I would visit those with chronic illness in the hopes of interrupting their pain with joy.
It would be my own form of “distraction therapy” tailored to fit the interests of each individual.
I would take my pain and fatigue to the streets. I would meet others and we could share a belly laugh until we cry and there’s snot everywhere. Why not take our snot, sprinkle it with glitter, and use it as paint. There’s a distraction…….
I’d ask each person to describe what their body feels like. What it feels like to be them in just a few sentences. It would be a book written by thousands.
Our blended family founded on imperfection. Divorce, mental illness, physical illness, financial ruin, along with gobs of laughter, awareness and radical acceptance…….the only thing perfect here is we truly love one another and know we have nothing to hide in each others presence.
We’d like to extend warm holiday wishes to all and thank you for being a part of our lives.
We appreciate the stories and talents you are kind enough to share and for reading ours.
May we look toward the new decade embracing our difrences.
My holiday gift came early this year. Way early. A week to be exact. I say holiday cause i’m not Christian, Jewish … or as you guessed it …not African American either. I’m white and pasty; mostly English with a dash of Irish. So i don’t celebrate Christmas, Hanukah or Kwanzaa. Okay, truth be told I might have a secret endearment to the jolly ole fatman who can shimmy down chimneys without burning his chubby ass. That fondess might exist still cause my 10 year old still believes in him.
Nonetheless, I am celebrating today. The reason…the beautiful love of my life got another lease on life. Ten scary days ago we received a brain MRI impression from a radiologist that said Mare….the owner of this blog, had angiopathic ischemic changes in her brain. Fuck….thats scary, right. What the “F” does angiopathic and ischemic mean even. I can tell you….it means blood vessels clogging, circulatory pathways dying. In other bodily systems it would mean a heart attack. If your a dude, it could mean you’re never getting a boner again cause you ate to many McDonalds cheeseburgers and ya can’t pour “Draino” down your Jean Thomas to unclog the block. For Mare, with this prognosis it could mean that she may have been dealing with a disease called small blood vessel disease of the brain.
In layman’s terms if your brain blood vessels are dying you could experience early onset Dementia, Stroke, balance issues, pissing yourself….you know all the great fucking things that come with being geriatric after age 80. The only goddamn problem is Mare is 44. That’s half the age you expect such fun caregiving experiences of epic humilating proportions.
Just to let our readers know….I don’t mind taking care of Mare. Saddling her up with Depends sexy diapers. Personally i’d get the form-fitting ones with the floral pattern and the smell of coconuts and Jasmine. Or maybe wiping her ass with sensitive skin huggies flushable wipe…i certainly strike the balance between form and function. I would never want a huggies wipe that doesn’t biodegrade and instead ends up in “Flippers” mouth 5,000 miles away in the north atlantic.
It’s just that….well….i’m not ready to lose my sexy little monkey to brain loss and forgetting who i am. I am her Silverback. Her gorilla. The one who adores her 24/7 365. I love our everyday life together. Our intimate evenings. Cooking, drinking rum and cokes with a side of muscle relaxors to help us melt into the couch while singing our own perverted lyrics to Disney cartoons , reading poetry and instruction manuals next to each other on the green velvet microfiber couch, blogging from our our slightly larger than twin mattress and at times professional wrestling in a kiddy pool filled with KY jelly.
The bottom line. We found out that Mare’s occluded cerebral blood vessels are few in number and small in magnitude. So that is my Christmas gift. Our Christmas gift. It could be the best one that never ended up wrapped in box and a bow placed by Santa under the Christmas Tree. Instead the gift is right here with me conveniently placed directly under the mistletoe.
I’ve caught myself gauging the importance of tasks based on how much energy they use. Everything has a meter and comes with a price.
I choose tasks blindly as I’m not sure how much energy I have until I run out. I’m in the learning stages of illness.
Here’s a great example: I was in bed most of last week because the week before I worked 6 days. Even though I was strict about resting as soon as I got home it didn’t matter. My body revolted.
Yesterday, Jase and I had the day off together. We live near Rocky Mountain National Park. I think, “What harm could there be in taking a drive to see the mountains?” Jase can drive, I can rest and enjoy the view. Harmless.
I spent the entire day nauseous, dizzy and feeling like my muscles were burning up. As much as I enjoyed being out, the physical discomfort was exhausting.
To get my mind off myself I started complimenting strangers and petting their dogs. It’s free, requires little to no energy and makes us all feel a little better.
I’m off today, and I’m here with my “to do” list. It has everything from cutting my toe nails to getting an oil change. In the forefront of my mind: is that yesterday kicked my ass and tomorrow I have someone’s house to clean (gotta make money to survive) and a doctors appointment right after. I am well aware of the strain tomorrow will bring.
Frustrated that cleaning homes is my livelihood. If I stop working completely I’m royally fucked. If I continue putting my body though rigorous activity I’m royally fucked. Getting a non physically taxing job won’t pay as much and I’ll have to work double the amount of time.
I am searching for the humor in this. I feel like there’s a critter meandering through the maze in my brain, bumping into wall after wall after wall.
I should probably quit all this thinking and go cut my toe nails.
When a kid is pissed, sad, confused etc. they have this innate ability to turn the strong emotion into a game of some sort. It’s rather fascinating.
I have a laundry list of discomfort in my body on a daily basis. It’s enough to send me to the loony bin. Instead I will see myself as a new breed of superhero.
My eyes feel as if they’ve been punched repeatedly because I’m able to read peoples minds. Holy hell, you are all sick in the head, at least I know I’m in good company.
My muscles and joints feel like they are on fire from the lava I use to reload my lava taser.
My limbs go numb with out warning when they need a break from all the kung foo fighting.
I feel like I’m a walking cinderblock from my bulging muscles and the ridiculous costume I’m forced to wear.
It feels like I have fire ants in my underwear, well, let’s not go there, that’s a private matter. (See my post on vulvodynia if you’re curious)
Don’t even get me started on the digestive upset that I use as explosives to blow shit up.
Somedays I feel like what’s the point in trying to turn the discomfort into something funny, but it is a good distraction to focus on seeing things in a different way rather than giving in to the dark side. There’s only so much crying and complaining a person can do before the depression sinks in and pulls you into it’s pit.
If you have any ideas or tried and true methods for your own life, I’d love to read them! Feel free to leave a comment 🙂 In the mean time, keep laughing!