\n<\/p>\n
I chose to die at 44 because ALS (motor\u00a0neurone disease) left me paralysed. I still loved my life,\u00a0even to the last day.<\/p>\n
It all started in December 2023, when I lost strength in my right arm, and\u00a0my pinky finger was going in all directions. I went to see my GP and did\u00a0physiotherapy because they thought it was a nerve blockage.<\/p>\n
After no change, I asked for an appointment with a neurologist. It was eventually revealed that it was much more serious and in April the next year, I was diagnosed with ALS at 41 years old. That meant my muscles would eventually degenerate, leading to paralysis; it was also terminal.<\/p>\n
It was a shock. I had to lie down for 10 minutes, and after that it was one step after another. I called my family and friends. Everyone was speechless.<\/p>\n
The progress of ALS is unpredictable and can change over time. A few weeks after my diagnosis, I started a year-long world tour. I\u00a0went everywhere \u2013 northern Europe, Burning Man in the US, the Day of the Dead in Mexico, Taiwan, Japan. It was a luxurious trip: I flew first or business class and stayed in five-star hotels. Having life and income protection insurance ended up being life-changing \u2013 it helped fund the trip.<\/p>\n
<\/span>Marc Girod (on right) with friends at Burning Man festival \u2026<\/span><\/span> \u2026 and with family and friends on Bondi beach two days before he died. Photographs: courtesy of Marc Girod; Daniel Boud\/The Guardian<\/span><\/p>\n In the last six months, I developed nerve pain in my fingers. Touching soft fabric felt like burning. My swallowing and breathing were affected. About a\u00a0month ago, I started needing 24\/7 care.<\/p>\n The day I was diagnosed, I knew my life would end with euthanasia. I didn\u2019t want to be connected to a machine to breathe. <\/strong>One month ago, I decided on the date \u2013 20 April, my 44th birthday. The reason is that I\u2019m losing my voice. It\u2019s important for me to use my voice to say goodbye to my loved ones.<\/p>\n I was expecting someone to try to talk me out of euthanasia, but no\u00a0one close to me did, including more religious people. They were respectful and understood that only I know what it\u2019s like to live with my disease.<\/p>\n For a long time, I\u2019ve tried to follow two rules. The first one is to not do to others what you don\u2019t want done to you. The second is to not try to change the things you can\u2019t control, such as your family, your age or getting a\u00a0terminal condition, and to instead focus on the things you can control \u2013 your job, where you live and how you deal with the condition.<\/p>\n I\u2019ve had a very full and happy life. I\u2019ve always done what I wanted to; I\u00a0haven\u2019t wasted time putting things off. Too many people hate their jobs and lives, and don\u2019t change a\u00a0thing because change is scary.<\/p>\n I grew up in Le Chesnay, France, and moved to Paris at 18. I\u2019m the youngest of four brothers. I studied mathematics as an undergraduate, then slacked off for a few years and had pretty terrible jobs. At 26, I went back to school <\/strong>for my master\u2019s degree studying internet technology. Later, I\u00a0was hired by Google in Paris.<\/p>\n I knew I wanted to move to Sydney, so I applied to transfer to a role there, and moved at 33. I loved the weather, the proximity of the beach, the safety.<\/p>\n I always wanted to get married and have kids but I didn\u2019t get the chance. Instead I made sure to have a\u00a0good single man\u2019s life: I could party all weekend, and travel a lot. At 39, I\u00a0decided to be an artist and spent every evening painting. I organised an exhibition less than a year later.<\/p>\n These last few weeks, I spent my days pretty much the same way. There\u00a0was time for myself in the morning. In the afternoon, friends visited. And at night, I had video calls with overseas friends.<\/p>\n The day before I died, I organised a\u00a0big party. I wanted people to mingle and laugh. There were performances and a crepe stand. The theme was to dress up as something related to me \u2013 something I love, something I hate. I\u00a0enjoy dark humour, so I wore a T-shirt that read, \u201cI am faking it, stupid.\u201d<\/p>\n I think about death as being \u201cfrom\u00a0dust, to dust\u201d. I don\u2019t think we have any proof of whatever comes next. I\u00a0believe, as there\u2019s no proof, there is nothing. I\u00a0would be very happy to be proved wrong if there\u2019s something great.<\/p>\n Life is amazing because it ends. Everybody dies. I\u2019ve had a great life with a lot of people who love me \u2013 I\u2019ve\u00a0been really lucky.<\/p>\n Marc Girod died on 20 April 2026.<\/em><\/p>\n As told to Jane Zhang<\/p>\n Do you have an experience to share? Email experience@theguardian.com<\/p>\n","protected":false},"excerpt":{"rendered":" I chose to die at 44 because ALS (motor\u00a0neurone disease) left me paralysed. I still loved my life,\u00a0even to the last day. It all started in December 2023, when I lost strength in my right arm, and\u00a0my pinky finger was going in all directions. I went to see my GP and did\u00a0physiotherapy because they thought<\/p>\n","protected":false},"author":1,"featured_media":48978,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[56],"tags":[21970,9573,2675,9135,337,891],"class_list":{"0":"post-48977","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-crime-justice","8":"tag-44th","9":"tag-birthday","10":"tag-died","11":"tag-experience","12":"tag-life","13":"tag-style"},"_links":{"self":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/48977","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=48977"}],"version-history":[{"count":0,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/48977\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/media\/48978"}],"wp:attachment":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=48977"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=48977"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=48977"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}