Article
Christmas survival
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7 min read

Dealing with death at Christmas

On the darkest December day, a grim anniversary is recalled.

Jean is a consultant working with financial and Christian organisations. She also writes and broadcasts.

A moody sky overshadows a shingle beach on which a lone empty deckchair stands. A pier with funfair is in the middle distance.
Brighton Pier.
Nick Fewings, via Unsplash.

Thursday 17th December 2020 - a day I won’t forget.  

Christmas 2020 was already proving to be a little strange.  The UK was in this weird place of tiered restrictions, a sort of semi-lockdown approach. In London and the southeast, we had a bit more flexibility than folks in the north of the country, but people were not really out and about. Most people were saving their interactions for Christmas Day, so the streets were mostly quiet.  

Like virtually everyone working in the financial services, I was working from home. The night before, my older brother had left the house after an argument and not come home. My younger brother and sister were concerned about his whereabouts. His phone kept going to voicemail. They were worried.  There wasn’t much to do or anyone to see because everyone was regulating their behaviour and saving themselves for Christmas. I, on the other hand, was more nonchalant about his ‘disappearance’. My view was that he was an adult and had a habit of doing ‘immature things’ to get our attention. I thought, ‘He would come back home when he needed to.’ Little did I know how wrong I would be.  

At about 4:50pm, as I was winding up and about to log off at work, I saw a police car in our street. My room is on the second floor of our house and my desk is positioned so that I can look directly out of the window onto the street in front of our house. The police car stopped in front of our house. The officers got out and opened our gate. I remember I went downstairs and said, ‘The police are here.’, just before the doorbell rang. I was slightly annoyed, I remember thinking, ‘What silly thing has my brother done now?’ 

My Mum invited them in. But they wouldn’t speak to her. They were looking for my sister. This seemed really weird at the time. Mum kept asking them what they wanted. But they wouldn’t reply. They just kept saying that they needed to speak to my sister. They wouldn’t speak to my sister in front of all the family, so they led my sister outside into the garden. It was dark outside. We couldn’t hear what they were saying because the back door was shut but we could see my sister’s reaction.  She was deeply distressed. My Mum was beginning to get upset too, because she could see my sister through the window. They came back into the house. The police remained silent. It was just strange. My sister kept saying that we all needed to sit down in the living room. Mum kept asking the police what was going on but they remained silent. My younger brother and I were also frustrated and wanted to know. ‘Just tell us what is happening’, I remember saying.  But my sister kept saying that we needed to sit down and go to the living room.  

We finally all sat down and then one of the officers began to speak. I don’t remember his exact words but it was something to the effect of ‘A body was found this morning at Brighton Pier. From the belongings found on the body, we have identified that it is the body of your brother.’ 

At this point, I don’t think any of us really understood what he was saying. Someone must have asked, ‘Does that mean he is dead? Are you saying he is dead?’  ‘Yes.’, was the response. ‘How did he die?’, was the next question. Again, more weirdness. It seemed that they didn’t really want to use the word suicide, but that’s what it was. We kept asking for more details. What time? How did it happen? Was there anyone with him? But nothing was forthcoming. It all felt like a cover-up. And then it was over. They left and it was just us left to process it. It all seemed so surreal.   

That evening is all a bit of a blur. I am quite a practical person - I knew I was leading a bible study meeting that evening. So, I messaged, the pastor in charge to say I wouldn’t be able to lead it that night. After that, the next feeling, I remember is annoyance towards my brother. I felt it was selfish on so many different levels. Why did he have to do this? How does it solve anything? Why is he always looking for attention? Why would anyone do something like this just before Christmas? I remember feeling he had destroyed Christmas for us forever.  Why didn’t he just say something to us? We had just started playing tennis on weekday mornings before I logged into work, why didn’t he mention he was upset then? My younger brother and sister were deeply disturbed and didn’t know what to say or do. Both were blaming themselves.  Mum was totally shocked. I kept thinking and saying that he didn’t mean to do it. It was just a mistake that he couldn’t undo. If we weren’t in this quasi-lockdown situation, maybe someone would have noticed him in the water sooner and he would have been rescued? Maybe someone would have been walking along the Pier that night, seen him in the water, jumped in and pulled him out? We didn’t need a hero, maybe someone would have seen him in the water and just called 999? Maybe someone would have noticed him pacing up and down, and tried to speak to him before he went over the edge? 

The run-up to Christmas that year was extremely difficult. The government announced a full lockdown again and my family had to travel to the morgue in Brighton to formally identify my brother. I chose not to go with them, I felt at the time, that I wasn’t ready to see my brother’s body. We also had a tree in our garden whose roots had ruptured the sewer pipe, causing our bathroom to flood. It was all one big mess.  

