Monday, November 9, 2015
Then there's the dinners. Yeah. I get fed delicious meals too, when I go over to make all my fancy clothes that are sewn for me by other people get clean in this magic machine and then get dried by another. Modern marvels at my fingertips. With company and food. Jackpot.
I'm also grateful for blankets. I've been given many blankets as gifts over the years. I have so many by now I can barely store them all. Each blanket on its own is a patchwork piece that covers my timeline. I feel so thankful that I am in my home, with a warm fuzzy, cozy blanket that not only covers me and keeps me warm from the chill outside, but warms me inside with memories.
Friday, November 6, 2015
I was in a state of utter Couch Potato, watching one of the Law squiggle Orders when I started monitoring my inner dialogue during a commercial break.
This was A to Zed being written across my blank page as advertising was being spat at me.
"Mmmm, I love pancakes. Pancakes are the best."
"Socks are so great."
"Biscuits are good too."
The sound of Pickle drinking loudly distracts me and I look at him. I smile.
"You are such a loser."
"WHAT? What the hell?"
I start laughing out loud.
"Pancakes ARE really good."
I've been thinking about thinking and paying attention to the story I write everyday in the inside of my being. I'm thankful I can edit and rewrite. I'm also so so thankful my story isn't over.
Thursday, November 5, 2015
It is already five days into the Thankfulness Challenge. I seriously considered not doing any posts at all, then decided that since nothing starts on time here in Utah and even if I was late to the party I'd still enjoy myself, here I go.
I'm starting with the forum where we are sharing all this Thankfulness. Click the share button. Thanks for sharing. I'm thankful for social media. Yup. Facebook, Twitter, Tumblr, Feedly, Pinterest, Instagram, and even that little alcove Google+.
There are many things to mock and ridicule about social media. Curse even. Comment sections are a strong argument for sterilization and drones. There are also clusters of such kindness and fun that remind you what humanity is supposed to be.
Many of you know that there are many days where I can't and don't get out of my apartment. On those days I can still be in a world of life and activity. The world is big, bad, good, wondrous and many times we feel small and can't see our impact. I want you all to know how much you have impacted me.
Tuesday, October 13, 2015
One of my stops was at T.J.Maxx and while I was there I noticed this cute little old lady in a red sweater set walking the entire store, picking up items and mumbling to herself. She was on a mission. A mission to shop.
Later I end up at Big Lots and whom do I see? Sweater Set Granny! I tell her we are on the same shopping circuit and then that is where the fun begins. I get stories in her fantastic German accent about pickles (Big Lots is the only place that carries the brand she likes without going back to Germany) delicatessens, liver sausages, her husband's sugar levels and ways to eat Wasa crackers.
I should mention that for about the last twenty minutes a kid has been screaming. Not a baby, not a toddler. A ten to twelve year old. I never saw said kid, just heard him from the other end of the store. Another shopper even mentioned it in passing "Boy, some kid doesn't want to be here."
Then I get in line. The only line because at Big Lots they only ever seem to have one check out lane open. Then, a family of four comes behind me; Mom, Dad, five year old and the ten/twelve year old wearing headphones pushing the cart. Mom asks headphone boy to bring the cart back, he doesn't want to so he whines loudly, whips the cart around and BAMMM hits me so hard in my left Achilles heel I scream "SHIT!!" so loud I know the whole store heard.
I'm hopping on my right leg and headphone kid has taken the cart away and the parents can't get him to come back. They keep asking him to take his headphones off so they can talk to him and he's screaming "NO! I DON'T WANT TO!" The entire store is dazed.
Mom - You need to take off your headphones. Then say your sorry to this lady.
Kid - NOOOO!! (He's red faced) YOU'RE MAKING ME FEEL BAD. I DIDN'T DO ANYTHING. I'M NOT SAYING SORRY!
Mom - Give me your headphones.
Kid - NOOOO!! I WON'T!! I CAN STILL HEAR YOU!!
