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What I've Learned from Living with FA


Hi there! I’m Kelly, a 25-year-old living life with FA in Cleveland, Ohio. I was diagnosed at 18, and even though it is a huge factor in my life, I don’t let it stop me. About 8 months ago, after finishing graduate school at Ohio State University, I started the blog My Darling Life with FA to not only raise awareness, but also to spread positivity, hope, and show FA does not always define me. I have plenty of other passions in life, such as my love for educating children or my desire to get out there and see the world, and I don’t really have the time to let my health get me down!

That being said, there are times when it is impossible to ignore FA, and I know these times are just going to become more frequent and stronger, due to the progressive nature of FA. A key way I cope is by thinking of all of the things FA has taught me. It has given me an entirely new perspective on life, and I want to share a few of those:

1. What is important in life

I have learned to value relationships and experiences, rather than how things appear or popularity. FA has affected my relationship with both family and friends; you really learn who cares about you and who doesn’t really matter. FA has brought my family closer; I not only depend on them physically, but emotionally as well.

2. Everyone is fighting battles, mine just happens to be very visible

FA has given me the unique ability to connect with strangers wherever I go. When there’s an opportunity to chat many people ask about my walker, and sometimes share their own health ailments, (If they have any). People are more willing to share a personal challenge they’re dealing with in life, health-related or not. I think this is because they can see I clearly experience physical challenges, and they can somehow relate; our challenges in life may be different, but we are both experiencing challenges and have the power to overcome them.

After a close friend opened up to me about her personal mental health problems, she made a statement that will always stick with me, “Everyone has their issues, you just can’t always see them.” I think it’s so important to always keep that in mind.

3. Life isn’t fair

Like many children, I heard this ALL THE TIME growing up. However, FA has taught me this statement means more than not getting your favorite colored popsicle, etc. You can be kind-hearted and compassionate, and still experience something devastating. There’s no point in comparing yourself to others. This is a perfect segue to what’s next on my list:

4. Life is all about how you react

Okay, okay, I can’t take all of the credit for this one. Kyle Bryant, the director for rideAtaxia, worked to make a documentary, The Ataxian, that highlights challenges of FA and his extraordinary reaction. His message, “Life is about how you react,” hits home for so many individuals, myself included.

I don’t mean to sound like I have all of the answers, because that is far from true. I’m just a 25 year-old trying to process this life-altering disease. I do think I have some wisdom to share, though, and hope it can help you in some way!

Thank you for reading and for supporting Kate and me, as well as everyone else affected by FA. If you have a minute check out My Darling Life with FA and subscribe!

xx,

Kelly



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