OUR GFM UPDATE - August 19, 2021
(original LAURA'S STORY from 2017 follows)
A new update and greetings from August, 2021 to our family, friends, and colleagues!
Like for many, the pandemic seemed to freeze us in time and space. Robert and I are still staying home because of our pandemic risks -- including we're both now in our 70s.
My last update was by chance on the same day that Governor Inslee declared an emergency in Washington state due to the pandemic.
Before that news on February 29, 2020, I had written that "just when things were turning around" I fell while walking across a parking lot in Vashon town and broke my foot! " -- a sobering visit to an already partially-masked and crowded ER for a serious fracture.
You have all made a huge difference in our lives. During the pandemic, many of you have continued to help us. We have had both hands-on and financial help from our friends, neighbors, and family.
For more about us and our GoFundMe campaign, please see my 2017 original post and 40 (!) updates below. They include our stories about many challenges including my still worsening muscle wasting disorder (Inclusion Body Myositis), broken foot (healing poorly), Robert's epilepsy, and all the rest. The posts mostly focus on stories about grace, generosity, and personal help.
The posts include original, improvisational music and dance videos created by Robert and me. You may recall that Robert is a filmmaker and musician. And I was a new dancer (then in my late 60s), and musician. They reflect our 2017 decision to grow through challenges with our dance, music, and filmmaking (some films of ours: "Inspiration" and "Courage") .
Robert asked me to include a poem I wrote for him many years ago (below). It feels fresh and poignant to see it here with this post. We want to share it with you now.
IT IS NO SMALL THING
It is no small thing to feel gratitude for life
and to affirm that gratitude in the shadows.
It is no small thing to know fear.
Yet to speak out loud a blessing so bright it calms.
In those cold, dense moments when fear looms or pain drowns,
hold on dear one for that dark will pass.
Life beckons us onward to hope and hope again.
A single pebble. A talisman to hold and remember.
We would enjoy hearing from you in the GFM comments or privately! Stay safe!
With much appreciation!
Worth Coaching Services: http://www.coachworth.com
Vashon Health and Wellness Directory: www.VashonWellness.com
Our Art : http://www.SeaDriftMedia.com
Our health care inventions: http://www.LifeSenseTechnologies.com
First Post of LAURA'S STORY
Also click on updates #1-40 below; 2017-current
I've been challenged more than I like to admit lately with a rare, genetic, adult onset, muscle wasting disorder. Certain muscles, primarily in my shoulders, arms, hips, legs, and ankles are actually disappearing, not just weakening.
My doctors tell me my disease is most likely either something called Limb Girdle Muscular Dystrophy or Inclusion Body Myositis, but they have been trying to determine exactly what type of muscle disorder it is with medical testing for a few years now.
Your support -- not just through donations, but also by personally sharing this “Keep Laura Dancing” project with a few of your friends who you think would enjoy our improvisational, music/dance movies, or sharing it on social media and other creative ideas – are all helpful.
The “Keep Laura Dancing” campaign means not just literally dancing, but also keeping me engaged with life and the passions I have found calling me forward.
The lengthy testing started long before this seemed as serious as it is now -- with simple blood tests and an MRI to make sure it wasn’t a tumor, stroke, or other problems in the central nervous system. Next came electrical testing of the muscles and nerves throughout my body (EMGs) that determined that it was a muscle disorder (not the nerves that stimulate the muscles). I had a 1 cm square chunk of muscle cut out of my thigh and analyzed at University of Washington, but it was inconclusive, so I may be due for another one to see if they can find more information from muscles at a different biopsy site. Or it might be that the cellular signs of the disease would be more pronounced after the passage of time. Each specialist has also manually monitored my physical strength in specific muscle groups several times a year. In the next couple weeks, I have at long last been approved for genetic testing!
Either way, this “myopathy” (muscle pathology) makes me fall every few months if I forget to be careful. And it keeps me from walking normally, running, skipping, hopping, standing on my toes, and climbing stairs. I have to walk slowly and I find myself lurching from side to side. One of my doctors explained to me this is because my body is constantly needing to rediscover how the surviving muscles work together anew daily.
Before this started, I had decided to save money by giving up on having a car after it died. I thought I was going to walk the mile-plus to the bus. But I can’t navigate the steep hills back and forth from the bus line on Vashon Island, where I live just outside Seattle. When I get a ride a few times a week from kind neighbors and other volunteer drivers on Vashon, I still get very tired from being out and about. And coordinating these limited transportation options makes committing to social, medical, and work meetings tricky at best.
But I'm determined to keep this from getting worse even if the doctors say what I do won’t make much difference in how my genes decide to express themselves. So far, I see that if I keep up with physical therapy and other exercise I seem to be able to get the muscles I have left to work better. This discovery of slow, creative dance in my life gives me hope by constantly letting me re-discover that pushing my limits helps me keep going.
My usual upbeat attitude darkened the other day when I found myself cancelling my physical therapy appointment because I just didn’t have the co-pay. When I confronted this loss, I realized situations like it were coming up more and more. Whether for medical co-pays and my insurance premium, a “balance stick”/cane to prevent falling, supportive shoes, transportation to medical appointments or just to do routine grocery shopping – it all adds to a budget that was already difficult.
My social security barely covers modest rent, utilities, and basic food. Even with my self-employment income, I run out of money frequently now. Not being able to go to my physical therapy appointment was a serious wake-up call that I need to ask for some financial assistance.
My budget for use of these donations includes:
· Medical copays.
· Medical insurance premium.
· Durable medical equipment (balance stick, cane, support shoes, an ankle brace, and the like).
· Medications and supplements to support muscle viability and reduce inflammation and pain.
· Transportation to physical therapy and medical appointments on Vashon and in Seattle and Tacoma.
· Genetic testing (without a specific diagnosis to pin down what I’m up against, I easily swing from fear to denial -- not good for motivating me to keep up the daily physical therapy routines).
· Savings for new medications (there is promising research being done, so soon there will be fascinating gene therapies or other medications, depending on which of the diagnoses it turns out to be).
· Basic living expenses for those times when this disability intrudes on my livelihood.
I counter fear and disappointment from all this with a new exploration of improvisational, creative dance in artistic collaboration with my 37-years-life-partner, Robert Bornn’s musical, in-the-moment innovations on his synthesizer. You might say this is an unusual way to manage my fear about losing my muscles, but dance just started to happen for me when I realized that, like life itself, it could be all about going to the very edge of possibility -- with as much balance and grace as I can muster up. Every day I re-discover the joy of pushing past my limits and find support from Robert.
If you are someone who prefers to help with my medical needs by purchasing our music, you can find us at https://store.cdbaby.com/cd/robertbornn6 and our own independent production company at www.SeaDriftMedia.com. You can also find Robert’s glass art miniatures for sale on www.Etsy.com/shop/InsculptaGlass. If you’re on Vashon Island, his art was for sale at the Heron’s Nest Gallery (prior to its recent closure).
Direct support here at GoFundMe.com, with any amount of financial assistance you can give, will help keep me motivated and more resilient so that I can continue to accomplish work in the various callings I have been fortunate to experience in my life.
This year, after 23 years of life coaching where I have helped others find their way, I have been inspired to launch a new program, where I specialize in coaching work with seniors of all ages. If you prefer to support me and the Keep Laura Dancing campaign financially through the passion I bring to my coaching work, you can purchase my coaching services in a number of ways by contacting me at www.coachworth.com.
Similar to starting my surprising love affair with acting in my 40s, dance is something I never thought I would be embracing as a "beginner" at 67 years old. I've been inspired by modern dance, improv and acting expression, butoh dance-theater, yoga, exercise routines, and tai chi. Together with Robert's improvisational music, I've been developing my style of creative expressive dance.
"Courage" and Robert's music and film notes are right below -- with my own dance notes.
Finally, with your help (whether it’s financial assistance, sharing this campaign among your family and friends, or providing moral support with your comments here), I’ll find more creative resistance to my challenge. I’ll keep you posted here with my medical progress and Robert’s new dance and music movies!
Thank you for reading my story!
(film and dance notes with our original improv music/dance movie, right above)
Robert's music and film notes:
I created this music video, "Courage", with appreciation and gratitude to Laura for helping to bring an extraordinary beauty and grace to my improvisational music. Lithe, poignant, and full of hope and possibility, her heartfelt, expressive dance draws from our deep personal connection. Laura's ongoing physical challenge has emboldened her to create new dance expressions with courage.
Laura's dance notes:
Who knew that a refreshing run on a California beach could suddenly, now, bring memories so delicious -- and mean so much to me -- because Robert simply showed me his video clip from 35 years ago?
Or that today -- an adult-onset, genetic, muscle-wasting disorder would become a challenge for me at 67 years old?
It is our challenges that can keep us inspired -- if we shape them to be opportunities for continuing growth.
35 years later, I had no idea I would be exploring new physical limits using improvisational, expressive dance that emerges from Robert's musical creations -- in this case, at sunset under our tall, sheltering evergreens -- at our home on an island in the Pacific Northwest.
Life has presented this mystery worth considering: there is spontaneous joy -- in spite of my physical limits -- through this unique form of dance.
My dancing emerges organically from Robert's inspiring, in-the-moment music. With each of us appreciatively mindful of the other, our mutual inspiration unfolds. Each heartbeat brings deeper creative engagement -- with awe of this intuitive partnership, discovery, and love.
Robert Bornn, Futurist
Musician and Filmmaker
Laura Worth, MSW
Personal Life Coach
"Helping people find their way for more than 23 years."
(background to our 2017 improv music/dance movie -- the new cover piece up top and at update #6)
On Vashon Island, just outside Seattle, there was a rare, early season snowfall on parts of the island a couple weeks ago. Robert Bornn and I had just been talking about making another music/dance video at some point during the Winter if we had snow this year. So late one afternoon, when snow flakes almost the size of birch leaves started to become flurries, we felt inspired to film this dance.
Our second movie is called “Inspiration” to honor the people who have inspired us with generosity and kindness over the years – and especially now as I face a new medical condition at 67 years old – a progressive, adult-onset, genetic, muscle-wasting disorder that has left me unable to climb stairs, run, hop, or skip. Yet the expression of improvisational music and dance lets me find joy in limitless creative movement.
We all have challenges in life. The tricky thing is to find growth opportunities in them. I try to start most days by asking myself to look for positive life lessons during the coming day. I experience joy and inspiration when I look for ways to re-frame my new health care challenges -- through the metaphor of dance.
Dancing and filming in the snow was a joyful, inspirational "first" for us. We hope you enjoy it as much as we did.
MORE UPDATES (#1-40) ARE BELOW