Me - (I turn around and stare him straight in the eyes) I hear you too. You hit me really hard. It hurts. A lot. I'm going to be limping the rest of the night.
Kid - Absolutely dumbstruck.
There was much back and forth with the Mom, headphone kid and Dad. At one point he screamed I'M SORRY from behind me. His Mom said that wasn't how you say sorry. As I was putting my items up at the register he came up to me, so red faced I thought he might pass out and said I'M SORRY as if it was the most painful thing he had ever done. He was humiliated. I think we all were. I didn't say thank you. I looked him in the eyes and nodded.
The checkers made a point to get a dig in at the kid and the Mom while they checked my items. I felt so bad for the Mother I told her "It's not like you've got your hands full or anything" when I made room for her to put her items on the counter as well.
On the way out of the store she apologized and told me they just don't know what to do with him. She said he's at an "awkward stage." I wished her a good evening and limped to my car.
So, tonight I have a black and blue ankle and a leg that's turned to crap (when you ring that bell you can't unring it) pain pills, lots of On Demand movies too watch and Wasa crackers waiting to be eaten.
Sunday, October 4, 2015
When I'm with a person, an actual human I really like (let's face it love) I can barely contain how happy I am that my corporeal being is in such close proximity to their corporeal being that I must must must reach out and touch them. Their face, hair, hands, arms, back, butt (yeah I have slapped a few butts) and I also hug. Most of my family and friends have become (somewhat) used to this and they either 1. Enjoy me 2. Run 3. Have been worn down and have no recourse and complain the minute I'm out of earshot. I can deal with all three of those. I'm also sure some reading this are squirming at the idea of my crashing through their "Don't You See I'm Not Having Any Of This You Selfish Handsy Loon" Bubble.
I am selfish. I also have hands that want to hold. I have hands that were held from early on by a Mother that encouraged hugging. Her family is a family of huggers. The benefits hugs have on your health have been proven and as a very famous quote says "We need 4 hugs a day for survival. We need 8 hugs a day for maintenance. We need 12 hugs a day for growth. - Virginia Satir"
I think much of our need to hold and be held is not being fulfilled but what little that is received is through sex with partners (some without.) Families that are lucky enough to have young children and babies in their lives get more affection than others because young children aren't as afraid to hold and be held. Other means of holding and touch is fulfilled with our pets. Why should the distance between an adult human touch be either a sanitized (often wimpy and emotionless) handshake or a full on jump in the sack?
Maybe, just maybe, if grown people started to remember that they were humans that needed other humans (wait, is there a song kinda like that) and looked each other in the eye, not embarrassed, not ashamed, but excited for that spark, maybe we could shut down the YouTube comment section forever. Maybe I'll sit alone at the next family party.
Friday, October 2, 2015
Me - "What are you doing?"
Dad - "Watching an awful movie."
Me - "What's it called?"
Dad - "Uhhh, I don't know."
Me - " The movie is so bad you can't even remember the name?"
Dad - "Yup."
Me - "Maybe you should watch a better movie."
Dad - "Probably so."
Pause. He's distracted by the terrible movie.
Me - "Okay, I'll let you watch your awful movie."
Dad - "Okay."
Me - "Talk to you later Buttface."
Dad - "Later Buttworm. (giggles)"
Tuesday, September 15, 2015
Put in that mix eating, drinking, getting new drugs for my bladder, talking on the phone to my Mom, getting a joy filled visit from birfday girl Jen, planning outfits for Comic Con and schnuggling naughty shedding bunnies that make my rocking world go round.
I'm sure I missed stuff. Sure some politician said something stupid. Someone hurt somebody. Pretty sure a reality star revealed something (or some things) and a celebrity is getting divorced.
Pretty sure I don't care. Pretty sure I want all of you to tell me the one thing that you enjoyed the best this past week. The funniest, the goofiest and the loveliest of all the stuff. Because, stuff.
With all of your help, maybe I'll regret being away for so very long.
