Viral Encephalitis – Nicholas’ Story – 5 years on

Nicholas died in July 2018 after a tortuous battle with Encephalitis over twenty years, which affected his mind and body; he was only 36 years old.

As parents we have had to deal with the fact that our only son died before us and the impact and grief that followed not only for us but our daughters, grandchildren, family and friends.

Grief is intensely personal and we all have our individualised journeys. But when do we stop grieving? Do we ever stop grieving? And is one person’s grief more valid than another? Do parents grieve for longer and more intensely than siblings, grandparents or others? The answer is “I don’t know and does it matter?”. But for the outsider there is the inevitable question of how long do I keep asking “how are you feeling today?” Is it one year, eight years or a lifetime? For me the answer is ‘please, keep asking me’ it means that you haven’t forgotten Nicholas; for others perhaps it’s too painful to come up with an answer each time. There is no ‘right answer’.

Grief is not linear either, you don’t work neatly from one stage to another, it’s more of a messy, jumbled, doodle diagram, whereby you hopefully work through your emotions and eventually come to some sort of acceptance and ability to manage your own life. However, the path is bumpy with dead ends; sometimes you think that you are almost a bit further down the line and ‘bang!’ something knocks you sideways and backwards. It can be the smallest of things a family photograph that no longer has Nicholas in it or a grandchild that cries because she doesn’t remember Nicholas clearly anymore; she was only three when he died, but calmness, talking, reassurance and printing of a picture of them both together allowed her the space to remember two specific memories and lessen her grief. Sometimes you have to bury your grief and emotions to facilitate others to grieve; it’s hard.

I have likened my grief to ‘a physical hole in my heart’ one that changes in shape and size dependent on the time of year and sometimes my emotional wellbeing. Albert Gyorgy, a sculptor portrays the void that grief leaves within us, following the death of his wife. It’s situated at Lake Geneva, Switzerland and aptly called Melancholy. This represents exactly how I feel inside; still functioning but with a void. Yet, I manage to live a life and look no different on the outside.

 

How far have I come in five years?

We had twenty years knowing that this day would come but not when, the first day of his illness we were told he probably wouldn’t see the morning.

I haven’t reached the point of the acceptance of Nicholas’ death but I know it’s real. I have travelled through shock; missed out denial and bargaining; was angry on his behalf; fell down the ‘rabbit hole’ of depression which led to counselling, it felt like Alice in WonderLand standing at the top of the rabbit hole and spiralling down without knowing when it would stop, and, I have processed his death.

I’m unsure whether total acceptance is possible; I birthed Nicholas with the thoughts that he would flourish, grow and become an adult with endless opportunities, health and happiness, but sadly that wasn’t to be.

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Sarah shared Nicholas’s story at My Brain: My Story 2022.

Find out more about viral encephalitis here.