How the power of technology has changed my life with FA
I'm now grateful for a digital art tool and Skyclarys symptom management
After I transferred from my scooter onto the desk chair, I swiveled to face the tablet screen, pausing a moment to regain my balance and composure. I carefully grasped the tool in my hand, securing it in my fingers and placing it on the blank page. “Now watch this!” I exclaimed to the patient guest behind me.
At my direction, the tool became a flat, bristle brush for oil painting, upon which I added burnt sienna to a wet brush, and from there, began to put down basic shapes with some movements of my hand. I drew thin lines and thick lines, bold shapes and soft shapes, depending on the direction I held the brush and how hard I pressed.
“Cool, man,” came the now fixated voice.
“I can even add another color and blend them once they’re on the canvas, or I can get a mixture by adding a stroke of a new color on top of a different color,” I said. I looked back over my shoulder to a still fixated look: “I might not be explaining myself well. Here, watch this!” I added, placing my hand on the wet canvas.
I proceeded to mix naples yellow into a wet brush and put the stylus down over the messy canvas on the clean glass screen. It was perfectly wet whenever and wherever I wanted, and it was completely dry at the same time. With the second color added to the sienna, I created more complexity — contrast and blending to bring value and texture to the piece.
I set the stylus down on the desk.
“A-mazing!” my guest articulated as we looked at the screen. The scribbling was nothing to be excited about, but the process was something impressive. Here was an exhibition of the power of technology.
The benefits of technology for living with FA
In 2014, I purchased my first drawing tablet, the Wacom Cintiq, a 22-inch digital art pad that rotated from a single point, giving it an extra feel of pen on paper. In my last column, I briefly mentioned the coordination problems I had because of Friedreich’s ataxia (FA), which prompted me to shift from art to a different course.
But despite my physical decline, I’ve finally regained my freedom to work and create things worth doing.
For my childhood and much of my youth, I was resistant to using the power of technology in my life. In my early 20s, I decided I’d occupy my down time with reading and such rather than watching TV. When the smartphone became the device everyone had and needed, I was one of the last ones to give in and kept the old flip phone. I can still be heard lecturing my nieces and nephews on the dangers of smartphones on human development.
Though purchasing a digital tablet for my artwork came with some internal conflict, having the tool at my desk was a breath of fresh air. No more was the physical and mental cost of trying and failing to do the kind of work that a part of me, in the depths of my soul, knew I should be able to do. As I became more and better adjusted to working digitally, I was able to breathe deep and enjoy creative freedom.
Progress in treatment
I’m writing this column on the third day after taking Skyclarys (omaveloxolone), the new, once-a-day, oral treatment for FA, and it’s already been remarkable. For me, the hardest part of having FA is not the slow and steady loss of vitality, which I’ve experienced for over 30 years. The hard parts are the symptoms, which swing back and forth like a pendulum, leaving behind heartache and further degeneration with the passage of time.
Skyclarys has provided some relief from this pesky reality already.
Naturally, I’m obliged to be grateful for this technological advancement, as everyone with FA should be. On the one hand, technology has been and is used both for great good and unspeakable evils. I’ll leave the unspeakable evils alone and unspoken. Instead, technological advancement prompts me to thoughts of personal responsibility. What path will I now travel after being rescued from some of the pits and traps of FA? What shall I now do?
Note: Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.
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