Halfway through my eighth-grade school year (1960-61), I began to complain of pain that went from the lower back through to the hip area and on to the ankle. I had developed a physical problem of unknown origin, which influenced my ability to learn and added to my already struggling self-esteem. Because of all the different expressions of dance in which I was involved, my ballet teacher thought that I had pulled a muscle. I stopped tumbling on the trampoline, dancing jazz, which I dearly loved, and acrobatics, but not ballet. The pain continued. I stopped horseback riding and water skiing. I stopped climbing trees and hiking. The pain continued to intensify over time. My disappointment continued to increase as I was forced to let go of the things that I loved. Academically I was not gifted, but in the physical, I had a sense of accomplishment that had somewhat offset the failures in reading and school performance. Finally, I had to even stop my beloved ballet. I was becoming a blob of pain without anything that I could call “me.”
The pain shifted from just being uncomfortable to keeping me awake at night. I would rock my entire body back and forth in the bed each night in order that I might get to sleep. This rocking helped to reduce the burning pain and the muscle cramps. Soon I was not able to walk without a limp due to the increased level of pain. I hurt sitting, walking, sleeping and generally all the time. The pain cramped, burned, throbbed, darted, tingled, and ached deeper than I could identify.
I had mentioned this pain to my mother several times. After several months, she became concerned, so she took me to the pediatrician. He agreed that I must have pulled a muscle, and rest from all activity was prescribed. However, the pain and the limp did not go away. I lost the natural rhythm of walking. My grades began to suffer, as I could not focus on anything except how badly I hurt or how sad I was in facing all the losses. I was overly self-conscious about the ever intensifying limp and the differences in how each leg moved. I was confused and unable to identify where the confusion was coming from.
After a few more months (by this time 6 months of pain had gone by), the pediatrician sent me to an orthopedic surgeon, who, after an exam and several x-rays, diagnosed me as having a “slipped capitol femoral epiphysis” (damage to the bones in the hip socket).
Mother cried when she heard the diagnosis. That was only the second time that I had ever seen my mother cry. Years later, she told me that she was so sorry. She had had a sense of feeling responsible for the severity of deterioration and for the problems that I was to face in the future. I was only 13 and had no idea what path I would be walking down. Mother knew. She had to build a tough stance toward my physical recovery. At the time, I thought that she did not care about or love me. I was basing that on an already established belief that I was not worthy of her love. Had she been overly protective or overly sympathetic to me, I would have never learned to walk or learned how to live with pain. God’s grace gave my mother the ability to be strong in the face of both of us hurting. Mother could not see the emotional pain that I experienced from a reading disability. She saw the mistakes. However, she could see the pain in my physical handicaps and responded to me with compassion and strength.
A slipped femoral epiphysis is an unusual, although not rare, disorder of the adolescent hip. For some reasons that are not well understood, the ball at the upper end of the femur (thigh bone) softens and slips off in a backward direction. A slip occurs because the growth plate between the epiphysis and the rest of the thigh bone cannot stand up to the stress place upon it. Most often, it develops during periods of accelerated growth, shortly after the onset of puberty. In most cases, the slipping of the epiphysis is a slow and gradual process. However, it may occur suddenly and be associated with a minor fall or trauma.
It occurs two to three times more often in males than in females. Early diagnosis provides the best chance to achieve the stabilization of the hip and reduction of future complications. The most common complications include the permanent alteration of blood supply to the femoral head (avascular necrosis) and a loss of articular cartilage of the hip joint (chrondrolysis). Loss of articular cartilage may cause the hip to stiffen with permanent loss of motion, loss of ability for the joint to bend, shortening or shrinkage of a muscle or tendon and chronic pain.
Depending on the severity of deterioration of the epiphysis, surgery may be required so that the surgeon can place pins in the hip to stabilize the socket. Three to four months (more time is needed due to the severity of the destruction of the joint) of non-weight bearing might be required to ensure that the abnormal growth plate has fused. Placing pins through the socket to stabilize the joint has a side effect. The pins actually stop any further growth of the femur. The epiphysis of the femur is one of the growth joints for body height of the bones. With physical therapy, some range of motion can be gained. If the deterioration is minor, normal activities can be resumed. On a continuum, the more severe the destruction of the socket, the less range of motion can be regained and the less activity will be recommended. I had been diagnosed in the severe stage of deterioration.
