An early photograph shows a bright-eyed three year-old with shiny hair parted neatly to the side and her legs crossed primly at the ankles. Like any other three-year old growing up in the 1950’s, Linda VanDeusen had a zest for life and a curiosity about the world around her. Her father, whose own education had been disrupted by World War II, taught Linda and her siblings to read when they were very young and was constantly, in Linda’s words, “trying to figure out how his kids could be better than he was.”
Linda was on her way to that goal until, after a seemingly routine case of Chicken Pox, her parents began to notice that something was wrong. “I began to limp. My hands began to curl under, my arms became spastic, and my back would arch,” Linda remembers. Linda knows now that she was born with the genetic code for a disease called Dystonia musculorum deformams. “Until I got Chicken Pox, my immune system had been fighting the Dystonia, but when I got sick, my body had to choose whether to fight the Chicken Pox or fight the Dystonia. I guess it chose the Chicken Pox.”
Because Dystonia was an unknown disease at the time, rounds and rounds of testing revealed nothing to Linda’s doctors. “They concluded that it must be an emotional disorder, and that I was trying to get attention,” Linda recounts. Thus began a two-year period of weekly drives to Pittsburgh, 50 miles away from her hometown, where Linda would spend an hour with a psychiatrist. Her doctor eventually convinced Linda’s parents that treatment would be more effective if she was inpatient, and at the age of eight, Linda was admitted to the Children’s Hospital in Pittsburgh.
Linda’s case continued to mystify her doctor. Doctors know now that the body uses a chemical called Dopamine to help connect the neural pathways in the brain with the neural pathways in the muscles. Linda’s body only produced Dopamine while she slept, and when the day’s supply of Dopamine was gone, her body couldn’t replenish its supply. Without Dopamine, Linda’s muscles would not respond. “At breakfast time I could feed myself and move almost normally, but by lunch time my body had used up its Dopamine, and I would be unable even to lift my fork.” The fact that Linda’s ability to perform simple tasks came and went only further solidified her doctor’s theory that Linda’s problems were mental and not physical. Some of the hardest times, Linda remembers, were when she would sit there with a tray of food in front of her and no ability to get the food to her mouth. “Because the nurses thought I was capable of feeding myself, they wouldn’t feed me and eventually would take the food away,” uneaten by the hungry little girl trapped in a body that wouldn’t cooperate. Linda eventually lost even her ability to talk above a whisper.
She remembers “one good day when I was there. I woke up that morning and I could walk, I could talk, I could feed myself.” It was glorious. “And then I woke up the next morning, and I couldn’t do anything again. If I had known it was just going to be that one day,” she confides wistfully, “I would have done a lot more.” Linda’s one good day further reinforced her doctor’s diagnosis.
She was transferred to the Home for Crippled Children in Pittsburgh where she remembers a “nurse with purple hair. She was so mean, I wished her dead,” confides Linda. “The doctors were always telling me it was in my head and that I could do better. It would make me angry.” Two years later, she was transferred to a children’s mental institution where they tried different methods to motivate her to do things. Linda remembers most vividly the “ice water treatment. If I wasn’t doing what they wanted me to do, they’d throw ice water on me.” She also remembers the mean girl who would drag her around by the hair in her wheelchair.
But in the darkness of the mental institution, salvation came to Linda in a most unlikely way. Thirteen years-old now, doctors discovered that her hip was dislocated. They performed surgery and transferred Linda to the third floor to recover. In a body cast, the same nurse and nurse’s aide cared for Linda each night during the evening shift. “They were different from the nurses I’d had before. They were kind and patient with me. They told me about Jesus and presented the opportunity for me to ask Jesus to be my Savior. Of course I took it!” she says, with a lilt in her voice. “They would read the Bible to me every night and tell me, ’Linda, God is with you, and He will take care of you.’ I believed, even though I didn’t completely understand what it meant.” Linda’s surgery failed, and several months’ later doctors performed a second surgery. Back in a body cast and back on the third floor, Linda says, “I liked it ‘cause it was safe and I had those two nice nurses. They told me more about Jesus, gave me a Bible, and read to me. I couldn’t understand why they were so nice to me and others were so mean.”
Several years passed, and Linda approached her sixteenth birthday. “The doctors decided I wasn’t going to change, and I was getting too old to stay there.” They transferred her to Torrance State Hospital, an institution for the mentally ill. “I was put on a geriatric ward at the ripe old age of 16. It was a mixed ward with male and female patients, the next youngest female being 65 years-old.” There she met Beth Warner, a nurse who was a born-again Christian. She would feed Linda in the evenings, and on Monday’s, bath day, Beth would tuck food into her pockets to give to Linda while they were alone getting her bath. “I loved Mondays, because I would get milk.”
Where were her parents during this time? “They would visit when they could. Dad brought me a radio, and he always made sure it was on a talk show. That’s where I learned my current events. And he always made sure I had books. He was a carpenter, and he fashioned a special stand for my books. I would turn the pages with my tongue.”
Shortly after Linda was placed in the mental institution, her mother was involved in a serious car accident. She suffered from terrible headaches and consulted a neurologist about the possibility of surgery. Linda’s mother declined surgery, telling the doctor that she had a seriously ill daughter who was not doing well. She pulled out a picture of Linda and showed it to him. Her neurologist said a startling thing, “Bring her here. I want to see her.” This doctor had read about one case of Dystonia while he was in medical school, and he wondered if Linda’s physical manifestations might be symptoms of the disease that the medical community knew so little about.