Tuesday, September 1, 2015
This totally makes up for the construction worker that screamed in my face earlier for not reading UDOT's minds when they hadn't marked off where to drive by Ogden Regional. Three other cars were confused and doing what I did but I took the time to roll down my window and ask. I wonder if he would have yelled like that at Todd or my Dad? Better yet, would he have been able to yell at anyone ever again if he did?
Good Day Sunshine.
Saturday, August 29, 2015
I wasn't cool. I was loved.
Tuesday, July 21, 2015
Standing in line at the pharmacy, crying. Small kindnesses. They matter.
Tuesday, June 30, 2015
Last night while hanging out at my parents', enjoying the first night of Todd being back from Texas, I did something many people do in the stretch of a normal day. I leaned. I leaned over the arm of the couch plugging in the charger to my phone when all of a sudden there was a loud pop on the left side of my ribcage. I squealed, then froze, then did the thing where a person asks you what's wrong but you are in too much pain and too startled to answer. So I sat there. Waiting for it to not have happened.
But it did. So The Moms, the ever wonderful and tolerant and graceful under my grumpy pressure Mom, drove me to Urgent Care and we ran the rounds. He couldn't say for sure it was broken by the x-rays, it would take a CT scan for sure. But my chest cavity isn't filled with air or blood! YAY! It is most likely the joint at the end that I popped and is making the whole rib all the way to the breatplate throb. And me groan and wince everytime I get up, lie down, pick up something, take a deep breath and forget about bending to get something on the floor. My neighbor heard me carrying up my laundry last night and came out to see what I was doing. I started laughing.
Since the treatment for a broken rib is the same for a cracked or a dislocated one, (I have two ribs on that left side in the back that are in a constant state of dislocating) he ordered a rib belt. It has made 'some' difference. Todd thought it was a weird thing to give a Vegan, a belt of ribs. He also wished he had a belt to keep ribs in, easy for snacking.
If you need me, I'll be not lifting things, or not getting up, or not raising my hands, and so on.
Friday, June 26, 2015
This is a monumental day for equality. For the surety in the concept that love is love. I am lucky and proud to have beautiful and loving people in my life that I can share in the victory of this. But not Jason. I can't tweet him. Can't tag him in photos. Can't celebrate with him in any way. There is his gravestone.
Jason was mocked, teased, ridiculed, ostracized and even beaten up on the way to his car leaving work at night. He contemplated suicide multiple times, giving away some of his belongings each time. We would sit in his car and he would cry to me, asking why couldn't he be straight so he could marry me and then everything would be fine. His family would love him, the world would accept him and he wouldn't have to live in fear anymore.
He never dreamt this day would or could come. He couldn't imagine it. He was tortured into believing he was less and worthless. Not the sweet, funny, creative, forgiving, loyal and beautiful human he was. It became too much and he couldn't fight anymore.
My joy does feel incomplete without him. But a light is shining so bright, I can see a lot of happiness from here.
Saturday, June 20, 2015
There is just enough of a gap in my front door and the frame for all that smoke to come right on inside. So I've learned, and I cram it with rags when there are smokers.
I'm on the phone with my Mom, gabbing about the day, giggling about jokes my Dad made. What I say next, I say with no hidden dirty intent, no joking, simply innocent fact.
Me- "Well, I better go stuff my crack so no smoke gets in."
Mom- Starts laughing so much she stops breathing.
Me- "I just heard it."
Mom- She laughed/cried for ten minutes.
She was still laughing when we got off the phone and I told her to go blow her nose. No need to wonder where I get it.
Tuesday, June 16, 2015
I've been growing out my hair since there was the fear of losing it when chemotherapy treatments started at Huntsman in the Fall of 2011. There have been three minor trims, but that is all. I was lucky. My hair thinned a great deal, but I didn't lose my hair completely. We planned for it. If you remember, I use the Royal We at times, because you don't go through cancer alone. Case in point of not doing it alone: My Aunt Ruthie's knitting club knitted and donated caps in the event of my hair loss. Since getting the all clear, I had a dear friend diagnosed with leukemia and I passed on these caps to her. She did need to wear them. After a time, her hair did come back. After another time, she got the all clear also, so we passed on the caps to patients at Huntsman that needed the comfort and safety those caps provided. Losing your hair is more than just, losing your hair.
