July 2020
"To hate you, Ehler's Danlos Syndrome, would be to hate a part of myself and you don't get to have that power over me. You don't get to take my happiness. You don't get to keep me down. On the contrary, you have shown me how strong I really am and that I am capable of so much more than I ever would've thought possible."
- from Brianna's letter to Ehler's Danlos Syndrome
This month we asked our Unfixed members to write letters to their chronic conditions. Some sat down and hand wrote break-up notes. Others typed-out letters of inquiry about the nature of their relationships. Still others improvised and found that hate and gratitude can coexist. One member even wrote a promotion letter to her condition! The diversity of responses we get every month offers a telling glimpse into the complexity of living Unfixed. It is never black and white. Never good or bad. It's always both.
After six months together, we are discovering one resounding, shared sentiment. Chronic illness fosters a strength of spirit and perspective that is unshakeable. While in the midst of stabbing pain or unending vulnerability we may curse, withdraw from the world and lose our ground. But within this very adversity, our foundations are being rebuilt and reinforced by something greater.
As our Unfixed Community member Alayna so eloquently wrote in her letter to her immunodeficiencies, "You can’t stop me. I will not thank you, nor will I ever cower down or give up, no amount of scarring, fear or inconvenience will keep me from living a life of beauty. Our history together may have taught me that, but it’s my resilience that ensures it."
CLICK THE VIDEO BELOW TO HEAR MORE FROM THESE MEMORABLE LETTERS.
Member spotlight – William Atkins IV
"Every superhero has a superpower and my superpower is my Tourette's. I feel as though it has made me a more caring, compassionate and loving young man." - William
William is a Youth Ambassador for the National Tourette's Association of America where he gathers with other fellow Tourette's warriors to share experiences and raise awareness about this too-often misunderstood neurological condition.
Over the past six months we've smiled, laughed, cried and been stunned by the maturity, wisdom and strength of character that is William Atkins IV.
He currently attends McKinley Technology High School and is part of the National Honors Society and the Varsity Swim Team. He was diagnosed with Tourette's Syndrome in May of 2018. At first, William felt misunderstood and challenged by his motor and vocal tics and retreated from the world. But through the good coaching of his number one role model, his "mommy", he found his way back into the world. Through his faith, acceptance and an inherently strong spirit, William reentered the world with a force.
William is the first to say that having Tourette's has changed his life completely for the better. He believes it has made him a stronger, kinder, more compassionate young man.
He now uses his social media platform to spread awareness about his Tourette’s Syndrome and is an official Youth Ambassador for the National Tourette’s Association of America. As a Youth Ambassador, he had the opportunity to be a keynote speaker at the 2020 Youth Ambassador training held on Capitol Hill. He spoke with Senators, House of Representatives, and his fellow youth ambassadors who have Tourette’s and shared his journey of living with his superpower.
William is passionate about telling his story and how accepting his condition has helped him see that he is no different from anybody else. "I see my Tourette's as a blessing and not a burden." William is at the beginning of his journey through life and is already finding ways to be a positive role model in the world. He attributes his early successes to his faith, family and a limitless drive to live well.
We are excited to learn more about this extraordinary young man in months to come as he follows his dreams to make this world a better place.
William's mom attributes her loving spirit to her own mother - three generations of brilliant humans sharing their light with the world.
The "Invisible No More" Show
Earlier this year our Invisible Disabilities Association partner created the Invisible No More show to create engaging content and foster relationships during the pandemic. They now have thousands of viewers each week and we're not surprised! Guests share a wealth of information and insight into the lives of people with chronic illnesses during each episode. Last week William and his mom Tonya were guests - William spoke about living with Tourette's Syndrome while his mom shared tips for caregivers and moms on how to best support your loved ones with chronic conditions. Follow this link to watch the interview and then scroll down to listen to another engaging conversation where our Unfixed member Rene shares his experiences and how he's learning to live with Trigeminal Neuralgia.
Stay tuned
Next month we have some surprises coming your way!
On August 8th, we are thrilled to release the Unfixed documentary trailer to the public. We will notify you with a short newsletter announcement!
And on August 15th we are releasing an Unfixed Focus story on our member Brian Nice. With the pandemic still roaring through our communities we continue to put our location filming on hold but we're not going to let that stop us. Thanks to some beautifully intimate, pre-COVID footage shot by Mia Allen and Brian's fascinating life-story, we had plenty of content to create an unofficial "scene" from the documentary. We're super excited to share it with you!
Want to know how you can help promote the voices of the Unfixed?! It's as easy as sharing our monthly videos and trailer with your families and communities. One person willing to open their eyes and ears can eventually lead to a movement of open hearts.
Thank you for being an essential part of our journey,
Kimberly Warner
director/producer