I am in charge of the Christmas shopping operation in our house. Christmas is my favourite time of the year. I love the carols, the weather, the darkness, the cosiness, the services at church, the Christmas TV schedule, the food and the opportunity to rest, pause and reflect. I love everything about Christmas. But now it felt weird celebrating Christmas. The delivery came. On Christmas day, I cooked, my sister baked. But it was all just so sad. We sat in silence through a lot of it just eating. Sometimes we spoke about the days leading up to my brother’s death. At different points throughout the day, one or all of us would be struggling to hold back our tears or silently sob.  That period was one of the most difficult periods of my life.  

I do not have to be in a state of constant mourning throughout the Christmas period. Neither do I need to pretend or ignore that I haven’t experienced death at Christmas. 

Three years later, Christmas is still my favourite time of the year. Why? Despite everything, I still believe in the hope that came into the world at Christmas through Jesus Christ. It is that hope that helped me pull through that time. I held on to the comforting words I found in the Bible. I found people who supported me and worked through my grief on the Bereavement Journey. On this course, I discovered that it was okay to be angry, guilty, disappointed and sad about death. It was all part of the process. It was okay to grieve differently from my siblings and my Mum.  I didn’t have to force them to feel like me, nor make myself feel like they did. As we began to piece together my brother’s final days, I slowly understood that he had his own mental struggles and sadly was unable to find the help he needed.   

I learnt that grief involves the whole person – the body, soul and mind. I understood why I sometimes felt exhausted and at other times I was wide awake. It all made sense when I suddenly felt sad on my way home from my first time at Wimbledon.  The body has a weird way of remembering things even when you think you are okay mentally, so I wasn’t surprised when I got a severe migraine exactly three years to the day that my brother didn’t come home.  My faith does not mean that I understand everything about my experience neither does it mean that I can’t lament, question or be unhappy about the way things unfolded.  

For me, Christmas is still a time to celebrate the birth of Jesus Christ, the birth of Hope. But it is also a time of solemnity, even of grief. As the years go by, this will get easier but probably won’t go away. The two feelings are not mutually exclusive. I do not have to be in a state of constant mourning throughout the Christmas period. Neither do I need to pretend or ignore that I haven’t experienced death at Christmas. Rather, the most honest thing I can do is to acknowledge both feelings and take each day as it comes. 

Review
Books
Care
Comment
Psychology
7 min read

We don’t have an over-diagnosis problem, we have a society problem

Suzanne O’Sullivan's question is timely
A visualised glass head shows a swirl of pink across the face.
Maxim Berg on Unsplash.

Rates of diagnoses for autism and ADHD are at an all-time high, whilst NHS funding remains in a perpetual state of squeeze. In this context, consultant neurologist Suzanne O’Sullivan, in her recent book The Age of Diagnosis, asks a timely question: can getting a diagnosis sometimes do more harm than good? Her concern is that many of these apparent “diagnoses” are not so much wrong as superfluous; in her view, they risk harming a person’s sense of wellbeing by encouraging self-imposed limitations or prompting them to pursue treatments that may not be justified. 

There are elements of O-Sullivan’s argument that I am not qualified to assess. For example, I cannot look at the research into preventative treatments for localised and non-metastatic cancers and tell you what proportion of those treatments is unnecessary. However, even from my lay-person’s perspective, it does seem that if the removal of a tumour brings peace of mind to a patient, however benign that tumour might be, then O’Sullivan may be oversimplifying the situation when she proposes that such surgery is an unnecessary medical intervention.  

But O’Sullivan devotes a large proportion of the book to the topics of autism and ADHD – and on this I am less of a lay person. She is one of many people who are proposing that these are being over diagnosed due to parental pressure and social contagion. Her particular concern is that a diagnosis might become a self-fulfilling prophecy, limiting one’s opportunities in life: “Some will take the diagnosis to mean that they can’t do certain things, so they won’t even try.” Notably, O’Sullivan persists with this argument even though the one autistic person whom she interviewed for the book actually told her the opposite: getting a diagnosis had helped her interviewee, Poppy, to re-frame a number of the difficulties that she was facing in life and realise they were not her fault.  

Poppy’s narrative is one with which we are very familiar at the Centre for Autism and Theology, where our team of neurodiverse researchers have conducted many, many interviews with people of all neurotypes across multiple research projects. Time and time again we hear the same thing: getting a diagnosis is what helps many neurodivergent people make sense of their lives and to ask for the help that they need. As theologian Grant Macaskill said in a recent podcast:  

“A label, potentially, is something that can help you to thrive rather than simply label the fact that you're not thriving in some way.” 