Now eighteen years old, Linda remembers, “I had this serious talk with God. I said, ‘God, I can’t live this way anymore. It’s got to change or I’m going to die.” Five months later, Linda was admitted to Johns Hopkins hospital as a research patient. Within two days time, doctors had an accurate diagnosis for the first time in Linda’s life. On a medication called L-Dopa, she quickly regained her ability to brush her teeth, open a carton of milk, get dressed, and, eventually, walk and talk again.
The battle wasn’t over for Linda, though. Doctors knew that the levels of medication Linda was on were too high to maintain indefinitely, and that eventually they would stop working. They gave Linda two options — stay on medication and gradually lose the abilities she had so recently gained, or undergo a life-threatening surgery. Doctors gave her an 80% chance that she might die on the operating table. Linda’s fledgling faith was put to the test once again. She reasoned, “God didn’t bring me this far to let me die now. There’s a purpose for my life, and I haven’t met it, because I haven’t even lived yet.” The most frightening part for Linda wasn’t the surgery, but the fact that she would have to discontinue the very medications that had restored her ability to move, and, especially, to feed herself. “I was scared that nobody would feed me!” she remembers with a note of panic in her voice. “My doctor said, ‘I will come and feed you every meal. I will not let you be hungry.’ And you know what?” she states, shaking her head in amazement, “He did. Three meals a day until I had surgery.”
Her doctor told her she would need two surgeries, one on each lobe of her brain. They would require her to be awake during both, in order to give them feedback. The first surgery did nothing. During the second surgery one month later, the results were instantaneous. “I could talk. I could move my arms and legs. The surgery was a success!” Linda began eight months of rehab and, thirteen years after she had been wheeled into the first hospital, she walked out under her own power. “I knew I had a purpose in life.”
She remembers the emotions of re-entering a world that was so different from the one she had left. “All of a sudden, I was thrown out into a world that I didn’t know how to live in. I was 19 years old and was expected to act like a 19 year-old. I didn’t know how a 19 year-old acted. I had been living with kids and old people!” She entered a rehab center and began to learn some life skills. “I wasn’t real grounded in the Bible, either,” Linda remembers, “But I knew God was real in my life. I could see all that He had done for me.”
Like the divine appointment that led Linda’s mother to her neurologist, God was orchestrating another divine appointment for the next chapter of Linda’s life. Her doctor asked her to accompany him to New York for the International Dystonia Convention. There would be doctors from all over the world who were seeking to learn more about Dystonia. There would also be patients who had the disease. He wanted Linda to be one of them. “The doctor was in meetings all day, and there was no place for me to go,” Linda remembers, “so my doctor introduced me to this very nice family whose adult son also had Dystonia. They said they would watch out for me.” That son was John Van Deusen.
Over the course of the convention, John and Linda got to know each other. Dystonia had robbed John of his ability to speak, so he communicated with his parents through sign language. That wasn’t a problem for Linda. “When I was in the rehab center, there were many deaf patients. They helped me learn sign language, so when I was able to communicate with John and read his signs, he was stunned.” They talked for five hours, and then left with a promise to write each other. “We found love through the mail,” Linda grins. ”The mailman was our Cupid.”
Meanwhile life at home was increasingly difficult. “I couldn’t get into high school, because I had a business school degree from the rehab center, but I couldn’t find a job, because I didn’t have a high school diploma.” Meanwhile John was attending the Wil Lou Gray Opportunity School in Columbia. He became Linda’s advocate and secured a place for her at the school. Since most students were local, the campus virtually closed up on the weekends. “John’s parents started taking me home on the weekends,” Linda recounts. It was there that her faith really began to grow. Dynamic believers, John and his family didn’t just model Christian principles, they lived the Christian life. They demonstrated patience and grace to Linda. “I had a lot to learn,” she states, “I wasn’t always tactful!” As she learned to love their son, she also learned what it meant to love their Savior. John proposed on Linda’s birthday. The year was 1976.
As I listened to Linda’s story in her home in Columbia, South Carolina, I asked her, “Where was God during those dark days when you were institutionalized?” Her answer? “There was one person in every place that gave me hope.” She believes God placed them there to demonstrate His love. “Why aren’t you bitter, Linda?” I asked. “Bitter?!” she snorted as if I had proposed something preposterous, “What good would that do? Does it serve any purpose? Would it change anything? It will only make me angry and people not like me. Bitterness only hurts yourself.”
And where, I asked her, did she get her ‘can do’ attitude? “From my father,” she replied. “He would never let us give up. He would never let us say, ‘I can’t.’ He wouldn’t even let us say, ‘I’ll try,’ because that would give us an out. When you replied to his requests, you’d say, ‘I’ll do my best.’ That’s where that came from.” Linda hasn’t given up. She graduated from the Wil Lou Gray Opportunity School, received an AA in Medical Technology from Midlands Technical College, a BA in Biology from Columbia College, and a MED in Rehab Counseling from the University of South Carolina. She worked for Blue Cross and Blue Shield and the State of South Carolina until her retirement ten years ago. Today she works for her church and trains dogs in her spare time.
What advice would you give, I asked her, to people who are struggling? She replied immediately, “Don’t give up. Don’t quit. You don’t know what you can do if you don’t try. Do your best, and God will do the rest.”
Contributing Writer – Reach Out Columbia Magazine
Author of “Be Not Weary”
Member, Palmetto Christian Writers’ Network