An account of my thoughts and feelings about having a genetic disease. Von Hippel Lindau disease, VHL. Not necessarily factual but real all the same.
My first was my gran, my mum's mum. I was 8. I didn't go to the burial. It was very white and I sang all the hymns with pride because I knew them all. But I couldn't finish The Lord's my Shepherd which I remember every time I come across it. I don't remember a wake.
I must have gone to Great Gran Doherty's - don't remember. She was formidable in life.
And Great Gran Jessie who would have been a number of years later. I met some family I didn't know existed, And I still don't as their names and faces are lost to me. Both my dad's one from his original mum, one from his dad. These felt rather routine.
I might get the order wrong after this - but I think my Uncle's wife Jane. I was young - if I went at all because I don't remember.
Conrad, my brother - I was 17, he 22, in our Church at home St Peter's and I didn't feel right in the wrong bit, we always sat in Jesus's right arm. I know that we sand Bread in Heaven. Then the crematorium. Both packed, too crowded to know who was and wasn't there. The wake at the Pier hotel. My uncle came over from Australia.
Next - Laura, the big sister of a boy I very much liked before, Michael. I'd been his plus one at her wedding. She died of an asthma attack, she was too young. Same church as my brother, the right arm though and I cried like she'd been my best and closest friend, almost overwhelming - my thoughts mainly on how I could get out. I don't recall where we went after that. I think I was about 18
Uncle Hugh, stood up and died so the story goes. Burst aorta - I don't remember much of the service but I do recall going to the grave, it was green. My cousins all there I think.
My nephew - the tiny coffin, held on his father's shoulders. The pain on my sister's face and the heartbreak from us all, looking at his name appearing next to his uncle Conrad's. Poor little Jake. No wake - I don't think, just pain and tears.
My grandad on my dad's side - I don't remember very much of it at all. Heart attack - small mercy he had altzimers. I recall it being a sunny day.
Collette - oh that one was really hard. It wasn't long after I had been told the kidney cancer was there and the operation would be tricky. I had taken that to mean I might die. I couldn't help bawl at hers. I once again found myself almost inconsolable. She was my mum's best friend. I loved her deeply and truly. Her coffin was wicker, it suited her nature and her hair. She died of brain cancer. She deserved a kinder death.
My husband's step grandad - Sid. A humanitarian one, his granddaughter so totally bereft I was almost shocked, in fact I think I was, an old man had died and he really was an old man. He was spoken of very fondly of. A wicker casket. To be buried under a specially chosen tree. Despite the hurt around, I felt this one was joyous.
Uncle David - my Aunty Scrag's partner, there was a fair amount of laughter at his, he knew how to make people laugh. I think he requested ring of fire for the curtains closing. He died of cancer. His wake was at a rugby club, I had been there before - in a much nicer dress. My sister told me she had voted Brexit while we stood at the bar. The buffet was mostly made up of beige things that I love but my husband (vegetarian) couldn't eat.
A student- I wasn't allowed to the burial, my first experience of a Islamic ceremony and as a woman I was not permitted to very much. Neither was her mother or any other female in her family and I found that almost unbearable to know and acknowledge. Less than a week later I thought the next funeral I would go to might be my own.
My gran, my dad's second mum. She was so pleased she was going to die, she didn't really want to keep going. I think life bored her, she didn't take a huge amount of pleasure from it and when I heard she died I was genuinely happy for her. She just wanted to stop but wouldn't do it herself. Pancreatic cancer gave her a swift and welcome end.
I've missed one - I don't quite know who except I do recall the wake - my mum and her sisters taking pictures. I thought it slightly vulgar, but now I know that it was one of the few times they all got to be together. The eldest of them died my second Christmas in Malawi. Wonderful aunty Mary. Before COVID had shown us all how to mourn remotely.
Then the online ones.
First my uncle Ken, done well, we all saw it through the peculiarity of COVID. My dad's words spoken for him.
Then my not actual uncle but felt like it - Tim. Online - catholic and not such good production values. I had a better idea of what being online would mean. I didn't wear black but I did walk out of my room and into the kitchen back to normal life.
My dad was next, we sat on my sofa, the three of us, and I heard my words spoken by my sister, watched as my eldest niece almost collapsed, watched the back of my families heads only guessing at the words they whispered to each other. We, my little family of three held each other tight and I marvelled at how my sister could be so composed. I arranged a wake of my own after that.
2 more while I was in Africa. This one a colleagues Gran, she didn't want to watch alone and as she was a catholic we sat in her living room, looking at the dead. The eulogy, as she predicted was extraordinary long, odd and rolled into the wake staring before the online mass had concluded. We all had a blood good knees up, and I know her name was Veronica because I insisted on playing Elvis Costello's version and along with her granddaughter we sang it several time at the top of out lungs.
