Nicholas’ story

Nicholas was our eldest and only son, with two younger sisters (writes mum, Sarah).

At the age of 16 years, Nicholas was struck down by a completely random virus, which caused encephalitis and subsequent brain damage. He was in intensive care for a long while and had to learn to walk, talk, eat, read, and basically live, all over again. Nicholas’ mental age never fully recovered, and he became the perpetual teenager in his thoughts and actions.

As a child he was cheeky and mischievous, with an amazing wicked sense of humour which he never lost. He loved martial arts and won medals for this; this ignited his passion for Buddhism, Tai Chi and meditation in later life. He adored animals and life itself. Nicholas loved melodrama and had a wealth of knowledge about cinema films. He wanted to be a paramedic.

The damage from the encephalitis was severe; resulting initially in episodes of severe psychiatric illness, schizotypal personality disorder, epilepsy, severe migraines, high blood pressure, hypothyroidism, stomach ulcers, learning difficulties including poor memory, word-finding difficulties, poor concentration, poor comprehension, and in more recent years to diabetes, cataracts, tinnitus, partial deafness, poor mobility and most recently problems with his pancreas and liver. This led to him suffering with ongoing mental health issues because of all that he had to cope with.

Encephalitis robbed him of the normal pathway of life; ravaging both his mind and his body. There is no doubt that life for a lot of the time was a struggle for Nicholas, as he remembered how well he was before the encephalitis; with his whole life ahead of him. We know that he dearly loved his two sisters and was so proud of their achievements and their ability to live life to the full, albeit a tad jealous as he too would have loved to have been able to achieve the same. Nicholas had infrequent and short periods of reasonable health, he passed his automatic car test, and motorbike test, first time, and during well periods found great pleasure in bike riding, sometimes with his dad Julian. The downside was that this would often be followed by days in bed as his brain needed to recover from the exertion of the concentration.

It’s difficult to quantify but encephalitis had a profound effect on every part of Nicholas’s life and our life as a family. Nicholas required 24-hour care and supervision for 20 years, whether from us as a family or from professional care staff; even when Nicholas was in care, we had contact with him every two to three days and received phone calls from the care staff most weeks requiring our additional input.

Nicholas was a caring, kind, warm, compassionate, generous and gentle person with a heart of gold. He never judged people, he never really said a bad word about anyone, there just wasn’t a malicious bone in his body, and he gave fantastic cuddles. These are not our words and thoughts but came from the dozens of people who knew and cared for Nicholas over the years; care staff, social workers, his consultant neurologist, and his friends. Despite his extensive disabilities, Nicholas did not want to be seen as different. He wanted to be part of family life and events; the delight he experienced at being an uncle was so profound, and the children’s non-judgemental attitude to him furthered his delight in them.

Any profound illness and subsequent disability is a form of grief, you grieve for what might have been, and the times that you are unable to devote to the other children due to Nicholas’s extensive needs; so you juggle and try to maintain family life but there is an underlying fracture that can’t be healed. Twice, when Nicholas was relatively ‘well’ we went to Florida Disney World. Those memories are so precious, as we were able to experience family events, and, since his death, we look back at these memories with fondness and love.

The death of an adult ‘child’ is the wrong order of life and thus rarely encountered. Despite being an adult in the numerical sense, Nicholas was a ‘child’ who required the intensive input of a child. Nicholas died unexpectedly in July 2018; as parents we have always known and talked about that fact that Nicholas’s life would be shortened, but we did not expect it the day it happened. How do we survive and move forward? As a family we are still working that out!

Nicholas’ Story – Five 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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Page Created: 11 December 2023
Last Modified: 11 December 2023
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