Saturday 8th August
Today would have been my brother, Tom’s, 40th birthday. Tom was born with Prune Belly Syndrome, a very rare birth defect that mostly affects boys. His abdominal wall muscles didn’t form properly, he had issues with his bladder, damaged kidneys and had over 30 operations during his short life. I was asked in therapy on Tuesday how long I had been a child carer for and when it started. All I could tell her was that it was for as long as I could remember. There was no starting point. Only an end point when care was no longer needed because he died. I had to explain to her that I spent my childhood in and out of hospitals with him. Always there to keep him company, keep him distracted from the pain and to comfort him when his veins collapsed and they couldn’t get bloods the normal way. I was always there by his side when he woke up from an operation. Always there on the day he could finally come home. I was there to ensure he took his many, many medications each day and I was there to sterilise equipment and catheterise him several times a day, or help him empty his bag when he started using a more permanent system. I was there to flush out his bladder and there to change his nappies and clean his bum and help him off the toilet. I was there to ensure he didn’t drink more than 500ml a day, and later after the transplant, to ensure he drank more than 2 litres a day. I was there to watch what he couldn’t eat and what he could. Whatever he needed to do, I was always there holding his hand from as long as I can remember right until the day he died on 23rd January 2010. My therapist asked about all those hospital trips. I explained to her that as a child, I watched many children die. They never died right in front of me, but they died. I would go to the dialysis unit one day and see them, the renal friends I had made, and then they just wouldn’t be there the next. They would die waiting for some sort of transplant. Some needed more than just the one organ. The youngest I remember was a little boy called Cash. He was 5 when he died. I took home the picture he had drawn for me that day and I sat in my room feeling so very lost. I would leave with a heavy heart, never actually being spoken to or comforted by my parents about it or about death. But I was raised to believe that Tom would probably never make it long term. He had already surpassed all of the doctors’ assessments and opinions. He was never supposed to get to 23. There were maybe 3 times in our lives together, where it was really serious and I was told he might not make it. But that was the thing about Tom, he was always a fighter. And always with a smile on his face. The fact that children around me kept dying, only reiterated to me that one day my own brother would.
I don’t usually talk about Tom’s life in this way on his birthday. I usually save that for his anniversary as I try to be more celebratory about his life on his actual birthday, but this year is hard. The past few weeks have been super difficult for me for other reasons, and so I haven’t been able to prepare myself mentally for the lead up for today. I am only able to grieve my lost loved ones twice a year. Birthdays and anniversaries. It’s the only time of year where my body and head will let down all defences and allow me to feel, feel absolutely everything. It’s the only time of year where the tears can flow freely and my heart can ache without judgement or constraint. The rest of the year, everything is tightly wound down, packed into a little box and pushed to the very deepest and darkest corner of my heart. To a point where it’s almost as if they never existed at all. My therapist says that my brain has done this so I can survive. She told me it’s not that I am too cold or too hard, or too anything. It’s that my brain cannot cope with it all, and so it has to shut certain things down to compartmentalise and help me disassociate. People often give me a pat on the back to tell me well done for how strong I’ve been over the years, but the thing is, it costs me dearly. Every layer of trauma, every life-altering situation, hasn’t made me stronger for the better, it’s made me worse. It strips away another aspect of my identity and my brain has to work even harder to protect me and to keep me going. At times of severe emotional distress, I get so easily confused and can’t work out the most basic of things. My ability to function properly reduces significantly, in part to the severe insomnia that then kicks in. When Tom died, I was only just keeping it together after finding out my dad had been murdered the month before. Losing Tom not only made me fall apart, but it altered my life and who I am entirely. All I had ever known was caring for and loving this disabled child. So much of my own life was attached to him, even in my teens or as a young adult. I would stop everything to go there to be with him when my parents wanted to swan off to the other side of the world. Without Tom, who even was I? When he died, there was such a huge hole in my heart from where he had once been a part of. Whilst I don’t think people generally recover from losing a loved one, I think they just learn to manage their grief differently whilst they continue with their lives, I don’t think I ever managed to walk that path. Tom and I were so deeply intertwined, and it is so difficult for most people to understand, because to me, it wasn’t that I lost a sibling, it was so much more than that, and I have never found the words that can describe what and who he was and is to me. I loved him so much. And I am struggling not to unravel saying it. But I really did. The therapist reminded me that I am who I am, because of him. I know he very much moulded me and that certain parts of my personality are because of him.
You know, I know people mean well, but telling those who have lost someone to an illness that ‘at least they aren’t suffering anymore’, is meant well and out of kindness, I don’t think they realise the true meaning behind that. It is something I don’t think I have ever used for anyone. Deep down, I feel that, whilst it is probably not the intention, you are actively telling a person who has just lost someone they love, that their grief is not valid. That they shouldn’t be feeling what they are feeling. It’s a guilt trip, because you are then questioning your feelings and trying to reason with yourself because had they have survived and lived, they would only be in pain. I fought with myself a lot over this in the earlier years. I felt I should have been more accepting over losing him precisely because people were telling me this. It made my grief feel wrong, made me feel guilty because obviously I wouldn’t want my much loved brother to suffer in pain for even longer. But with Tom, we will never really know what the future would have held. He had always surpassed all of the medical expectations and was himself a bit of a medical wonder. Even now, whenever I have to mention his condition to a new gp, they are fascinated and want to know more. I am of the opinion, and it’s highly controversial and damaging to her, that my mum accelerated his death, whether she realised or not, meant to or not. Tom was always under specialist care. When we lived in Bournemouth, he went to Guy’s hospital in London, because local hospitals don’t know what to do with him because he is so complex. When we moved to Germany, again, he went to a hospital that had specialist consultants to help with his care as they had a better understanding of his needs. When my mum moved him with her to Plymouth so that she could be with Graham (the man who killed my dad), she placed him in the care of Derriford hospital, a local hospital. He died a year later. She never explained to me why she didn’t return him to Guy’s or another special hospital that could offer specialist care. Staff at Derriford gave up on him fairly quickly. I will never really know if it was truly his time or if a significant chain of events led to his death.
