Omega 2 Name: Omega A. Urban

Age: 41

Where do you call home? the Florida Panhandle.

Education (degree(s): I graduated from The University of West Florida in 2009 with a BA in Interdisciplinary Social Sciences, with focuses on Psychology and Criminal Justice. I am planning to take some online classes soon, focusing on writing and proofreading, to better enable me to do freelance work in that area.

Who do you live with? I live with my husband Larry, our eleven-year-old daughter Emmalee, our nine-year-old lab mix Kenzie, and our newest addition, our one-year-old highly energetic Plott Hound Nillie.

What's a typical day for you? I am a stay-at-home mom. I typically sleep in and start my day off slowly, letting my husband take care of the morning necessities. I'm a night owl and often suffer from insomnia, so mornings are not my favorite time of day! By late morning, I am awake and doing various things on my laptop or phone like playing games, watching Twitch, writing, designing documents and charts, listening to podcasts, and/or chatting with friends. When my daughter gets home from school in the afternoon, I help her with homework and spend time with her (if she wants!). My husband cooks dinner in the evening, and we all eat together, usually over an episode of Bob's Burgers - unless I am modding a Twitch stream for my friend that evening. At night, I sometimes play a game with my daughter, read, listen to more podcasts, and/or get back on my laptop.

How long have you known you are living with FA? I was diagnosed with FA on April 1, 2006; it was about 2 ½ months before my 25th birthday. I knew there was something wrong with my balance for about the prior three years, but I was a bit stubborn (and scared), so I tried to ignore it. I had started dating a guy that worked in the healthcare field who finally convinced me to see a doctor about it. Once I did, the neurologist sent me for a few tests; he then sent my blood to be tested for FA and other genetic disorders. Within six months of that first visit, I was diagnosed with FA.

Omega Urban Are there any others with FA in your family? I am the only one in my family with FA (that I know of).

Describe your transition from walking to walker/wheelchair. I started using a rollator part time during my last semester of college but did not use one full time until about 2012. I began using a wheelchair full time in 2017, when I was 36, because I had started to fall often and was fearful of severely injuring myself. (When I was diagnosed, my neurologist told me I would be in a wheelchair in five years; in actuality, in part because of my stubborn determination, it was eleven years!)

What do you like to do to stay active and what type of exercises work for you to stay strong? I was recently gifted some arm/wrist weights, ankle weights, and a “wheelchair home gym” that includes several resistance bands and handles. I have yet to establish a routine, but I will get there soon! I am also getting a sitting (“under desk”) elliptical to help with leg strength and mobility.

Do you have any hobbies or special interests? I especially enjoy listening to podcasts, playing The Sims, and doing various arts and crafts.

What is the first thing you want to do when a cure/treatment to FA is found? If they find a cure or treatment for FA, one of the first things I would do is go play on the beach with my family.

When FA gets you down, what do you think/do to feel better? When FA gets me down, I like to chat with friends or escape by playing The Sims.

What is one way living with FA has POSITIVELY affected your life? I hate having FA, but I am grateful for the friends with Ataxia I have met over the years.

xxx What is a favorite motivational quote of yours? My favorite quote is: “When everything's made to be broken, I just want you to know who I am,” from the song “Iris” by Goo Goo Dolls. To me, it means I am still a person worth knowing, even if FA has made me feel a bit broken. (I have this quote tattooed on my leg.)

What is the best advice YOU could give to a person who has been newly diagnosed with FA? My advice is to be as active as you can for as long as you can. Also, do as many fun and adventurous activities as you can while you are still at your most able. This does not mean that you give up in the future, just that you have a more exciting past.

How do you live your life in the face of adversity? Honestly, I have had quite a challenging time living in the face of adversity. I would like to use that struggle to author a book in the future and hopefully help others.

Tell us a little more about you… Besides the aforementioned hobbies, I also like to play board games, write, watch documentaries, and learn new things. I am obsessed with makeup and intrigued by true crime. Although a homebody, I enjoy spending time with family, including my dad who lives nearby.

Interviewed by
Interviewed by Andrea Kiess