Prologue: Our last two posts have dealt with my sister, Joy, her childhood memories of Japan and her experiences attending elementary school on the Itazuke American Airforce Base. Now we shift to Joy’s early experiences with cerebral palsy.

I am seven years younger than Joy, and as a child, I was not initially aware that she had cerebral palsy. She was always active. We walked together to church every Sunday. Joy rose up the ranks in our church’s Girl’s Auxiliary, she marched in the high school band, she fussed over her hair like almost any teenage girl. And, as I noted earlier, it was Joy who taught me to play basketball and turn cartwheels.

But whereas Joy’s disability was not immobilizing, it did mean that she experienced life differently than others. She had to struggle with social stigma, and she had to be stronger than others. Joy handled it all with grace. I’ve never really talked to Joy about her experiences. It is my privilege today to do so.

Becky: At first our parents didn’t realize you had cerebral palsy, did they? You were just a little baby and initially you did all the things little babies did.

When did they come to understand you had cerebral palsy?

Joy: That’s right. When they brought me with them to Japan, they didn’t think I had any issues. After settling into their home in Fukuoka they began to observe that I was not using my left limbs normally. Soon it became apparent that I was delayed in learning to crawl and walk. Mother used a tot harness to guide me to learn to walk.

Becky: Once they understood you had cerebral palsy, was it ever possible to find the cause? Did it happen during your birth?

Joy: It’s hard to ever be certain, but when I was four a specialist surmised that I had probably been born too fast and experienced pressure and anoxia to the brain.

Becky: Mother and Daddy must have felt so helpless, not understanding what was going on, and at that time there weren’t a lot of hospitals in Fukuoka. What did they do?

Joy: They took me to Tokyo for an evaluation at the military hospital there. The orthopedic doctor determined that I had hemiplegic cerebral palsy on my left side.

Becky: What is hemiplegic cerebral palsy?

Joy: It’s a form of cerebral palsy that affects movement and muscle control on one side of the body—in my case, the left side—causing stiffness and weakness in the limbs, and spasticity in my left fingers and toes. When I was little, it also resulted in my right eye crossing.

Becky: Did the doctor offer any kind of treatment?

Joy: At the time, the treatments he prescribed were just minimal. The next year, though, when I was three, I was fitted with a brace on my left leg that extended from my foot to my hip with flexible joints screwed to allow me to bend my knee.

Joy, age 3, in whirlpool bath at US Army Hospital in Fukuoka, Japan-1952

I was also prescribed muscle relaxation therapy in a whirlpool bath once a week or so at the Army Hospital in Fukuoka. I don’t think this treatment had any lasting impact, but I recall having fun in the whirlpool!

Mother started doing simple hand exercises with me at home to strengthen my left hand. I also started wearing glasses to correct my crossed eye. They worked well, so well that by the time I started school I no longer needed glasses.

Becky: I never realized you wore glasses. You and Luke were the only siblings of us five who actually had good vision!

Joy: I went through most of life without needing glasses. Of course, I wear them now!

Becky: Now we all do!

Joy: My right eye straightened, but my CP persisted.

So, in 1953, when we returned to the U.S. on our first furlough to Louisville, I was wearing the long brace.

Mother and Daddy decided to have me evaluated while we were in the States and took me by airplane to Baltimore, MD.

I recall being evaluated there by Dr. Winthrop Phelps, an orthopedic physician who was an expert in treating children with cerebral palsy. He was the one who conjectured that my CP happened at birth.

I remember Dr. Phelps using a reflex hammer on my knees. He prescribed a below-the-knee brace for daytime use and a similar night-time brace that I wore while sleeping.

He was so conscientious that he accompanied us to the brace shop to observe my brace being made!

At his recommendation I had to wear the brace six days a week with the clunky orthopedic shoes that went with it. But on Sundays he said I could wear normal shoes. I loved wearing dress shoes!

Becky: I know that you had to deal with inconsiderate people and bullies when the family moved to Wake Forest. But how did people treat you in Japan? Do you remember?

Joy: I do not recall any Japanese person, child or adult, ever calling attention to my disability in a negative way. In first grade I wore the knee-high brace on my left leg to school at Itazuke AFB. My worst memory of first grade was of an older boy taunting me relentlessly during recess, yelling “Polio!” every time he saw me.

I responded emphatically, “I don’t have polio…. I have Cerebral Palsy!” to no avail.

This boy persisted with his taunts during the entire year in first grade.

Becky: What a dumb kid. It’s so frustrating that you had to educate people—and even then they refused to learn.

Joy: I was just grateful to have Judy with me. In many ways, she was my biggest supporter at school. Although we were in separate classes and grades, she played with me on the playground at recess and before school started each morning.

