College is hard for me to look back on. I love it; I hate it; I miss it, but I couldn’t do it again.
It holds some of the most precious memories of my life. The ones where I opened up to the world; I found out who I was. I lived life to the fullest and made some FUN memories. I took risks, I bet on myself, I made mistakes and I got hurt. In full disclosure, the end of my college tenure was emotionally scarring.
Nonetheless, it’s amazing to think about the things I was able to accomplish. I graduated Summa Cum Laude from Auburn University, I worked my way up to assistant sports editor of the student newspaper, I advocated for a more accessible campus and was successful in some large ways. I covered an Iron Bowl in Bryant-Denny Stadium and got quite familiar with the post-game media room in Auburn Arena. And I did all that while fighting a rare, neuromuscular condition.
In the face of physical challenges, I also moved away from home for the first time. I formed relationships I’ll never forget. I found out who my true friends were and who was on my side. I also lost my father, but I kept pushing through grief to the finish line. A lot of that grief wasn’t truly dealt with until after I graduated.
So, my college days are mostly easier not to think about. But it’s essential that I do reflect on such a crucial time of growth and change – gain and loss. A friend and fellow blogger with FA, Hasitha Illa, asked me to write about it. That was the cue I needed to revisit my college years and think about what they truly meant to me.
Recently, I heard someone say that helping others through a tough situation you’ve already endured is one of the most meaningful parts of life. Well, I’ve been through college with FA, and now I want to help other people with FA and other disabilities have an even better college experience than I did.
So that’s what I hope to do through this collaboration blog I wrote for Hasitha to post on her site. I hope you all read it and know that those words came straight from the heart.
Read the blog post here: https://www.lifewithahasi.com/blog/finding-my-voice-my-college-journey-with-fa
About My Collaborator
Hasitha Illa is a 29-year-old digital creator from North Carolina. We met virtually in 2023 on a “Living With FA” patient panel where we spoke to researchers and drug developers about our FA stories.
Hasitha is a kind and lighthearted individual who cares deeply about the rare disease community and helping others find a peaceful life. She is a very gifted advocate and works hard on her blogs. She does a great job of featuring other voices in the FA community in addition to pouring out wisdom she’s found in her own journey with FA.
Please go check out her site: https://www.lifewithahasi.com. (I recommend reading the post titled: “What I Wish I Knew in my 20s”)
Did You Know?
February 28 is Rare Disease Day! There are 300 million people living with rare diseases worldwide, and 1 in 50,000 people worldwide have FA.
On Rare Disease Day, I challenge you to reach out to anyone you may know with a rare disease and ask how you can support them in their battle against whatever health condition they are facing. Living with a rare disease can feel very lonely, but it doesn’t have to be! Let them know that you care.
For me specifically, the best way to help is supporting my fundraising effort for my next RideAtaxia. This year, I am attending a ride that a friend of mine, Kailey Newcity, is hosting in her hometown – Lake Charles, Louisiana. The ride is on April 11, so feel free to give any time leading up to that date in the link below! Proceeds go to FARA, who’s mission is to treat and cure FA!
https://give.curefa.org/fundraiser/6936132
PEACE!
I appreciate you all for reading and supporting me in my journey with FA. Things have not been easy lately, but I’m blessed to still be here and still fighting. I am continuing my hand control driving lessons this month, as I keep pursuing an accessible driving set up.
Until next time, I encourage you to check out any of my blogs you might have missed and stay tuned to my social media for updates in the meantime.
Keep fighting, my friends.
Knowin' Noah 
Leave a comment