I left the doctors office on crutches so as not to put any weight on the leg until the bone had hardened. With today’s modern medical advances, I might not have been required to be non-weight bearing for as long as I was, or maybe at all. Because of the significant degree of deterioration, I was advised to have surgery to place metal pins in the hip socket to prevent the epiphysis would from slipping out any further. He referred me for a second opinion from another orthopedic surgeon. A few weeks into the summer of 1960, the surgeon placed three long metal pins in the hip socket.
The surgeon told me that because the pins were placed in the hip socket, there would be no more growth in my leg from hip to knee but that there would be from knee to ankle. It would be necessary for me to remain non-weight bearing until the bones had hardened again. Even though I was educated about this, I was unaware of how it would look on me and how that look would affect my self-esteem. Fortunately, the school year had just ended. I discovered that it was awkward to maneuver around on the crutches and took some time to get used to using them with comfort. My self-esteem continued to suffer. I found it difficult to accept all the losses I was having to face and experience. I had lost the ability to do all the physical activities that I enjoyed. I lost my identity of being physically whole. I lost the affirmation associated with ballet. I lost my ability to focus on play or activities. I was consumed with pain emotionally and physically. I began to feel useless. Doing things had been my only way of developing some sense of self-esteem. I could not succeed in school. Now I was having my ability to get around to “do” things taken away from me. I was scared and felt uncertain about the future.
To help me find something to do from the sitting position during the summer months, mother found a woman who taught me to sew. At last I had found something new to do for which I had a natural talent. I saw where the pieces were to go. I did not need the pattern except for cutting the fabric. I soon moved away from bought patterns and began to design my own.
Dad suggested that I take apart one of his suits to learn how to make finer garments. I began making everything from my own clothes to party dresses, and later, to my husband’s suits and my children’s clothes to curtains and country quilts. I enjoyed the creativity of it, but I was not emotionally capable of believing how good I really was.
Junior High School, where I attended the seventh and eighth grades, was in a two-story building with no elevators, so it was necessary for me to transfer to the other Jr. High that was “handicapped accessible.” By the time school started, I was tired of crutches. I had fallen down enough times to know that I was ready to ditch them. My hands had blisters on them, and my underarms were sore. I dropped things often. I never got use to the noise when something fell.
Once school started, other students noticed me and my self-consciousness increased. Some students were concerned about how they could help, while others made fun of me. Because I was already super sensitive about criticism, I magnified the negative comments. When I became too tired for the crutches, I would switch to a wheel chair. It was easier to balance my schoolbooks and purse.
Mother had the shoe repairperson design a leg brace that went across my left shoulder and down to the right foot, holding it up and off the ground. When using crutches, this brace kept me from spontaneously putting weight on my leg. It was embarrassing to wear this brace. It went right between my boobs and distorted my blouse. Shoulder purses were not in style in my town. I was out of the mainstream in fashion. I did not have to wear the brace when I was seated in the wheel chair. That was nice.
All junior-high-school-age children worry about what others think. I wanted and hated the attention I received. I wanted it because it helped me to feel valuable; I hated it because I feared that others were either just pitying me or mocking me. I held my feelings about my situation quietly in my heart. I was embarrassed about being dyslexic and now for my physical disability. Smile, and pretend that everything was under control. That was my motto. I knew that if I talked about my true feelings, I would cry, and that would just add to my shame and embarrassment.
I kept others away emotionally, as I pretended that everything was fine. If I talked about my true feelings, I would cry, and that would just add to the shame and embarrassment. I was so worried about what others saw. All the issues surrounding Dyslexia, and now this silly brace, crutches and/or the wheelchair, just added to intensify just how inadequate I felt. All the losses became one big disappointment to carry (Please refer to Appendix “A” for a longer list of losses). I would get angry and sometimes sit at the top the stairs in our two-story home and let my crutches plop one step at a time all the way down to the bottom. It sounded like I was falling down the stairs. Mother would come running and be really angry with me for scaring her. I was just plain mad that I had to be the way that I was.