Becky: In 1956, the family moved from Japan to Wake Forest, North Carolina, and then you underwent further treatment, intensive treatment. What was that like?

Joy: Within a couple of months of our arrival in Wake Forest, Daddy and Mother took me to the North Carolina Cerebral Palsy Hospital in Durham, NC (now renamed the Lenox Baker Children’s Hospital). I was evaluated by Dr. Lenox Baker.

Because he was an orthopedic specialist at Duke Medical School, the exam room was lined with interns and residents. There I was in just my underpants in front of all those strangers. It was intimidating.

Dr. Baker reviewed my disability, asking me to parade around, and move my arms and legs here and there. I followed directions as best I could.

Becky: You were only seven years old. I’m sure you didn’t really understand what was happening.

Joy: Not really. After the appointment, the staff gave us a tour of the hospital. I recall thinking it seemed like a nice place. At that time, it was a two-story building with therapy rooms, a large living room, kitchen and dining room, a nursery for pre-school children, and separate dormitories and communal bathrooms for girls and boys. (This original building has since been replaced with a modern brick building.)

I was not prepared when a few weeks later I had to return with my parents and a suitcase. I was admitted for residential care.

Becky: You’d never really been separated from Mother and your sisters, except that one time you had to stay overnight at the hospital in Fukuoka. It must have been frightening.

Joy: Initially I was so homesick that I cried every night.

Within a few weeks another girl named Barbara Jo was admitted. She was two years older than I (as is my sister Judy) and had the same hemiplegic CP as I but on her right side. We became fast friends.

After Barbara Jo arrived, I was no longer so homesick.

And Mother and Daddy visited as often as they could. For my 8th birthday I was given the choice of a baby doll or a glamorous Miss America doll. I chose the baby doll, and it was cherished.

I still have this doll. She’s a bit worn. Her original clothes are gone. She now wears our old baby clothes that Mother passed down to me.

Baby Doll – Joy’s cherished comfort at CP Hosp 1957

Becky: I heard that back then the policy was not to allow families to visit children undergoing treatment except on certain days. It seems so cruel.

Joy: Families were permitted to visit but only on Sundays. Because Daddy was often away preaching on Sundays, the hospital staff gave my family special permission to take me out for visits on Saturday afternoon.

I looked forward to these outings with my parents and sisters. We often went to a park or out to eat at a restaurant, such as The Blue Light which had little juke boxes at each booth.

Mother sent me letters every day that I was in the hospital, and occasionally enclosed one from Judy.

On the regular Sunday visiting day, the staff took the children who had no Sunday visitors out for ice cream. I was included in these outings, too, even though my family visited on Saturdays.

Becky: Do you still have those letters? The sweetness of Mother’s writing every day is so touching:

Joy: Yes, I saved them and still have them today.

Letter from Mother to Joy, 1957. See also the opening photo above.

Becky: What did you do while you were in the hospital?

Joy: The hospital routine included daily Physical Therapy and Occupational Therapy sessions, and Gait Class in the afternoons.

OT was memorable for the crafts that I made and gave to my parents, especially a wooden pig-shaped breadboard.

Pig Bread Board 1957

Mother used this breadboard for years in her kitchen.

Becky: Oh, I remember that pig. I forgot that you made it. Mother used it all the time. I remember using it too!

Joy: She later gave it back to me. I now display it wrapped in ribbon.

The hospital activities were enjoyable and designed to normalize the experience for the children there.

I recall having fun on the hospital playground, too. Recess was scheduled twice a day, in the morning and afternoon.

The hospital provided school instruction with a certified teacher who taught in a one-room class with students from first grade through high school. I was the only student in second grade. Most of the other kids were older than I.

Since the hospital included children of all races, the classroom was integrated at a time when North Carolina public schools were still segregated.

The school held May Day. I remember being a butterfly and wearing a costume with paper wings.

Becky: So, you spent all of your second grade in the hospital…and you had surgery there, too?

Joy: Yes. Let’s see. Early in 1957, shortly after I turned eight, I had surgery to lengthen my left heel chord. I remember being moved to Duke Hospital for this operation and looking out the window at the austere gothic building.

When I woke up after surgery, I had a cast on my left leg that reached to my hip. I was in a wheelchair for two months. I went home from the hospital for Easter and to church on Easter Sunday in the wheelchair. The cast was changed to a below-the-knee walking cast, and then it was finally removed.

Becky: So, you were home for Easter. Were you able to go home for other visits?

Joy: Yes, I also spent Thanksgiving and Christmas holidays at home.
After I recovered from the surgery and finished second grade I was discharged home for the summer.

At summer’s end I was re-evaluated and released from the hospital “for good.”

I then faced adjusting to Wake Forest and going back to school in the fall.