Thank you for listening! Here are the hospital boudoir photos I referred to in the letter:
Here’s the info on the Texas Foremothers Galentine’s Day Tour in Austin, TX:
Monday, February 13, 8-9am
Meet at the Texas State Cemetery in Austin
Coffee, crystals, and chosen ancestors journal prompts included in the tour price.
And the full text of my letter to Brandi Carlile (lol, I can’t help but laugh at myself for being a person who wrote a letter to a celebrity) is here:
November 30, 2022
To: Brand Carlile
Before I start this story I want to reassure you that I am okay and the ending is not sad. It is kinda long (sorry), but simply too mystical not to share with you.
On June 7, I woke up numb from the waist down. I could walk and function and feel if something was touching me, but if you’ve walked barefoot off the beach while your feet are still covered in wet sand, that was the sensation in my entire lower body. Everything was a bit muffled.
The first time I tried driving after The Numbness, my heart was in my throat. I was terrified my foot wouldn’t be able to properly navigate between the gas and the brake. I had to stop running on the trail near my house because I couldn’t sense changes in terrain very well and nearly tumbled into the creekbed a few times.
It took several weeks and a dozen hours on the phone with four doctors’ offices before I finally got a referral for a neurologist and an MRI. A couple hours after my MRI appointment, my neurologist called: “I’m so sorry but you need to go to the emergency room. Today.”
When I checked into the Dell Seton ER in Austin on July 14, the attending doctor told me that I’d be receiving three heavy infusions of steroids to calm the inflammation that was causing my numbness and I would likely be spending three nights in the hospital. I got my first infusion at midnight that night and somehow still managed to fall asleep in the midst of ER chaos.
Early the next morning they did additional MRIs on my brain and upper spine, and I got relocated from the tiny closet of an ER room I’d slept in the previous night to a big hospital suite on a high floor overlooking Waller Creek and downtown Austin.
As I waited for the hospital neurologist to come in with his entourage and deliver the news of my diagnosis, I sat on the window seat with a brown plastic mug of weak hospital coffee. I looked out at the bright blue sky and cartoon cotton puff clouds drifting above the pink granite dome of the Texas State Capitol. The most beautiful melody floated up to my window from somewhere down below.
I craned my neck and squinted down to see the Moody Amphitheater at Waterloo Park catty-corner across the street from my hospital room. Some kind of angel was sound-checking for a show that night.
A quick search on my pocket computer let me know you were that angel.
Not long after, the doctor came in and somberly told me the initial MRI showed a waist-level lesion on my spinal cord that was causing my numbness. (At a follow-up appointment they showed me a cross-section of the lesion and I was shocked to see how little margin there was around it. “Wow, it’s almost entirely blocking my spine. I guess it’s kind of miraculous I didn’t completely lose function of everything below the waist…?” I asked. The physician’s assistant opened her eyes so wide and nodded her head so vigorously I was worried she was going to pull something in her neck.)
The MRI on my brain showed several more lesions that had apparently been there a while but hadn’t caused any symptoms I’d noticed. “Probably because I don’t actually use my brain very often,” I joked to the roomful of serious faces in scrubs staring at me. Someone had to lighten the mood.
Because the words “multiple sclerosis” were hanging heavy in the air.
Once the doctors left I gave my husband a tight and tearful hug.
And then I dried my eyes, put on some mascara and red lipstick and made him take boudoir photos of me in a gauzy floral nightgown as I posed suggestively with the “soiled linens” bin in my hospital room. I pretended the IV stand was a stripper pole.
I was overcome with gratitude for what I saw as my newfound permission to live with reckless abandon for the rest of my days, and I wasn’t wasting a single second.
The good news was that I would receive one more infusion of steroids in the hospital that afternoon and be released early with a prescription for the third and final dose—25 steroid pills to take on my own over the next 24 hours. (The first pharmacy didn’t have enough to fill the prescription. The second pharmacy called and asked to speak to my doctor because they were sure such a shocking amount of steroids had to be a mistake.)
At 3:33pm I bought a ticket for your show.
At 7:30pm I unhooked the IV, said goodbye to the nurse on duty, and walked out of the hospital’s sliding glass doors and across the street to the Moody Amphitheater.
My sunshine yellow and seedling green ‘70s kaftan swirled around me as I floated to my seat and the stage lights came on. I somehow perfectly matched the dresses the Lucius ladies were wearing and I wondered how the universe had managed to curate even the smallest details of the evening just for me.
