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FARAFARA Cure FA

Marinda Cauley

MarindaCauley1Name: Marinda Cauley

Age: 25

Where do you call home? Chattanooga, TN

Education (degree(s): I have a Bachelor’s in Foreign Language and Literature, and I am working on my Master’s in Romance Languages with a focus in literature. I am working towards earning my PhD in Latin American lit.

What is your relationship status? I am married, and have two step-children.

What's a typical day for you? On a normal day I go to work (teaching high school and middle school Spanish) at a local private school, then I come home and hang out with my husband and dog (George). We play videogames and I do my grad school work!

How long have you known you are living with FA? I was diagnosed 3 years ago when my little sister went to see a doctor about her issues with balance. They eventually figured out that she had FA, so I got tested and we found the same for me.

Are there any others with FA in your family? My younger sister. She is 21.

Describe your transition from walking to walker/wheelchair. I have not yet made a transition to using any assistive device full-time (I’m being stubborn). I got a scooter for work, as the school is really difficult to navigate (it’s a real-life M.C. Escher painting). I leave my scooter at work when I leave. This is the first year (out of three) that I have had something like this at work. My sister is studying abroad in Scotland currently and has taken to using a sparkly gold cane, though I think it is primarily so that people won’t think she is drunk. 

What do you like to do to stay active and what type of exercises work for you to stay strong? I see a massage therapist weekly that does strengthening activities with me on my legs (resistance, stretching). I have a stationary bike in my living room, but I am lazy and mostly use it in the summer (when I’m not working).

Do you have any hobbies or special interests? I love reading/language. I listen to audiobooks on my way to work and I obsess over my schoolwork. I also love tattoos. I have nearly finished both sleeves on my arms and am working on covering my left leg! I also love drawing/arts & crafts. I make a lot of goofy stuff for my house and friends.

What is a good trick to make daily life easier? Not throwing daily pity-parties.

MarindaCauley2When FA gets you down, what do you think/do to feel better? Ha, I indulge in my hobbies so that I can be excited and not obsess over myself (i.e. read, write papers, get tattooed). I also go on “happy drives” where I just play music and drive around the city. Sometimes I go alone or with my super-hot husband.

What is one way living with FA has POSITIVELY affected your life? Being disabled means I get away with more stuff – I can be blunter with people and a little crazy. I would also say it has given me a depth of perspective/understanding of my body versus my mind, and the problem of living in a broken vessel. I have been able to have some incredibly meaningful conversations with people from different walks of life that are dealing with pain in which they feel alone. I find a sort of healing/comfort/catharsis in these connections we make, and it feels special.

What is a favorite motivational quote of yours? There is a Mexican proverb/saying that I love: “They tried to bury us, they didn’t know we were seeds. / "Quisieron enterrarnos pero no sabían que eramos semillas.”

What is a piece of advice that someone with FA has given you that encourages and inspires you? I have a friend that began to go blind in his 40’s (he is in his 60’s now) who has been a mentor for me for years (years before I was ever diagnosed or aware I had a problem). When I first was diagnosed I called him crying, freaking out about what was going to happen to me and generally losing it. He patiently waited for me to stop crying and then said, “Are you done?” I said yes, and he asked me “Where the f*** is your hope? Where the f*** is your faith? Do you not have enough evidence yet that you are going to be ok?” …I know he isn’t a person with FA, but whenever I need encouragement, I think of that conversation. He was right, I have been through some UGLY stuff and survived. I know I will be ok, cure or no cure.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? Get off of the internet. Go do stuff that makes you happy.

What is the first thing you want to do when a cure/treatment to FA is found? Honestly, I will probably do the same stuff I do now. I’d like to blow up my scooter, action movie style.

"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? One day at a time. I’d say to me the quote is about not making FA your entire identity. Like I said before, my mind and my body are two very separate things. My body can quit on me, but it has no effect on who I am as a person.

Tell us a little more about you…Well, I don’t know what else to say really. I guess I will add in that I’m a recovering addict, I have about 5 ½ years clean (I was diagnosed around 2 years clean). I am grateful that I was in recovery and had the community/coping skills to help me when I got diagnosed. Had I received news like that while I was still using I would’ve lost it. I got lucky.

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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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