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: refusing to let a limitation spread across the whole self, naming it for what it actually affects and nothing more. Transformation from comparative to asset values: moving away from “how do I measure up to them?” into “what unique value do I bring?” These aren’t just clinical terms — they’re survival strategies we live every day. And they’re proof that even when the medical charts say not better, our lives still hold dignity, depth, and yes, beauty. My deaf disability can’t get better, so I’m different from those that can get better or at least be diagnosed accurately and assistive means added to their lives for easier living. We'd like to be happy. That’s why I started Let’s Make Happiness Accessible™ from a momentary pause on the sidewalk of my local post office. That’s where I saw one of the handicap accessible parking signs and stopped to reread it. “Accessible.” Why isn’t happiness something made accessible? A wishful moment of graffiti came to mind as I thought about using a pen to write, “Let’s make happiness,” above the word accessible and walk away with a it as a newfound rallying call for the disabled friends and allies, because our community doesn’t just need to be “handled” or “accommodated.” We need joy. We need dignity. We need to know beauty isn’t canceled out by a diagnosis, or by the absence of progress. Scoot closer so I can show you these two images. The handicap accessible sign with wishful graffiti came from free association sketching in my car while looking at such a sign near me. The other image is little ole me waring it as a first try at capturing the wish as a design for others to think about our happiness, too. Wishing to be happy or atleast happier has me thinking of voices like Lacey Richcreek, who shares so honestly about cerebral palsy awareness. In one video, she named what so many of us feel in the “why” cycle: “Why the chaos of trying to figure out why, why the anger, why the frustration, why the loneliness, why is better not happening even though we’re working?” Watch Lacey's Video Or Tayler (known as distaaybled), who describes herself as a DeafDisabledAuDHD girl living with hEDS, endo, and an ostomy. Her words hit hard: “It doesn’t get easier, we just get better at hiding it.” That single sentence captures the exhaustion and invisibility of living in persistence without change. Watch Tayler's Video Cassandra (invisiblestruggless) gave voice to another truth. Sitting on her couch with her cat beside her, she shared: “You handled it so well, when actually I didn’t.” That moment is unforgettable, because it shows how often our safe places — our homes, our pets, our familiar corners — are where the real emotions finally surface. Watch Cassandra's Video Again, there’s Dani (ihatechronicpain), who shared the words none of us want to hear but too many of us have: “Another doctor whose only answer is, I don’t know if I can help you.” Watch Dani's Video These creators, and so many others, echo the heart of still not better, still beautiful. Even when progress stalls, your worth doesn’t. Beauty is not on hold until you’re better. It lives in those quiet, ordinary acts of survival: the friend who brings takeout, the pet who curls up after a hard day, the laughter that passes between disabled friends who simply “get it.” You and I "handled it well" cause there was no other option. Tired of being told that you're an inspiration to someone? Then, you can relate. “Still Beautiful.” Let’s think about that part of my phrase. There are our allies, friends, family and even pets, who are there for us and find our beauty easy to see. Others see it, too, like our trainers, physical therapy assistants, and those in our schools who all find that watching our daily effort is the beautiful aspect. Comment with what “still beautiful” means to you to be heard and help others see it another way. After all, still beautiful comes AFTER still not better, meaning what? Is beauty something settled for once appointments and therapies get first priority? Not at all. The beauty is always there because beauty can’t be, “disabled.” There’s also something else I notice among our community — not in their words, but in the silence between them. What I don’t hear, but deeply sense, is the quiet longing for rest. Not the kind of rest a nap or weekend can fix, but the deeper rest of a body and mind no longer at war with themselves. That unspoken wish is present in the pauses, in the sighs, in the way eyes drop away from the camera. It’s a reminder that exhaustion doesn’t always shout — sometimes it just lingers in the air. And while we share so much as a community, there’s also this paradox I keep coming back to: we are both mutual and exclusive. Mutual, because we carry the shared identity of disability — we understand each other in ways the able-bodied world