I have been holding on to my hair, the ability to grow it, to not have it taken from me, in an attempt to conquer the fear that Cancer holds over you. It strips away your identity, of whom and what you thought you are, you were. My hair has gotten long. REALLY long. I had no style, no shape. It's just long. So when talking with Siss about getting my haircut, she brought up Locks of Love. "Ooooooh, why don't we donate it? Wouldn't that be great?" I said "Who's this We?" We laugh and that's the end of it. But it isn't.
I wasn't able to sleep. Why did I hesitate? Why wasn't the decision to donate the easiest decision to make? Why wouldn't I immediately feel inclined to give what I have been so fortunate to regrow? I felt greedy and selfish. Scared and silly. I literally tossed and turned for two nights straight. This August marks tens years of the world being without Stephie. Right before she passed, with all the radiation she had on the tumors in her brain, her one wish to not have to wear a wig in her coffin was sidelined when chunks of hair started falling out. She saw it as a loss of her dignity. Here I am, alive, walking the earth cancer free, balking at gifting a piece of myself that could do good. I won't be that selfish.
As I looked at the eleven inches of my hair in two ponytails, on the kindest and most patient hairdresser's station, I was dizzy with amazement and relief. Those ponytails looked like timelines for the last three and a half years. Instead of rings on a tree it was strands of hair.
I feel freer, lighter, lucky and younger. I am selfish in the joy it brings to ease someone's burden during the struggle of Cancer. To share the We.
Tuesday, June 2, 2015
I'm not on the best terms with Facebook as of late. It seems to taunt. With terms such as "What is your status" and "Life event" weighing over every log in. I don't really go "fun" places but rarely. Hell, I rarely go places. Other than the kitchen, then back to the bathroom, the bedroom and the big finale will be the living room. Reality is most of life is lived out in rooms. Yet, Facebook is the land of Keeping Up Appearances. The Put On Your Best Facebook.
I truly believe the pressure to keep pace with ALL THE JONESES really explains the phenomenon of food porn photos. I'm sooooo guilty. It also won't stop. From me or anyone. Where else does a person go everyday? Shower Selfies? That's for Snapchat. Outfit of the Day? Instagram has that covered. But it's all superficial and safe. This quest for "What piece of myself can I share that is safe enough to survive derision without exposing the core of who I am?"
What constitutes a "Life Event" anyway? Finishing a book. Unpacking that last box. A sunset that could never be captured on camera and filtered beyond recognition. Dinner by yourself. Cleaning out your junk drawer. Being diagnosed. Losing a pet. Finishing a project. Reuniting with a friend. Paying a debt. That one clear moment of inner peace.
There is also room enough to share all the pain life brings. People are afraid and bothered to engage past the headline. Won't even take the time to click if it means taking them outside their original choice of social media. I'm so ready for some real sharing and openness. I'm going to give it a try. There are many rooms. Let's sit down and really engage.
Thursday, May 21, 2015
When I was little it took me hours to get to sleep. I mean hours. I would lie in bed, in the dark, singing or trying to remember poems or passages from books. Quoting movies and television shows. Shadow puppets and plays. I would start conversations with myself then rewind them and follow them back to the beginning. Until I started to have Johnny Carson interview me, in my head, every night.
I knew The Tonight Show was where the cool people hung out. Where it all happened. I knew if Johnny laughed at you, smiled at what you said, it was magic. I wanted to be magic. So special that Johnny would ask me what I did that day. "What did you have for lunch? How was recess? Did you do your homework?" It was almost a form of meditation every night that lasted until about sixth grade.