After seven months on crutches, the doctor said that I was ready for the pins to be surgically removed (December 1961). I was on crutches one more month after that recovering from the actual surgery. Then the surgeon said that I could walk again (January 1962).
Great news! Walk again! No problem...right. I was not prepared for the pain to increase. I had been in pain for the last year. Even when I was non-weight bearing, the hip hurt. Like an arthritic joint, weather affected it. No medicine had been prescribed. I would complain, but no one else had any idea as to the degree of pain that I was feeling.
Once off the crutches, I walked with a terrible limp. My entire body dropped to one side as I put weight on the right leg. I pictured myself as walking like the Hunchback of Notre Dame. The muscles fatigued and cramped quickly. Pain continued, not only because of the bone but also because of the muscles. I did not know anything about pain management at age 14. The leg was shorter than the other was. The shape of the leg was noticeably different in size. The leg had atrophied from non-use. The reality that the femur was not growing was now in stark clarity. I saw what the surgeon had told me would happen. I felt so deformed, twisted, misshapen, and visibly imperfect. This was just more than anyone should have to go through. I had to wear a 3/8 of an inch lift on my shoe. In addition, at age 14, I thought that everyone noticed. I had no range of motion. I would never again be able to do the activities I use to do. No running. Not even to the phone. No horseback riding. No carrying heavy packages. No springboard diving or any other high impact sport. No driving a car with standard transmission. No walking long distances because of the fatigue. This was not fair.
To keep my sanity, I found that I needed to focus on what I could do because the list of losses was so long. I could swim, walk short distances, or sit for short periods of time. Pain would remain with me for a lifetime. I feared that I would always have a grotesque limp. There were so many fears that I held inside. The bone would continue to deteriorate, which in the future would require additional surgeries. Because of the weight, I would only be able to have two pregnancies. I would not be allowed to even adopt a third child as carrying a third child would be too much weight on the hip.
I continued to rock myself to sleep at night to help with pain tolerance. The movement gave me something else to worry about. Who would want marry someone who moved around in the bed all night? Who would ever want to marry me with all these restrictions and problems?
Remaining thin would help me to postpone the inevitable future surgery. My life became focused on how I could preserve the hip that I had in order to postpone any future surgeries for as long as I could. Maybe by the time I needed surgery, medicine would have developed something helpful.
My dad liked to target shoot. He kept his clay pigeons stored in boxes in our attic. This attic was the unfinished third floor of our home. I would go up there often when I was angry or sad and throw the clay pigeons with intense energy across the room, smashing them into the walls of the opposite side of the attic. I smashed and smashed until I no longer needed to. I would cry my heart out up there, pray to God the Father that He would have mercy on me, and make everything better.
Somehow, I did feel better, even though things did not change. I believed that God was a loving father, a protector who would intervene on my behalf and had an overall plan for my life. In the quietness of the attic, I had long talks with God. In my child-like faith, I trusted him with my life and everything that was happening to me. I believed that God had a meaning and a purpose for my life and all that I was going through. I just did not understand what that meaning was. I prayed for wisdom to understand, patience to wait and persistence to endure until my life was relieved of the pain. I knew that He saw my heart. I guarded my heart from others out of fear of being hurt by them. Too many experiences had already proven to me this truth. I could not endure more pain.
I developed a fear of falling, as it might lead to me hurting myself. I had been bold in all the activities I used to do before hip surgery, so this fear was such a stranger to me. My friends were in the stage of “no fear.” They were not leaving me out, but they went places that I would not. Isolation was a common, familiar feeling for me.
Sadness and grief at the loss of my lifestyle weighed heavily on my shoulders. There were too many feelings all jumbled up in my heart and mind to form into words. The feeling that I had been made this way and that there was no way out of this situation overwhelmed me. When would it ever end? Now 14, I was developmentally more mature than at age 10. Suicide was not an option any more. I had found a safe place to let out some of my frustrations. I had developed a faith, and I had a friend that I knew I could talk to. I could trust God and two very close friends to listen, to guide, and to hold my brokenness in their confidence.
