Deathbed Tweeting Makes Me Uncomfortable, And That's Okay

General / General : Litsa Williams

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So Monday Eleanor sends me this text:

Did you hear about this guy tweeting from his mother's death bed?

I hadn't, so of course I dropped everything to check it out. Turns out this guy was Scott Simon of NPR. I give any NPR personality a fair shot, especially when they are talking end of life, so this all sounded right up my alley.

I started scrolling through his posts. His mom was in the ICU . . . I have a little ICU end-of-life experience under my belt, to say the least. I have spent countless hours of my career supporting families through deaths in the ICU. My dad died in the ICU. As I read tweet after tweet, there were some good quips, some poignant moments in 140 characters or less, and a million followers. There was a clear and overwhelming love for his mother.

I kept reading and after a couple of minutes I started to feel . . . kinda gross. I couldn't put my finger on exactly why. I love Twitter, I co-author a grief blog, I talk about demystifying end-of-life issues all the time, I like Weekend Edition, I support families through deaths in the hospital. I should LOVE this!

I hesitated to text Eleanor back. Was it terrible of me that I wasn't sure I loved this? In fact, I was pretty sure I didn't love it. Was it wrong to work in grief and admit that?

I texted her back with some variation of, I feel like I should love this, but I feel kind of weird about it. She replied letting me know that Dying Matters had posted about it on facebook:

If you haven't yet embraced Twitter this is as good a reason as any to do so. Scott Simon, a radio presenter in Chicago, is live tweeting from the hospital bedside of his mother Patricia as she approaches death. His thoughtful, poignant and frequently funny tweets have attracted more than 1.2 million Twitter followers, including Dying matters this morning. In one posting, he writes: 'I just realized: she once had to let me go into the big wide world. Now I have to let her go the same way.' You can follow Scott at

Yes, it was appearing I was a terrible person for being weirded out by these tweets...

Rationally I got it: Scott Simon was sharing his honest experience with the death of his mother as it was unfolding. He was connecting with others; they were connecting with him. He was acknowledging this universal human experience that is so often hidden and private. Hopefully, this experience was helping him and helping others. But some emotional, irrational part of me was saying, "Uuuhhhh... I'm not sure about this..."

scott simon tweeting about his mother in the ICU

I heaved a sigh of relief that I wasn't the only one slightly uncomfortable about this social media end of life experience when Eleanor texted me back that she felt a little weird about it too. We never figured out why exactly we weren't on team deathbed-tweeting, but in the end I guess it doesn't really matter.  It doesn't need to work for us. It only needs to work for Scott Simon (and his 1.2 million Twitter followers).

So, here's the thing: Grief makes us do all sorts of things we wouldn't normally do.  We do things to feel better.  We do things to feel closer to the person we've lost.  We do things to get our feelings out.  We do normal things and crazy things and just-a-little-odd things. And, just like so much else with grief, these things look different for all of us. What complicates matters is that my normal things might be your crazy things. Your normal may be my crazy things.

Just like I spent a few minutes with Scott Simon's Twitter feed and realized what was working for him was weirding me out, I have no doubt plenty of people have surfed through our blog and thought, "Holy crap, these gals are total weirdos.There are so many examples of posts where we shared our 'normal' ways of coping and likely left some people thinking, "Uhhhh, this is crazytown."

Example One: Socks at Target Make Them Cry, and They Talk about it.

Example Two: They Take Weird Grief Self-Portraits

Example Three: They Love Deathbed Photography

Example Four: They Talk About How Grief Makes Them Crazy

Example Five: They Think Baking a Cake is a Grief Coping Skill

Example Six: Graffiti Cheers Them Up When They Are Sad

Example Seven: They Make Plans For How They Will Sulk

Example Eight: They Take Photos of their Loved One's Graves.

As many people as we scare away with our normal-for-us but crazy-for-them grieving, we have other people faithfully coming back telling us they relate to us and our grief. We like to believe this is what will, slowly but surely, change our society's experience of death and grief. You may never get my weird grief stuff, but hopefully you get a little more comfortable with the idea that my weird is normal. I may never get your (or Scott Simon's) weird grief stuff, but I also get that your weird is normal too.  We will never all grieve in the same ways, not within our families, not among our friends, and certainly not within the wonderful online grief community.  But what we can all do is strive to embrace the idea that if I am okay with your weird grief and if you're okay with my weird grief, we can all be normal-crazy-weird-grievers together, without apology.

Is deathbed tweeting ever going to be right for me? I sure don't think so... but maybe.  Even if tweeting at the deathbed feels weird to me forever, I am still unbelievably grateful that it is working for Scott Simon and for his many followers.  Is Scott Simon going to bake through his grief or start taking self-portraits tomorrow? Probably not. But if he does, hopefully our blog will let him know he certainly isn't alone, and that  crazy is the new normal.

Done some weird grief stuff?  Of course you have!  We all have!  Leave a comment to tell us about it.  Don't miss our ongoing disclosure of our weird grief stuff (because let's be honest, we've barely scratched the surface). Subscribe to get our updates by email.

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One Comment on "Deathbed Tweeting Makes Me Uncomfortable, And That's Okay"

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  1. teresa  July 3, 2017 at 9:03 pm Reply

    I agree, it is uncomfortable but beautiful as well. So many things we do as human beings are awkward but can really open our hearts to the experience we all share if we allow ourselves to sit with the discomfort. Scott did a beautiful job, I think, of sharing his relationship with his Mom as she went through her dying process. Not everyone would want to do it but I was glad he did. It may encourage others to embrace the dying process with less fear.

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