I’ll be performing in Victoria, BC, Canada on September 20th. For more information, click here.+
A moment to share my memory of my mother; her triumphs, her strength, and her gifts.
When I was 9, she was suddenly afflicted by a rare disease called Polyarteritis Nodosa (PAN). It’s a disease of unknown cause, and not very well understood. In the US, prevalence is around 30 per 1,000,000 people. Untreated, there is a 13% survival within 5 years, and 80% with treatment. It was a long time of struggle, confusion, and searching before a diagnosis was found. Once they were sure, she spent the following four years flying back and forth from Dallas to Bethesda, MD for research studies at NIH. It was tough work, and everything was unknown for years.
One of PAN’s characteristics is it can go into remission for about ten years if things go well. Thanks to the treatment (of which there exists very little), she managed to make it over the hump and the disease went into hiding. She got a second chance.
While PAN was in remission, she was a new woman. It was (almost) like nothing ever happened. She was finally home to be our mother again, and she stayed there for the next twelve years. We did all the things a normal family would do, and caught up on lost time. Everything was wonderful and bright and happy again.
Her most lasting gifts came in the form of crafting. One day she bought an electric bandsaw and converted our upstairs room into a busy sawdust-filled factory. She pumped out thousands of incredible hand-painted wooden trinkets and decorations, and soon had seven stores in Austin, Dallas, and Denver where she sold her creations. Every morning at 7am, I would hear that coffee brew, and she was off to work. She left her mark, and her art spread far and wide to adorn happy homes all over.
Looking back, she knew what she was doing. She knew she had an unknown future, and deliberately made the most of it. She kept strong in front of her kids, and we lived very happy lives under the illusion of permanence. Bless her.
In 2001, it turned out she needed heart surgery to repair a couple valves that had been damaged a decade prior. Surgery went fine, but an embolism got her two days later and she died.
But she beat PAN. She beat it against the odds, and she came back with a vengeance, became an artist, and made the world a whole lot brighter. She was strong, and she took every opportunity she had to be a great mother.
I wasn’t able to make a eulogy at the time, so this post is just part of my lifelong remembrance of her. I remember night after night playing the piano for her while she laid in bed reading. Chopin caressed our household during the tough times. She joked that I would grow up to be a “starving musician”. She beamed and found the idea romantic, but I don’t think she really knew what it meant. Either way, perhaps that’s why I decided be one.
She was funny and precise. We spoke proper English in our household, or else. She could get goofy and hoop and holler with joy in times of triumph. She spoke softly when necessary, but could raise hell if her kids asked for it. She was a wonderful mother. She taught me beauty, strength, humility, and kindness.
Lots of her crafts are still in my father’s garage in many, many boxes, which we are still distributing to the world little by little. We have donated a lot to local schools, including many unfinished bits and pieces, which have been donated to arts and crafts classes.
Each year when it nears Fall time I’m flooded with memories. I wanted to share a little of that here, so y’all have an idea of what a superheroine my mom was. ♥
Invisible Allies is my collaborative project with Bluetech.
Our new album, “Conversations With Bees” is available now on Aleph Zero Records.
Purchase CD and digital now at Bandcamp
Or the Aleph Zero shop.
I saw you through the long wind, coming
open to give fragrant hope to my pollen laden wings,
yearning through winters bridgeless river long
awaiting, waiting, longing,
the ascent of velvet spiral stairs;
the ambrosia petals to your honey bleeding heart.
Now I see you through this dense rain, sing
your velvet speckled skin and tender nectar
so you know:
I see you.
My footfalls like jazz on the rooftops of home. Wait
now only for the storm to pass
that these feet might touch your earth again.
the sky, it weeps between us.
And you, my flowering love, are fed.
And the weeping stopped.
At last came time to mend;
your touch like needles on my wounded feet, re-
membering the edges of a landscape torn by time.
Our tears, as nectar, promise to the rain a future
of flowers to feed. We:
you and bee: open honey holding hearts to bleed
I tasted of you in dreams.
Long had I beheld your fragrance.
It’s good to feel your breath again.
- Poem by Lily Ross
Presales for the new Invisible Allies album, “Conversations With Bees” are available now. Invisible Allies is my noodly sonic brain concoction with Bluetech.
This album is a seamless journey, featuring additional musicians Dan Covan, Nils Bultmann, Jason Rinker, Meryl Joan, and Sonja Drakulich. Artwork by David Hale, and words by Lily Ross.
Grab the presale for a discount (official release date May 23rd): http://aleph-zero.info/cd-181/Invisible-Allies/Conversations-with-Bees/details.html
Follow Invisible Allies on Facebook here.
I have been composing music for a continuing documentary about Thorium as an alternative nuclear energy source. I have high hopes for Thorium as a safe, clean, and abundant energy source, as opposed to traditional uranium reactors, which continue to create devastating disasters. This is a neverending video series with numerous iterations, so check out the channel and stay connected.+