I was supposed to be at the Sundance Best of Fest tonight. Snug in the Park City Library Auditorium seats with my bestie and her best guy, watching some tip top new films and sharing a fun experience. But I’m not there. My body vetoed that. My body has been pretty much an asshole for a couple of weeks and tonight I discovered that my body in asshole mode does not make for a pleasant dinner guest. Or a hostess.
My Mom came over tonight to hang since I couldn’t go out. When I’m in a super long pain stretch, there’s not much to do but wait it out, but being my Mom and loving me like she does, that gives her a great feeling of helplessness. To just watch. Wait. Listen to me try not to cry. So, she does the sweet thoughtful things she usually does, but with extra purpose: She brought tater tots, french fries and Perrier. The Holy Trinity of “What Makes Heidi Happy.”
My Mom came to take care of me. She came to be a mother, and yet I didn’t let her cook one thing, get her own drink, or take her plate to the kitchen. My stubbornness and embarrassment over being weak and controlled by pain kept me on my feet (kinda-leaning on counters, walls and chairs.) I wanted to cry from the pain the entire time, but I waited until My Mom left. Between the excitement of snacking on Red Robin fries hot from my oven while I introduced my Mom to the “Librarians” and giggling about my crush on John Larroquette, I kept trying to take care of her.
Seems to me that when my body is in asshole mode, my brain turns into “cowering shivering don’t show anyone how weak you truly are or you’ll end up in permanent fetal position” mode. Thing is, I needed to cry my eyes out. Still do. I needed her to hold my hand (we tried that but touching me hurts so it was a no go.) After forty years of dealing with Ehlers-Danlos Syndrome and its ramifications I expect myself to be better at this. Clearly, I expect too much.
I have so much to learn. I’m grateful for the patient people in my life that volunteer to come over for dinner. 😉✌💖🎉
I popped my left hip out last night. I was walking, from the kitchen to the living room. It wasn’t one of those Ministry of Silly Walks walks either. Well, maybe after my hip popped. It went out, then in, which is preferred. I have had my right hip stuck in the partially in/partially out position before. Don’t recommend that. In retrospect what seems silly to me (not haha silly but bordering on absurd) is that I am now at risk of dislocating simply while I ambulate. I am careful when I get off the couch, get out of bed, get out of cars, roll over in bed, get out of the shower, go up and down stairs and on and on. I don’t like it when people walk behind me when I am in a group. I get severely nervous. I’ve been bumped too many times and then bam, knee is out. Plus I’m slow and I don’t want to hold up anyone and the thought of them watching me gimp from behind is hella embarrassing.
When I was younger, we are talking elementary and middle school age, I wasn’t as embarrassed about being so freakish. I took to it. Took advantage of it. Friends would ask me to do tricks: Jump chinese splits, clasp my hands behind my back and while keeping them clasped bring them over my head to the front of my body, fold my fingers over each other and bend my wrists back and forward, stand with my face against the wall then do a back-bend bringing my head between my feet, lie on my stomach and bring my feet over my head and rest them in front of my face (this last one I would do while watching TV.) I knew I was different and by volunteering to do these tricks I saved myself from being teased when all of a sudden I would go missing from school for an EDS related illness or I would break a bone from something so simple as tripping.
Now that I think on it, I guess I have my own silly walk. Priory of Preposterous Promenades? Cloister of Wacky Shufflers? The thing is for me to remember to laugh at myself, and the ridiculousness of it all.
It has been over a month since I haven’t wanted to cry for most of the day from the pain. Over a month that the pain from Ehlers-Danlos has kept me from the majority of my everyday functions. I am grateful (it isn’t a strong enough word) for my family and their assistance, their patience and most of all their humor. Laughing keeps me sane, keeps me grounded and reminds me that the pain will subside. And it does. It always does. Sometimes (more often now) it takes longer than I expect. So days like yesterday can happen, where I drove myself to the store, played music and sang along, walked the aisles of the store without having to hold the shelves for support and have people stare. Days like yesterday where I looked people in the eyes and smiled, and meant it, remembering how wonderful life can be when you are out in the world and can see the sky, feel the breeze and watch life go on knowing you are a part of it without the distraction of oppressive pain. My eyes felt so wide as I was able to notice everything outside of me.
Yesterday was a good day.
Look who’s back. Back again. I’m not the real Slim Shady, I also don’t play one on TV and I’ll have that song stuck in my head now for at least three days. I’m mostly writing this so my Uncle Frank can rest easily tonight. I’m nice like that, and I have my goal/mission to complete.
With Ehlers-Danlos comes lots of pain. In lots of places. I don’t mean to say Saskatoon. Okay maybe Saskatoon. Places as in the topography of my body. It hurts. All. The. Time. The struggle with the constant stream of pain is deciphering new pain being layered on top of old. Decoding my normal abnormal from possible and new and dangerous abnormal abnormal. Second judgements and talking out of concerns or into some. Should I care about this new pain as much as the last time? Should I bother with the doctor or another ER visit? Nah. It will be nothing (nothing meaning EDS and there isn’t much else to do but slap a pain pill on it.) So, I hem. Then I haw. Then I hurt and hurt until I finally give in (that’s how I look at it anyway) and I go to the doc. I decide I’d rather look foolish than dead.
I’m not dead. I’m not foolish either.
Okay, maybe not %100 foolish. More like %70/30.