Tony Nicklinson: my dad, my hero

As the public face of the right-to-die movement, he was admired by many for the strength and resolve he showed throughout his illness. Here, his daughter recalls growing up with a father whose whole life was an inspiration to her
Tony Nicklinson
Lauren Nicklinson as a toddler, right, with her baby sister Beth and her father Tony in 1989. Photographs courtesy of Lauren Nicklinson PR

On 25 June 2005, Tony Nicklinson entered his own personal purgatory, hovering between life and death. He suffered a brain-stem stroke so devastating that it resulted in locked-in syndrome, a condition often described as "the closest thing to being buried alive". Tony's fully conscious and razor-sharp mind was locked into a broken body, his lifeless limbs and paralysed vocal cords unresponsive to the brain signals commanding them to move. By his own admission, he died that day, despite his beating heart, and it was not until the 22 August 2012 that his body finally caught up.

To many, Tony Nicklinson was the public face of the modern-day right-to- die movement. He led the legal battle to secure his death via voluntary euthanasia, and was the locked-in man who dribbled, cried and convulsed on live television, begging the courts to let a doctor end his life. He tweeted his 50,000 followers, giving the flesh of a personality to the idea of the man many would read about, helping them to understand the indignities of his condition with honesty and good humour. He was admired by many, feared by some.

But he was so much more than that – he was my dad.

When I was a child, he was the man who gently brushed my hair before bed, the one who taught me how to ride a bike and patiently helped me with my homework. In later years, he comforted me when my teenage boyfriend broke my heart; he taught me basic driving skills, and helped me with my university applications. Post-stroke, I combed his hair, wiped the dribble from his mouth, and pushed him in his wheelchair. I know he cried with pain and pride when I bought my first car, and graduated from university without him there. In the last few months, we emailed each other our news in gangster speak, because we found it amusing – and, before all of this, we used to laugh so much together.

Growing up, I was a proud daddy's girl: we had a very close relationship. I idolised him and thought he was the most amazing person ever to have walked the planet. I more than loved my dad – I actually liked him. Dad raised my younger sister, Beth, and me to be tenacious, independent young women, to face life's hurdles with strength and courage and to voice our opinions with conviction. He taught us to enjoy life and to seize the day, just as he had done.

Then, in an Athens hotel room seven years ago, a stroke destroyed his body, but left his mind intact. Mum, Beth and I learned how to hoist him from his bed to his wheelchair, feed him pulverised food and wipe away his tears. Far too quickly we forgot the sound of his voice, and we grieved for the man who had become buried so deep within his own body: we knew he was never going to reach the surface again. Together, the four of us tried to accept, adapt and adjust to our new family set-up and carry on with our lives the best we could. Mum, Beth and I kept our tears to ourselves while we watched the man we loved most in the world try his hardest to love his locked-in life.

For some people, simply being alive is enough, but for Dad it was not – he wanted to die.

I have no doubt that there are other people with Dad's disabilities who can find joy and pleasure in life, and that is fantastic, but Dad could not. The things that made his life enjoyable were impossible to do once he became locked-in, and the disabled-friendly versions brought him no joy. What makes a life worth living is subjective and specific to every individual; what is satisfactory for one person is not necessarily satisfactory for another. Dad believed that life should be about quality, not quantity and did not believe in going through the motions of living just for the sake of it. He wanted to live his life, not watch everyone else live theirs from the sidelines. He could not stand the limitations of his condition, and he deemed his life intolerable. I appreciate that many people live happy, fulfilling lives with a range of disabilities, and we support their right to life. But we also supported Dad's right to die.

The crux of our case was about his right to autonomy and self-determination; his right to decide whether or not he lived or died. Able-bodied and less disabled people can exercise that right, but Dad could not because the law discriminated against him based on his physical disabilities. Dad was too disabled to take his own life, and he needed more than an assisted suicide; he needed someone – a doctor – to kill him. Dad may have been in a minority group, but that should not have meant his rights and wishes should have been ignored.

