Facing Surgery and Finding Pride in a New Leg

I’VE BEEN TOLD BY MOM that I started falling down for no apparent reason when I was three years old. I have no memory of this. They began taking me to Dr. Menton, our first family doctor. He could find nothing. In time, a small discoloration started to appear on my left ankle. This first sign still went undiagnosed. Eventually the discoloration grew and spread up my ankle to my lower leg and eventually to as far as my thigh. As it spread, slowly, the skin hardened, the connective tissue disappeared, and limitation of movement and pain set in. The entire process occurred over a four-year period. Dr. Menton was stumped and referred me to Illinois Research Hospital in Chicago, Illinois. I started going there—first to the outpatient clinics. I remember Daddy waking me up at 4 a.m. for the drive to Chicago. He and Mom in the front seat, me in the back with a blanket and pillows. It always felt like a wonderful adventure on the one hand but ended up being very scary when we got there. Mom would always bring a thermos of coffee and I loved the smell. Daddy would stop at a grocery store in Sandwich, Illinois and buy a box of soda crackers and Mom would make cheese sandwiches as we drove. There were no interstate highways, so I imagine it took at least four hours to get there. The hospital was huge, with high ceilings and marble floors. We sat in a hallway with other sick kids and their families and waited for our name to be called. We had to wait for hours. Daddy would wait outside and when they finally called my name I’d usually be afraid to go in. There was always a team of doctors in white coats examining me and sometimes it made me feel special. Mom was never really verbal with me about any of these events. She usually was unsure of herself and deferred always to the doctors. At some point, I got hospitalized there for the first time. The disease had progressed to the knee by then. I had a huge ulcer on the knee that wouldn’t heal. I remember the visiting nurse coming every day to change the dressing. By now, I wasn’t going to school, so I also had a tutor named Mrs. Lynch. I just loved her. I also liked getting out of going to school. I got to stay home and I’m pretty sure we had TV by then. During the later stages I had more pain. I remember having my leg rubbed and massaged by not only Mom and Dad but also by Marilyn and Pat McFarland—our neighbor friends. Sometimes, when the pain woke me up at night, Mom would call Dr. Menton and he would make a house call and give me a pain shot. His coming would scare me and I’d hide in the closet. He was very kind and gentle and would try to coax me out. I’d scream when he gave me the shot and cry. He was a short, fat, ruddy-faced little man with a big mustache. I think he lost his license for performing illegal abortions, and everyone felt so sorry for him. We loved him. The first time Mom and Dad took me to stay in the hospital in Chicago, I was put in the girl’s ward. I remember being so frightened when they left me that I put the covers over my head and cried myself to sleep. But soon I got very comfortable there and liked it. I made friends with a little Mexican girl named Loopy Gonzalez. Her parents came a lot because they lived in Chicago, and they always brought us fruits and candies. I caught hair lice from Loopy and had to have my hair cut. She and I and the other girls in the ward who could get out of bed, would have wheelchair and cart races down the hallways. Sometimes we’d fill balloons with water and sneak onto the roof of the hospital and try to drop them on people walking floors beneath us. We did this for a long time before we got caught. On Friday nights we had a wonderful nurse named Pat who would take money left in our “banks” and order us greasy hamburgers from the Greek restaurant across the street. It was always a thrill. On Saturdays there was often a party in the boy’s ward with decorations, balloons, cake, punch, games, and clowns. Sometimes the staff put on skits. I’d wear one of the three special dresses that Mom had given me. I loved them. They were like Cinderella dresses—lots of lace, ribbons and full-length skirts. I was so proud of myself in them. Otherwise, we wore little hospital dresses that were very plain and smelled like bleach. On Sundays, the nurses delivered all the ward kids to a chapel downstairs. A volunteer played old religious tunes like Come to the Church in the Wildwood and Rock of Ages. We all hated going to church, but then we’d have visitors. The Sundays that Mom and Dad didn’t come, Arjean Moos or Grandma Hobson would come. I have only vague memories of these visits, but have been told about them. I remained close to Grandma Hobson through the years. I’d visit her home in Geneseo and she got to meet Kelly as an infant. I remember having to go to school in the hospital. My memories of the number of hospitalizations is vague, but I was there several times for varying lengths of time, the longest being several months to a year. During one of my first stays, I remember vividly getting a spinal tap. I can still visualize the little room and being told not to move. Mom was with me. They couldn’t get the needle in after several attempts, so no doubt I was screaming bloody murder. The good news today, as I think about all of these traumatic events, is that I was able to be open with my feelings, even though Mom never was. She always presented herself in a quiet, deferential, sweet way, and never talked about any of her own feelings. She must have been tortured with worry, and probably guilt, but she never let on. My treatments, to my best recollection, were penicillin shots on such a regular basis that I was constantly black and blue. Also, I was given cod liver oil every morning in orange juice. The nurses had to fight me to take it every day. Also, the occupational therapy department had us all doing little craft projects that really did seem to entertain us. I remember making tons of pot-holders on a little hand-loom of some sort. Maybe that’s why I hate to cook today. I think I may have also been given cortisone shots on an experimental basis. Sometimes I think my current health problems might be a result of all the antibiotics and cortisone I received. I’ll probably never know for sure. The doctors would make rounds daily in a big group. It always frightened me. They would discuss what an unusual case I was. Finally, they gave up on the treatments and