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FARAFARA Cure FA

Lindsay Ashman

Lindsay AName: Lindsay Ashman


Age: I am 39 years old!!


Where do you call home? I was born and raised in Savannah, Georgia.

Education: I earned an English degree from Armstrong State University on Round 2 of college when I was 34 years old. (Round 1 was right after high school and before the FA diagnosis - mobility was my only obstacle, but it was a huge deterrent.)

Who do you live with? I have a 17 year old son, no wedding ring and no apologies. My son and I have lived on our own for six and a half years.

What's a typical day for you? I feel like I live at the grocery store! Really though, I am a freelance writer who is always looking for an interesting story. I spend my days working on something that may or may not be bought. I must be an optimist after all. (wink)

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed with Friedreich's Ataxia almost 16 years ago when I was 23 years old!! My diagnosis came seven long years after I suffered a traumatic brain injury in a car wreck - I had a bruised cerebellum and had to relearn how to walk. I worked out all the time, and I got back to 93%. (I had always been a klutz so I was never 100%.) When I was 18 years old, my walking ability - balance, coordination, etc., began noticeably regressing. Asking why, I began going to neurologists in South Carolina, neurologists in in Atlanta, neurologists at the Mayo Clinic and neurologists recommended by other neurologists. Shoulders were shrugged, I was given prescriptions for physical therapy and I was advised to use weighted silverware. In late 2003, at the Medical College of Georgia in Augusta, I was finally given a proper medical reason as to why I was physically regressing. My doctor gave me some numbers that I didn't understand - all I cared about was that I had a 15-month-old baby, and I was essentially told my life expectancy was another 12 years.

Lindsay A2Are there any others with FA in your family? I don't know of anyone in my family that had FA, but obviously they are back there somewhere... right?

Describe your transition from walking to walker/wheelchair. My transition from walking to using a wheelchair was a reluctant one! I literally didn't know I had a valid reason to use a wheelchair. I thought I wasn't trying hard enough to recover from the car wreck I was in when I was 16 years old. For years, I walked arm-in-arm with friends on the beach, I held on to counters as I stood in the kitchen and I leaned on the walls as I moved from room to room. I began using a walker around the house when I got a noticeably pregnant belly. Actually, it was only then that I surrendered to the wheelchair on outings. When I finally got diagnosed with FA, it was like I had permission to need help.

What do you like to do to stay active and what type of exercises work for you to stay strong? I do not like to work out; transferring to and from the wheelchair is my exercise! Reaching for stuff I drop or something on a high shelf is how I stretch. Putting laundry from the washer to the dryer is how I
lift weights.

Do you have any hobbies or special interests? My hobbies are continuously changing. Reading, photography, scrapbooking, music, writing... if I had more money, I would redecorate monthly!

What is a good trick to make daily life easier? A trick to make daily life easier is to do what you can for as long as you can no matter how it looks. No matter how awkward your movement may appear to "normal" people, there are tons of us who wish we could still do it at all. Think of us, not them!

When FA gets you down, what do you think/do to feel better? When FA gets me down, I watch a sad movie so I can cry it out. I might order dinner, take a long bath or give a trash bag full of clothes I don't wear to Goodwill, too. (Always on standby: "Titanic","PS I Love You", "Feast of Love","The Fault in Our Stars" and Door Dash)

What is one way living with FA has POSITIVELY affected your life? reqBelieving that FA has affected my life in a positive way is possible when I imagine what my life would be like if I didn't have FA. I would likely not be so introspective (self-aware), nonjudgmental, deep (intense), considerate of others, thoughtful or determined (stubborn). Ironically, I used to be a lot less willing to "stand up" for myself.

What is a favorite motivational quote of yours? 1) Your perception of me is the reflection of you; my reaction to you is an awareness of me. 2) If your path demands you to walk through Hell, walk as if you own the place.

Lindsay A3What is a piece of advice that someone with FA has given you that encourages and inspires you? The best advice/encouragement/inspiration of how to handle FA given to me by someone directly affected by FA was that the world will not stop spinning just because life gets hard. There are a lot of good people in the world, but there are a lot of jerks out there, too. Appreciate kindness, give what you would like to get and correct ignorant remarks and rude behavior... without hesitation! Back in 2003 (when I was diagnosed), so little was known about FA, and I believed everything I read. I scoured the Internet and FA support groups. Almost immediately, I bonded with a woman named Jan Crowley. Jan doesn't have FA, but her three kids do. I saw pictures of her kids - who were beautiful and normal and my age! So, I saved my money and flew to Texas with my mom and my two year old son in tow. Yeah, I kind of invited myself to their city after 18 months of friendly internet correspondence. Maybe it was *slightly* obnoxious, but guess who is still one of my favorite people to communicate with about our life experiences.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? The best advice I can give someone who was recently diagnosed with Friedreich's Ataxia is to know your story is different!
Everyone who has FA is not the same.
Everyone who uses a wheelchair is not the same.
Everyone with brown hair is not the same.
Don't think that your story has been written just because you were diagnosed with Friedreich's Ataxia.

"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? Friedreich's Ataxia is a disorder that I have; FA is not who I am. It's the difference between my body and my soul. FA is not a term I use to describe myself. Wheelchair-bound is not *typically an adjective I use to describe myself. FA influences the way I do just about everything, but I hate it too much to let it determine what I do.

Tell us a little more about you.....
- I can't stand it when people assume that I do nothing all day, that I am lying when I tell them I went back to school when I was 30 years old, that I am drunk or that my son is a scoundrel who gets away with murder. Those assumptions have all been verbalized to me several times each. Really. I mean... Who does that?!
- The emotional battle that came with the FA diagnosis has been much harder for me to fight than the physical one, and the physical battle is hard.
- I use wit as a coping mechanism. I'm sarcastic and self-deprecating.
- My son is so perfect for me... he's strong and helpful and funny and wise. He's why I know there's a God.

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