An Independent Streak

Annie Davis

East Point, Georgia (36)

On the night before she was to start seventh grade, Annie Davis wrapped up the perfect last day of summer in Oxford, Ohio. As evening set in, a severe backache led her to ask her parents to call 911. Something was really wrong. As her symptoms continued and worsened, she was eventually airlifted to Cincinnati Children’s Medical Center where she stayed for 68 days.  

Now 32, Annie has T3 paraplegia from the spinal stroke that onset that day. Two weeks into her hospitalization, they discovered Annie has a birth defect so rare that only seven babies per year are born with it. The defect, cavernous hemangioma, is a type of blood vessel malformation where a collection of dilated blood vessels form a lesion. Because of this malformation, blood flow through the cavities, or caverns, is slow. Usually patients do not exhibit symptoms or strokes until they are over 30. Annie is not sure if it’s still the case, but at the time of her stroke, she was the youngest case on record. Because it’s so rare, this phenomenon is not something doctors screen for. Patients are completely unaware until it happens to them. Annie has great perspective on her stroke, even on her youth when it happened: “At 12, you’re just learning how to be independent anyway. It dovetailed as nicely as it could have. I think it would have been so much harder if I’d been older, already had a home and a life and a job.” (Story continues below after slideshow.)

Because Annie makes enough money and receives benefits from her full-time job in the film industry, Annie has never received any government assistance for her disability. Even when she was young, her parents’ insurance covered everything related to her injury. She tried to go through Vocational Rehabilitation Services in Ohio for assistance with going to college. It was a miserable experience. They would not support her going to a four-year college and would only pay for her to go to a trade school. She still finds that notion pretty hard to imagine, and it left her with a bad impression. This year, she did go back through Vocational Rehab here in Georgia to get a standing frame. It was important for Annie’s physical therapy because, after 20 years in a wheelchair, her legs are starting to resist straightening out both at the hips and knees. Her insurance wouldn’t pay for it because, while therapeutic, it technically doesn’t fix anything. Annie was able to get support from Vocational Rehab for the device, although she still had to pay 51% out of pocket. Still, that made it financially possible when it otherwise would not have been. 

If given the chance to speak to one of her legislators, Annie would talk about health care first and foremost: “I don’t know why or how anyone thinks that health care isn’t a right.” She talks about how people speak about individual freedoms, but how that seems to contradict compassion and keeping people healthy. “I don’t know how, when you’re looking at it economically, instead of just from a people perspective, you still wouldn’t see that it would be a boon for our population to be more healthy. I would need them to explain their perspective to me, from their vantage point, because they’re seeing something I don’t see.” Annie supposes that a lot of times lawmakers have been fortunate like her and have not had to worry about private insurance, but that’s not the case for everyone. She pays $663 per month for health insurance, which has nothing to do with pre-existing conditions. That’s just what everyone in her union on an individual 80/20 plan pays. “I am a productive member of society,” says Annie. She goes on to wonder why the amount of money she pays into the system wouldn’t warrant more. 

The light of Annie’s life are her two dogs, Godfrey and Rosie, and a cat, Hud, missing an eye. Godfrey is technically a mobility assistance dog, but according to Annie, “He’s an amazing regular dog [and a] mediocre-at-best service dog, sadly.” Annie’s next break between work projects isn’t until April, and this time she would really like to take a trip. She’s thinking California with some friends. She had a few months off this year, but prior to that, she worked for 13 months straight. Annie wants to get better at taking care of her spirit during those rest periods between jobs. On the next break, she plans to travel overseas. “I think the trip I’ll take after the next show will be Europe. I’ve never been and am going to make it happen in 2019. It’s just hard to choose where to start when I want to see everywhere!”

Writer: Shannon Turner, Photographer: Haylee Fucini-Lenkey

Copyright © 2019 Georgia Council on Developmental Disabilities. All Rights Reserved.
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