By David Tuller, DrPH
It has been a season of loss. Two weeks ago, I posted an obituary for the much-loved ME patient advocate Beth Mazur, who co-founded #MEAction and suffered with the disease for years. Last October, I posted tributes to Celine Corsius from her parents and brother; Celine died by euthanasia under Dutch law, also after many years of suffering. Two days ago–Saturday, January 27th–another Dutch patient, Lauren, died the same way. She was 28 years old.
Lauren chronicled her journey toward euthanasia on X (formerly known as Twitter) and on her blog, called “brain fog: my life & death with myalgic encephalomyelitis.” The blog is definitely worth reading (thanks to Google, I could read it in translation). In her final post, she outlined “some things I have learned in my life.” These were the first three:
*Don’t be afraid to be vulnerable.
*It’s completely okay to say that you don’t know something, that you haven’t studied something enough (yet) to form an opinion. Related : It’s also okay to admit when you’ve done something wrong. We are all human and we are constantly learning. Being able to admit mistakes is a beautiful quality that I always appreciate in people.
*Invest in a good mattress and pillow.
The rest of Lauren’s advice is a mix of smart, quirky, and heartfelt tidbits of wisdom and guide to life. This one made me laugh: “Cheerful socks with crazy prints help get the day off to a good start.” I plan to print out thee maxims and tape them to my office wall; they’re a pretty good guide to living life with compassion, honesty and grace. (I hope they read as well in the original Dutch.)
The last entry on the blog is from Lauren’s family. It is called “In Memoriam: Lauren,” and has the following message: “Lauren passed away peacefully at 1.55 pm in the presence of her parents Leonie and Peter and her best friend Lau.”
A friend of Lauren’s, Marie Vinter, posted a touching tribute on Medium. In a tweet (or an X) about the piece, Marie wrote that “Lauren was the who who inspired me to write, so I tried to honour her memory by writing this piece. My thoughts go out to her family and friends.” I have reposted it below with her permission.
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calamitous love & insurmountable grief
On Saturday, 27 January 2024, my friend Lauren passed away at age 28. For her last few years, Lauren lived with myalgic encephalomyelitis (ME), which has progressed to a severe level and made her suffering unbearable. Lauren requested euthanasia.
Lauren was one of my oldest, coolest friends. She was daring, kind, and — even on her last days — so effortlessly funny. I followed this girl on Twitter over a decade ago and was in awe of just how intelligent and interesting she was. At just 15 years old, she wrote so beautifully and poignantly about serious things, like mental health, loss, love, life and death. I immediately wanted to be her friend, but it took me a few months to work up the courage to slide into her DMs. When she finally followed me back in 2011, I got so excited I took a screenshot — a sacred action reserved only for interactions with celebrities.
So much of my world view and my personality have been shaped by Lauren. The first money I ever made was by helping her father move some boxes with books. Lauren was obsessed with books, and so I read all the same books. She was an excellent filmmaker and photographer, so I also learned to use a camera. But everything has always looked so much more beautiful through her lens.
When I struggled with depression about 8 years ago, Lauren invited me into her home near Amsterdam to get away from it all. Everyone likes to criticize their home countries, but Lauren loved hers. And seeing it through her eyes, exploring it together, made me fall in love with the Netherlands too. I’ve been there many times since then, but never without her. Now that she is gone, I can’t imagine going to Amsterdam and not seeing Lauren. I think the entire country will feel empty, cold, and wrong without her.
We didn’t talk every day; we didn’t even talk every month. But she was always there, online, posting pictures from the nature or the climbing gym, and then, when her world shrank to the size of her room, she would share cute videos of her cats, Bagel and Bean. I know the Internet is endless, but now it also feels empty and wrong without her.
Not long before Lauren got sick, we sat in a dimly lit bar and talked about her future plans. She thought about trying a career in filmmaking, or writing a book someday. She wanted to travel to distant countries, even though it freaked her out “because all the food is different and scary”. Life got difficult at times, but Lauren always faced it head on, a tattoo on her arm with her handwriting reminding her to keep moving forward.
And so it’s unfathomable how someone with such a lust for life, such perseverance, could choose to die by euthanasia. But such is the cruel reality of ME: it takes everything from you until there’s nothing left to take, but it won’t let you die. A study showed that people with very severe ME experience what most of us will feel just before death in old age, except ME patients exist in this state for years. I am heartbroken and devastated over the choice my friend was forced to make, but I’m glad she is no longer in pain.
This choice was a million times more devastating for her. There was nothing Lauren wanted more than to get her life back. And if there was any hope for her health improving, I know she would have waited. She passed away on her own terms, safely, surrounded by her family, her best friend Lau, and her cats. She was so, so loved.
When Lauren posted about the death of a loved one, she would ask people not to send her emoji hearts but, instead, send donations to a relevant charity. Now, you are welcome to send me hearts if you wish, but please also consider donating to the Open Medicine Foundation and learning more about ME/CFS through the resources below. We couldn’t save Lauren, but thousands of people with ME all around the world still need a cure, clinical research, advocacy and funding.
I love my friend so, so much, and I miss her terribly. Lauren deserved so much more. All my love and my thoughts go out to her mother, her family, her friends, and other ME patients affected by this loss.
In another life, we are still petting pub cats, browsing bookstores, getting pizza, walking around Amsterdam, and documenting every step.
Liefs, Marie.
