Feel Me, Don't Fix Me
Last updated: October 2018
What’s so hard about peace, love and understanding?
First, my apologies to Nick Lowe, who composed the 1974 Elvis Costello hit “What’s So Funny ‘Bout Peace, Love and Understanding?” For me the “Funny” part refers to a settled cynicism, over-baked and caramelized until it’s hard as a hockey puck and just as tasty. So I’m going with the hardness whole hog. It gets easier to do that as time ticks by, as MS makes my 60-plus spastic body lurch forward in fits and starts, and as inevitable signs of wear show the passage of time. We harden rather than ripen. Scar tissue is harder to cut through than virgin flesh, but the cut is just as painful. Emotional wounds seem so much worse.
Growing more isolated
Progress does not equate to a developed compassion, not in our institutions, whether secular or sacred, nor in our social groups. We seem to grow more isolated from each other. Compassion, support and understanding for those outside our clan cannot thrive if we stay within our protected enclaves. Why else do we flock to disease forums? Social media pages have been functioning as our own protected enclaves. But I see a troubling trend toward what I’ll call “cynic creep” that is infiltrating our safe havens. Have you noticed it?
How big is too big?
Years ago you might have started down a path similar to mine. I found a small, intimate MS group on WebMD back in 2009. There were a few squabbles here and there but only because someone misunderstood somebody else and it soon calmed down. We were tight. But growth and change were thrust on us and everybody bailed on WebMD, fleeing to Facebook and continuing the conversation in a private group. To stay intimate and caring, the group had to stay small. But that’s a difficult thing to measure. How big is too big for a disease forum? Can it get too big to keep functioning as shelter from the storm? At what point do we sacrifice caring about others’ feelings? Feelings so precious to us in a small group that we held back our comments to think through a response and then carefully, thoughtfully dole out our remarks?
What social media is for
Bigger means less personal. We can’t know the details, names of partners and children, life journeys, allergies, names of pets and grandchildren, things that foster intimacy. Bigger forums can invite speeches and promote arguments. Threads created by sharing an article link aren’t used to discuss the articles as much as they once were. A lot of readers don’t read the articles, preferring instead to comment impulsively about the title--or about something else entirely. But this is what social media is for.
Social media is about people venting. It was created for that, driven by it, and is apparently quite profitable or it wouldn’t still be here. There is so much I like about it — and so much I resent. Sometimes I think it’s an age thing but I’m not really sure. The internet was invented when I was not young anymore, and social media was invented in my middle-age. Hate, rudeness and ugliness have always been with us and in the same quantities — it’s just that before the internet it wasn’t in my face all the time. I enjoyed white privilege and a quiet suburban life, so it was easy to avoid ugliness. Fifty years ago in 1968, I was eleven years old and can remember well how easy it was to unplug and find a refuge, a safe haven. All I had to do was turn the dial to OFF on the radio and TV, and stop reading newsprint. Unplugging these days is so daunting for me that I’m at a loss for how much to let go and what is valuable enough to keep exposing myself to. My problem-solving brain is tired of and exhausted by all the choices it has. So my mind wanders down a mental road looking for a safe haven.
My despairing mantra
A safe haven is a place where broken people can go to get comfort, empathy, support and understanding. We go there to be felt, not lectured, challenged, and dismissed. So many times outside that haven I have wanted to tell people feel me, don’t fix me. That despairing mantra drove me to WebMD years ago. It might be the thing that finally drives me away from Facebook. But I doubt it. Right now, anyway, it feels like I’m stuck in quicksand. The more I struggle to break free, the more it sucks me down. So for now I’ll stand very still, quiet as a mouse, and wait.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: