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Sophia Sieber-Davis

Sandra Johnson Name: Sophia Sieber-Davis

Age: 30

Where do you call home? I live on a few acres in rural Northern California with my husband, children, dog and chickens.

Education/Career: While I haven’t received a formal degree, I have college background in art history, painting and psychology. Especially in dealing with additional illness in my early adulthood, life has led me on a creative path. I like to share how I use art as a therapeutic tool and encourage others to find liberation through artistic creation. Recently, I’ve been studying cell biology and neuroscience through online universities to gain a better understanding of my disease (as well as understanding potential treatments), and the inner workings of the body.

What is a typical day for you? I am fortunate to stay home with my kids while I pursue my online studies and create artwork. It does take a lot of self-discipline to be your own employer while simultaneously facing the challenges presented by FA (and motherhood).

 

 

How long have you known you are living with FA? I was diagnosed with FA through a genetic blood test where the repeating amino acid sequence was found, at the age of 13.

Sandra Johnson Describe your transition from walking to walker/wheelchair. I went through high school stumbling and holding onto things, later using my wheelchair as a walker. The weight of my books or a friend in my wheelchair gave me extra security, and if I was going a long distance, I would sit. I felt better to be tall, and to exert my body. I planned to keep this up through college and adulthood, however, after unexpected chemo and surgeries at 19, I gradually stopped walking. At 30, I am wheelchair bound , but remain hopeful to walk again through exercise, therapy and the innovative treatments that are now becoming available.

What do you like to do to stay active and what type of exercises work for you to stay strong? On an ideal day I’ll get up and go straight to my yoga mat, lean on the wall with my medicine ball behind me while I drink tea and eat dried fruits/nuts. I like to incorporate leg stretches and movements while I’m here- though really, the subtle engagement of balance/core strength by sitting with a ball and drinking tea is huge. When I’m feeling extra motivated and energetic, which is not as often as I’d like, I do sit ups and leg lifts on the edge of my bed followed by a session on my standing frame. Activities I love during the extreme heat of California summers are kayaking (great for the neural pathways), and dipping in the cool lake or a pool. Water is so therapeutic when you have mobility issues; it’s great having the freedom to move- even if you’re holding onto a swim ring. Speaking of water, the healing properties of warmth combined with Epsom (or magnesium) salt, is key to my routine. I love taking baths for the soothing relaxation of muscles and joints, as well as for the ease of movement. Listening to a sound healing frequency makes it even better. Another therapeutic activity I enjoy greatly is basking in the sun. In the spring, I love to go outside in the morning - even sitting in the chill shadows until the sun comes over the hill and fills me with its warm light. In the height of summer, I go out in the evening and face west, soaking in the sun's heat and waiting for the moon and stars. With the connection to nature, posture/hand exercises, breathwork and prayer this has become a sort of spiritual practice.

Do you have any hobbies or special interests? On days I’m feeling a lack of stamina/motivation, I like to zone out into the world of literary fantasy.

What is a good trick to make daily life easier? I’ve recently discovered the importance of closing my eyes, stilling my mind and body, and visualizing that my body is working in harmony. One of the most important realizations is that any posture or movement, no matter how low key or basic, can be made into an exercise when you engage your mind.

When FA gets you down, what do you think/do to feel better? In addition to the things that help me get through the day (and often in combination with ), I love to lie on my belly. I refer to it as “cobra” and often wedge a pillow under my chest and lean up on my elbows while I type on my phone or read on my kindle. I could have written this along with my other exercise activities but I wanted to answer it with this question because it is very relevant. Any variation of lying on your stomach is great for engaging your spine and neck, and for slightly undoing the damage of spending lots of time sitting. It is very rejuvenating and a perfect thing to do when you’re tired and in need of feeling better.

What is one way living with FA has POSITIVELY affected your life? When I was 13 and getting out of a pool somewhat clumsily, an old lady noticed my ataxic symptoms and began to talk to me about my newly diagnosed FA. She said I could use my disease as a “stepping stone.” All these years I’ve appreciated her wisdom and encouragement, but I never really understood what she meant until now. When you’re told you have a debilitating and life-shortening disorder especially at the insecure time of entering teenage years- it’s hard to see FA as anything but a curse. Even so, on difficult days I’d remind myself of what she said. Now I realize what she meant because I grew up with the difficult physical strains of disease, I learned how to cope and make the best of my circumstances. I found art therapy, and the inspiration to share these things I’ve picked up with others.

Sandra Johnson What piece of advice that someone with FA has given you that encourages and inspires you? I have a friend who uses writing as one of her creative outlets. She also has Friedreich’s, but goes over many different facets of the human experience, with extra attention to emotional and spiritual well-being. In a recent blog, she wrote something that really resonated with me: "Let your feminine energy out, she’s been calling, but you haven’t been home.”

What is the best advice YOU could give a person who has been newly diagnosed with FA? To keep moving, and to keep believing.

What is the first thing you want to do when a cure/treatment to FA is found? I’ve thought about this for about 10 years. When I was in my early twenties, I would’ve said- I’d get all pretty and dressed up and go out dancing/clubbing with my friends. I have a fascination with going to a rave. Now- while I still want that- I also heavily envision hiking to the top of a hill or mountain with my children and watching the sun rise or set. Perhaps we’d make it a camping trip so we could witness both.

Tell us a little more about you... I’ve been alluding to it throughout this interview, but I’d like to formally invite everyone who’s reading this to check out this project I’ve been working on with a friend who also has FA- Art 4 a Cure. We’re on Instagram (@art.4acure), where we like to share artwork and inspiration to raise awareness for disease, as well as interviews of other artists who use creativity to help overcome. We also have a website, art4acure.org. Feel free to send me a message!



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