Unfortunately, Tom didn’t have a peaceful death like a lot of people get when they are receiving end of life care. Like most though, he dropped off a cliff two days before. He suddenly couldn’t speak anymore, couldn’t move, stayed in his hospital bed in the living room and was pretty much unresponsive. It was during this time that I was cornered upstairs by Graham’s sister, demanding to know why I wasn’t doing more to save my brother from his impending death. Why I was just standing by and accepting it. I never accepted it. Because to this day, I still feel he should still be here. As if this wasn’t crushing enough. It was now my fault. Tom hung on an extra week than was predicted by the doctors. I had been sleeping on the sofa next to his bed every night. This particular night though, I sat up tired and noticed he was sat up looking at me. I told him I’d read more stories to him the next day. He smiled at me. I closed my eyes and went to sleep. But I was woken by the nurse and the sound of him panicking. The nurse seemed unsure what to do. I was by his side and I could see his eyes wide open, his voice was like something I had never heard before, and then I saw his heart, which had become normal to see it beat from the outside of his chest. It was beating so slowly. I screamed, I screamed so loudly. Everyone came rushing down. Including my dad’s murderer, who stood by my side as I watched my beloved brother die in front of me in the most distressing way possible. All I could say to him was that it was ok, that he didn’t have to wait anymore, that he could go now. Every word killed me that little more. And I kept looking back to his heart beat, then back to his face, back to his heart again, then back to his face. Until I couldn’t see his heart moving any more. Until he stopped blinking and his eyes just stared across the room. I waved my fingers under his nostrils, convinced he must still be breathing. And then I stayed with him. Someone, I’m not sure who, pulled the cover over him after closing his eyes. Everyone went back upstairs, but I, I couldn’t. I sat on my knees in the middle of the room across from his bed, staring at his body. For 8 hours.
I stood at his funeral 3 weeks later, with fewer than 10 people there. All were members of Graham’s family. It was just me, my mum and my other brother. It was something I think I have always struggled with. The amount of well wishers and condolences we received in the aftermath of Tom’s death was huge. Yet, no one came to pay their respects, to say goodbye or to support us during one of the worst times of my life. What’s more, every single person knew we had just lost our dad to a murder the month before. It was a real eye opener for me. Tom deserved so much more. Since his death, I have had a few people leave well meant comments online to me to tell me how fond they always had been of him. How much of an impact he had made in their lives, and yet, I questioned to myself that they didn’t come. They didn’t do the one thing that really mattered. I don’t accept discomfort. I am fed up of people telling me how some might feel awkward or feel it’s too morbid etc. A funeral is not a happy place, we don’t go there for shits and giggles. And no one, I mean no one, could feel worse than those standing on that stage saying goodbye. Trying to keep themselves together enough to be able to get through to the last line of that poem. Because they know that if they don’t hold it together up there, if they cry, if they crumble, they won’t get back up again. They will sink to that floor and stay there and they will be consumed with their loss. Not a single one of my friends came to support me. Came to hold me up. Came to hold my hand. Came to tell me it would be ok. Came to hug me. It is a disappointment I have carried with me ever since. And so, when people tell me how strong I am, how amazed they are that I have managed to get through so much, I ask myself, what bloody choice did I have? Because no one came. I had to become strong from the moment I had to report my dad missing. From the moment I was told of his death. The moment I was interviewed. The moment I knew my brother was going to die. The moment I saw him die. The moment I had to start planning two funerals. I want to scream WHAT BLOODY CHOICE DID I HAVE?! but I don’t. I smile and do the done thing of saying thanks. And every time I had to be strong, another part of me got locked away, lost in an abyss somewhere.
When I left my therapist this week and started walking home after talking about Tom, my childhood of hospitals and other children dying, I could hear myself screaming. I was walking down the street but I could see myself and hear myself screaming. Screaming all my emotions out. Screaming away the sadness. Screaming away the heartbreak. It’s the first time it’s ever happened to me. Today, as I walked into town unsure of where to go on Tom’s birthday and what to do with myself, only knowing that I had to get away from the house because of all the heartache there is at home, I saw him. I saw that scene with his body covered with a blanket on his bed. My brain giving me flashback after flashback of the same scene again and again and again and I felt it all. I felt exactly what I felt in those 8 hours I stayed with his body. I felt like I had been winded each time. Felt like my breath had been taken away. I don’t know how I managed to keep walking when all I wanted to do was to collapse on to my knees on to the ground and sit there screaming. I can feel the cracks appearing. I feel like I am splitting and it’s getting harder and harder to keep myself together. The last three weeks have broken me in a way I’m not sure how to manage. As I walked to town, I walked over a bridge. I saw all those cars below me on the dual carriageway. And for a split second, I wanted to jump. For a second, I wanted all the pain, old and new, to finally go. Because what I have always known is that peace will only come when I am no longer here. But I can’t and I won’t. Because my children are what keeps me anchored here. They are my purpose. And so I have to carry on masking. Carry on telling everyone i’m fine when all I want to do is scream and cry my pain away.
I didn’t want to write such a depressing post today. I wanted to be able to celebrate him and his life, which is what I ordinarily would have done. But things are really difficult for me lately and I’m really struggling. I always want to be honest and write from my heart and my heart isn’t ok lately and right now, I’m not sure if it’s ever going to be. I’m so exhausted from everything being so difficult.
N. x
