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MS ... through a child's eyes : Nikki Cooke

Nikki writes about her very difficult childhood, growing up with a father with MS whose behaviour was severely affected.


Do you ever catch yourself looking back at your life and thinking about what you have been through to get where you are today? Hindsight is such a privilege: it can soften the past and give new insight into buried hurt. For me, it's unresolved issues from past dramas that still play out in my mind.

My father had MS. From the moment I was born in 1967, my life story had different chapters to other children's. Childhood became a journey littered with painful pathways to negotiate. I became an old soul before my time... I always say having survived childhood, I can survive anything. This has been the case when faced with career challenges, a divorce and surviving the Boxing Day tsunami.

Nikki Cooke

Childhood is precious: it shapes you into the person you are. And as I've learnt, even traumatic experiences give you strength. I run a copywriting and web-design business, am married to the most wonderful man and yet there is unease within me, which I can't shake off. People think I am a tough woman, able to handle most things in life. When friends remark how affectionate and big-hearted I am when dealing with their problems, the little girl in pigtails isn't far away.

My father's illness permeated through everything. Family life was shattered, my relationship with my sister and mother was affected and I had to grow up ... quickly. Of course, there was no one to talk to about it. Back in the 70's and 80's, MS wasn't openly discussed in the way it is now. There was no access to information and as I knew no one else who had a parent with MS, a sense of isolation reigned within me. I even feared I would catch it one day.

As his condition deteriorated, his behaviour became even more extreme, leaving me trapped between pity for him - and fear of his violence towards us. He had disturbed mood swings; snarled rather than spoke; destroyed something if it irritated him and threatened to kill us if we got in his way. He became a cruel, abusive man, instead of the loving father I needed. If he fell down, lost something or soiled himself, my compassionate instinct kicked in. Despite helping him, his anger never abated. When relatives visited, he smiled and joked, much to my confusion. Behind closed doors, he reverted to being an aggressive tyrant. Life was terrifying.

Much of my childhood was spent alone. No one really thought about what I was going through. No one really considered my feelings. My older sister and mother were too busy trying to survive themselves. When social services were called on Christmas Day one year, as my father's rage led to a terrible scene, no one really noticed me in the corner silently screaming. It was easier to stay hidden - much safer that way. Yet, I yearned for a hug, a kind word, a smile from him. None came... The lack of physical affection, as well as emotional support from a father, stole my childhood. And as I was growing up, my self-worth died too.

Very few friends came over to play, as they also feared him. Consequently, I sought sanctuary in my bedroom. It was a safe world to escape to - a refuge from tension and drama. As I dissolved into books, words and music, I found some peace. I was even a model student at school as it gave me the stability I couldn't have at home. A glimmer of normality came in the form of an auntie and uncle, who I'd visit on the way back from school. Despite being unable to share my turmoil, the relationship with my uncle became a special, enduring one. His love and acceptance of me kept me going during the dark days when I couldn't see light ahead.

Living with fear is hard to explain to anyone. You are not like other families who share things or communicate. Most of the time, you can't settle ... and have to watch your back. As a teenager, I developed depression. As it wasn't recognised, I carried this emotional hurt for many years. Even now, 30 years on, I live with the consequences of his legacy.

I would listen out for my father getting up in the night, for example. Having found him asleep downstairs, with a lit cigarette in his mouth, I was petrified it would cause a fire. From then on, if I heard the stairs creak in the night, I couldn't sleep until I knew it was safe. Sometimes, I still wake up in the middle of the night with something chasing me.

As I became a teenager, stripped of confidence, I hated myself. My father's rejection, as I saw it then, contributed to me feeling ugly. When away from the house, I reverted into myself, grew a protective shell so I couldn't get hurt. My eyes were always fixed on the pavement, rather than looking at anyone in the eye. I wanted to be invisible. The battle continued in my adult years, as my struggle to accept myself raged on.

Eventually, my father's symptoms became so severe, we were unable to live together any more. My exhausted mother was working full-time to keep the house running and couldn't provide full-time care. Whether it was right or wrong, he needed to be looked after and the decision was made to move him into a care home. It caused a split in the wider family, as my father's siblings resented the decision. More turmoil...

I blamed myself for many years. Could I have done something different? Hindsight can be a wonderful thing but it can also make you question the past. You are caught up in a roller coaster of emotion, from guilt and anger, to compassion and despair. I remember ringing up my father's home when I was 18. I had an urge to tell him I did care about him, despite the past. However, he couldn't remember who I was... I wanted to die from sadness.

When my father passed away, he'd been stripped of human dignity. In one of my poems, I refer to him as a 'Man-child' with a spirit imploring to be set free. At least death did him that honour. I lost a father I never really had or knew. I lost a grandfather to any future children I might have. Nowadays, I try not to let the sad times haunt me.

Despite everything, I've learnt to accept that I am a good person, with a good heart. I also know that through meeting others with MS, my father's abusive behaviour wasn't typical. I still live with the worry that other children, if unsupported, can easily become hidden victims of MS. Hopefully, with a support mechanism in place and lots of openness, what happened to me will never happen to others.

For me, I refuse to be a victim of the past. My life is too precious to waste on things I cannot change. I am the person I am because of my upbringing. And I am who I am in spite of it.


Nikki's article shows how MS affects not only the person with MS but the whole family. As she points out, through meeting others with MS, she has learnt that her father's behaviour was not typical.

The MS Trust has published a set of booklets to help families talk about MS:

To order books, click on the title or visit the Publications page.

You can also contact these organisations for further help and support.

  • Childline - a counselling service for children and young people.
  • YCNet - The Princess Royal Trust for Carers - Young Carers site
  • YoungMinds - a charity which works to improve the mental health of all children and young people.
  • Parentline Plus - a charity which offers support to anyone parenting a child