Thumbing through the calendar, Nagui Morcos settled on April 22 2012 as the day that it would happen.
It was a major life event, after all, so he wanted to give himself a full year to prepare for it.
But April 22 would not mark the day that Mr Morcos got married or had a baby, it would be something else entirely - the day of his own death.
He chose to kill himself at the age of 54 rather than be consumed by the condition, just like his father did before him.
In a heartbreaking letter to his wife of 23 years, Jan, his two brothers and his friends he wrote: ‘I loved my life. I wish I could go on but I can’t.
‘I am truly sorry for any grief that this causes you.’
Eighteen years ago as he and his wife were trying to have a baby he got tested and found out he too had the gene, whilst his brothers did not.
Mr Morcos changed his mind about having a family and decided that he would be the last to endure the suffering.
He finally acted having endured the same symptoms as his father for eight years, such as constant exhaustion, urinary problems, waking up six times in the night and bad circulation.
Drinks would fall from his hand, his speech faltered and worse was to follow.
His brothers supported him, as did his wife, but she was worried he might survive a suicide attempt.
Mrs Morcos told the Toronto Star: ‘I told him that I worried that he’d do something violent or brutal or something that might not work and he might survive in very bad shape and that I didn’t want him to have to think about that on his own or feel that he was alone.
| Mrs Morcos |
In the end Mr Morcos contacted Canadian organisation Dying with Dignity which advised him on how to fulfill his wishes.
Mr Morcos took his last year off from work as a college professor so they could spend time together, with their final days being like their first weeks in love.
Two days before the act they went to the opera, and on the day itself he seemed mentally sharp and alert.
Their final night was spent together having dinner with a glass of champagne. They told friends they were out of town so nobody would call and disturb their peace.
The next day, with the paperwork all sorted, Mr Morcos decided to kill himself at 2pm.
With cellist Yo Yo Ma playing on the stereo, he sat in a chair in the bedroom as his wife said her last goodbye.
She said to him: ‘Are you sure?’
He replied: ‘Yes’.
She asked: ‘Are you afraid?’
He responded: ‘No’.
They looked into each others eyes and said: ‘I love you’.
Mrs Morcos said: ‘He told me he wanted me to be happy and he was ready and he was sure.
‘It was time. It was the hardest thing I’ve ever done.’
She went into the next room and listened to Mozart and wrote in her journal whilst Meg Westley, president of Dying With Dignity, remained with Mr Morcos until his last breath.
Then, silence.
An hour later they phoned the emergency services and when the police arrived they initially thought it might be a murder.
But after a four month investigation they have finally said that nobody will be charged.
Neither Mrs Morcos nor Ms Westley have revealed exactly how Mr Morcos killed himself, though in an interview he admitted the buying a pill online and swallowing it.
In his final letter he said: ‘In deciding on the timing for hastening my death, and to stay within the current laws, I had to do this myself and couldn’t get any help.
Nagui Morcos' heart-breaking goodbye letter to his family and friends
Nagui Morcos, who suffered from Huntington’s disease, took his life on April 22. He wrote this letter, which was read at his memorial, to explain the suicide to his loved ones.
My dearest family and friends:
By the time you hear this message, I will have hastened my death. I did this of my own free will and no one put any pressure on me. I have known for 18 years that I carried the Huntington gene, I have been symptomatic for eight years and my symptoms have progressed significantly during the past year. I have had a lot of time to think this through.
In deciding on the timing for hastening my death, and to stay within the current laws, I had to do this myself and couldn’t get any help. It was a precarious balance between doing it too early and missing out on my rich life, and doing it too late when I was no longer capable.
If you are asking yourself was I suicidal? Absolutely not. I loved my life. I wish I could go on but I can’t. I am truly sorry for any grief that this causes you.
For people like me, who are terminally ill or have an incurable progressive disease and are steadfast in their resolve to hasten their death, nothing that anyone could say or do would make a difference. This issue will never go away — people like me will continue to hasten our death somehow. You must let us go.
I would now like to thank a few people who have been angels for me through this journey.
Starting with my loveliest Jan. I have been passionately in love with you every day for the past 23 years that we have been together. My love for you has continued to grow as I have admired and learned a lot from you. You have been rock solid to me throughout the ups and downs that we had during our life together. Thank you for being part of my final journey and thank you for letting me go. You are the hardest person for me to give up.
I would like to acknowledge my dad, Fouad and all the pain and suffering that he endured with this cruel disease. I am relieved that in our family Huntington’s has ended with me. To my mom, Gamila, thank you for all your love and for everything you have done for me. I am sorry for any pain that I cause you. And to my two brothers Chak and Sam with Grace and Donna and their children. We have grown closer together through this journey with the “brotherly weekends” and many warm family get-togethers. I also want to give a big hug to Shoukry and Heather, Amir and Basma, Marianne, Baher and Nora and every member of my family who has been there for me with so much love and support. I love you all.
Next I would like to recognize my in-laws in Ireland — the Crowley family. From day one, they showed me nothing but love and warmth. As Kay said — we’ve never had an argument. Huge hugs to everyone in your wonderful family for their understanding and for letting me go. And thank you, Kay, for coming to be here for Jan at this time.
Next up are my dearest friends. I am so proud to have known each and every one of you. With deep relationships built over 20 to 30 years — you have become family to us both. I remember all the good meals and special times we enjoyed together. I also enjoyed “boys’ night out” and all the pints and stogies we shared. Thank you for letting Jan and me be part of your children’s lives. It was great seeing them grow and become the interesting young adults that they are. Thank you, Angela, for introducing me to Jan, and thank you Helmut for busting my chops to pursue her again. She was worth it. You have all been incredibly thoughtful and kind to us throughout our life and through this journey particularly. My rich and wonderful life with all of you was very hard for me to give up.
Finally, I want to thank the Dying With Dignity association and in particular Wanda Morris, whom we asked to be the MC today, for providing me with information and clear options as to how I could hasten my death — safely and humanely. I will always be deeply grateful to them for improving my quality of life during the past two years. They have given me such peace of mind with my day-to-day struggles through my final journey.
I am so proud of Canada for being such a progressive nation — we’ve accepted divorce, abortion and same-sex marriage. It is now time for us to do the humane thing and embrace choice for the terminally ill to have medical assistance to end their life when it has become unbearable.
I now pass the torch to you, my dearest family and friends, to do the right thing and change this so that you and your loved ones will have more choice than I did.
I bid you farewell with huge and enormous hugs to everyone,
Nagui
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