It’s been over a year since we began to remodel our house in order to install an elevator. We ended up putting in a bonus room which I immediately co-opted to be my studio. I’ve created a few pieces recently; it’s just so much fun to play with tools and paints and make a complete mess! Here’s a few new items:
And here’s a photo of my new studio (okay, our room…. I can share 😇):
Today I bought an electric wheelchair and I’m overwhelmed.
How is it possible to feel so many contradictory things at the same time? I cried, laughed, cried some more. The joy I felt, being able to get outside and “go for a walk,” to take back some normalcy, the despair and sadness at the tangible evidence of the ravages of ME/CFS, all mixed up in an overwhelming emotional storm.
But still, freedom beckons!
I would love to be independent, to not have to be reliant on others all the time, but my walking has deteriorated and it is laborious to move my non-compliant muscles for very long. A short block had become a marathon. The parameters of my life are mostly bound by the walls of our house. But on days when getting dressed and going outside is an option, it’s a heady prospect indeed! So take that ME – A celebration is in order!
Why the hiking shoes you ask.
May 25th, 2016 is dedicated to the millions of Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. #MillionsMissing and I am one.
#MillionsMissing is a day of global protest to raise awareness of ME/CFS and the impact it has on patients and their family. It’s about the millions missing from their schools and careers because of this illness. The millions missing from their families, friends and social lives. The millions missing from the lives they want to lead. The millions missing from research and development of effective treatments and cures, the doctors and health care professionals missing out on proper training to diagnose and help patients manage this illness.
May 25th, 2016 #MEAction is global day of action for ME/CFS patients, advocates, caregivers, and allies who will join together to protest of the lack of government funding for research, clinical trials and medical/public education, leaving patients without relief. Protests are happening in: Washington, DC | London | Belfast | Atlanta | Boston | Dallas | Philadelphia | Raleigh | San Francisco | Seattle | Melbourne | Ottawa (virtual)
Most of us can only attend virtually.
So why a pair of hiking boots on my profile? I never got the chance to wear these down. It was I who was worn down. These shoes represent the healthy me. The me that I was before ME/CFS came in and ravaged my body. The me that I have lost to this illness. When I wore these shoes, I could push my body in exercise and it felt good even if it was hard. Then, hiking and yoga were physically beneficial rather than stressing my body to the point of dangerous consequences as it does now. I could tell my muscle to do something and it would obey me. I had a surety of foot that cannot exist with my present neuro-immune illness which affects every system and includes debilitating symptoms, like cognitive dysfunction, problems with short-term memory, concentration, clumsiness, disequilibrium, severe and constant pain. I miss that me that wore the hiking shoes with excitement, socialized with ease, read history and science books with pleasure while delving into beloved novels with joy, painted with abandon, listened to TED talks and understood. I miss what that body and mind could do.
The grief and fear when you start to lose physical and mental function never gets easier. Over and over, I’ve lost the freedom to create, take painting lessons, to be actively social, to get lost in movies and books, to mentally and physically engage. You never know what might become permanent. You adapt, becoming comfortable with a new normal — most people with disabilities do — but then the recovery/relapse cycle starts all over again.
Adding insult to injury, there always seems to be social pressure to spontaneously recover, or at least to stop behaving like an ill person. Compassion fatigue sets in, which is understandable but devastating. Lack of awareness around ME/CFS, and an outward appearance of health, can result in serious misconceptions about what our lives entail. The lack of community, empathy and acknowledgement of the real nature of this disease can be just as demoralizing as the symptoms.
Our lives would be infinitely better if this illness received the research funds to adequately perform quality biomedical research. Please sign the petition asking the NIH to fund research for ME/CFS: https://www.change.org/p/increase-funding-so-we-can-find-a-cure Please ask others to do the same.
Thank you all for reading this, your support and caring.
Studios in the Park in Paso Robles has redesigned Gallery 9 and moved it to the entry area of the studio. It is now the Upfront Gallery and is host to a multitude of unique designers and artists (yeah, I am there too!). If you are in Paso Robles, please visit and check out their latest exhibits!
Guess who?!
And here is a taste of one of the fabulous exhibits always to be found at Studios
Ahhh, the sight of vibrant flame colored poppies and sunshine stained mustard abounds throughout the Central Coast. Spring has definitely sprung! Here are a few hand painted odes to spring of my own!
 | jule on Can You See M.E. Now? |
 | kmullins51 on Can You See M.E. Now? |
| jule on Can You See M.E. Now? |
 | Susan Myron on Can You See M.E. Now? |
| jule on Can You See M.E. Now? |
 | Sandra Simpson on Can You See M.E. Now? |
| jule on Can You See M.E. Now? |
 | Monique on Can You See M.E. Now? |