The last online one was Ros, wife of Tim. I thought Catholic again but the celebrant was female, so I wasn't sure. The eulogy was her reading out the words from a card I'd sent to her nieces (they didn't have children) I was very proud and moved that they had treasured it enough to have that spoken to all who gathered and slightly saddened that on one 'closer' to her had words of their own.
Back in blighty, my uncle Michael died, before I had taken the trip to see him. This was the first funeral I'd been asked to do anything at. I was dreading it - I am what many would understand as a wailer. I could be hired out. I will cry movingly and deeply. As you can see I mourn a number of people. There's a shorter list of people who I didn't get to online or otherwise. A catholic requiem, I spoke the responsorial palms - The Lord is my Shepperd. You can see why that was a toughie. Uncle Michael and I shared a love of theatre so I wanted it give it meaning, I spoke it clearly holding back the obvious grief. I performed as is fitting the word of god, It was the only way I was going to get to the end. I sensed it was a little more felt than my very British family expected, no one mentioned it, I did it. The wake, a little cold, the spread simple. He was buried and we headed to the grave side, stood around. I don't know why but I decided not to chuck a handful of dirt on his coffin. Seemed a little disrespectful
Alice - the most recent (until Tuesday) in the same crematorium of my father and brother. My mum spoke, she was my dad's goddaughter. She had taken her own life. She had practiced, like Daren did. She meant it too. Her family, people I grew up with, her dad my dad's best friend. I didn't make it to his funeral, I don't know why I didn't go because I'm sure I could have gotten the time off work. But it felt like a year I couldn't do another one. Her wake was very small and at our house. My mum 'hosting' it. We sat in rooms my dad had been in, we spoke about all sorts and nothing. Exhausting.
I may recall some more that have faded for reasons I don't know today. The reason for this list - because the next one is going to be one of the hardest. My daughter's first live gig! Galo's humour.
Making it 22. An average of roughly one every other year of my life. Is that a lot?
And it won't be the last will it. I am thinking of the ones to come, the grief and pain. The purity that go with some of them. But not this one. This next one will be painful and one I wouldn't never have predicted for now, I assumed he's attend mine.
There are some issues around my Daren's no will and he'd only really talked about it with his partner and his family don't seem to want to take that in. He wanted us all to know it wasn't our fault and we couldn't have prevented it. I believe him but I hope it isn't always true.
There's a funeral I dread attending more than anything else in the world. I don't dwell on it too much much becuase if I do I fill with a shakingly visceral fear that it might happen.
The words on the page, the drafts and the post-it notes. All trying to comfort us and give an explanation. He needed us to know we couldn't have done anything. He needed us to understand and I don't think everyone can or ever will. But I can. I'm sad, I miss him, I, like we all do, expected more time.
I expected to feel more when I read it but I just wanted to talk to him about it, Ask him questions. And a bit of me wondered if maybe we were all mistaken and this was a song. The lyrics to a song. A song we would perform together one day. That's what we always did.
Maybe it's because our friendship was a distant once know, seeing each other when we could, that the time between face to face could be vast. Well COVID was the second most vast, the wife was the longest - she didn't approve of him seeing me. She really didn't get it, she didn't last.
I hope he knows I'd understand, going to see his partner yesterday was an act of friendship for him. He would be so upset to see the upset of others, especially those he loved. A small act of service to him.
We couldn't have changed it, over and over, note after note, he just couldn't face being alive. He didn't believe he could be himself, couldn't believe we would love a different him and that something was wrong with his brain. He was right in a way, because anything that made him feel like he couldn't be here with us must mean something was very wrong.
I text him on Saturday, I was at a gig, live music, watching bands always made me think of him. It always brought back such joy and memories of us laughing and creating, performing and teasing each other. We wrote so many depressing songs, we felt the hurt of love so deeply, the disappointment of being let down acutely. And together we made something relatable and really fucking good. I grieved for those days many times. I had a small hope that we would reunite one day, do our stuff together again. I did not see this end.
Today I found out a little more of my Daren's last days and how he took his life.
Perhaps it will help me process this, but right now I am not sure. There is a letter, one that was for all of us. There are drafts too I'm told, post it notes on how to look after the animals left behind. It was no accident, no cry for help, no whim. He really needed to not be alive anymore -that's what he must have believed.
We all feel some kind of responsibility when someone does this but we don't if someone has cancer or a tumour - and this was an illness because my Daren simply would not have left us with this pain if he felt he had a choice. I don't believe his actions were a choice. He was very ill and it took his life.