he says, ‘I don’t put my recovery down to anything I’ve done myself. We lived right near the best trauma hospital in the city. It’s the efforts of all the amazing professionals, all the time they spent working with me over those months. They’re the ones I thank. That and my bad-ass of a spouse.’
He says there was also ‘a big slice of luck’ involved. ‘I think a lot about the what-ifs. What if my head had been turned just an inch one way or the other when I fell. It could have been the difference between being able to walk or not.’
He still thinks about some of the other patients he met in rehab.
‘I remember even when I was there I was thinking, “Some of you guys are fucked”. Some of them couldn’t walk or talk, or they would have outbursts where they’d do or say something crazy. I know if I’d had any of those problems it would have made coming back to work almost impossible.’
And it’s this, of course - his return to work - that most obviously signals Peter’s recovery. He came back just seven months after the injury, a feat that to me is unheard-of considering the scale of his injury. I ask about his hours.
‘Ideally I work a forty-hour week,’ he says. ‘But in reality, that means averaging fifty or sixty hours.’
My jaw drops involuntarily. The idea that anyone with serious traumatic brain injury symptoms could be working this much is breathtaking to me.
‘My boss was really patient,’ he explains. ‘He stayed in contact with us the whole time. He came to see me in hospital. I owe him a lot.’
I don’t want to pry too much into the question of Theo’s impairments - beyond the obvious changes to his gait and speech. I’ve gathered that he’s cautious in relying on his memory. When we were setting up today’s meeting he was careful to cc Jen on everything, checking he hadn’t forgotten any commitments at home. And then there’s the fatigue.
‘It’s amazing,’ he says, laughing. ‘Sometimes I realize just dealing with the basics is enough - just walking right, using the restroom, getting through a day. I almost don’t have energy for anything else.’
He has a nice numerical metaphor for describing this change:
‘It’s like this. I used to have ten points. Now I only have six. So I have to do what I can with those six. I don’t have a choice about it.’
‘How does that affect your home life?’ I ask.
‘I suppose that’s what ends up taking the slack,’ he says. ‘It’s hard to do everything.’
‘That’s where the bad-ass spouse comes in?’
A young man strolls past with a bicycle - a colleague on his way home. The man says Hi to Peter, asks how he’s doing, a little diffidently. Peter says ‘Good, how are you?’. What do Peter’s colleagues make of him? Do they understand what’s happened? Does he tell them about the injury?
‘I just say I had the accident,’ he explains. ‘I don’t usually go into detail unless somebody asks for it.’ He seems to be good at acknowledging the complexity of the situation for everyone without getting bogged down in trying to solve it.
‘You have to get on with life,’ he says. ‘It’s really hard for me to accept what’s happened, to get used to what I can’t do any more. But I can’t afford to get stuck on why it happened. I have to deal with what’s in front of me now.’ It’s a great principle but, to my mind, a paradigm of easier-said-than-done. Maybe it’s precisely because he was able to hold on to his career that Theo can be so sanguine about what’s changed. He has an island of solid ground from which he can view the sea of change around him.
I still have a lot of questions - about how he copes at work, and about his relationships at home, but he has a meeting coming up and we have to stop.
Three days later I’m sitting outside a cafe on Valencia street with Stephanie. At first I’m a little nervous - aware that this time apart from the kids has been hard to for Stephanie to arrange and she seems a little hurried, a little distracted. But I slowly start to think that this partly just the way she works. She notices how much blue I’m wearing, she asks me about my work, she tells me about an artist she’s interested in, breaking off repeatedly as new thoughts come to mind. She tells me about all the activities the kids are up to - fencing, dancing, some kind of rock-and-roll band project.
‘There’s a lot of pressure these days to be a full-on parent,’ she says. I remember what Theo said about his ‘bad-ass’ of a spouse.
She tells me about the early years of their marriage – how they travelled obsessively, living in several different countries, slowing down only with the birth of their third child. But since the accident there’s been a gradual shift in the way Stephanie appraises her former foot-loose attitude.
‘We have friends who are still kind of in that mode,’ she says. ‘They talk about how they don’t want to give up on their freedom. There’s one friend who’s living in a place really similar to the one we had when the accident happened, it’s cheap - for SF - it’s creative, it’s low-commitment. He says it doesn’t matter if things are a little impractical. But now I think about it and I feel like sometimes “impractical” just means dangerous.’
When Theo fell from the landing, there were no railings to prevent it. Maybe part of what’s hard to accept is how mundane the accident was. After all the exciting adventures the family had had, it wasn’t a skiing accident in the Alps or a moped crash in Paris, or a bar fight in LA that injured Theo. It was a writing desk. What could be more quintessentially domestic, more stereotypically paternal, than moving furniture?