Perhaps it is helpful to remember how these diagnoses come about, because neurodivergence cannot be identified by any objective means such as by a blood test or CT scan. At present the only way to get a diagnosis is to have one’s lifestyle, behaviours and preferences analysed by clinicians during an intrusive and often patronising process of self-disclosure. 

Despite the invidious nature of this diagnostic process, more and more people are willing to subject themselves to it. Philosopher Robert Chapman looks to late-stage capitalism for the explanation. Having a diagnosis means that one can take on what is known as the “sick role” in our societal structures. When one is in the “sick role” in any kind of culture, society, or organisation, one is given social permission to take less personal responsibility for one’s own well-being. For example, if I have the flu at home, then caring family members might bring me hot drinks, chicken soup or whatever else I might need, so that I don’t have to get out of bed. This makes sense when I am sick, but if I expected my family to do things like that for me all the time, then I would be called lazy and demanding! When a person is in the “sick role” to whatever degree (it doesn’t always entail being consigned to one’s bed) then the expectations on that person change accordingly.  

Chapman points out that the dynamics of late-stage capitalism have pushed more and more people into the “sick role” because our lifestyles are bad for our health in ways that are mostly out of our own control. In his 2023 book, Empire of Normality, he observes,  

“In the scientific literature more generally, for instance, modern artificial lighting has been associated with depression and other health conditions; excessive exposure to screen time has been associated with chronic overstimulation, mental health conditions, and cognitive disablement; and noise annoyance has been associated with a twofold increase in depression and anxiety, especially relating to noise pollution from aircraft, traffic, and industrial work.” 

Most of this we cannot escape, and on top of it all we live life at a frenetic pace where workers are expected to function like machines, often subordinating the needs and demands of the body. Thus, more and more people begin to experience disablement, where they simply cannot keep working, and they start to reach for medical diagnoses to explain why they cannot keep pace in an environment that is constantly thwarting their efforts to stay fit and well. From this arises the phenomenon of “shadow diagnoses” – this is where “milder” versions of existing conditions, including autism and ADHD, start to be diagnosed more commonly, because more and more people are feeling that they are unsuited to the cognitive, sensory and emotional demands of daily working life.  

When I read in O’Sullivan’s book that a lot more people are asking for diagnoses, what I hear is that a lot more people are asking for help.

O’Sullivan rightly observes that some real problems arise from this phenomenon of “shadow diagnoses”. It does create a scenario, for example, where autistic people who experience significant disability (e.g., those who have no perception of danger and therefore require 24-hour supervision to keep them safe) are in the same “queue” for support as those from whom being autistic doesn’t preclude living independently. 

But this is not a diagnosis problem so much as a society problem – health and social care resources are never limitless, and a process of prioritisation must always take place. If I cut my hand on a piece of broken glass and need to go to A&E for stiches, I might find myself in the same “queue” as a 7-year-old child who has done exactly the same thing. Like anyone, I would expect the staff to treat the child first, knowing that the same injury is likely to be causing a younger person much more distress. Autistic individuals are just as capable of recognising that others within the autism community may have needs that should take priority over their own.   

What O’Sullivan overlooks is that there are some equally big positives to “shadow diagnoses” – especially as our society runs on such strongly capitalist lines. When a large proportion of the population starts to experience the same disablement, it becomes economically worthwhile for employers or other authorities to address the problem. To put it another way: If we get a rise in “shadow diagnoses” then we also get a rise in “shadow treatments” – accommodations made in the workplace/society that mean everybody can thrive. As Macaskill puts it:  

“Accommodations then are not about accommodating something intrinsically negative; they're about accommodating something intrinsically different so that it doesn't have to be negative.” 

This can be seen already in many primary schools: where once it was the exception (and highly stigmatised) for a child to wear noise cancelling headphones, they are now routinely made available to all students, regardless of neurotype. This means not only that stigma is reduced for the one or two students who may be highly dependent on headphones, but it also means that many more children can benefit from a break from the deleterious effects of constant noise. 

When I read in O’Sullivan’s book that a lot more people are asking for diagnoses, what I hear is that a lot more people are asking for help. I suspect the rise in people identifying as neurodivergent reflects a latent cry of “Stop the world, I want to get off!” This is not to say that those coming forward are not autistic or do not have ADHD (or other neurodivergence) but simply that if our societies were gentler and more cohesive, fewer people with these conditions would need to reach for the “sick role” in order to get by.  

Perhaps counter-intuitively, if we want the number of people asking for the “sick role” to decrease, we actually need to be diagnosing more people! In this way, we push our capitalist society towards adopting “shadow-treatments” – adopting certain accommodations in our schools and workplaces as part of the norm. When this happens, there are benefits not only for neurodivergent people, but for everybody.

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