Name: Caroline Spencer
Age: 35
Where do you call home? I live in Bloomington, IN now but “home” is Cincinnati, OH.
What is your education [degree(s)]? What is a current goal you have with your education? I have a PhD from the University of Cincinnati. My goals related to education now are teaching and mentoring students.
Who do you live with? I live with my husband and 2 Great Danes, Clark (retired service dog) and Bridget (current service dog).
What’s a typical day for you? I start by taking care of my dogs, then either go to work or work from home. I am an Assistant Professor at Indiana University. Some of my job includes teaching, meeting with students, and running research studies, which are usually done in-person. My job also includes a lot of writing, lesson planning, and analyzing data. These are tasks that I can usually do from anywhere, either in the office or at home.
How long have you known you are living with FA? 12 years. I was diagnosed in 2012.
Are there any others with FA in your family? No
Describe an adaptation and/or transition you have had to take due to living with FA.
For several years, I used my first service dog to walk (in place of a walker). He walked on my left side and was great at balancing me so we could just walk together. As time went on, I really needed the support on my right side, too. I tried some other scenarios, but the best option was to use a walker for support. He was still with me so he helped me get up if I fell and braced if I was standing or transferring. This worked well for him, too, as he aged and neared the end of his service life. With my second dog, it’s still not practical to walk with only her, but she can pull me in my wheelchair. She loves it! It makes “bad” days or “long” walks really fun!
What do you like to do to stay active and what type of exercises work for you to stay strong? With a family now, riding my trike around the neighborhood has been a great way to get everyone exercise and enjoy the outdoors. I also work out once a week with a long-time personal trainer and friend of mine. Weight exercises with dumbbells, resistance bands, and isometric holds are great. Often now, I find that shorter, more frequent workouts (15-20 min several days a week) are best for maintaining fitness and not exhausting me.
Do you have any hobbies or special interests? Spending time working with my dogs! I have started to become interested in gardening since we bought a house last year.
What is a good trick to make daily life easier? Use a wheelchair for housework. It goes so much faster!
When FA gets you down, what do you think/do to feel better? If I feel down, it’s often because my rest/activity balance is off. If I’ve been doing too much, I need to take a nap or have time alone to recharge. If I’ve gotten too much rest, I need to get going! Going to a store, my office, or a social event is helpful in getting me out of a rut.
What is one way living with FA has POSITIVELY affected your life? I have made friends across the country (and the world!) who are also affected by FA. Also, I would never have gotten Great Danes if it wasn’t for the fact that they have been perfectly suited to help me.
What is a favorite motivational quote of yours? “You are never given a wish without also being given the power to make it come true. You may have to work for it, however.” -Richard Bach
What do you wish the general public understood about FA or disabilities? To believe us when we say what we do or do not need help with something! Also, if you offer to help, and I accept, and then you tell me how I should be doing things differently, I’ll wish I had said no. 🙂
Has FA had an influence on your course of study or work? If so, in what way?
Yes. I had first wanted to be a clinical speech pathologist, but my own speech difficulties and fatigue have made it a better fit for me to work in research and teaching. I have more control over my daily schedule and work demands. But, my specific area of research is speech in neurodevelopmental and neurodegenerative disorders. If I didn’t have FA, I probably wouldn’t have been so interested in this area.
Are there any modifications that have made it easier for you to pursue your education or work in your job? Yes. Using mobility aids to prioritize being able to safely work has been essential. Traveling is important for my job, and I make sure to allow an extra day or two to adjust at the beginning or end of a trip. Direct flights are a must. Having a hybrid, flexible in person/remote schedule is also very helpful.
What is your favorite part of your education or work/career?
Working with students and seeing them “connect the dots” between their classes and clinical work.
Interview by
Andrea Kiess