One of my special friends was Mary, who I considered to be my very best childhood friend in the world. She lived across the street. It was her home that I ran to the night Dad threatened to kill us all. We went almost everywhere together. When we could, we would dress alike. We would talk on the phone for hours. We told secrets, we laughed together, and we cried together. There was no better very best friend in the whole world.
The other of these special persons was my cousin, Thomas. I did not know how to live with the pain, the altered life style, and the limitations I faced. I did not know how to cope with the uselessness or the embarrassment that I felt. He was extremely popular and had been on the football team when his life was changed forever. Polio left him paralyzed from the waist down. I went to him for counsel. His love and compassion for me in itself was healing. We talked about the continued usefulness of ourselves even with our physical limitations. Thomas encouraged me to embrace the pain, as it was a sign that I was alive. He suggested that I go out and do something for someone else when I hurt and that the pain would lessen or maybe even go away for a while if I did so. That turned out to be true . I began to develop a life of giving to others in service. It was not easy. Doing for others meant that I had to continue denying the truth that I was hurting or that I felt unworthy. My private self and my public self were becoming well defined and they were not necessarily congruent with one another.
Once off crutches, physical therapy was prescribed. Because of the limited range of motion, I had as the result of the damage and the inactivity for the last eight months, the physical therapist had her work cut out for her. Rehabilitating my muscles was a challenge. Everything was so tight. I had lost range of motion and the ability to move the leg with a smooth rhythm. In order to loosen the tightened muscles before exercises began, hot packs were placed on my hip for a while. Then she and her assistant would stretch the leg. It hurt beyond my ability to tolerate the pain. I would either cry or get angry.
One day, filled with anger and self-pity, I planted my heals in resistance and refused to work. Because I was hurting and feeling sorry for myself, I kicked the therapist as she was trying to help me.
I will forever be grateful to that wise woman.
She said, “Let me show you something, dearie!” She whizzed open the curtain that separated me from the next person, and there was a little 3-year-old girl. She had been born without any hip sockets and had already had three surgeries to repair the sockets. The little girl was asked to get up and show me how well she could walk. She was so happy about life. Her face was animated, and she had a wonder of exploration in her eyes.
As I saw her struggle to walk even with her dramatic limp, I burst into tears. I found a deep sense of oneness with that little girl. I pleaded with God that I could have a sense of joy in my life. I saw that self-pity and anger were destroying me. God was faithful and the anger melted for a time.
I had a difficult time getting to my right foot. Putting on my socks was tricky. I was unable to get my foot to rest on the opposite knee. Therefore, I had to rest the foot on the seat of a chair and put the sock on from behind. It was almost impossible to clip my toenails. Then there was the struggle to put on pantyhose so that my heel was in the correct place. I eventually learned to adapt and successfully accomplish the tasks. I learned that if I put my right foot or leg into what ever I was putting on before my left then it was easier to get dressed.
Learning to walk again was hard work. I had to push through the pain and discomfort. Mother worked with me every day to help me with the home exercise program that the physical therapist designed. I could not do the exercises by myself and depended upon her help. I learned a heightened sense of self-discipline and persistence. The harder I worked, the more success I had. I learned to focus on the final result rather than the twisted physical image that I saw. For survival, I learned to deny that I actually hurt. I learned that if I focused on others and their needs, I did not have to face my pain and I would hurt less. I lost touch with the reality that I had needs, too. I projected my need for comfort onto helping others in their time of pain. I learned to minimize, if I could not deny, the degree of both physical and emotional pain. I learned to keep quiet about the degree of pain that I had because if I did not actually put it into words, then I did not have to face the reality of the degree of suffering that I was having on any particular day. I maintained a running dialogue with God, asking Him to bestow upon me the ability to endure. These conversations allowed me to remember that God had a plan for me. It helped me to stay focused on His promises and that He would deliver me from my trials. It sustained my belief that God loved me.
Reader Reviews for
"Facing the pain"
Jeanne G. Miller