‘Joseph says Theo should never have been carrying the desk in the first place,’ says Stephanie, incredulous. ‘He says he told us to get a mover, which, of course he didn’t. He was six. He didn’t even know what a mover was.’ But the emotion behind it makes perfect sense, she explains.
‘It’s like on some level Joseph became the dad - he’s mad at Theo for getting injured, for having this stupid accident.’
There are layers of complexity to what’s happened - to what’s still happening - within the family. Disabilities that in the adult world are manageable create more difficult problems in the context of parenting.
‘Theo can’t move as fast now so when the kids are running around he sometimes sort of grabs at them. Often, he’s doing it to try and keep them safe or to slow them down so he can interact. But his movements are unpredictable and he’s lost sensation in his hands so he doesn’t always know how hard he’s grabbing. The interactions are so different from the way they were before. The basic fact is that they’re scared of him now.’
There seem to be other weird echoes and reflections surfacing.
‘Joseph hates writing - he’s not dealing with it at school,’ says Stephanie. ‘But then I realised that Theo never wrote either.’ Is it something straightforwardly inherited - a simple physiological thing - or something stranger, a disordered way the boy has found to identify with the father who has failed him?
And Theo’s ability to do those day-to-day things that give parenthood its meaning has diminished too. Stephanie explains that he used to cook a lot but his loss of taste and smell - and that same loss of dexterity in his hands - means this is much harder now.
‘And even his efforts to make up for it can lead to difficult or weird situations,’ she says. ‘He wanted to buy a bread maker so that he could carry on making something for the family - which is a great idea, right? He found one on eBay but then it had to be picked up and Peter can’t drive anymore and he was really tired the evening it was supposed to be collected. So then I find myself driving over to this total stranger’s house in the dark on my own. And it was totally fine - the guy was really nice - but it was just another situation that reminded me how much our partnership has changed, how much I’m taking on. I just can’t count on Theo the way I used to.’
She checks her phone. ‘Even leaving him with the kids this long is really unusual,’ she says.
'His CEO asked me: “So now it’s just physical problems, right? Nothing cognitive?” And I said to him, “Yes, just physical!” like that’s possible.'
Stephanie describes her mixed feelings about the psychotherapy the family have been having. It’s clearly a big help in getting them through what could otherwise be unmanageable changes. But she talks about the conflict between what the therapists expect of Theo and what he can deliver. ‘They get angry with him - I know they’re not supposed to get angry. They get frustrated because they set him homework and he just doesn’t do it.’
Many of the common symptoms of brain injury flatly contradict the premises of talking therapy, after all. How do you do therapy with someone who can’t remember great chunks of their past? Or what you talked about last week? For a long time among the therapeutic community it was thought that counselling for brain injury survivors was impossible.
The lack of understanding isn’t limited to the therapists. ‘I remember when Theo was going back to work, his CEO asked me: “So now it’s just physical problems, right? Nothing cognitive?” And I said to him, “Yes, just physical!” like that’s possible. And when we were talking with the lawyers about his behaviour at home one of them said something like “that’s more of a parenting style than a disability”. Friends ask how we are but if I say anything about Theo they say “my husband does that too and he doesn’t have a brain injury,” or, “he sounds like a 1950s parent.”’
And the lack of general understanding or information left Stephanie in the dark at times when crucial decisions had to be made. ‘When the accident happened, we didn’t have a lot of money saved after all the traveling,’ she says. ‘We had to choose between spending pretty much all the money we had on rehab or saving it for later in case things didn’t get better. We made a bet that Theo would be able to get back to work. There were friends who told us no way, do not to spend that money.’
From a British perspective it seems terrible that the family should be forced to gamble like this. It’s surely luck in large part that the bet has so far paid off.
And Stephanie is clear that they aren’t out of the woods yet.‘I don’t want to sugar-coat it,’ she says. ‘One night a few weeks ago Theo and I were talking and he just said “If you want a divorce, that’s OK.” It wasn’t passive-aggressive, he meant it. He really just wants us to be OK.’
As I walk back down Valencia street after the meeting I ask myself what distinguishes Stephanie and Theo from all the families I know back in the UK that have been broken apart in the wake of brain injury. Their situation is clearly difficult but somehow, they’ve managed to keep things together.
Maybe, as Theo kept saying, he was lucky. His accident was horrendous but maybe something about the exact nature of the impact, or the skill with which his medical team responded made some difference.
