Stephen Hawking has died, and I feel a heart-plummeting sadness. I never met the man. Am I entitled to this sadness, I wonder. My husband, Simon Fitzmaurice had Motor Neurone Disease (MND). It’s an exclusive kind of club that seems to attract the best sort of people, so yes, I will allow myself some sadness today.
Death is a strange thing. It seems to have a cumulative effect. Once you’ve been through a big one, more death doesn’t ever surprise you. It makes you hang your head and nod submissively.
Simon succumbed to the illness, left us, or just drifted to the stars someplace better last October. Forget the euphemisms: I’d rather just say, he died. To those select shiny souls who live with MND, Stephen Hawking was a bit of a god. We muttered his name in awe, only because he outlived the three to four years of life prognosis with a Mensa-style magnetism.
His genius brain seemed to crush MND like an inconvenient bug buzzing in his orbit while he had far more important things to be doing. Nothing much, you understand; just finding answers to life, the universe and everything.
Obituaries will talk of his achievements and perhaps only want to dwell on his disabilities in a certain context. The world loves the narrative of a hero achieving his dreams despite obstacles, against physical odds; and rightly so. Since Simon’s diagnosis in 2008, my interest in Stephen Hawking has been slightly different. I was fascinated by him as a father, husband and human. It’s a scarce few who contract MND. Those who use artificial ventilation and become fully locked into a body that cannot move are rarer still. My husband Simon communicated using an eyegaze computer.
Electronic voice
By 2014, he could no longer move any other part of his body. He spoke with an electronic voice. He used that voice to insist on directing a movie and to write a memoir. During a radio documentary he participated in for the BBC about eyegaze technology, he came into contact with Lucy Hawking, Stephen’s daughter. Lucy and Simon became email buddies.
In 2016, she came to the premiere of his completed film My Name is Emily. I sat beside her during the screening. She began crying from the opening credits and didn't have a tissue. Apologising politely in that uniquely British way, she continued to drip tears until the end credits, dabbing them away gently with her flowery scarf. Lucy gave us a gift of a set of children's books she had co-written with her father called George's Secret Key to the Universe.
My children and I gasped in awe as it was signed by both authors. Stephen Hawking signed books with his thumb print, complete with a stamp that says “Right thumb print of SW Hawking”. “How cool is that?” we all whistled. Lucy spoke fondly of her father and laughed chatting about how he was grumpy about not being allowed air travel at the time.
With five children of my own, I was moved by this woman’s love for a father who couldn’t move. It gave me hope for my own kids. Their bond clearly reached far beyond the physical. He was her dad and that was that. Human beings are so complex I remember thinking. We are made of moons and stardust, infinite cosmos and complexities inside us that can never be fully explained. Children can love their parents unconditionally, to infinity and beyond. Who cares if they can’t move? Lucy Hawking is the sweetest soul. She gave me hope that my own kids might grow up to be half as sweet and decent.
Frustration
In his memoir It's Not Yet Dark, Simon wrote a passage about the frustration of lying in bed, listening to his son Arden trundle up and down the hall on his scooter and not being able to touch him.
“I wish I could text into his head my love for him,” he wrote. He read this passage in his electronic voice for the BBC documentary, and Lucy played it for her dad. She told us that, while listening to it, he was moved to tears.
What does it do to a man, stripping him of the physical, leaving his mind float to far-off places in the vastness of starry space? Having watched it happen to my husband, this question will continue to haunt me.
When Simon died, it gave me strength to think he had been set free from a body that didn’t work any more. In the case of Stephen Hawking, I wonder if he was freed a long time ago. Death might be a mere inconvenience. He already had the key to the universe. Travel well through the stars, Mr Hawking. You have left behind a phosphorescent trail the rest of us can only gasp at in wonder.
