Lately, I've realized that I spend a lot of time thinking I need to get a blog post done and posted, but it seems like even when I have the time or ability to focus, it's hard to rally up the energy to push on ahead and find the words that need to happen to make that happen! If you've been following the
One really has no idea how much oomph it takes to make things happen when it's something one does all the time, or something one watches others do that seems like it shouldn't be that much effort. It's only when there is something that drags us down that we notice. In a post a while back I ruminated on the amazing thing that being a human being really is. No matter what abilities nor challenges we have, the fact we've gone from where we began, to where we are right now, is a pretty awe-inspiring thing when it really comes down to the details!
That's sort of where I've been hung up with the PB Project, and as bad as I feel about that, "it is what it is." Actually, that reminds me of another post that isn't as long, and is more of a musing humor sort of post. Why I'm actually able to remember any of these things, I've no idea. But it's kind of fun to have them come to mind, because it's interesting to me to see where my thoughts go when I'm not expecting them to go anywhere!
So maybe that's where this post is going?
Wherever my mind leads it.
I'm stubborn enough to keep going.
Hold onto your hats, folks!
It just might be a boring ride! Hah!
May happens to be Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorder Awareness Month, and typed out like that makes it look freakin' overwhelming, but I guess EDS and HSD really are in some ways. That being said, I'm glad that they have an awareness month, because it helps pull together all the "Zebras", their loved ones, and the medical community from around the world who are looking for help, understanding, and awareness about this crazy, rare, genetic condition that is common enough to frustrate modern medicine, but not so common modern medicine knows enough about it!
In case of interest, my story related to EDS, with links to my process, is here.
One thing that I've loved about social media is all the ways people can connect, even if what they share is rare. There are many EDS-related Pages on Facebook, for instance, and people are always trying to figure out, "Is this normal?" And, "What do you do?" Because when you have something rare, there isn't a lot of precedent that works for the general population.
And one thing I've loved realizing about a lot of these people, is that one of the greatest coping mechanisms is a sense of humor. The darker and more dry, sometimes the better! I happen to have a sense of humor darker and drier than many prefer, but that is a great way for me to deal with something heavier and colder than most can comprehend. People sometimes apologize for possibly offending me, and often I'm more amused than anyone by the corny or irreverent way someone deals with their pain. Don't get me started!
But no amount of quirky silliness can take it all away, and at the end of the day, you'll have spent the whole day coping, caring, dealing, and managing this thing, and whether you have extra help or not, the condition itself is exhausting, so anything on top of that can just drain the energy right out of you. (Cue reference to The Spoon Theory by Christine Miserandino.) And this can lead to mental and emotional murkiness or drought, to go with the dark and dry. Which I think is what has kept the post creation to a minimum. And for a while I had a beloved angel friend helping me with parts of the PB Project, but unfortunately I, the project, and the world lost her a few years ago rather suddenly, and without warning. I haven't quite forgiven life for that one, yet, but I'm working on it. Life really is too short to be bogged down by resentment any longer than we can help it.
**I should add here that I started composing this post in May 2019, and here it is, over a year later, just kinda hanging out, wondering if it's even going to have the courage to get posted. But I've had some friends confide in me that they've begun their own quest for answers, and whether it leads to a similar diagnosis or not, the journey is such a familiar one for so many, these people need to know they are not alone, as do others I've not become aware are also stumbling along with us. Perhaps you, too, or someone you know and love. It doesn't have to be Zebras... We're all on a journey that we struggle to continue, sometimes. We don't have a lot of online navigation instructions in how to live our lives.
And thus, a new post is brought into the world, blinking and confused, possibly a bit overwhelmed and feeling really timid because it's been such a long time coming. But maybe it will benefit someone? I can hope.
Better days ahead, my friends.
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