This is a difficult and relentless disease, and Patricia’s husband is juggling full-time work and full-time care for her. Life may be shortened for Patricia, but she wants to live it to its natural end. She is opposed to any change in the law which would allow assisted suicide.
Willingness to care
“It’s a lot of work for my husband”, says Patricia, from her home in London. “But I see his love for me in his willingness to care for me, despite the hardship. For me, a law helping people to kill themselves because they are ill or old indicates a utilitarian mindset, implying that if you’re not useful you shouldn’t be alive.”
What disturbs Patricia most is that a change in the law would be open to coercion, intimidation, and mandates, leading people to think they have a duty to kill themselves.
She says: “Illness is part of being human. It’s the sign of a civilised society that people who are vulnerable, elderly and disabled are looked after. It concerns me that it would come to be seen as irresponsible, wanting to stay alive, while becoming more and more dependent.”
Patricia says that, at each moment of loss, she does grieve for the things she can no longer do. A designer by profession, she loved sewing and for many years ran craft sessions at a youth club for girls but now enjoys sharing her skills by giving advice via WhatsApp. She loves flowers and often created arrangements for weddings. Now she has asked friends to stop bringing her flowers because she can’t see to them herself and doesn’t want to give her husband yet another task.
Plumbing the depths of love
For Patricia and her husband, illness is above all a lesson in love. “As a couple, we are plumbing the depths of love”, she says. “Every day I think I’m so glad I married him.”
Becoming a burden to others is high on the list of reasons people choose assisted suicide in countries where it is legal.
“Caring for someone is only a burden if you don’t want to do it, or you feel you can’t give as much as is needed,” says Patricia. “Getting outside help eases the load and means family members can support each other and benefit from this special time. Family dynamics change when something like this happens. It can become a time of bonding.”
Patricia is clear that she is not chaining anyone to her. She is not putting any pressure on her children.
Astounded by generosity
“Human beings much prefer being in control and, paradoxically, feel good when they give to others”, explains Patricia. “I have been astounded by the generosity of people I didn’t have close ties with who have volunteered help, and new friendships have blossomed. Now I’m weak and dependent on others, I’ve had to learn to live in this vulnerable state and be the receiver. People give what they can, I don’t judge anyone by how much they help me. I hope it is making me more grateful.”
What is Patricia’s response to those who say that the right to end your own life when it becomes unbearable is a humane and caring solution?
Frightening aspects of the disease
“I know what may be ahead of me with MND”, says Patricia. “There are some very frightening aspects of this disease. And, yes, life is overwhelming on some days. We’re only just coping at the moment. I’d rather not be in this state. Physical deterioration isn’t pleasant, and this is not how I’d like to be seen. But offering to help me kill myself is not an act of love. Palliative care is there to help make my symptoms bearable and to help me at the end.
“I didn’t determine when I was born, and I don’t think I have the right to end my life. I wouldn’t want my family to be left with any guilt or trauma caused by my decision to leave them, rather than waiting for a natural end. We need proper closure, and I don’t think my family would get that if I chose to kill myself.”
“Times of suffering can push us to our limits, tempting us to lose hope. Support from others can help us in times of weakness. If legalised killing became law, these times of vulnerability could be exploited, opening the door to euthanasia. People could be persuaded to kill themselves for any number of reasons.”
Little things are important
“Little things are important”, says Patricia. “I love the view from my window. Human touch is so important. Stroking someone’s hand can help a lot. We need training in kindness and love.”
“The greatness of the human spirit is that we can endure great hardships. That’s how we grow and become more human, more compassionate. I am in awe at the dynamism and vitality of other people in my online support group, who are full of life and generosity.”
“I still have a lot to offer. I may not be around to play with any grandchildren, but I can support my children and encourage them to meet life’s challenges. If assisted suicide was on offer, people may give up rather than overcome difficulties.”
Patricia’s view is that, however small her world becomes, she wants to be alive in it.
