Storytime

I wrote this because the pain kept me from sleep. Me and the light of my laptop screen in my darkened bedroom trying to sort out a night of tossing, turning and crying. It is jumbled, it is sour, it is bleak. Just like my state of mind at that time. It isn't particularly uplifting or fun, but it is truthful and I needed to write it.


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.

Keyed

Hello. Howdy. Hey there. How you doin'? Don't know if anyone really noticed but myself, but I haven't been too active on this here blogging scene in quite a while. Lost the taste for it. Got some feedback that didn't feel right in my mouth, in my head and in my heart. So I stepped back. Way back. Kicked up my Instagram presence like a bandit with a stolen filter and something to prove. What it proved is that it isn't enough. I need to write. I have been trying to write. I have a couple of screenplays in the works and I spat out a super short essay one afternoon, but these blogs prime the pump that is my imagination and my creative core. They calm the storm of me and sometimes release a flood-tide of news. I am in constant doubt of what I have to say and share. If it is mediocre, predictable and boring. That is the curse of being a writer.

That is the blessing of being a writer.

Love Notes

I recently went through some of my memorobelia boxes (I do this) and found an old jewelry box with notes from friends and cousins all the way back to elementary school and junior high. I didn't find any from Stephie.

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.

Love, Heidi.

Gold Star

I had resolved to be a nobody. Nothing of major importance. Not a big shot, no big time. No awards, no fanfare, no pink Cadillac, no Cadillac at all for that matter. I'm not going to the moon, I'm not going to Africa, I'm not going to to have my name on the side of a building (even if it is on half of the western world's boobs and butts.) I haven't invented anything. I haven't discovered anything. I didn't build a medical device out of Lego bricks and I'm not diving the Mariana Trench.

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.

You've Got Voicemail

Apparently some people don't like receiving voicemail. They don't like having to take the time to listen to it, the time to find out what is needed, wanted or expressed, and the main irritant is the notification. That someone had something to say to you, with words, from their mouth, instead of an email, Facebook message, tweet or text, is not first to mind. The sole objective is to get rid of the accursed notification.

I had never looked at them as such an inconvenience. I always loved coming home and seeing someone had called and left a message, letting me know I was thought of. That's the kind of messages I leave. Yes, they might ramble. Okay, not so much might. A sort of exercise in free form messaging. Just my way of telling you how much you mean to me, right in that moment, before I don't get another chance. Because who knows? Long ago, in the 1900's we used to send letters and cards in the mail. That might happen once a year or twice if you have loving and older family that send Birthday cards. Now, people don't even want messages on their phones. Maybe I should just write it all in blogs.

Beep.

With Care

I believed in Santa Claus until I was thirteen. This was a collaborative effort in part of what seems to be my female version of the Peter Pan syndrome, our family's yearly Strong Family Christmas Party and my Mother's dedication to preserving magic in the purest form, love.

I knew that the Santas at the Mall weren't real. They were his helpers, duh. I asked all the usual questions kids ask about the improbabilities, the incongruities and down right impossibilities. But the truth is, even as I grew older, and my friends told me there for sure was no Jolly Fat Man that circumnavigated the entire world in one night and gave presents to EVERY CHILD (we won't get into the chimney discussion see The Muppets Christmas Special for that) I knew he was real because every year I met him. The real him.

At our yearly Strong Family Christmas Party (or The Santa Party) the four Strong daughters Shirley, Joanne, Carole and Claudia, and all of their children, and their children's children, and so on, gather for a Christmas program, treats and the penultimate meeting of the Santa. I mean THE SANTA. He has a Good Book that knows things only a Santa can know. How you talk back, or how you are doing so much better in Social Studies this year (remember Social Studies?) He knows that you missed a lot of school because you were so sick and he wants you to listen to Mom and Dad and take care of yourself, he knows you have a brother and step-sister and you love them even if you fight with them. He knows about you and he is kind and you can see your name in his Giant Red Book as you sit on his knee. You watch it happen for all of the other kids at the party and he sings and dances and tells jokes too. He is a giant red wondrous ball of joy and he's real and he's right in front of you.

So what if one Christmas Eve I hear my parents giggling in the hallway TRYING to be quiet (but making it so much worse) as they attempt to put together a huge cardboard playhouse for Todd before my brother and I wake up at the crack of dawn and it was supposed to be from Santa? I still believed in Santa. So what if THE ONLY TIME Todd and I snuck and looked for our Christmas presents, it was the one thing I wanted the most in the whole wide world, a Cabbage Patch Doll, and it came from Santa on Christmas morning all displayed in my baby rocking chair and baby blanket? I still believed.

I finally found out, officially, when I was looking up a phone number in my Mom's little blue phone book. My mother has the most beautiful penmanship so the entire phone book was filled with her hand. I don't even remember what number I needed but as I was scrolling through then all of a sudden there it was, SANTA printed out with an 801 area code. My mother never uses print, and Santa's cards always had a different writing on them. I didn't feel duped, or stupid. I didn't feel lied to. I felt loved and protected. I felt adored. I still do.


I still believe in Santa. My Santa is the magic warm glow that fills me up when I am with my Family, Friends and Furry Fuzzies. I can't wait for Santa to visit this year.