Subscribed: Did I Really Just "Like" Colorectal Cancer?
Social media. It’s a double-edged sword. Correction, it’s – maybe – a nineteen-edged sword. So much to love, so much to hate.
Facebook has brought me in touch with a bunch of people from my past, practically removing the term “whatever happened to…” from my vocabulary completely. I’m so delighted every time I read a post from Jolene, for example, a high school classmate that I adored and admired, then lost track of for 20 years. She cropped up a bit later than most of the other DuBois High School Class of ‘93, but I found that we have so many important things in common, and it makes my heart smile when I’m reminded of one of them. She’s a single woman with teenage kids that she adores. She has gone through an involuntary bald phase. Her sarcasm game is absolute fire.
I’ve also been blessed a thousand times over by this very blog and DailyUV in general. I can’t believe that I have the opportunity to write all of this stuff down and hear the feedback of friends and community members who have been affected by it somehow. How lucky am I? Not to mention the inherent pleasures that come with reading about Tom H’s Lego fantasies and Rob and Mark’s race from Payless to Kohl's.
There are certain Instagram and Twitter feeds that utterly enrich my day. They distract from the awfulness that surrounds us, or they push a little bit of hope out into the abyss. It feels less terrifying to be trudging through these days when you know you aren’t alone. Don’t you dare take away my @dog_rates or my @salt_collective. I super need them both.
I need dogs like Graham in my feed to balance out the terrible.
And, whether I like to admit it or not, online dating has been an adventure. I’ve added some really great friends to my life and gotten some fodder for a book that may or may not get written in the time I have left. Even if it doesn’t, it made for some very entertaining bike rides with my friend Vicki, as I regaled her with the stories of the nut jobs I have been out with over the years while we cycled up and down 12A. If you are reading this and we met on Match.com or OKCupid, you definitely weren’t one of said nut jobs. Probably.
So those are the positives. You probably could recite with me all of the negatives. The “fake news,” sensationalism, impossibly high standards, phony accounts, phony lives, phony ‘likes’…
Here’s the one I’ve been wrestling with this week:
I joined a support group on Facebook for colorectal cancer survivors. A group of true warriors. As with all cancer, this type manifests itself differently in every single person. As I read one person’s description of their path, I might think at first that it is like mine, but it inevitably veers off to a unique place that I can’t directly relate to. And if I were to speak out and tell my own story, others would connect to specific parts, but almost certainly be able to cite several major differences as well.
But it’s nice, living up here in such a sparsely populated region, to find others who have something similar to what I have. It’s a gift to relate to others who dread the oxaliplatin-induced hell of cold sensitivity and neuropathy, or to commiserate with another mom who isn’t sure whether or not she’ll live to see her kids graduate. Every once in a while a member will ask a question about a certain treatment or phase that I have been through and can offer my experiences with. Occasionally, I read something that helps me with my own treatment.
It can also be really hard. It’s hard to read about the NEDs. “NED” stands for “no evidence of disease” and it is a magic phrase to those of us in the midst of treatment. It’s a dream, but also kind of a curse, because it’s never an absolute. There is always the possibility that the disease will come back. But still, it’s better to be NED than not-NED. For me, NED has been an elusive fellow.
When I read someone’s jubilant NED story, I burn with envy. That’s an ugly thing to feel, isn’t it? Why would I stick with a thing that churns that up in me? I’ve got to think about this for a few minutes...
On Facebook, when I find myself hate-following people (where the drama or the opportunity to complain about another person’s choices are what keep me clicking), I unfollow. I try to develop my relationship with them offline instead of the one-way, virtual superiority of the social media world. It’s almost always better that way, although I do sometimes miss important events of their life. Ultimately, I have decided that, if I don’t hear about it directly from them or through mutual real-life friends, I probably don’t deserve to know. People live without Facebook all the time, right? What makes me so special? For better or worse, those folks are easier for me to love and feel generous toward once they have been hidden.
So, yeah. Do I really want to follow a group that makes me feel the ugly feels? On the other hand, will I miss their support when things get bad for me? Come on Facebook. You know everything about me. Why can’t you figure out which posts I should see and which ones to hide? Maybe Alexa can help you…
Update: I no longer get notifications for posts to the cancer support group, and I’m getting pretty good at quickly judging which of the ones I see are worth stopping my thumb for. That's what's working for now. The beauty of the 'Book is that you can always change your settings. Maybe I should suggest that my oncologist try this with me. Just unclick the 'cancer' button and keep scrolling, Doc.