We recently connected with Kim Owens and have shared our conversation below.
Hi Kim, really happy you were able to join us today and we’re looking forward to sharing your story and insights with our readers. Let’s start with the heart of it all – purpose. How did you find your purpose?
I found my purpose through two very unexpected challenges: autoimmune disease and blindness. In 2009, I got sick and I never recovered. After visiting multiple specialists, I was diagnosed with three autoimmune diseases. At the time I was a neuromuscular therapist with a thriving practice, but due to illness, fatigue, and pain, I had to close my studio.
The shock of becoming so ill, combined with the loss of income was very hard to accept but acceptance became my goal. Through a combination of meditation, therapy, and a really good rheumatologist, I learned that my life was not over, it was just different. I embraced a slower pace of life and built relationships with other chronically ill women.
A year later, my eight-year-old son’s personality drastically changed. Overnight Kai went from being active and social to being anxious and afraid to leave my side. Once again, I found myself facing a frightening mystery. We visited many specialists — neurologists, psychologists, ENTs, and more — but there were no clear answers.
Two years later, just before Christmas, I noticed he started writing his Christmas wish list in the middle of the page and his writing was all scrunched at the right margin. When I asked why, he held the paper up to his eyes, shifted it to the right, and said, “Huh, I didn’t see that part of the page.”
I knew then, that there was something wrong with his eyesight. The next few months were filled with eye exams, more specialist visits, MRIs, and confusion. Ultimately, a painful test called an electroretinogram proved that his retinal cells were dying and Kai was going blind. The doctor also reported that he was already legally blind due to progressive loss of peripheral vision.
My youngest son’s blindness diagnosis was terrifying. I didn’t know a single blind person, but I was fortunate that I could lean on lessons learned through my personal health crisis. We started by working on acceptance. We attended therapy as a family, and Kai did functional testing so we could better understand what he could and couldn’t see. We practiced scripts for commonly asked questions, too. Kids are resilient and once he understood why things seemed different and scary, he returned to being a curious and active kid.
Next, we built a community of blind and low-vision individuals and families of blind and visually impaired kids. They helped us to understand that most of our fears were based in ableism. Ableism is defined as discrimination in favor of able-bodied people. Kai’s life would be different, yes. But, like my own, still full and meaningful.
Mentors in our community taught us how to advocate for Kai to receive an equal and accessible education. Unfortunately, living in rural Georgia meant that we’d have to fight extra hard to gain access to the training, tools, and resources he’d need to receive a free appropriate public education. Eventually, a whole new world opened up to him which included screen-readers, braille, and a white cane.
During Kai’s senior year of high school, after a total of three genetic panels, it was discovered that he had four never before documented mutations to his ABCA4 gene plus autoimmune retinopathy. Autoimmune disease and sight loss could have ruined our family, but instead, they simply changed us. I became a writer, parent-mentor, blogger, and braille transcriber. Kai went on to graduate high school as the valedictorian of his large public high school and is currently attending college studying music theory and jazz drumset. He lives independently with roommates and navigates with his guide dog named Pride.
These experiences, have given me a new purpose. Now I spend my time helping other families navigate blindness through acceptance, community, and education.
Let’s take a small detour – maybe you can share a bit about yourself before we dive back into some of the other questions we had for you?
I run the social media platform and blog called Navigating Blindness, and manage Kai’s store, EyeSwear Apparel. Together we create content to help sighted people understand that blindness is a spectrum and we mentor parents of newly diagnosed blind and low-vision kids through the process of acceptance, building community, and advocating for an accessible education. We are frequent guest speakers booked for live events, virtual meetings, and podcasts.
Exciting news! Kim has written a memoir about her family’s experience navigating blindness. Her book, Blur, is coming soon!
Looking back, what do you think were the three qualities, skills, or areas of knowledge that were most impactful in your journey? What advice do you have for folks who are early in their journey in terms of how they can best develop or improve on these?
Dealing with a life-altering diagnosis is always difficult but focusing on acceptance, community, and proper training/education makes it easier.
Any advice for folks feeling overwhelmed?
I believe that what we resist, persists. When I find myself feeling stuck or overwhelmed I sit down in a quiet space and welcome my feelings. I allow the emotions to wash over me and as I feel them, I name them. They may come in powerfully, but they quickly lose their power once acknowledged. I always feel more clear after this exercise. Feelings are just information. Once I understand what I am feeling, I can use that information to make appropriate decisions.
Contact Info:
- Website: www.NavigatingBlindness.com
- Instagram: @NavigatingBlindness
- Facebook: @NavigatingBlindness
- Linkedin: kim-owens-navigating-blindness
- Other: www.EyeSwearApparel.com
Image Credits
Danelle Lejeune Donna Wright Elaina Satterfield
