September is Restless Legs Syndrome (RLS, aka Willis-Eckbom Disease) awareness month. It’s horrific, misunderstood, incurable, and one of my two main brain diseases.
I usually can inject light-heartedness into disease related creativity, but so far all I’ve got are the laments and anthemic lullaby below (from BrianAtPlay.com/Restless-Legs-Syndrome). Please let these experiences move you to learn more and treat RLS strugglers with compassion. #RLSAware #RLSAwareness
Stretching, kneading, pounding, pleading
Crawling, burning, forcing, pressing
Can’t say no can’t say no can’t say no can’t say no....
Always just beyond the edge of consciousness...like electricity. Toes. Ankles. Calves that have to move. Restless Legs Syndrome like a tailgater crowding my rearview mirror, a bully breathing down my neck, a whiff of something rotting just behind the wall. Always there. Always ready to twist a moment of peace and relaxation into a kicking, screaming fight to make the feeling leave.
Whether I’m down and dreaming,
or standing and screaming
I am always, always more
When sleep comes to stay,
or dancing’s the only way to survive
I will always be more
I’m writing this at 6am, over an hour after Slightly-off-kilter Schräg woke me with this “urgent” query:
We just finished Advent, the four weeks before Christmas when Christians reflect on and nurture hope for radical salvation from oppressors and pain and irrelevance and dysfunction and death. It ends with explosive joy marking Jesus’ exit from Mary’s womb. Along with her placenta. And blood. And her body’s processes of healing and rest kicking in. Finally, an inkling of the relief and happiness that Jesus’ life, death, and resurrection would bring.
Here’s what Advent can feel like: anticipation, hope, tippy-toe excitement that engages every aspect of every experience—all the senses, everything about life that is social, emotional, intellectual, material, aesthetic, psychological, interpersonal, imaginal and on and on ….
Now back to Schräg’s longing. Commercial Christmas potently evokes hints of the New Heaven and the New Earth. Indulge my slightly-nerdy analysis of “The Christmas Song” (if you’re in the US and have been awake recently, you’ve heard Nat King Cole’s version a thousand times). Lyrics begin with “Chestnuts roasting on an open fire…” – rich, pleasant aromas; then brisk, exhilarating sensations; familiar songs and genres; comforting, warmth-retaining clothes; familiar, succulent food and deep colors; yearly predictable ritual; childrens’ innocent wonder pervading every atom; certainty of the arrival of a mysterious, generous Being, with the thrillingly tense uncertainty of when; objects for play, edibles for pleasure; mother/child relationships; almost illicit, surreptitious search for a rare, magical sight; all generations together; inviting people of every age to remember and embrace the simplicity of childhood.
Two words make up the climax, the nub, the core: “Merry Christmas,” a symbolic utterance that evokes all of this, repeated to reinforce its associations, performed to spread and involve and invite many.
This is what Advent can be like—anticipation of the comprehensive nature of Jesus’ salvation. The surprising reality for those who hold a rich, biblical view of Heaven and resurrection: We’re always in Advent.
Barb and I attended a funeral for Steven last week, the son of Fidelia, a friend of ours from our Huntington's Disease (HD) support group. He died of Huntington's Disease, and there's still no cure. I'm experiencing very early symptoms, and our kids are at risk. This situation motivates us to write emails like these, and we want to help you help.
On Sunday, October 20, 1pm, we will participate in a walk to raise awareness and money for HD research. I'll also perform the song I wrote, "HD Blues" (listen at www.HDBlues.org).
Please check out my fund raising page at FirstGiving.com/fundraiser/brian-schrag/thw_dftw (you can also see the info below). At the page, you can donate or join our team, Brian's HD Blues. Please also pray.
These are the words you'll find at my web site, www.firstgiving.com/fundraiser/brian-schrag/thw_dftw:
Brian "Don't Forget to Play" Schrag
P.S. My sister Lynelle is sponsoring a team in Tucson Arizona. See her web site here.
I just did a studio recording of HD Blues at this address: www.HDBlues.org. It's a blast to listen to.
You may also be interested in seeing who people say I look like on this FAQ page.
On we go!
For a few weeks last year, I felt like the Spirit flowed through my hands to the journal on my lap. Barb and I had taught a course on heaven, I was pondering death and misery, and God gave me these little pictures of what it might be like to wake up in the New Earth. Remembering what was, noticing differences, and imagining futures.
Check out First Moments in Heaven - Senses, Relationships, Memories, God, Laughter, and Suffering. But don't ponder these reflections too much if you're tempted to shorten your time here. It will be worth the wait and longing.
Please let me know if you've received this email.
On this blog, I'll periodically highlight certain kinds of content and new stuff. You can subscribe so updates go to your email or RSS feed. Look on the right side of my blog (link here) and act.
Here are the things on the site related to Huntington's Disease (HD):