My dreams changed when I was 28 years old. I was diagnosed with a brain tumor. Pretty scary, right? While I’m in the hospital, my mother keeps my 3 year-old daughter. When I leave my daughter, I kiss her goodbye and reassure her that I will be home soon as good as new. The surgery is successful. Time to celebrate, right? While recovering, I develop bacterial meningitis followed by a stroke. Four days later, I wake up to find I am paralyzed from the breastbone down. I can’t breathe on my own, feed myself, or attend to my bodily functions but, worst of all, I can no longer care for my daughter. I am totally dependent. My rehab is intense but produces little results. I never make it home to my daughter.
After rehab, I am sent to a nursing home for the “elderly.” Mentally I am still the 28 year old mother entering the hospital for brain surgery. I fell down the rabbit hole. Call me Alice. My companions are now elderly people at the end of life. This setting scares my young daughter. Her visits become less and less frequent. Then they stop. For six long years I fight for the dream of a more independent life.
The Greenville County Disabilities and Special Need Board, better named Heroes, comes to my aid. Halleluiah! Am I dreaming?! I can live in my own apartment with the support of a caregiver that visits me daily. For several hours a day this caregiver helps me with toileting, shopping, meals, feeding, and dressing. To be perfectly honest, I need more help. But I make it work. I am living my dream.
My dream is in jeopardy. Services begin to be taken away. Budget Cuts. Adding insult to injury, my motorized wheel chair is broken and can’t be repaired. For six months I have been fighting the Medicaid red tape, no end in sight. My low tech chair restricts my mobility and worst of all I am developing pressure spots on my buttocks and thighs. These pressure spots can develop into open sores. Not a good situation. Now I have a nightmare. I may be forced to return to the nursing home. Goodbye apartment and independence.