Hello Word Nerds!
Kindly watch the rambly, informal quick new video below…
And, kindly let me know how you’re doing?
Grateful for a check in and to know how last week was for you.
Tons more pieces scheduled for next week!
‘“I’m staring down the barrel of my life imagining being able to sit at my daughter’s high school graduation”-
I told the neuro specialist-
“But because of my quality of life right now, it’s hard to be able to see getting there.”
I had injections a couple of weeks ago that didn’t work (they never work), so was about to lay prone on a slab like usual, for more diagnostic injections.
I thought it’d be injections at my first and second rib to assess what’s become half-a-year of the-same-but-different “cervical” type of pain that makes it hard to drive, and impossible to look down for any long period of time. All left sided, like usual.
Work emails, work reports, sub plans so I can even go have procedures or convos no longer covered by telehealth, watching my feet to make sure I don’t fall downstairs (not skilled) = The world involves looking down more than we’d all think.
I ended up having 4 injections instead (with good reason), and being brave enough to say the truth too:
“My spine is the worst thing to ever happen to my life [health]. I’d take pancreatitis and other CF things any day of the week, because at least those have brief lights at the end of the tunnel.”
I am lucky enough to have a neuromaster who marinates on epic Big Picture questions such as these, and who understands that “to what end?” IS a critical medical question sometimes.
“It’s almost like something has been hemorrhaging for so long and we’ve been fixing the wound. But my quality of life needs to ask: ‘How can we put gauze on instead, and try for small improvements in living?”
My youngest gave me a thumbs up behind his back, proud that I told the truth. Myself always masking… performing… “Jazz hands!” I can’t stop even when I try. (Even my daughter is protected from it to some level, Even my daughter is protected from it to some level, always- remarking on how minimally I winced during the painful day. Even so, she’s astute to all things. If she met you, she’d see your tissue paper fears too.)
“I hate when adults lie because they think it’s protecting,” she said recently, sour and salt: “Not knowing the truth just makes a kid worry more.”
“She is in my ASL 3 class at high school right now,” I told him, as we all caught up together, “But look at her perfectly interpreting for me right now [when I can’t see what’s going on behind me].” Total CODA; Hard of hearing BA herself.
“Pretty sure she should get an A,” he laughed.
She and I cackled in raucous righteous ways all the way home making dreams, listening to her feelings and insights- the ultimate Lidocaine on this earth.
We wait (with good reason) and more half-a-years could pass and the cycle of injection, discovery, retool, repeat continues. I’m lucky to have this center while I’m “near” them… but my life has shrunk along with my spine, and no amount of smiling and Jazz Hands has seemed to change it.
I need the Big Picture someday fast, more than they know. Because then… and only then…
Can a patient like me finally look up.
Thank you.
Share if you like… encourage scholarships for those who need…. reach out to collab… know my gratitude, pretty please, as you read this.
I wish there was more they could do for your spine issues!! I love that your daughter was proud of you for not sugar coating anything😂❤️
I truly wish you could have some "pain free" time, dear friend. The determination you show is an inspiration to me! I remember you saying one time you didn't want to be an inspiration, well, apparently that didn't work...cause you are. Love you! 🙏🥰