Naturally, there would need to be a clear legal framework. Voluntary euthanasia would need to be requested, and be available only to those who are mentally sound but too disabled to take their own life, so the vulnerable would automatically be protected. There would be a lengthy, rigorous process to go through. The suggestion that it would be as simple as a single visit to the GP is not true: that was mere hyperbole, shameless scaremongering of the worst kind. It is quite simple: if you do not want it, do not ask for it. We acknowledge that there absolutely must be safeguards in place to protect those people who cannot protect themselves. However, the argument that the "floodgates" would open is an exaggerated concern. Another potential barrier was that of religion. As an atheist, Dad resented his life being governed by a faith system that he had no belief in: why should his rights be denied and his views discounted because of someone else's beliefs?

A week before Dad died, the high court ruled that he did not have the right to die. They felt it was a matter for parliament. However, when our MPs will ever decide to sit up and listen, let alone proactively engage with the issue, is anyone's guess. Politicians are always fearful of putting their heads above the parapet. I am disappointed that a country as advanced and civilised as ours continues to evade the issue. Effectively, Dad and others in his position are forced to take a hit for the pro-life team. To use a religious metaphor, they are a flock of sacrificial lambs. The question must be asked: what country lets someone suffer so horrendously, despite their clear and informed wish to die, because it is too controversial?

If a prisoner were held in these conditions in a prison, there would rightly be accusations of torture. Dad's prison was of a wholly more torturous nature. I still find it difficult to believe that our leaders and lawmakers cannot find a way to make voluntary euthanasia possible, while at the same time protecting those who need safeguarding. There is a real lack of political will. It will not be easy, but right decisions never are. It should be possible to achieve, and, at the very least, talked about, discussed and considered. After all, the next stroke could happen to anyone – would you like to live your life locked in?

Dad's dying days were relatively peaceful, and he passed away at home with his family by his side. By refusing antibiotics and succumbing to pneumonia, he had some control over his death – when he was diagnosed with a chest infection, he saw the opportunity to die and took it. He was 58 and the thought of another 30 years locked in really frightened him. Seven years ago, a stroke broke Dad's body, but it was the British legal system that broke his heart.

I miss Dad every day, as do Mum and Beth, but we take comfort knowing that he is no longer suffering. We draw our strength from each other, so supporting Dad came easy. We loved him and saw him hurt every day: how could we not help him end that pain? He would have done the same for any of us. We will continue to champion the cause that Dad died fighting for, and we are continuing his legal battle: I hope that no one ever has to suffer the way that he did. We are incredibly proud of all that he achieved, and I am so very proud to be his daughter.

A lasting legacy: Lauren's eulogy for her father

In the face of such undignified suffering, Dad displayed unbelievable courage, strength, tenacity and good humour.

Dad has inspired a nation, has left behind a lasting legacy attached to the assisted suicide and voluntary euthanasia debate, and started something incredibly important for British society. In death, Dad does not need a voice to be heard; his legacy says it all.

But Dad has left behind a far greater legacy, that of his friends and family and the happy memories that we all have of him. He was a loving husband, a doting father and Mum, Beth and I are privileged to be the three people that he loved most in the world. Dad will never be forgotten, always missed and eternally loved.

It's my life: Tony Nicklinson's tweets

On euthanasia

It has nothing to do with someone else making a judgement about your life; it is about what you think of your life.

On the idea of starving himself should his case fail

I've given it much thought and concluded that a few weeks of discomfort are better than 30 years like this.

On fighting the system

I resent being told by the state what I can and can't do with my life. State intrudes too much.

My desire to end my life is driven by my wish for those that are capable of making a choice having the choice to make.

I don't see why I should go abroad to die just to save our gutless MPs some embarrassment.

On religion and religious objections to his case

Please explain why your god's plan for me requires that I suffer needlessly.

On the practicalities of his situation

Flies and spiders. I know they are harmless but when paralysed they are a bloody nuisance best avoided.

My favourite food (I miss it now)… a French stick full of meat and salad stuff … and [I miss] watching rugby with my mates over a pint.

On Twitter

Unfortunately [communicating via] Twitter is no substitute for the real thing – a normal life...

On dying

[I have no fear of dying,] but I have a fear of living like this when I am old and frail. I shall be sad, though.

There is nothing after death.

All tweets from June and July 2012