A long time ago I started this blog with the vague idea that I would become a titan of the blogosphere, writing about being a mom and a lawyer, writing about saving the environment for my children, writing about making my own baby food while crossposting articles from my side gig writing for Attachment Parenting International.
During this time of grandiosity I studied the art of blogging as only a woman who just sat for the Bar Exam after three and a half years of intensive study and then became a stay at home mother in rural New Jersey can, obsessively. I learned you are supposed to choose your niche and write about it passionately, truthfully, and with a raw openness that lets complete strangers into your bleeding inner core in a way you don’t even let your friends in.
That my dears is the way to internet stardom.
Well I don’t have a problem with writing passionately, or really with bleeding my feelings all over the internet. Y’all are really pretty decent and besides, it’s not like I’m going to run into to you at the next cocktail party and have that embarrassing moment when you recognize me. No, my problem was always the niche.
See I, my dear friends, am an interest whore.
I am interested in ALL THE THINGS. I want to read about the things and learn to do the things and write about the things. I want to blog about being a mom and a spoonie and an artist who paints and also makes stuff in 3D and also draws and also makes cards but is also a poet but also writes serious stuff but writes about being sick but can cook and wants to share recipes and loves to take pictures and did you know I make jewelry and am a silversmith and am looking at wood working and oooooh let me share my photography with you and here’s the song I started writing to go with the Kalimba I started playing to help with pain management and do you Yoga and have you tried kayaking and did you know the neuroscience behind exercise and fibromyalgia and the venom in tarantulas in Peru and I have some really good ways my husband and I deal with being chronically ill and I can share those with you and I can talk about parenting teens and….
Yeah. What I am passionate about and interested in is the same thing a fleet of hyperactive squirrels on too much caffeine are interested in and passionate about. Everything.
So after years of trying to write about what fits in the narrowly defined idea of a blog about something other people might like to read I have just given up officially and am just going to put it all out here.
I’m writing down poems and sharing the art. I’m going to talk about the pain and the things that help, the kids and the world and the interesting things I find. I’m going to share and overshare and I am going to enjoy it. Because I finally did find my niche.
Ugh whatever is up in the Rocky Mountains right now is seriously sadistic. Nearly everyone I know is having unusual numbers of headaches and those of us who were already living life in the unusual column are clinging to the edge of the ledger by our fingertips praying to gods we don’t even believe in that a Peruvian Green Velvet Tarantula comes along and bites us.
That being said I walked today. I was able to do so because an amazing friend of mine created an amazing device for me.
See, I have some combination of facial neuralgia and parathesia that moves around my head. Some days I can wear glasses and masks and hats just fine. Others I can’t touch behind my left ear. Other days a wind across my face sends me to my knees. Lately I haven’t been able to wear anything behind my ears or touching most of my head for longer than a few minutes without my headache ramping up to GO-LIE-DOWN-NOW proportions.
As we are still amidst a global pandemic and I value my life and the lives of others this means I haven’t been able to go anywhere for very long.
Scott is a maker. He is a creator, a daydreamer, an inventor of wonderful things. He fiddles with things to make them better. He is strange and funny and wonderful and when I texted him and told him I needed his help he dropped everything to invent me this:
Why yes, that IS a neck mounted headgear-like device to hold your mask flush to your face without it touching the parts of your head that have inexplicably decided that touching is verra verra bad.
So now even though my body doesn’t like wearing masks and the world is still basically a dangerous petri dish I can now go to the grocery store or for a walk with my husband and dogs without suffering for it.
What is the point of all this rambling?
There are three points actually.
Point one: I am on day three of my exercise for 15-20 minutes every day regardless of how I feel fibromyalgia treatment streak. Yay me! (Y’all are my accountability partners. Don’t you feel lucky?)
Point two: If you see an oddball creative person that thinks differently do walk past them afraid to meet their eyes. Go introduce yourself to them and try to see if your weird meshes with theirs. You never know when you will need a creative fiddler in your life.
Point three: If you are an odd duck, don’t fret. There are those of out here who celebrate and value you precisely because you don’t think like everyone else. If you feel alone now hold on. You will find other oddballs (like I did. I now have a lovely chosen family of tried and true oddballs in my life) to be your true self around but better yet, the older you get the more non-oddballs will see having oddballs in their lives make those lives fuller and more fun. So don’t give up. You are important. You are made of stardust. (Literally. Ok, I know we all are but I like to think we strange ones have just a little extra stardust than everyone else.)
Because it can produce a few notes, tho they are very flat; and it is nevar put with the wrong end in front!. Lewis Carroll.
Because it’s satisfying to be in the presence of both. Me.
I have the use of a lovely antique writing desk thanks to my parents. It’s a happy little desk, about three feet wide, with a fold out writing surface, spindly long legs, and a number of little nooks and crannies within it for my ink and pens. It inspires correspondence and brings a sense of peace to me when I sit down to it of a morning. I have paired it with an antique wooden chair with a soft cushion on it and it sits beside my bed providing constant temptation for letter writing.
So if you want a letter, send your address to firstname.lastname@example.org.
Managing life with chronic illness requires savvy spoons