My dad died when I was at uni

Kate's father was diagnosed with Wilson's Disease at the age of 46, having lived a happy and healthy life up until then. She tells us how she coped with her dad's sudden illness and subsequent death.

True Stories

"I didn't get back in time"

The illness

At 18 years-old I found out my Dad had Wilson’s Disease. This is a rare genetic disease where copper builds up in the body and spreads to the liver, brain, cornea and kidneys. Without treatment, Wilson’s disease is usually fatal by the age of 40, but if treatment begins in the early stages of the disease, sufferers can live a normal length and quality of life. Tragically for my Dad, the illness lay dormant for too long and six months after his diagnosis, he’d gone blind and was on the emergency liver transplant list. Two false alarms later and three months of waiting, they finally found one.

The operation took longer than expected and he was heavily sedated, but he’d come through it! Dad always said he didn’t want us seeing him straight away, so I was going to the hospital that weekend. A day after the operation, my uncle asked me to come home from university and help out my two sisters. I couldn’t understand why I had to leave so soon when I had a ticket booked for the weekend, but when my uncle insisted, a spine-chilling feeling ran down my back. I scribbled out a note to my housemates and sat stony-faced on the train for four hours, unable to imagine the enormity of what could happen.

The day my world came crashing down

I didn’t tune into the phone call my sister was having, but when she turned around to face us I saw the colour drain from her face like a photo that had faded in the sunlight. Grey. She said the words: “He’s died” and walked towards us in slow motion as we held on to each other in utter disbelief having learnt our father hadn’t recovered from a cardiac arrest he’d had during the operation.

I can honestly say I never thought we would lose him. Not ever. Three weeks after he died, I remember an evening I thought he was still alive. A friend who came to stay had written herself a note on my pinboard to remind herself to ring her Dad. I felt like I hadn’t spoken to Dad in ages and had loads to tell him, as I said excitedly; “Oh has my Dad rung?!” But as I saw the look on her face, I realised in a crushing blow of utter devastation and embarrassment, that no, he hadn’t.

I couldn’t believe I’d forgotten even though every morning I woke up crying after a split second of thinking everything was normal I’d realise, wham, it wasn’t. I’d forgotten even after the day of the funeral when I walked into the cold hall with my feet feeling unattached to my body; catching sight of the coffin and being held up by unknown arms to get me to the front row of seats. My throat raw from crying, my eyes stinging and my face throbbing as the grief poured out of me uncontrollably. Being physically pushed to the front of the crowd of mourners as Dad’s coffin was lowered into the ground forever and walking arm-in-arm back to the car park where I’d stood in disbelief that this was the end for my Dad.

Trying to move on

The next few months passed by in a blur. I cried most days and on days I didn’t feel like crying, I felt so bad for not crying that I cried anyway. The strangest feeling in the time following Dad’s death was the resentment at the months that would pass. When it went from one month, to five months, then eventually to the dreaded yearly anniversary, I almost wanted it to be just a few weeks since the day we were told the news. This wasn’t because I wanted to re-live those immediate dark feelings, but because the longer time went on, the more I had to face up to the fact it was real. He wasn’t coming back; it wasn’t just an extended business trip. I would re-read the dozens of sympathy cards I received with all the lovely words of comfort and stories about how they remembered my Dad. I don’t think people realise how important those cards are to you if you’ve lost someone.

I believed that as the talk of Dad’s passing subsided, people would think that I would be getting over it. It was the exact opposite. As time went on it felt worse, I missed him like crazy. I couldn’t even look at photographs of him because I didn’t want to look into his eyes and know at that moment he’d never have known what short life he had in front of him.

Friends would say how well I was coping and how they would have cracked under it all, but they didn’t see my moments alone. I carried on for the sake of my Dad. I felt he was around me all the time and that he would be ashamed of me if I didn’t finish my degree. I would have conversations with him in my head and at times of deep turmoil I would beg for him to come and sit with me and give me a sign he was still there for me, but it never came. I just had to hope that there was life after death; that he wasn’t feeling the devastation that we were feeling at his sudden passing, and most of all that he was at peace.