decided to amputate my leg, apparently to save my life. By now I had been diagnosed as having localized scleroderma. It was in my left hand, on my left chest wall, and a little on my right hand, in addition to my left leg. They discharged me from the hospital to give Mom and Dad time to prepare me. I remember the day Mom told me about the surgery. She was on one side of the kitchen table and I sat facing her. She told me, very sweetly but matter-of-factly, that the doctors wanted to cut my leg off. This way I wouldn’t have pain any more and I could wear dresses and I could go back to school. Also, the Moline Daily Dispatch wanted to send out a photographer to do a human-interest story on me. I remember reacting in a happy, excited way. Daddy was just getting home from work, and when I cheerfully announced to him that I was getting my leg cut off he got angry and more or less reprimanded me for being so happy about it. He also said no one was taking any “God-damned pictures.” I went from feeling excited to feeling I had done something wrong. I felt ashamed and embarrassed. Later, I was told by my older sibs that the first time they had ever seen Daddy cry was after my surgery. While I was hospitalized, Mom and Dad would come to visit on some weekends. I remember putting on one of my three dresses and waiting for them. I knew they were coming when I heard Mom’s high heels clicking in the hallway. She was always the one I wanted to see. They always brought me some kind of homemade food and presents. Lots of times she’d bring me fried chicken. Once, she brought a huge basket of presents donated by church. They were marked and I could pick one a day to open. This is one of my fondest memories—picking a present every day. Maybe it was a storybook, doll, or a book of puzzles, or a teddy bear. It didn’t matter. It generated a lot of excitement with all my little girl friends and nurses. The day of my surgery, Mom was at my bedside. They put me on a cart and I remember being wheeled into a long hall, onto an elevator, and delivered to a small room outside of an operating room. I felt cold. I was left alone there. I started feeling afraid. I sat up and peeked into the other room. I thought I saw blood in the next room and started crying. They wheeled me into the operating room. I was wide awake. They put a heavy rubber mask over my face and turned on the ether. My last memory was one of terror and suffocation. When I woke up I was back in my ward with Mom at my side. I was nauseated and vomiting. I told Mom my leg hurt and she told me it couldn’t be hurting because they had cut it off. I remember looking down and seeing that it was gone, but insisting that it hurt. I was furious because I was strapped down. They took the arm restraints off and I pulled out my i.v. They put the restraints back on. My stump had a huge bandage on it and was connected to a series of pulleys and weights at the end of the bed. My next memory is the physical therapist insisting I get out of bed and walk on crutches. I refused. Finally, after a series of refusals, two therapists loaded me onto a cart and took me on a tour of the boy’s ward. At each bed they would tell me what was wrong with the child. At one they told me, “This little boy will never walk.” “This little girl can’t see,” etc. After the tour, I got out of bed and walked on the crutches. I actually got to love the hospital—to the point that on the day of my discharge I didn’t want to go home. I cried. When I got home, I remember being the center of attention. Daddy took me to a prosthetist in Davenport, Iowa, and they made my first leg. Daddy was totally fascinated with all of the mechanics and watched every step of the way as they constructed this leg. He learned how to make adjustments on it and, when the weather changed, was an expert at getting the tension just right and any squeaks out. He loved to show this leg off to his buddies, and I remember many times standing still while he described the workings to them. He’d be so excited I actually felt a sense of pride. It was an unusual and sweet way to bond with him. In later years, when discussing some of these memories with Mom, I asked her how she managed. She said that on my discharge the doctors told her to just treat me like one of the other kids. “So,” she said, “I did.” Again, she was so trusting of doctors that this good and simple advice helped her to raise me to be at least partially sane. Somehow, I got enough compassion and love, and enough good, practical reality. I’m sure I had many exceptions made for me, but I honestly felt that I became just another one of the kids. I remember feeling the saddest when my sisters went swimming at the city pool in the summertime. Both Mom and Dad would make sure to spend that time with me—either Daddy taking me for a ride in the car for an ice cream or just into the country, or Mom playing cards with me or us baking cookies together. I felt bad that I couldn’t ride a bike. One summer I decided I would at least just sit on the bike and prop myself against the steps. I would kick off and roll down a little hill and practice keeping my balance. I didn’t believe I’d ever be able to ride and shocked myself one day when I started to actually peddle. I was so ecstatic that when I fell down, I got right back up and rode into the street. After one more fall I ran to Mom to show her. I could hardly contain myself, and I’ll never forget the look on her face. To this day, one of my greatest memories of accomplishment is that. I had no intention of teaching myself to ride a bike. I was guided by some kind of unconscious force. I tell this story to my clients and I remind myself of it today when faced with a problem I feel fearful of. When I reflect on all of my early traumas, I sometimes wonder why I’m not crazy today. I think maybe it was a blessing that Mom had seven kids to care for and didn’t have time to indulge and overcompensate for me. Being always loved and never neglected, I must have felt safe and cared for. Mother had a low drama profile and this probably served to help minimize the consequences for me. I realize that I overcompensated for my loss by overachieving in school. This overcompensation had the downside of causing me a great deal of anxiety, but then again, it had the upside of motivating me to work hard, achieve and be able to care for myself and contribute something back. So, all in all, I am a nut case. But, in the scheme of things, a small one.