My name is Tracy Steele.
Growing Up
My earliest memory is from when I was four or five years old. It was Easter Sunday. God woke me by calling my name. My mother was getting ready for sunrise service, and since I was awake she took me with her. I remember the outdoor service in the desert and the beautiful sunrise. I also remember burning my mouth on hot chocolate.
I grew up on a small farm with animals — cats, dogs, chickens, geese, and two pigs named Rib and Chop. I attended Jamul Los Flores school. One year there was a flood and we were stuck at school until our parents could reach us. The school served peanut butter and jelly sandwiches while we waited. Our house was on a hill, so it stayed dry.
In third grade we moved to West Seattle. After living on a farm, city life felt scary. I went to Arbor Heights Elementary, which was within walking distance of our new home. I was often teased. When walking home, a group of teenagers would make fun of me and make me cry. The only way I could get them to leave me alone was by singing church songs.
At the end of fifth grade our new home in Edmonds was finished — a beautiful house overlooking the Puget Sound. I started sixth grade at Olympic View and faced more teasing that made me cry every day. All my friends were girls, so I was accused of being a lesbian. Boys who liked me thought I was playing hard to get, but I didn’t understand that game. A boy named Ollie asked me out every day for a month. I finally said yes on a Friday and he broke up with me the following Monday. Things like that continued for two years.
Finding My Way
At the end of eighth grade I had a revelation: it didn’t matter what people thought of me. The only thing that mattered was what I thought of myself. From that point on, my life got better.
In ninth grade I started high school at Mariner. I made friends with other outcasts. The next summer I met Ron, who had known me since sixth grade in choir. One day he came to my house covered in mud after falling off his bike. While my mother washed his clothes, he borrowed some of my dad’s polyester pants. We went for a walk on the beach. He asked if I would go out with him, and I said yes. Later that day he gave me my first kiss. We spent a lot of time walking on the beach that summer.
We continued dating through tenth grade. His friends nicknamed me “Bloodhound” because I could always find him. On Valentine’s Day he gave me two carnations and said he wished they were roses. He also drew me a blue rose. That spring his stepmom sent him to Job Corps.
I became heavily involved in church and was baptized at Silver Lake Chapel. I later dated a boy named Ken from church, then reconnected with Ron after he returned from Job Corps. We became good friends again.
I graduated from high school in June 1986. That summer my dad taught me how to drive and I got my first car — a 1978 Dodge Dart. I attended Lake Washington Technical College studying bookkeeping and worked at Skippers and later Washington Inventory Services.
Marriage and Family
In May 1987 I graduated and started working at Universal Freight Forwarder in Seattle. Ron and I renewed our relationship. We got married in July 1988. Our son James Lee was born on February 8, 1989. Our daughter Veronica was born on September 13, 1991.
Life became very difficult. Ron struggled with addiction. He died on July 4, 1996, just four days before our eighth anniversary, after a drug-related heart condition.
A Diagnosis That Changed Everything
Later that year a neurologist diagnosed me with Parkinson’s. The medication made my condition worse. I eventually received a more accurate diagnosis of Corticobasal Degeneration (CBD), a rare neurological disease associated with Corticobasal Syndrome (CBS) and atypical Parkinsonism.
Living With Corticobasal Degeneration
My condition has continued to progress. I have used a walker and later a wheelchair. I have received Botox injections and tendon-lengthening surgery for my hands. My voice has become faint, and I have difficulty with balance, speech, and everyday tasks. Stress makes the symptoms worse.
Why This Foundation Exists
Through it all, my husband Steve, my children, caregivers, and community have supported me. This foundation exists to help improve quality of life for people living with advanced forms of Parkinsonism like mine, and to support research that may one day offer better treatments.