Name: Talia Cassel
Age: 20
Where do you call home? Oak Park (a town right outside of Chicago) and Illinois State University.
What is your education level? I am an incoming Junior in college.
Who do you live with? At home, I live with my mom, my sister, and our three dogs. At school, I will live with three of my friends in an apartment.
How long have you been diagnosed with FA? When did you start showing symptoms? I was diagnosed with FA when I was sixteen after being misdiagnosed with Charcot-Marie-Tooth Disease since I was nine years old. In hindsight, I can think of symptoms from as early as I can remember, but we realized something was wrong when I was eight years old.
Are there any others in your family who have FA? No, and my sister has not been tested to see if she is a carrier of the gene.
Describe one transition/adaptation you have made due to FA. A big transition I just had to make was quitting the job I loved. Since my junior year of high school, I worked as a one-on-one inclusion aide for children with intellectual and developmental disabilities in after-school programs, summer camps, and sports programs. When I think of things FA has taken from me, that is a big one. I began using a mobility scooter this past school year and that helped me realize that I was pushing my body way too hard. The previous summer, I was walking miles with the camp, and despite falling many times, I pushed myself. I loved working, and I would often ignore my safety. This summer, I am working a front desk job where I will be sitting. This job makes so much more sense, and I know this is the right decision for me, but I will always miss my other job.
What do you do to stay active? I have done multiple different things to stay active, but often I consider my daily life to be how I stay active, whether that be going to work, hanging out with my friends, cleaning my room, etc. While they may seem small, they get me up and moving, and I think that is a great way to be active. Since I started using a mobility scooter, I have been looking for more intentional ways to be active. I have access to a fitness center this summer with my job and am hoping to utilize their resources, plus I use my recumbent trike out on the trails.
What is a good trick to make daily life easier? I don’t know if this is considered a trick, but the biggest thing that has helped me is becoming comfortable asking for help. Starting college, I went from being surrounded by my friends and family who knew how to help me, to having to do everything for myself, to people who had never heard about FA. Educating them and being able to ask for help have made my life much easier. I have also become comfortable putting myself out there and asking strangers, and it has surprised me how many people are willing to help.
When FA gets you down, what do you think/do to feel better? I distract myself by doing things I enjoy or being around the people I love to help remind myself of all the reasons I am lucky in life. I remind myself of the amazing people I have met who also have FA. And although FA can feel isolating, reaching out to a friend who “gets it” can give me all the support I need for that moment.
What is one way in which FA has POSITIVELY affected your life? FA has taught me perspective; it has shown me what really matters to me in life and taught me what I value. It also visibly shows my strength. FA doesn’t give me the luxury of coasting through life, but rather I must work hard every day. I value my positive moments and my relationships with my friends and family.
What is a favorite quote that inspires you? I tell myself to “Keep moving forward,” not only physically, but also to show up each day even when it is hard or uncertain.
What is a piece of advice from someone else with FA that encourages and inspires you? I have two FA influencers that I follow on social media that encourage and inspire me – Kate and Kelly. Both women show the raw side of FA but also the successes of their daily life. They educate and inform, and that inspires me to be more open with others about FA and what it looks like for me daily.
What is the best advice that YOU can give to someone newly diagnosed with FA? That your life is not over. I know when I was first diagnosed, I felt like my life was over, but I realized that I am not my diagnosis. I have a future. I just need to keep moving forward.
What is your favorite motivational quote? “You only have one life to live so make sure it’s yours.” Eleanor Brown
I like this quote because I have learned to accept the things I can’t change and continued to move forward enjoying life every day. I have learned to do the things I love alongside FA. So much of my life with FA is out of my control so I want to make my own life meaningful.
What is the first thing you want to do when a cure for FA is found? Most people would assume I would want to go play a sport or go on a long hike but I think I would just want to go about my day and be happy for all the things others take for granted. I would want to go out without my scooter and not have to worry about accessibility or what people are going to think. I would enjoy moving my body with ease, even through the simplest activities.
“I have FA, but it doesn’t have me.” What does that statement mean to you? This quote means a lot to me because I have worked very hard to shape my life around FA so that I still do things I love. Over time, I’ve come to realize that there are so many other things that make me who I am, and FA is just one part of my identity, not my entire identity.
How do you live your life in the face of adversity? I have learned to just live and do everything I can do. I acknowledge the hard stuff and know it is a part of my life but it’s not my entire life.
Tell us a little more about you… I am studying communication sciences and disorders to become a speech and language pathologist. I am outgoing and love to hang out with my friends.
Interview by:
Breanne Lessard