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One wrong lean from a power wheelchair to grab an Amazon package? Boom💥—falling hazard, butt hits frozen ground, potential disaster for my human. Holding a door + awkward maneuvers on ramp + leaning over flailing an arm trying to grab a package = high-risk mission. It's my time to...

13,793 Aufrufe • vor 5 Monaten •via X (Twitter)

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George Couros

35,323 Aufrufe • vor 2 Jahren

Sorry if I did not answer many of you. I’ve never been a fan of the online eulogy. The immediate fallout is always about loved ones. And we should leave those closest be. And then I realised of course I was just incredibly upset, and a large digital outpouring is inevitable and testament to his character. My devastation came from having to watch it all unfold. From spending years trying to help and actually getting him close to a point where he almost had a normal life again - then being powerless to stop him doing things he should not have. Powerless in every sense as it also meant it sometimes not being my place to say anything. In the end watching some of the evil shits around enable the worst of it was too much for me, I had to step back it was too painful to watch. I told my mate who was filling in for me looking after him “ah I just need some space from it all, I’ll be back with him after Christmas” and then suddenly there was no Christmas. And it turned out no one was to blame, and I immediately looked to blame myself most of all, fearing the worst. But it was a simple accident in the end. A bolt out of the blue. So if you are ever estranged or overwhelmed by friends and family and think it will all be OK one day - DON’T put it off. Reach out now. Grab that person and hold them tight. There may not be a tomorrow. You might not be around to see them off. There may not be the grand luxury of time available you thought there was. He died in the arms of his beloved son, and that is a measure of comfort, if a passing can ever have any. He was my mentor, my friend and my glad burden. And there was nothing I would not do for him.

The Secret DJ.

40,740 Aufrufe • vor 1 Jahr

Goodbye, Pearl My heart is still somewhere out in that driveway, laid out flat like it just got the Holy Ghost and passed clean out. Today, I had to say goodbye to Pearl. Now Pearl wasn’t just an SUV. Pearl was my last rolling piece of freedom. She was my pre-ALS independence sitting on four tires. She was my “I’ll be right back” machine. My “let me run to the store” chariot. My “I don’t need nobody to take me nowhere” declaration with leather seats and a clean paint job. And today… she left me on the back of a tow truck like she was being taken to glory. That hurt. The last time I sat behind Pearl’s steering wheel, ALS made something painfully clear. I was sitting at a red light, needing to make a simple right turn. Simple for everybody else. But my arms said, “Oh no, we don’t do that anymore.” Cars behind me started blowing their horns like they were in the Indy 500 and I was holding up qualifying. I’m sitting there sweating, praying, negotiating with my limbs like, “C’mon y’all, just one more turn. ONE.” I wanted to yell, “Y’all better be glad I can’t get out this truck!” But truth was, I was scared. For the first time in my life, I knew I was not safe behind that wheel. Somehow, I used my legs to help force that turn, then drove home with fear sitting in the passenger seat. When I pulled into the driveway and climbed down out of Pearl, I knew. That was it. I dragged myself into the house and told Tanja my heart was broken. I wasn’t just giving up driving. I was giving up another piece of the man I used to be. So Pearl sat in the driveway for ten years, looking like a museum exhibit titled, “Before ALS Had the Nerve.” My girls used her sparingly—very sparingly after Sydney forgot to stop at a stop sign and introduced Pearl’s front bumper to somebody else’s rear end. After that, Pearl went into semi-retirement. Family members would ask, “Can I borrow the truck?” And I’d be sitting there thinking, “Borrow? That’s Pearl. That’s not a truck. That’s family.” But Pearl started coming back with scratches nobody knew about, “Not me.” “Wasn’t there before.” “I don’t remember.” And don’t get me started on the gas tank. I’d hand her over full, she’d come back thirstier than a man in the desert. Apparently, Pearl had been traveling with witnesses who all suffered from sudden memory loss. So today… I kissed her goodbye. Literally. Leaned in, pressed my forehead to hers, and whispered, “Thank you.” Watching her get winched up onto that tow truck felt like watching my past drive away without even turning around to wave. And when that tow truck pulled away, I laughed a little. Then I hurt a lot. Because sometimes letting go isn’t about the thing itself. It’s about what that thing represented. Pearl was freedom. Pearl was strength. Pearl was before. But even as she rolled away, I reminded myself: ALS may have taken the keys, but it never took my memories. It never took my gratitude. And it sure didn’t take my ability to laugh through tears. So goodbye, Pearl. You were loved. You were loyal. And Lord knows… you were patient with my family. Now let me go sit down before I start ugly crying like Tanja did over that Mercedes.

Kerry Goode

17,623 Aufrufe • vor 3 Monaten