Forgetting and Remembering My “Why”

Lately I’ve been feeling stressed about my writing. Maybe I don’t write often enough. Maybe I don’t share on enough platforms. Should I start tweeting? On top of this self-induced stress, I have been dealing with feelings of pressure to click, like, support, and follow other bloggers and guilt if I don’t subscribe to newsletters and join yet another chronic illness support group. I am overwhelmed by my social media life and I wonder how I let this happen.

The Origins of My Cyber-life

On-line support groups can be a bit of a blessing and a curse. When I was first diagnosed with Crohn’s I became ferociously involved in the virtual world of illness specific chatrooms. I learned plenty from my cyber friends and will always feel an abiding measure of gratitude for their willingness to share and assure me I was not alone. Oh, there were trolls back then and other nefarious types always at the ready to stir the pot but they weren’t the norm and they were quickly stifled. Fast-forward 14 years: The number of places on the internet for help and information has exploded and the dark side of it all has kept pace.

“I’m Tired, Tired of Playing the Game.” Lily Von Shtupp

Jumps to judgment seem to be more prevalent these days. When you are doing well, you want to share and you also can’t sound like a braggart (Do you even have a chronic illness; why are you here?) And when you feel abysmal and want to cry, you don’t want to come across as desperate or hopeless, even if it’s exactly how you feel (Whoa dude, you need professional help!) And heaven forbid you put it all out there only to be minimized or one-upped (That’s nothing; listen to what happened to me!)

I’ve been involved with some stellar groups where cultivating an atmosphere of practical support was their number one priority and I’ve stumbled into just as many that are exhausting. The clinging to pseudo-science “cures” (ah no, essential oils will not cure anything), relentless MLM (AKA pyramid schemes) sales pitches, and typos can be too much to tolerate.

Then there are the unfortunate souls, stuck in the past, unable to move on from old hurts despite receiving the advice and solace they seek. So while it helps to know I’m not alone in my chronic illness struggles, now that I know I’m not alone, do I really need to stay engaged with people rehashing ancient miseries or shilling for a MLM? I think not.

I’m Chronically Ill, Not a Pawn

Join one group or write one story and the rest of social media beats down your door looking for a piece of the action. My news feeds are non-stop full of ads; groups to join, pages to like, and sketchy products to buy. I receive email alerts, pings, and notifications all too often. If you like my page, I’ll like yours. Visitors to your page haven’t heard from you for a while, write a story! Others in your group are sharing, why not join in? Come see what you are missing! You have unread notifications. Ugh!

I highly doubt some poor someone has been checking my profile, searching for new content, and has sounded an alarm out of concern for my well-being. Nope! Cleverly designed algorithms prompt me to get involved and share. Website growth and strength depends on the generating of clicks. The more members they have, the more clicks they get, the more sponsors they can get, and that’s brings us to the real boss, money! Well I’ve had enough; I’ll share when I want to and with who I want to! And there it is.

I’ll Share When I Want to

As I was working through this piece, I recalled a similar grappling session from last year. I re-read that post in hopes of rediscovering my “Why.” Why did I start a blog? (the-process-is-the-goal) Re-reading my words of wisdom helped to ground me and bring everything back into focus.

I write because it helps me to sort my life.

I write because it soothes me.

I’m not creating a brand.

I’m not looking for fans.

If my words help another, I’m humbled.

It’s none of my business what others think of me.

So I will write when the mood hits me and bid a fond farewell to many of my on-line support groups and take a sabbatical from the few I will stay in. Social media will not go dark because I decided to leave a few groups, unfollow a few pages, and click a little less. I however, will shine on.

All photos from Pixabay

My Inside Job

I truly dread meeting new people. Small talk and idle chit-chat usually lead to being asked anxiety producing questions like “So, what do you do? Where do you work? Are you working full-time?” Where is a trap door when you need one?!

I never ask anyone these questions because I don’t want anyone to ask me these questions, because I don’t have an answer, well a good one anyway. Since I was 15 years old, I’ve always had at least one job. I haven’t had steady work for about six years now and I really don’t like to talk about it all that much. As a person living with chronic illness (that sometimes needs a two hour nap after a trip to the grocery store) I just don’t have the stamina, for a job or the conversation.

When I meet someone new that asks me about my work, I usually say something like, “I’m between gigs right now.” If they press for details, I start stammering a long and turbulent story of my work history (AKA: my resume) in a desperate attempt to let them know that there is nothing wrong with me, I am employable.  I usually leave my medical resume out of my ramblings. I’m not sure, but I bet there is probably some Emily Post rule out there somewhere about the timing of introducing the topics of brain surgery and bowel habits into a conversation with someone you’ve just met.

