Reconsidering the limbo between life and death

Generally, I avoid rereading anything I have ever written. Those words, while true at the time, are a record of how I felt in that moment. As time passes and experience shifts my perspective, I often find myself either cringing or feeling completely removed from my original thoughts.

Last year I wrote an article about dealing with the uncomfortable in between of life and death. The article ultimately suggested that while speaking about things is important, sometimes getting on with it is the only way forward. Since writing that piece, while my dad is still in this difficult limbo of terminal illness, my opinions have changed.

Instead of putting off reflecting on my earlier statements, I felt it was better to revisit them and expand on how my viewpoint has changed. At first, I thought I would reconsider my original article after he died. However, as is usually the case when I write, I simply decided to do it today. He is still alive.

Firstly, it is important to note that not all the words I originally wrote feel foreign to me. I still agree with several points:

• When your parent is sick, the traditional roles of carer and caree blur. This has become significantly truer in the last twelve months and is something I’d like to write about another day.

• When your parent is dying in your twenties, you experience a strange in-between: too young for this to be your reality, and too old to not be able to deal with it at the same time.

• “It is what it is” has some merit, some being the key word here.

I, however, retract my claim that I wasn’t repressing my feelings. I was very much in denial. In the original article, I mentioned the five stages of grief from the Kübler–Ross model: denial, anger, bargaining, depression, and acceptance. Although widely referenced, this model was originally developed from case studies with terminally ill patients describing their experiences of dying, not from people processing bereavement. Not only is the model non-evidence based but it has also been heavily generalised in an attempt to impose structure on something that is, in reality, deeply personal, unpredictable, and complicated.

I can see some advantages to the model, particularly when it is understood not as a linear sequence but as something people can move in and out of. Like many theoretical frameworks, it offers accessible language for people to comprehend and describe their feelings, it helps people see their reactions as part of a broader process, and it can open space for conversations that might otherwise feel too difficult to begin. That being said, I think it is too simple and too general.

My personal experiences of anticipatory grief are confusing and extremely non-linear. While he is now at the end of the process, having stopped all treatment, my dad has been on and off dying for the past ten years of my life. From the age of 14 to 24, I have experienced denial, anger, bargaining, depression, and acceptance, as well as guilt, anxiety, numbness, shock and a multitude of other emotions, both the more positive and the more uncomfortable.

The state I was in when I wrote the article, which, despite my reservations about oversimplified frameworks, I will call Distraction and Denial, is one I have returned to many times. While caring for my dying father in a largely invisible way, I lived in constant motion, focusing outward, people-pleasing, chasing escapism and instant gratification. By focusing outward, I neglected myself and for the most part was unable to identify or think about my own feelings or emotions.

I wrote the original article I think to firstly to convince myself that I was fine, and secondly so that I was, in some capacity, addressing what was going on without actually addressing what was going on. What I didn’t understand at the time was that I was ignoring my needs and emotions in the hope that the more I got on with it and lived life focusing outwards, the better I would feel.

The strange thing is that in this state, I feel great. My focus is pulled away from the struggles of life, and the dopamine and adrenaline highs give me a sense of euphoria. I am not just hiding my sadness from others; I am ignoring it myself. I am energised by making others happy, and by becoming the loudest, most vibrant, fun version of myself in order to do so. Never taking a minute to stop and reflect, I believe I am coping, moving forward, and getting on with life. It is no wonder that I wrote the article thinking I was successfully managing anticipatory grief, because on the surface, I seemed perfectly fine.

However, it is extremely difficult to escape yourself over the long term. Every time I overly immerse myself in distraction, denial, escapism, or people-pleasing, it eventually leads to burnout. Sometime after I wrote the article, I found myself completely exhausted, both mentally and physically, swinging between the pendulum of anxiety and depression. This wasn’t only because of what was happening with my dad, but because of how I had been coping with life. Distraction had worked as a survival strategy for a while, but by neglecting myself and refusing to acknowledge that I was sad, I ended up doing exactly what I had been trying to avoid: I crumbled.

Anyone who knows me knows I am a very direct person, yet I also identify as, and am generally considered, a very positive person, which makes it difficult for me to admit that I am anything but. To complicate matters, Western society has a deeply uncomfortable relationship with death. Death and grief are experiences that, I hate to break it to you, we will all face, so it seems baffling that they remain such taboos, highlighting our larger struggle with confronting the uncomfortable.

For these reasons, I avoided meaningfully talking or thinking about what was happening. I did not want to make others uncomfortable, bring the mood down, or invite pity, which, unfortunately, through no fault of their own and as a by-product of our society’s taboo around death, were consequences I had previously experienced. More significantly, I feared that if I allowed myself to truly think about and feel sadness about my dad, I would unravel completely and be unable to get out of bed or function at all.

Ironically, ignoring it became the very reason I could not get out of bed. What pulled me out of this state was, surprise surprise, admitting to myself and others that it was hard, that I was sad and that I needed support. This is where I must acknowledge that, alongside countless other ways in which I am privileged, I am fortunate to have an extraordinary support system: an incredible family, amazing friends, and, eventually, a therapist who have helped me throughout this entire process.

Therapy provided me with a contained, confidential, and neutral space where I could feel and say whatever I wanted without worrying about burdening others or revealing too much. Being forced to check in with myself every week created a pause I didn’t know I needed. It is a place where I can be sad, talk about being sad, and have that sadness validated. Of course, not everyone has access to therapy, and the relationship between mental health support and privilege is completely fucked.

However, the lesson beyond therapy is that obviously life is not all rainbows and sunshine, and you should not feel like you need to pretend it is to yourself or others. Feeling sad does not mean your failing at life, and no matter how hard you try, you cannot and should not have to show up as 100% of yourself all the time.

Having uncomfortable, taboo, or confronting conversations is important. They help you process your emotions, feel understood and less alone, and they give others permission to speak about the sad or messy parts of their own lives. Don’t get me wrong, my dying dad is not the centrepiece of every conversation I have now. Far from it. I have actually found an enormous amount of solace in the way my friends offer me a sense of normalcy. But after burning out, I had to acknowledge what was happening and have some very frank conversations.

I think I have just had a change of heart about getting on with it. The more we allow ourselves to feel, think and talk instead of just pushing through life in autopilot, the better we will feel over time. This goes beyond just dealing with grief to all and any of life’s complications. Living life in a performative way, pretending to yourself and others that you are always happy, always succeeding in your career, always in the best relationships, always confident, might make you feel momentarily good. But in the long run, it can feel pretty awful and it does not help those around you, who may then believe they are the only ones struggling with life’s demands.

I know that what I have said may seem obvious, that I am luckier than most, and that there are far bigger issues out there. But I am going to say it anyway because I think it is important to admit that, looking back, my perspective was limited and that my opinions have changed and will continue to change as I navigate this strange little life.

I don’t have any of the answers really. As I’ve said, I’ve been through this cycle multiple times now, and each time I pick up new lessons. All I know is that sometimes we must sit in the uncomfortable and the unpleasant, feel it, and talk about it because otherwise, the uncomfortable has a way of sitting on top of you instead.