April 28th 2024.
Julie and Nigel in their early years together
The doctor's words hit us like a ton of bricks. "Life-limiting" and "no cure" were the grim terms used to describe my husband, Nigel's, condition. We were told that he only had three to five years left to live, and I couldn't even process the information. It was a surreal moment, nothing like what you see in movies. The sky didn't turn dark, there was no thunder, and the world didn't stop. Everything remained the same, but for us, nothing would ever be the same again.
It all started in the summer of 2006, when I noticed that Nigel's speech was becoming slurred and deteriorating. He casually mentioned to me one morning that his tongue felt like it didn't belong to him, twisting and feeling heavy like a brick. He didn't seem too concerned, but I couldn't shake off the worry. We went to our GP, who referred us to a speech therapist. She identified Nigel's speech issues as dysarthria, a condition that weakens the muscles used for speaking, but she didn't know the underlying cause. We were advised to see a neurologist, and after a series of tests, we were left with one diagnosis: Motor Neurone Disease (MND).
MND is a devastating disease that gradually robs its victims of their ability to move, speak, eat, and breathe. As we researched more about it, Nigel stumbled upon a documentary about a man with MND who chose to end his suffering through assisted suicide at Dignitas, a nonprofit organization in Zurich. My initial reaction was one of sadness, but Nigel saw it differently. He thought it wouldn't be a bad way to go. At the time, I brushed it off thinking it was just a passing thought. We had treatments and life to focus on, so we never brought it up again.
But as the years went by, MND viciously attacked Nigel's body. First his speech, then his legs, and eventually his arms. He went from using a cane to a walker, and then a wheelchair. Even simple tasks like brushing his teeth became impossible. Our lives were completely transformed by his diagnosis. We went from being an active and sociable couple to being consumed by the demanding care routine. I did my best to care for Nigel, with the help of our daughter Ellie who gave up her job to support us. But as Nigel's condition worsened, we needed more and more help.
In 2009, Nigel participated in a medical trial for MND, hoping for a cure. But during his stay at the hospital, he saw a filing cabinet labeled "deceased" and joked that there would be a slot for him soon. Sadly, that day came much sooner than any of us could have imagined. Nigel's MND followed a pattern of ups and downs, with periods of stability followed by sudden declines in his condition. In August 2016, he suffered a particularly severe episode that made him feel like he was losing his spirit and sense of self. He was determined not to let the disease take away his humor and personality, and so he made a decision.
In September of that year, Nigel announced that he had found the "cure." My heart stopped as he explained what he meant. He wanted to go to Dignitas and end his life while he still had control over his body and mind. I wanted to protest, but I knew that his death would be slow and painful. He was afraid of being trapped in a paralyzed body, unable to even scream. I couldn't deny him his final wish.
And so, the mission to go to Dignitas began. Nigel started communicating with the organization, and we told our closest friends, family, and doctors about his decision. It was a secret operation, as applying for assisted suicide at Dignitas was a complicated and bureaucratic process. Nigel had to prove that he had sound judgement and enough physical ability to administer the lethal drug himself. We had to send numerous medical reports, but we were determined to make it happen.
At the beginning of our marriage, Julie and I were given some life-changing news. The doctor used words like "life-limiting" and "no cure" to explain that my husband, Nigel, only had three to five years left to live. I was in shock and felt numb.
It's funny how moments like this never happen how you imagine them. There was no darkening sky or rumble of thunder. The world didn't stop and hold its breath. Everything seemed normal, and yet, our lives would never be the same again.
It all started in the summer of 2006 when I noticed that Nigel's speech was gradually getting worse. His words were slurred, and his tongue felt like it didn't belong to him. He brushed it off and went about his day as if it was nothing, but I couldn't shake the feeling of concern.
We went to our GP who referred us to a speech therapist. She diagnosed Nigel with dysarthria, a condition that weakens the muscles used for speaking. But she didn't know what was causing it. A quick Google search led us to learn that dysarthria could be caused by damage to the brain or nerves. To be safe, we were advised to see a neurologist for further testing.
Nigel endured numerous tests, including blood tests, MRI scans, and an electromyography test. The doctor compared it to a ship on the horizon, getting closer and clearer as time goes on. And eventually, after eliminating other diseases, we were left with one diagnosis: Motor Neurone Disease (MND).
MND is a devastating disease that slowly takes away a person's ability to move, speak, eat, and breathe. As we researched it that night, Nigel stumbled upon a documentary about a man with MND who had chosen to end his life through physician-assisted suicide at Dignitas, a nonprofit organization in Zurich.
I remember saying, "Poor man," but Nigel surprised me by saying, "Not a bad way to go." I didn't think much of it at the time, and we focused on treatment and living our lives. But as the years went on, MND took its toll on Nigel's body. First his speech, then his legs, and eventually his arms. Our lives were completely transformed by his diagnosis.
We went from being a busy and sociable couple to being consumed by the constant care Nigel needed. I did my best to care for him, with the help of our daughter Ellie who gave up her job to assist us. But as time went on, we needed more and more support.
Nigel's strong and active body slowly gave way to the disease. He went from using a cane to a walker, then eventually a wheelchair. Even the strength in his neck diminished, and he needed a brace to hold himself up. Despite all of this, Nigel never once complained. He remained the same gregarious and funny man, despite the changes happening to his body.
In 2009, Nigel participated in a medical trial for MND, but as we were in the hospital, he saw a filing cabinet labeled "deceased." He laughed and said, "There'll be a slot in there for me soon." Unfortunately, "soon" came quicker than any of us could have imagined.
Nigel's MND followed a pattern of ups and downs. He would have periods of stability, followed by episodes where his disabilities would worsen. In August 2016, he experienced a particularly bad episode. He felt like the disease was taking over his spirit and sense of self. He didn't want to disappear, and he wanted to go out on his own terms.
In September of that year, he announced that he had found the "cure." My heart skipped a beat as he explained his plan to go to Dignitas and end his life while he was still happy and able to smile. I wanted to argue and protest, but I knew deep down that he was right. Nigel's death would be slow and painful, and he didn't want to suffer until the end.
From that moment on, we began planning for his final wish. Nigel opened communication with Dignitas, and we told our immediate family, close friends, and doctors. It was a secret mission, as applying to die at Dignitas is a complex process with several prerequisites, including the need for sound judgment and physical mobility to administer the lethal drug.
Our lives were consumed by paperwork and medical reports. But in the end, we were able to fulfill Nigel's final wish, and he passed away at Dignitas in the presence of his loved ones. He may have been physically gone, but his spirit and humor will forever remain with us.
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