We’ve all heard the saying ‘there are three guarantees in life: life, death and taxes’. Everyone talks about the former and the latter but ignores the inevitability that life does end. On 1 May, which was Eid al-Fitr, a day to commemorate the holy month of Ramadan, this was a particularly significant day for the Khan family this year. Whilst others spent their Eid enjoying the festivities, food and exchanging gifts, we spent the day at the cemetery burying the youngest member of the family – Kasim.
In the few months that have passed, the immeasurable grief has become purer as we adjust to this version of reality bestowed upon us. After the initial outpouring where my parents were extremely well supported, this began to wane away. A week or so after Kasim passed away it hit me; sibling grief is rarely spoken about.
If the pandemic taught us anything it’s that we are a grief-illiterate society. Whether it has been through dismissive ableist rhetoric by politicians or the veneer of ‘freedom’ that has led to the shrugged shoulders look whenever someone mentions that we have the highest Covid-19 death toll in Europe. We are terrible at holding these conversations, often out of fear of getting it wrong. Yet, that has never deterred me. I want to remember Kasim and will continue doing so because someone out there will be glad that I have shone a light on something close to their heart.
Kasim was the youngest of three brothers. He was softly spoken, articulate, calm and composed. He loved football and Liverpool was his team. Kasim was a massive fan of trying new restaurants and places to eat. Most importantly, Kasim loved his mum. The bond he had with our mother was beyond comprehension.
Put all the superlatives to describe your ideal friend, son, brother or colleague. Kasim would have embodied every single one of those traits.
As 2022 started with a wave of optimism, Kasim began to feel really poorly in January. A lump on his neck, which we all hoped was tonsilitis or a long-Covid symptom, we found out was lymphoma in February. Praying it was not Hodgkin Lymphoma, a few weeks into March Kasim was diagnosed with acute leukaemia. With no family history of this illness and doctors giving us their assurances he would make a full recovery, Kasim was admitted into hospital on 18 March. With Ramadan approaching and hospitals being so cautious with rising Covid cases, my parents took it in turns to stay with Kasim.
We learn to accept that through life’s natural course, people older than us will die before us. But when it’s someone younger than us, it’s something we cannot comprehend. It breaks us. t is unthinkable and leaves behind the hollowest feeling. After three months of soul searching, here are a few things I have learned since my younger brother died.
Sibling grief is forgotten
As co-authors of a unique co-history, there remains a lack of research and therefore lack of support for people when they lose a sibling. Adult sibling grief requires its own set of bespoke resources but there appear to be few places for support with this specific type of grief. Not only are we the forgotten mourners at home, but we are also forgotten in terms of being supported by society at large. I found myself turning to several charities after Kasim passed away but they didn’t seem to have what I needed.
All grief matters and needs carefully tending to. No two people grieve the same way and for me, the lowest hanging fruit is to simply say ‘I am sorry to hear about your loss’ and give them time and space.
Sibling grief is often overlooked and this means our trauma, feeling of guilt, regret and memories with our deceased loved one are relegated to the periphery. When in reality, our relationships with our siblings play a central role in our childhood and adolescence.
Inclusive by name, not by nature
The year 2020 was meant to be a year of real reflection. As organisations began to scramble to appoint equality, diversity and inclusion champions, my recent experience illustrates that there is still plenty of work to do.
I reached out to a number of organisations and gave details about the passing of my brother. One organisation asked me “when was the funeral?” In Islam, we bury people as soon as possible out of religious obligation and tradition. This meant that Kasim was buried on the same day he died. They were astounded when I explained this over the phone to this charity. The person on the phone said “how is this possible?” followed up with “are you sure that’s what happened because it was a Bank Holiday?”
Even in grief, prejudice rears its ugly face. No unconscious bias training can change the lack of compassion, empathy and understanding that was on display. Again, this was not an isolated event. I used social media to find grief networks and again, as a person of colour, I was met with either no response or deeply invalidating comments.
In grief, we are already in the darkest place in the world. When those who can offer help turn us away, it exacerbates our sense of loss. I appreciate grief is threatening and challenges the normality that we take for granted, but there is still so much work to do to make grief spaces more inclusive and accessible for all.
Filtering empty relationships
Kasim passing away was certainly a wake-up call for me. I had often invested so heavily in one-way circumstantial personal or professional relationships. You see, losing a loved one breaks your heart but it also opens your eyes. And those two components are the vehicles for change.
After the initial outpouring and messages of condolence, a handful of people continued to stay in touch and check-in. It’s these people that will have a place in our hearts for eternity because it takes darkness to really see who is really besides us. I have become more energy conscious and exerted my focus on these relationships and in doing so, began to filter out those who were unable to accept the updated version of me.
We become different people are the loss of a loved one. Grief changes us and not everyone will be able to comprehend these changes to our persona. And do you know what, that is fine as there are plenty of people who will accept you and love you through your trauma and pain?
Learning to let go of these empty relationships is empowering.
Take your time
The busy trap works for some people. They are happy to return to routines, crack on with their job and being busy acts as a distraction for them. However, in no way shape or form should this become normalised or an expectation for every person who has returned from compassionate leave.
I watched my little brother take his final breaths and then hours later we were performing ghusl (full body purification) and then burying him. To think that ten days were enough to process what had happened and then suddenly return to work as if we can arbitrarily heat and freeze our trauma when we wish is absurd.
Rushing back to work can cause delayed grief. If you are unfit to work, why return and be unable to fulfil your role to the best of your ability? There’s an overriding misconception that compassionate and sick leave involves people sipping cocktails by the beach. There are connotations of being ‘workshy’. This is far from the truth. If you’re not fit to work, you’re not fit to work. Your body is telling you to take a break, sabbatical or hiatus, in my case, after a traumatic event. Being busy is merely a distraction and not a solution, and we need to carefully distinguish the two.
Compassionate leave shouldn’t mean that empathy and support ends after you’ve adhered to the company policy. Compassion must be extended to accommodate this updated version of your colleague who has experienced the most unimaginable pain. During this time, we attend appointments, visits counsellors and engage in self-care. This time is precious to our healing. This time we aren’t afforded when we are at work.
Please remember that being busy doesn’t inherently mean we’re okay or ‘over it’.
Kasim’s life has taught me so much. On what would have been his birthday (28 August) I am publishing my debut collection of poetry to honour him. With all royalties going to charities to support blood cancer research, Small Circle, Big Heart is for us – the unforgotten mourners.