I remember the text he sent welcoming me to America, checking that I wasn’t tired. And the following morning another that made me smile:
I think about the conversation Stephanie reported about divorce - Theo trying to make it easy on her, putting the option on the table to spare her the agony of raising it herself. Their relationship, I think, was something quite unusual even before the injury. And Theo has a warm heart, a quality that seems unchanged by the injury.
And then there’s the bad-ass spouse. Stephanie is energetic, resourceful, committed. Surely this, in a sense, is another stroke of luck for the family.
But none of these explain the single most important factor – Theo’s retention of his job. Without work, the family would be in serious trouble.
I google Theo’s company. On the recruitment page of their website I’m intrigued to find an assertively worded statement about careers for disabled people: ‘…we are dedicated to taking affirmative action to employ and advance in employment qualified individuals with disabilities, disabled veterans, and other protected veterans…’
With a little more searching I find out that one of the company founders - the boss Theo and Stephanie mentioned - has a history in the military. He also studied emergency health sciences and pre-medical neuropsychology at undergraduate level. It seems conclusive: a key figure in the company just happens to have a background that has provided him with an awareness of acquired disability, and the principles to take a position on it.
When you become a parent, you sign an invisible agreement with your children. It says, I will take care of you.
But in some ways, this is all just the easy stuff. The hard stuff is what Stephanie is spending her nights playing over in her mind. The hard stuff is what’s happening with little Joseph and his siblings, growing away from and towards what happened that day.
There’s a brilliant passage in Stephanie’s article, the one I read before meeting them, that sums up the disjuncture created by traumatic amnesia between the survivor and their loved-ones:
Theo lives each moment with the injuries themselves but remembers nothing of the accident, she writes. The emergency response, his time somewhere between life and death… Theo and I are bound by this traumatic experience, yet in that instant our lives diverged in ways that we still struggle to reconcile.
I remember a conversation I had with the pair via video call before I came to visit. The two of them sitting in their bright kitchen, their children’s drawings all over the wall behind them. I watched Theo’s placid face as Stephanie recounted the story of the accident: the writing desk, the landing, the newly repaired cement, just enough of a bump to trip a person walking backwards.
‘What do you think when you hear that story?’ I asked Theo.
He shrugged, shook his head. ‘It’s kind of like I’m living in a dream these days. My family have been through this terrible thing that I just don’t remember. I wasn’t there. It happened to them, not me.’
At the moment of impact, the moments that led up to the fall disappeared and Theo vanished into the disjuncture. He will never know, subjectively, what his mistake was. It is an error without natural history. He blinks, rolls over, wakes in hospital, wonders where he is. He wakes again, wonders where he is, a hundred times. Three months pass in a moment. The accident becomes something for which he was not present and which he will never recall, never learn from.
Meanwhile those three months are for Stephanie and the children a lifetime filled with terrible learning. For Stephanie and the kids, Theo’s injury represents an intolerable proposition, the same proposition many survivors and their families struggle with: nothing is permanent, nothing is safe. The differences they see in him every day present another, even more confusing idea: your husband/father is gone. But still here. A phrase comes into my mind: No wonder your kids are angry with you.
When you become a parent, you sign an invisible agreement with your children. It says, I will take care of you. To become suddenly disabled, to succumb to an injury that prevents you from continuing in that role, is to break that contract. If you become someone in need of care yourself, if the dynamic is not just shifted but reversed, all the more difficult.
For a family to recover well from a change of this kind, to become used to it, is a huge task. To talk of ‘processing’ such a change, and the handshake with death that forms its centre, is to slide into glibness. With luck the kids will come to grasp who their new dad is and to be more aware of the tight feelings his accident left them with, more able to let them go. I imagine that one day the change will feel to Stephanie and her children more like something that happened, less like something that is happening. I hope too that the disjuncture, the dissonance between the amnesia on Theo’s part and the traumatic memories held by the rest of his family, will close gradually and become just one part of the complicated, recursive patchwork that makes up a family’s history, one among many stories that are disagreed over or waved away or quietly accepted as part of the bright nonsense of sharing a life.
Theo’s injury will surely cast a long shadow. But perhaps the person he is now – warm, funny, genuine – will shed some new light. I think about Stephanie and the energy I felt coming from her when we met. I think about everything she is supporting the kids to do, all the projects and activities. The paintings on the kitchen wall. Theo’s phrase comes back to mind. Just dealing with the basics is enough.
In getting this far, I think, in dealing with the basics and having energy to spare, this family have done an extraordinary thing.