There wasn’t a single song that night I didn’t weep through.
Tears of wonder.
Tears of gratitude.
Tears of grief.
Tears of joy.
Tears of solidarity.
Tears of disbelief at my incredible good fortune to be immersed in some of the most beautiful music I’d ever heard just hours after learning that I could lose my hearing completely at any moment should the mysterious whims of MS decide to take it from me.
But at the end of your set when you introduced your “Pride song” and urged us to “fight but remember to stay gentle,” when you spoke of your affection for us Texans, when you noted that the people of Texas don’t match the policies, I utterly dissolved into body-wracking sobs.
See, a few years ago I quit my career in advertising and dedicated my life to trying to get the policies in Texas to match the people by inviting a greater diversity of everyday folks into the political process. Just 2.5 weeks before my MS symptoms started I’d thrown a big party called Y’allentines Day–a celebration of trans and intersex Texans. I wanted to let them know they were beautiful and loved, and I wanted to recruit more allies to fight for them in this increasingly hostile state. There were drag queens and Ring Pops and a wig bar and ‘90s-themed outfits and hypercolor cups. We were finding joy in the darkness.
At Y’allentines Day I also shared my story of discovering my own queerness in college after having been raised Baptist. I explained how I was holding out hope that we could open more hearts to trans people, that I knew it was possible because my own heart had been broken out of its hard shell of homophobia through the gentle touch of a queer boy in my dorm who’d simply dared to live out loud as himself.
As I sat in the moonlight at your show and truly took in the words to the song “Stay Gentle” for the first time, it felt like they’d been written just for me. As a promise that the universe was lighting my path. As encouragement to keep going.
Your show that night was one of the greatest gifts of my life. I’m not sure anything I can put into words will convey what it meant. Thank you.
The next day I learned that one of my chosen ancestors I often visit at the Texas State Cemetery when I’m seeking wisdom, Rep. Barbara Jordan, also had MS. I had already felt a particular kinship to her because she was secretly gay–she was a Black lesbian legislator in the South in the ‘70s… it wasn’t safe for her to be out then. Finding out she had MS made her feel like a whole new level of chosen family.
I believe that as I gazed out of my hospital window watching the sun glint off the Texas Capitol and listening to your sound check, Barbara’s spirit had a hand in getting me out of the hospital early so I could go across the street and receive divine affirmation through your music.
I’d been planning to simply tuck this incredible experience into my heart and have that be that. But then over Thanksgiving I read “Broken Horses.”
When I got to the part about your possibly “a little bit gay” Grandma Carol who had MS and a sick sense of humor, it was like a flaming arrow straight to the marrow of my soul. I’ve now read these words at least 18 times, never without crying:
“There is nothing more real or more practical in this universe than mysticism. Remember that… and it’s usually sitting right smack in the middle of grief.”
So now I believe Grandma Carol and Barbara Jordan had been in cahoots to get me to your show that night. And you know what? I went out afterward by myself to the best queer bar in Austin, Cheer Up Charlies, and danced my ass off for them (though I thought I was just doing it for myself at the time).
After all that, it just seemed like a mistake not to follow the omens and share this story with you.
Last thing I’ll share… The part in your memoir about how you fought to shine a spotlight on Tanya Tucker reminded me of a spirit-pact I have with my chosen ancestors. I’ve got several in addition to Barbara–women whose stories have the power to ignite a new generation if only they can find their way to the right storyteller. Women like attorney Sarah Weddington who argued and won Roe v. Wade in front of the Supreme Court at 26, just a couple years after she’d driven to Mexico to be able to get an abortion herself. Or like Lady Bird Johnson who toured 8 southern states courageously advocating for civil rights in 1964 despite the fact that those states were deemed too dangerous for her husband President LBJ to visit at the time.
I’m gaining so much learning these women’s legacies, and in exchange I feel I owe it to them to get their stories out as far as I can. Back in January I bought TheForemothers.com as a placeholder until the right idea came along. I don’t know about anyone else, but I’d sure as hell buy a Brandi Carlile album called “The Foremothers.” Maybe each song tells the story of a different powerful but forgotten woman. Maybe a companion podcast unpacks the stories further. Just an idea.
My eternal thanks for everything you’ve given to this broken, bisexual, recovering Baptist.