It’s when we part ways that I beat myself up, wonder why I said all the dumb things I said. I get caught up in comparing myself to others, thinking that I’m not good enough or worthy of their time because I am not gainfully employed. I find myself projecting what they may be thinking, are they judging me because I do not have an employer? Do they think I’m lazy? If only I tried harder? Am I too picky? I berate myself for not having a job; if I had a job, I’d have an acceptable answer. Over-thinking: 1 Kelly: 0

I’ve tried making my employment status into a joke by giving clever yet evasive replies. After a few chuckles from the crowd, I somehow end up apologizing for being flip and go back to my old spluttering script. Here are a few of the responses I have tried:

·         Self-unemployed –One time someone responded, “Oh, an entrepreneur, how exciting!” I’m not sure if they missed my joke or if they were playing along and I missed their joke.

·         Domestic Goddess -stole this one from Roseanne Barr. Usually makes people laugh but I think most don’t know of its origin, I’ve actually had to explain who she is and it kind of takes the fun out of it.

·         Alchemist-I can take ordinary water and make the most fabulous soup you have ever tasted. And at Thanksgiving, give me the picked over turkey carcass and I can feed you for days. Actually, I’m very much like Jesus; water to wine, loaves and fishes? Please!

·         Professional patient -While true, it does catch people off guard, makes them uncomfortable and head for the hills. Essentially it gets me the result that I claim I want; to be left alone.

Seriously though, after some much needed self-reflection, I’ve come to realize that yes, I indeedily-do have a job, it’s called, Taking Care of Myself. What I don’t have is a paycheck.

The other day, I decided to test this new response out. I was attending a conference and someone asked me one of the million dollar questions, “Do you work full-time?” I calmly answered, “Yes, I work full-time at Taking Care of Myself and waited for her reaction. She didn’t ask for details so I offered none (I thought my head was going to explode!) She just smiled at me and said, “Good for you!” Over-thinking: 0 Kelly: 1

Photo credit: geralt via Pixabay

The Process is the Goal

The process is the goal. I love that mantra and I do my best to embrace it.  Lately though, when it comes to my writing, I’ve lost my focus. I’ve forgotten why I write and who I write for.

Why I Write

Writing down the stories of my life with chronic illness helps me find stillness in the madness. Writing helps me slog through the clutter and allows me to see a situation from many different perspectives. Writing is also cathartic; it guides me through a jumble of emotions as I search for middle ground between rage and Pollyanna. Hence the name of my blog, Write Down the Middle.

Who I Write For

I write for me. My stories are my thoughts and reflections about moments in my life. And when I am feeling a bit frazzled or melancholy, I can go back and reread a story or two. It’s like giving me my own pep talk. And I can think to myself, “Gee, you really are amazing Kelly Girl! You’ve survived so much, you got this!"

How I Write

For me, writing is an extremely painstaking process. To quote Ringo Starr, “It don’t come easy.”  It may take me a month to write one 600-800 word essay. I agonize over every word; I will read what I have written over and over and over. Did I make my point? Could I say this in fewer words and not lose meaning? I write down all my thoughts and work them until they become sentences. Then I move them around like puzzle pieces, kind of like those old sliding tile toys that have one open space and you have to keep sliding tiles back and forth until you get them in perfect order. The rub with writing is there is no perfect. There comes a time when you just have to hit save and send!

When I finish writing a story, it can take some time until I have the fortitude to write another. And in that lull, while I am resting and re-energizing, comes a certain peace, a calm that I struggle to explain. It’s almost like I am empty and then life happens and I start to get filled up with ‘stuff’ until I reach a point of such fullness that I got to let it out.

Why I Share

By sharing my writing, I have been offering friends, family, and strangers little glimpses into my chronically ill life. My intentions were innocent enough, to foster some awareness and understanding of the illnesses I live with every day and maybe offer comfort to others in the chronically ill community. Lately though, I’ve confused the understanding with approval. When a story I’ve written goes ‘live’, I’ve become like a rat in a Skinner’s box, checking my social media accounts looking for the sweet validation of ‘likes’ and ‘shares’. How many today I wonder; none… really? “But it was such an enlightened and earth shattering story, why haven’t I gone viral?!”

Lesson Learned

Earth to Kelly- You don’t need outside approval! Calm down and go make a sandwich or something. Thanks, that’s some good advice right there! OK, just being a bit silly. But seriously, I shouldn’t concern myself with whether anyone likes my stories or even reads them because that’s not on me.

I will do my best to be done with obsessing over what others think and what I think they are thinking. It will always be special when someone finds meaning in my words that is the gift, the bonus, not the goal.

The process is the goal.