As a long-term nursing home resident, I want to explain how I keep myself going both physically and mentally. To better understand, I will give you a view of my past. At age 19 I fell, cut my head, suffered a cerebral concussion, and damaged my cervical spinal cord. The injury resulted in hemiplegia (paralysis on my right side) and temporary garbled speech. After a 13 day hospitalization, I was sent home to try to recover. I lived with my parents who did my care, physical therapy, and took me to doctor's appointments. It took a lot of work to keep me going and a great deal of mental fortitude. I managed to be able to walk but not able to get back to my prefall activity status or return to my job. Occupational therapists suggested I paint and do crafts to strengthen me physically and help my mental health. Physical therapists encouraged me to read by bringing me books, and I kept up on current events by reading newspapers and magazines. Then my parents became ill and life became more difficult. I walked less because of my parents' fears of me falling. I began to use a wheelchair more, particularly to go out.
For years my parents and their friends searched for a secure place for me to live. But the only available options were nursing homes, intermediate care facilities, or group homes. None of them seemed to fit the bill for me. Back then I wrote a letter to my congressman explaining how my parents' illnesses were affecting our lives. Soon after several state agencies wrote, called, or came to visit. I soon became involved with state rehabilitation. They sent me newsletters, grants, and books about disability issues and independent living. I also attended a conference and a local presentation about independent living, and learned how people with disabilities were improving their lives.
Fourteen years after my fall, my parents died within 35 days of each other. I moved to a one floor condo, which was adapted somewhat to meet my needs. I hired private caregivers to care for me. In a year, it became apparent that the funds my parents left me would not last long unless I supplemented them by getting a job. My state rehabilitation contact helped me connect to a local disability agency, and within six months I began volunteering. I was convinced I was on my way to a job.
My volunteering was slow getting off the ground. The agency was happy to have a volunteer, but I had to push to get something to do. I began by sorting file folders in my home. Then I started going to the disability office and spent time with another volunteer. We talked about living on your own with a disability. Before long I was asked to help set up the agency's bookkeeping system. A couple of months later I was asked to serve as treasurer on the agency's board of trustees. After an agency grant application was funded, I was hired part-time to coordinate it. A full-time job followed—my first in 16 years. Within a few months I was named director of the agency. In four years the agency's budget grew from $50,000 to $110,000 a year.