When Johnny retired I felt this odd sense of loss. I know as viewers we all can form attachments (albeit unconventional) so when the Tonight Show went to Leno I refused to watch it. I knew Letterman should have gotten it and I was full on team Dave. As far as I was concerned, Dave was the new leader of the cool kid gang. He had the better musical guests, he actually gave a shit what his guests had to say. He was humble and his humor was so dry there was nearly a ten second delay on audience uptake. I miss him already.
The cool kids have gone over to Fallon. As have I. It's a party every night and I laugh. I laugh a lot. But I don't think Jimmy really cares what I had for lunch, how my recess went or if I finished my homework.
Tuesday, May 19, 2015
Pickle doesn't just jump on my lap for pets, he will climb me to get to the apple I'm eating but volunteering for pets isn't his style. Tonight, after all his place changes, he suddenly jumped up to my spot on the couch. This was after an hour of refusing my attention and prodding. He wanted me to hold him. I did. I rubbed his belly. He stood it for only so long then he jumped down scratching my chest pretty good in the process.
I got a sweatshirt and wrapped him in it, filled a syringe with water and gave him about a teaspoon. I kept him in the sweatshirt while I rubbed his tummy some more and he was so calm and sweet. When Pickle decided he was done being helped, he jumped down. Within twenty minutes he was cleaning himself and then jumped into cage where he's eaten some but water still isn't as interesting as it should be.
I'm on vigil. So is Peanut. Might be a long night.
Wednesday, May 6, 2015
"There is no greater agony than bearing an untold story inside you.”
― Maya Angelou
Monday, April 13, 2015
It’s six a.m. and I haven’t slept. The pain in my leg keeps me from one position longer than a few minutes and then the pain in my dislocated ribs make it even more difficult. Sleeping on my back is out of the question because of the ribs, but my right shoulder has been subluxated off and on over the past week so sleeping on my right side isn’t an option either. The left side is my leg and ribs. So I just lie here and cry. Then scold myself for crying. I shouldn’t be crying, I should be sleeping. I should have taken a pill. But I rationalized not taking another pain pill today because the few days that I gave in and took them I stopped pooping for three days after. Since I FINALLY pooped today I don’t want to start that all over again, but it is starting all over again. The pain. It won’t leave me alone. On Twitter I see chronic pain sufferers use hashtags like #spoonie or #chronicpain on their tweets to document their daily triumphs. I can see other people that struggle and suffer as triumphant and brave and that really really need to share every ounce of agony. But even when I’m alone, in the dark, crying, in so much pain I can’t believe it, something stops me. I can’t do it. It’s my burden.
I used to get mad, about the pain. Which was the overwhelming sadness on delay. I’d be mad that pain kept me from what I thought my life SHOULD be. Embarrassed about cancelling plans, again. These are not new concepts to anyone in or around chronic illness or pain. Which is why I always felt indulgent, selfish, redundant, whiny and even silly for talking about it.
I tried to share my EDS chronic pain story in the past, unsuccessfully. In passive, maybe more aggressive than I meant originally, ways. This illness, this painful body, is my story to tell. I need to learn how to tell it. Crying face down into the new bed your parents bought you so you could sleep better and not have pain all night long, is a story. It isn’t a happy smiling selfie or a funny cat meme to share on social media to go along with the day of the week; it is part of my story. Trouble is, my story is painful to live, so it will be painful to read.
Maybe with a few fart jokes.
Sunday, April 12, 2015
That is the blessing of being a writer.
Sunday, February 1, 2015
So, I'll write one.
Hey Sweetie!! It's your Birthday!! Happy Happy Birthday!! I've been doing all these super fun things lately and man oh man do I wish you could be there with me. I've seen movie stars, eaten good food, made new friends, giggled and giggled and just tried my hardest to be full of life. I miss you. I'll sing our naughty song today.
Wednesday, January 21, 2015
When I declared this to my Mother (FYI, while I'm not busy climbing K2, I'm most likely talking to my Mom) she said "Well, if you want to get down to it, we're all big fat nobody's. Just little specks on this little speck." So I countered, "Oh yeah, well you're not nobody to me."
I'm so fine being a big fat nobody, that has so many not nobody's in her life.