How Grief Made Me Feel Closer To My Brother

“I have a brother but he's 15 years older than me, so I guess both of us kind of grew up as only children.” That has always been my answer to “do you have any brothers or sisters?” It was a well-rehearsed line.

Now, I feel more like his sister than I ever did. Does that make sense? Very little makes sense when you're grieving, so please bear with me. 

My brother, Luke, died last September. He was 47 years old and had glioblastoma multiforme. 

The date that Luke died is contentious. He stopped breathing on 12th September, that is a fact. I know because I was there but I'll get to that. For me, Luke stopped being Luke somewhere between February 2016 and 4th September when he said his last words; which were 'ow' in case you were wondering. 

The first signs of the tumour that snuck its way into our family was what he described as a 'big bang' inside his head. He was diagnosed in the November and, following an operation, the usual radiotherapy and the chemotherapy, for two years Luke's cancer was nowhere to be seen. Except that's not really true because despite it not being there physically, it was there. All the time. It was there at every decision made, all the family dinners and every bad day. 

On August bank holiday weekend 2018 Luke had a major seizure. Our old cancer mate had returned, and he wasn't off anywhere fast. This was the beginning of what would be the disappearance of my brother. 

I want to be as honest about this as I can be. Not because I'm trying to frighten anyone but because I wish I had had some kind of foresight, to have known what it might be like to see someone you love die in a traumatic and undignified way over a number of months might be like. Because it would have made me feel less isolated. 

Image by Olivia Singleton

If we could all slip away peacefully in a chair on the beach like Barbara Hershey, we'd have nothing to worry about. But sadly, for about 165,000 of us in the UK who will die from terminal cancer, this isn't so. 

Death is scary. It can be messy and it can be traumatising. There might be strangers present, bodily fluids, there might be deafening silence or sounds that will never leave you and there can be the overwhelming sense that you've lost control of everything in your life. 

I spent a lot of time on google in the days leading up to Luke's death, trawling for information on 'what to expect when someone is dying'. There's a lot out there. 

 

- feeling weak and tired
- sleeping more
- eating and drinking less
- bladder or bowel problems
- pain
- being confused or delirious
- being restless or agitated

 

Luke started to feel weak and tired about 12 months before he died. He started sleeping more. He lost interest in his favourite foods. About 3 months before, he stopped being able to walk and he couldn't hold cutlery anymore. He lost his cognitive ability and he wasn't able to speak coherently. All of this happened so long before his last days that really, we lost Luke earlier than his actual death.  

No one person's death is the same as anyone else's and I wish I'd let that sink in before I had to see it happen.

Seeing my big brother in a bed, unable to feed himself or get himself up and to a bathroom unaided wasn't nice. It wasn't nice for anyone to see but it was even worse for him; a grown man whose little sister had to jam her hands under his head to lift it so that we could move his pillows. He'd have hated every second of it; the nurses wiping him down, the strangers watching him sleep, that fucking bed and its air flow mattress that sprung to life every 3 minutes and the syringe driver taped to his leg. Our society has a fixation on length of life but takes little heed of its quality.

"Our society has a fixation on length of life but takes little heed of its quality."

These facts, of course are just the tiniest slither of ice at the top of an enormous and ugly iceberg of losses Luke had to withstand. The real suffering he endured isn't anything I am able to put into words or even comprehend and I wouldn't be doing my brother any justice by trying to but I can promise that his strength and courage were immeasurable.

Luke died on a Thursday evening, at home in Cornwall. His wife Liz and I were with him, along with two nurses who had just arrived. It was raining outside, and I had a panic attack. Those two facts are unrelated.

Seeing someone you love stop breathing is terrifying and probably one of the worst things that can happen in your lifetime. In one finite moment they are alive and the next they are not. No matter how much they had suffered and how hard you had wished for them to go (which is totally normal and okay, by the way) nothing will prepare you for that moment. People may say that anticipatory grieving makes actual grief a lot easier, but I'd like to tell them that they're full of shit. No one gets the monopoly on grief. It is all relative. 

"People may say that anticipatory grieving makes actual grief a lot easier, but I'd like to tell them that they're full of shit."

