I don’t get up and sing too often these days, so it felt great (and nervous and sweaty) to tagalong with @jackingram for a few holiday shows in Texas. Saw family and many old friends. Jack and @kevinahoward have long made me feel like a worthy songwriter and I am deeply appreciative of that. And we even had @49ers@bruce.collie.902 driving the bus. I’ve certainly had worse weekends. Thanks everyone who came out!
Hi Everyone! Today is the second annual Major League Baseball Lou Gehrig Day! Hard to believe a year has past since the first. Watch some baseball tonight. There should be some great stories during the games.
I'm happy to pass along photos of the PALS (People with ALS) YOU helped by donating to my @permobilfoundation birthday fundraiser last year in 2021. These ALS warriors can now use the seat elevators that your donations helped add to their chairs to raise themselves and see eye to eye with others, reach something on the counter, or sit properly at a table, and I thank you so much for it! Be proud of yourself for helping others 🙂
Also, please consider there have been effectively zero changes in treatments. No new medicine. No FDA approvals. Not unlike every single year that has passed since Lou Gehrig died over eighty years ago. So we celebrate the athlete today but we also acknowledge his disease and the sometimes seemingly endless road to a cure.
I look forward to a future Lou Gehrig Day that’s just about baseball!
Blu
#lg4day @mlb
Grateful and excited to get to talk about my ALS caretaking journey on the @kellyclarksonshow tomorrow!
Tomorrow is a special day for ALS advocacy and awareness with the first annual Lou Gehrig’s Day in Major League Baseball. So many stories to tell.
Working for an artist I’ve been on quite a few tv shows behind the scenes which was always fun for me, but I’ve never been in front of the camera. I am thankful for the opportunity to shine a light on the ALS battle.
Hope you tune in!
I can see it through the trees! I pointed into the sky.
Where? My mother asked, unable to make it out.
In the trees!
I can’t…see it.
It’s almost here. I can hear it. Can you hear it?
I don’t
It’s almost…
YES!
And then, unstoppably, United Flight 2764, from HOU to SAT, roared over our heads, like we could almost touch it, towards the San Antonio runway, as my mom craned her neck to watch it pass over us and towards its destination. She laughed with pure joy, and I laughed because she laughed, and because it was just that. Pure joy.
My mother and I sat on an uncomfortable metal bench at the Walker Ranch Historic Landmark Park somewhere near the San Antonio airport and just around the corner from her new home - a group home for Alzheimer’s patients.
Do you sleep in here? She had asked me as we stood in her old room at my sister’s house.
I used to sleep in here, she said.
Yesterday she couldn’t find the word for the solitary whisp of white in the clear blue sky.
That…the…there…it’s…
The cloud?
Yes, cloud. By itself.
The park was full of screaming kids and their parents. Walkers. Joggers. A stoic city deer and his antlers. One beautifully twisted giant of a tree. It was a great day.
My mom didn’t even know it was Christmas.
But today she does still know my name. And I celebrate her for that.
Happy Mother’s Day Mom. I love you. #alzheimers #endalz💜 @alzassociation
Stood in line for two hours, two weeks ago, at @loweshomeimprovement to get one of their last shipment of generators which ended up powering a space heater inside, keeping a few lights on, three outdoor cat beds and two heated mats for feral cats, over the last THIRTEEN days of no power or heat from Winter Storm Fern. Retreated to a hotel after making a valiant effort for one cold night. We were in the last 600 out of 250,000 people to get power back. At that point, I was kind of hoping we would be the very last house. We were interviewed by the news, and though I felt like we had some more powerful thoughts on those that could not afford to leave their homes and NES’s communication nightmare between their crews and customers, I wound up with the cat popsicle quote, which was accurate after all. Any press is good press amiright? Glad that’s over.
Once again, on #VeteransDay please consider that veterans are twice as likely to battle ALS, and it is considered a 100% service related disease. It is always fatal and there still remains no cure.
Always love walking with @walkingbyfaithals , ALS PALS, caregivers, friends, and family at the annual @als walk today on a gorgeous day in Nashville. Over 500 walkers, which is awesome! And it would not be complete without @tshawstruth being the amazing human we all know he is ❤️
Fourteen years ago, my once invincible, powerful father asked me to take this photo of him, my brother, and me. He wanted to see the changes in his body. He liked raw vulnerable photos. We laid a tarp on the ground in the bathroom and bathed him. At some point that evening we fed him through his feeding tube. I don’t mind memories like this. They’re part of the whole. Take pictures of your dads. Even the ones that don’t feel like the good ones. The best side. The ones where they’re smiling. I promise you won’t regret it ❤️ #fathersday #endals
Got a new camera and went out to my favorite spot to snap sunsets. Wasn’t there a few minutes before I chatted w a random visitor from Amsterdam who mentioned he was in town for business and was heading to the Pearl Jam show. It had been ages since I’ve seen Pearl Jam and I told him I was super jealous, to which he replied that he had an extra ticket if I wanted to go so I ran home dropped off my camera and ended up at the Bridgestone with my new friend Martijn! Thanks @mswier 🤘 Awesome night!
A life time ago in some ways, yesterday in others. That's me (with pink hair), Darwin Smith, @jasondwhite5 and @johnthom . Darwin produced my album My Gemini Self, played on 5TCA, and played guitar with me countless times in Austin and the occasional trip to somewhere, had the coolest East Austin studio, while I had no idea what I was doing, grew musically, and certainly swiped his songwriting style and poorly copied his electric playing. He was and remains one of my all time favorite singer songwriters. Tie on your flyin' shoes and I'll see you out there in the universe somewhere. Love you Darwin.
