Name: Molly Lawson
Where do you call home? Arizona
Education (degree(s): How will FA add to your future [career]?: I graduated in 2018 with a bachelor's degree in Human and Family Development and a Masters of Social Work in 2020. FA has impacted my career choice because it narrowed the jobs I was capable of performing. Fortunately, I’ve always wanted to be a social worker.
Who do you live with? Up until recently, I lived independently. However, a few months ago, my mom moved into my apartment.
What's typical day for you? It really depends on the day. But typically I wake up at 6 AM, and my caregiver helps me get ready for the day. From there, I drive to work. (As a side note, I learned to drive in 2017 with the assistance and education from Driving to Independence. Shortly after that, I bought my own car. I have been driving with minimal restrictions ever since. I love driving!) After work, I might go to physical therapy or go see my friends. At the end of the day, my caregiver comes back and helps me get ready for bed.
How long have you known you are living with FA? I was diagnosed with FA in 2006 when I was 10 years old. At that point, the biggest problem I was experiencing were cardiac symptoms. I believe my right ventricle was a few millimeters too thick. My cardiologist could tell immediately that there was something else going on from the way I walked. From there, I saw a neurologist and I was diagnosed.
Are there others in your family with FA? No. However, my dad has Parkinson’s Disease.
Describe your transition from walking to wheelchair/walker: I walked independently until about 2013, when I started using a walker. In 2014, when I went to college, I began using a manual wheelchair when I was out and about and a walker at home. In 2016, I got a power chair. Now in 2021, I primarily use a power chair or a manual wheelchair.
What do you like to do to stay active and what type of exercises work for you to stay strong? I do physical, occupational, and speech therapy.
Do you have any hobbies or special interests? I love to crochet. My grandma taught me and when I was about eight years old and it is a hobby I have continued all of these years. It’s great for my hands!
What is a good trick to make daily life easier? Everyone finds their own pattern to make life easier. I am learning to accept and appreciate assistance in my daily activities. I also have a dog that I absolutely love and adore.
When FA gets you down, what do you think/do to feel better? This one is a constant struggle for most people with FA. My advice would be to sleep it off and try again tomorrow. Try not to get upset or short with people who help you.
What is one way living with FA has POSITIVELY affected your life? I get to see a side of friends and family that I wouldn’t have otherwise if I didn’t have FA.
What is a favorite motivational quote of yours? Be fearless in the pursuit of what sets your soul on fire.
What piece of advice that someone with FA has given you that encourages and inspires you? You don’t get to choose what happens to you in life, but you can choose how you react to it.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Adopt a dog.
What is the first thing you want to do when a cure/treatment to FA is found? Honestly, not much will change for me. It would be wonderful to quit progressing, but I have had FA for 15 years. My body has accumulated so much permanent damage that can’t be reversed. It’s not like I’m going to start walking, writing, or speaking clearly. I am not really sure what I would do.
"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? Honestly, FA is my best friend whether I like it or not. It’s always there and it’s never going away. It experiences everything alongside me. So yes, I have FA but I also HAVE it. It’s mine as much as I’m it’s.
Tell us a little more about yourself... I am a part-time social worker. I work in a comprehensive rehabilitation clinic and assist clients who have recently been injured (stroke, paralysis,TBI) to gain self acceptance, work towards recovery, navigate the Arizona disability system, and achieve employment. If you live in Arizona and need help with the disability system (AHCCCS/ALTCS) feel free to contact me.