Like death, grief is never the same for any two people, but it is painful, heavy, complicated and rough. However, in its own way (at least I believe) grief is a multifaceted and beautiful thing because it is a manifestation of how much love you have for someone. The reason I think I feel closer to my brother now than I ever did before is because his death has made me realise how much I loved him. Is it sad that it took him to die for me to realise this? Yes, but there is absolutely nothing I can do about him being dead. What I can do is try and take control of how I grieve and how I can shape my relationship with him in the future. I'd also like the state at this point that I haven't forgotten what an arse he could be sometimes. It's very easy to paint someone in golden light once they have died but he wasn't an angel by anyone's standards and that can throw some complicated feelings in the mix. 

"The reason I think I feel closer to my brother now than I ever did before is because his death has made me realise how much I loved him."

One of the things that hit me hardest was realising that my brother wasn't just a member of my family. He wasn't just my brother, my parents' son, Liz's husband. He was a person in the world; he was a friend, a colleague, a neighbour and a mentor. He had an impact on people far beyond my knowledge and when I turned around at his funeral and saw the crematorium packed out with people unable to get inside, I saw how much love he encompassed, how many people he meant something to and that my loss was their loss. One of the hardest things I have had to face is the pain that losing Luke has caused the people I love and accepting that I can't take that away or make it easier for them. We are all in it together. Luke's death has brought new people into my life and given me a chance to get to know him. It isn't a substitute for my brother but it's the best that I have and by talking about him and making space for new connections, I am carrying him with me and keeping him alive.

For what has probably been my entire life, I have suffered with anxiety. I didn't realise I was anxious until about 5 years ago and I started trying out ways to cope with it. Of all the things, the ones that have helped me the most are talking and medication. Everything else, for me, was a supplement, but these two actually got to the root of my issues, which turned out to be partly chemical. There's no shame in this. If you have diabetes you take insulin. Mental health should be taken as seriously as physical health and we're getting there but there's a lot of work to be done. 

My experiences and management of my mental health, I think, have put me in good stead to cope with grief. I am tackling it head on and by that, I mean I am talking about it and I am practicing self-care, It also helps that I am an unreserved over-sharer. The most important advice I can give is to check in on yourself and be kind, get enough sleep, eat well and take light exercise if you can. 

"The most important advice I can give is to check in on yourself and be kind, get enough sleep, eat well and take light exercise if you can."

I have a solid group of friends around me and I work for a company who are empathetic and understanding, but I am no stranger to that wave of discomfort that washes over people's faces when you talk about death; some people are just not comfortable with it. You might find that some people drop out on you because of it. Unfortunately, you can't force people into chatting about things they don't want to, no matter how hard you want to shout at them that 'ONE DAY SOMEONE YOU LOVE WILL DIE AND YOU MIGHT WANT TO TALK ABOUT IT'. But if you do want to talk about it, find the people that are happy to do so and they are there, I promise. If it isn't your friends or family, there are groups all around the country for people experiencing grief. Your doctor can give you information on bereavement counselling too, if you think that might help. I, myself, am an avid subscriber to the Griefcast podcast, which provides a (light-hearted) weekly insight into other people's experiences with all different kinds of loss. 

If you know someone who is having to navigate their own grief of some kind, whether they are fresh to the club or a longstanding member, check in on them from time to time; remember birthdays and significant dates, send them a text, talk about their person and try not to worry about upsetting them because the worst has already happened, believe me. If they don't want to talk about it, they will tell you. Death is the most natural thing that happens to a living being. Next to birth, it is the only certainty in any of our lives and so now, having seen it myself, I am left feeling frustrated as to why we find it so difficult to speak about and why it is such a taboo. 

I don't expect to feel okay about Luke dying; there will be milestones to pass and times when it feels larger than me. Eventually the day will come where I will be older than my big brother which is a reality that is both absurd and difficult to get my head around. I know this is something I will have with me forever and I know it will change with time but it's mine and I'm not scared of it. I let it breathe when it needs to; I cry, I feel sad, I feel angry, I feel jealous, but the most important thing is that I feel and I'm here to talk about it.

Written by Kate Alice

 

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