S1E7 - Still Not Better, Still Beautiful copertina

S1E7 - Still Not Better, Still Beautiful

S1E7 - Still Not Better, Still Beautiful

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 You did everything expected—and nothing changed by Rob Cookenour “StepDeaf” creator of Let’s Make Happiness Accessible™ The appointments, the medications, the exercises, the careful tracking of symptoms… all the things we’re told to do, and we do them as expected. And yet, sometimes the progress never comes. Hi let's chat. I'm Rob sharing this emotional truth from the POV of a deaf guy who sees you as hoping someone still cares, hoping someone is listening. What I see and expressed as a truth is this: Still Not Better, Still Beautiful. That’s a place so many of us in the disabled chronically ill community know well — the endless cycle of showing up, hoping, trying, and leaving with nothing different than before. It’s not failure, it’s not neglect. It’s simply our persistence without promise. You're reading or hearing this while wearing slippers and an oversized top, right? It's like we have casual clothes and appointment clothes; that's it nowadays. And here’s where my emotional truth comes in: still not better, still beautiful. Because your worth, your dignity, and your beauty aren’t suspended until progress shows up. They’re here right now, in the middle space between hope and exhaustion, in the courage of persistence even when the milestones never arrive. The milestones may never come resulting in frustration, maybe even weariness, but not surrender — but there’s undeniable beauty as is. After a while, the chaos of it all starts to pile up. X-rays, blood draws, samples, wristbands, hospital gowns — they become part of our vocabulary. You have your own "A day in the life of . . . ," tailored so unique to your journey. Appointments turn into routines, not breakthroughs. And after another round of “I don’t know if I can help you,” many of us retreat to our safe places: a couch, a pet pressed close, or the comfort of friends who understand without needing explanation. I'll describe friends like this, company that's not trying to fix us. Let's have an amen to that. I learned who my friends were after going deaf as a side effect of the Pfizer COVID vaccine in April 2021. 2 Years later in May 2023, I was approved for a Cochlear implant and once activated began to let me navigate parts of the hearing world, but “better” isn’t on the table for me — I live in the reality of different. That’s why still not better, still beautiful isn’t just a phrase I came up with. It’s the lived truth I share with so many disabled friends. Wanna see some pictures? Glad you asked. Here I am the day that my CI was activated smiling with my name tag then me giving a thumbs up as I show my backpack of accessories from Cochlear, both from May 25, 2023 at Vanderbilt in Nashville, TN. And I’ll be honest: there’s resentment, too. Sometimes it feels like I’m preparing and studying harder for my appointments than the doctors are. Showing up with detailed notes, hoping to be taken seriously, only to leave with another “keep doing what you’re doing.” I actually had an EN&T doctor say, "Beats me," to my question about why have I began to lose balance and equilibrium as further side effects. He still gets paid whether I find comfort in answers or not. Seems unfair. That frustration is real — and it’s part of the emotional weight this community carries. Over time, we feel a loss of expectation, expectation of answers that is. We share a mutual “somethings gotta give” emotion after talking about this doctor appointment with no answers, that rehab visit with no improvement, that scan-xray-bodily fluid sample-etc. that simply “took” from us with no helpful results, yet we keep going for “help” without change or help . . . so somethings gotta give, maybe place a wishing well at the entrance of our appointment offices if out of sheer placebo intentions. I think of Dani (ihatechronicpain), who recently documented her trip to the Mayo Clinic with such thoughtfulness and detail. Her journey showed immense preparation and hope that goes into these appointments. But what struck me most was her follow-up, where she shared the letdown of hearing that, despite all the effort, the treatments might not actually improve her life. That contrast — between careful preparation and crushing disappointment — is an emotional reality so many of us know too well. Watch Dani's Video Here she is sharing the emotion we all have felt of being told by our doctor that that can't promise that we'll get better. Watch Dani's Video For all of us, here’s where the research and lived wisdom meet. Psychologists describe how people adjust to disability through certain shifts: Enlargement of scope: recognizing values that exist beyond the disability — talents, relationships, passions that remain untouched.Subordination of the physique: learning not to place all identity in appearance, but to elevate character, humor, or kindness as more defining.Containment of disability effects: ...
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