September Q&A: Grace
What is your diagnosis and what age were you diagnosed?
I have Limb-Girdle Muscular Dystrophy Type 2J (affecting the TTN gene), and I was diagnosed at 22-years-old.
What’s your go-to pick me up on a hard day?
Surrounding myself with loved ones is a necessity on both the good days and bad. I’m such an extrovert, being alone for too long brings me down. When I’m hanging with friends, I feel energized and content.
Also getting outside. Whether it’s the beach, mountains, or just a neighborhood park, being in nature always puts me at ease.
What is something positive you’ve experienced because of your diagnosis?
Since being diagnosed with LGMD, my gratitude for life and relationship with others have only grown deeper. I cannot hide my biggest flaw, and being exposed in such a way has proven to be a blessing - for one, I only attract the most secure, caring people into my life who love me for me. My friends and family are determined to keep me included, even when we have to get creative in overcoming barriers (lack of accessibility). Additionally, other people feel comfortable opening up to me over their own struggles, which I really appreciate being seen as a safe space and providing comfort to others, which I have needed many times myself. Since I started posting about my disability experience on social media, I’ve also made so many amazing connections, which is important with a rare disease. Nobody wants to feel alone. I’ve had people reach out to tell me that seeing my story gave them the courage to start using a mobility device and feel less embarrassed. That sort of message makes the negative aspects worth it.
Who’s your role model and why?
I have two role models: Judy Huemann and Anthony Bourdain.
Judy Huemann was an activist for disability rights, who led the fight for the Americans with Disabilities Act to be established. She devoted her life to a cause, speaking for a community that deserved (and still deserves) better. Because of her, I can live a little easier, along with every other disabled American. It would be an honor to use my own skills and strengths to benefit my community like she did.
Travel journalist Anthony Bourdain knew that the best way to connect is over food. While his story may have ended in tragedy, I see his life as one well lived - traveling to new places, learning about other cultures, eating good food, and sharing those experiences with the world.
If you could give your younger self one piece of advice what would it be?
Be yourself. Don’t worry about others’ ideas or expectations of you. When you focus on your own happiness and practice gratitude for what you already have (instead of comparing yourself to everyone else), the blessings just multiply. Be proud of who you are - your soul chose this life.
Where can we find your content?
You can visit my blog www.disabledandhungry.com and also follow me on Instagram + TikTok @disabledandhungry