Saturday 17 December 2022

What's my survival rate?

I have two acquaintances on social media, D and L. I say acquaintances for although we are technically friends as per how people are linked on social media, I've never met either one in real life and only know them through text messaging.

D is rarely on and I suppose we only exchange messages a few times per year. A month ago, out of the blue, she sends me a message while I'm offline, explaining she's been diagnosed with esophageal cancer, the doctors giving her six months to three years. I write back with my condolences but hear nothing. A few weeks later, I see her name online briefly. I write again but hear nothing. Considering I'm just an acquaintance she rarely talks to, I suppose I shouldn't expect a response. D has other things on her mind.

L and I have in the past had some lengthy conversations but in the past year or so have rarely been in touch. Two weeks ago, she contacts me while I'm online. She's been diagnosed with leukemia and is actually messaging from the hospital where she's undergoing chemo. We exchange texts about her type of leukemia and as I Google it, we discuss the five-year survival rate of 65%.

I've heard it said that the illness and/or death of somebody else makes us reassess our own lives. When is my time going to be up? I can't imagine what either one of these people are going through. I can only guess it must be surreal. You get the news you have a disease, and you're going to die. What do you do? How do you plan for that? Is there a plan? What exactly is death? What happens when I'm gone?

My Turn
I turned 70 this past October. My father died at 80. The average life expectancy of a male is around 82. Inevitably, I'm going to die. I just don't know when and I don't know how. When each of my parents died, I was the chosen member of the family to give the memorial speech. I can only describe the deaths as surreal. I always knew my parents wouldn't live forever and that someday, I was going to get the news. When I did finally get the news, I remember thinking that at last, the moment had arrived. I had thought about it, I had sort of planned it out in my head, and now, I had to do it. I kept having to remind myself that this was really happening. This wasn't a drill.

Someday, I'm going to get the news. My doctor is going to give me the results of some test and tell me I've only got so long to live and to arrange my affairs. I know it's going to happen and when it does, it's going to be a moment I'm going to have difficulty grasping. It's going to be surreal.

People disappear
In my social media, I go down my list of friends. Some I haven't chatted with in years. Where are they? Busy elsewhere? Have they dropped using such and such social media in favor of other activities in life? Or have they possibly died? I have no way of knowing. Periodically, a person's account goes silent and there's no indication of why. All we can do is conjecture.

Up to now, I've been talking about death. According to NamUS (National Missing and Unidentified Persons System)

Over 600,000 individuals go missing in the United States every year. Fortunately, many missing children and adults are quickly found, alive and well. However, tens of thousands of individuals remain missing for more than one year – what many agencies consider “cold cases”. It is estimated that 4,400 unidentified bodies are recovered each year, with approximately 1,000 of those bodies remaining unidentified after one year.

This isn't something I normally think about but the above statistics tell me the world is full of mysteries. There's a lot going on we know nothing about. It's an odd comparison, but I remember watching some nature show following a herd of water buffalo. At one point, the herd is grazing on a savannah. Some lions in hiding rush forward and drag one of the buffalo off into the bush, and a few buffalo briefly look up then go back to grazing. At another point, an elderly, sick buffalo falls behind and is left by the herd. It eventually dies and the scavengers have at it.

Are humans like the herd? Except it's not lions per se, but disease, accidents, and God knows what else. But the rest of us, the rest of the herd, carry on. While I suppose that may seem heartless, what other choice do any of us really have other than carrying on? Humanity as a whole will live on while us as individuals disappear.

Social Media
Over the past few years, I've written about fellow bloggers suddenly leaving us.

my blog: Bobbie Morgan (1964-2015): A Good Woman's Dirty Mind - Nov 21/2015

my blog: Audrey van Petegem (1962-2020) - Oct 14/2020

I noted that family and friends supported their endeavors, keeping web sites up, and tending things like Facebook. I've realized I don't exactly have a contingency plan, and if I keeled over tomorrow, nobody knows my password to Facebook.

The world currently has a population of 8 billion. There are approximately 140 million births and 70 million deaths each year. 70 million is almost 0.9% of 8 billion. Facebook has 2.9 million users. It would stand to reason that 0.9% of Facebook dies each year which equals 25 million users. There would be variations by age group, etc. but the same logic could be applied to any social media platform.

Final Word
D and L seem like nice people. I've always had good interactions with them and think of them fondly. I'm sorry for this personal turn of events, and as I said, I can't imagine what they're going through.

Life is finite. The ride doesn't go on forever. Inevitably, we are all going to shuffle off this mortal coil. A silent account could mean any one of a number of things as it's an inescapable fact of life. And someday, my account is going to go silent.

Postscript: 2022-12-18
This random tweet popped up in my feed. I was stunned.

Twitter: Mark Stokes @StokesNeuro, 2022-12-18

I read through the comments. It was heartrending. There was an outpouring of emotion, surprise, grief, and best wishes for the next part of his journey.

I followed up. Mr. Stokes died the next day.

Mark Stokes Death – University of Oxford Cognitive Neuroscience Professor Mark Stokes has sadly passed away after a courageous battle with cancer. He died leaving behind his family and loved ones in shock. He was announced dead on Sunday 18th December 2022 on Facebook by Gregory Hilton in a publication that reads “A heartfelt goodbye to Dr. Mark Stokes This is not political and in a brief time Professor Stokes made the world a better place”.

Update: 2023-11-18
I didn't think to look before but it finally dawned on me to check D's partner. In his profile, he says that D died in February 2023.

I chat with L from time to time. She's getting treatment and doing well. I don't think she can say she's completely in the clear but things at the moment look promising.

I recently spoke with J, a colleague from my previous job. In the spring of 2023, he was having difficulty walking and thought he had a back problem. After several consultations and tests, he was diagnosed with ALS. The mean survival rate is two to five years, and it's been six months since his first symptom. He now has to use a wheelchair, having a ramp installed at his house. He's given up driving as he is no longer able to operate the brake pedal and the accelerator with his feet. At night, he uses a machine to help with his breathing. J's a nice guy. He doesn't deserve this but such is the randomness of fate.


Wikipedia: Five-year survival rate
The five-year survival rate is a type of survival rate for estimating the prognosis of a particular disease, normally calculated from the point of diagnosis. Lead time bias from earlier diagnosis can affect interpretation of the five-year survival rate.

Wikipedia: Death and the Internet
A recent extension to the cultural relationship with death is the increasing number of people who die having created a large amount of digital content, such as social media profiles, that will remain after death. This may result in concern and confusion, because of automated features of dormant accounts (e.g. birthday reminders), uncertainty of the deceased's preferences that profiles be deleted or left as a memorial, and whether information that may violate the deceased's privacy (such as email or browser history) should be made accessible to family.

The Guardian: Who will deal with your online presence when you die? How to create a ‘digital will’, 2021-04-10
Making a plan now can prevent identity theft, save records and stop friends getting painful pop-up reminders when you’re gone


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