CNS > Papers/Essays > MS > From Shock to Acceptance

FROM SHOCK TO ACCEPTANCE

By Anne Elizabeth Kinley

One October day as I was hurrying from my car to one of my classes at the College of St. Catherine in St. Paul, I felt my left leg give out, and down I went into a pile of leaves. I told myself that I was hurrying too fast and was overly tired. Several days later I took my daughter to her flute lesson, and on my way into the building I experienced difficulty in walking. This time I couldn't find a logical excuse for my problem, and I decided to see my physician.

The summer before, I had experiened a severe case of retrobulbar neuritis in my left eye for which I had been treated with large doses of prednisone. I had also been afflicted with numerous bladder infections in the past few years, but I didn't associate those happenings with what I was now experiencing.

After giving me a thorough physical examination, my physician sent me to a neurologist. The neurologist saw me several days later and told me that he was 98 percent positive that I was suffering from multiple sclerosis and was in the moderate range of involvement. He told me that I would have to be hospitalized for a course of treatment with ACTH, diagnostic tests, and physical therapy, but that I could return home first to make arrangements. I had learned about MS in nursing school many years ago and pictured a chronic, incurable, progressive disease, characterized by a loss of independence, neurological degeneration, and a wheelchair. I drove home in a state of shock, crying so bad that I wonder how I arrived there at all.

When I pulled into my driveway, I jumped out to move a toy that one of the neighbor's children had left in my path and forgot to engage the parking gear. My car kept moving forward and knocked the bricks out of the corner of our house before it stopped. I ran into the house, hysterically, phoned my husband's office, and ordered him to come home. From then on I managed to control my emotions outwardly.

To accept a diagnosis of multiple sclerosis and adapt successfully, during the past two years, I passed through four stages: shock, denial, regression, and acceptance. My recent experiences have proved to me that traveling through each of the four states, however painful emotionally, has played an important role in my present state of adjustinent.

When Earl took me to the hospital, I assumed the role of the good patient and cooperated fully with everyone. After four weeks of treatment, I was sent home on intramuscular ACTH and with a "quad" cane. Walking was most difficult for me, and returning to the hospital three times a week for therapy was all I could cope with.

I became tired very, rapidly and needed to spend many hours resting. My vision was blurred much of the time. I had difficulty controlling my bladder and often awakened several times durring the night to go to the bathroom. I found myself unusually agitated from the effects of the corticosteroids, had problems with sleeping, and became emotionally upset over the smallest frustrations.

My physician, family, friends, and minister thought I was adjusting beautifully, but my internal emotions were in a state of constant turmoil.

My neurologist told me my life-style of attending school, working, and homemaking would have to be altered, because MS patients do not get along well when subjected to many pressures. Even though I knew I no longer had the physical and emotional stamina that I had once enjoyed, I couldn't believe that this was a permanent situation. Thus, I went from a state of shock into a period of denial.

During the next two months, I worked hard at rehabilitation, with the goal of returning to work part time at the Childrens' Health Center and Hospital in Minneapolis. I returned to my job, but problems developed immediately. We were short staffed and had a concentration of seriously ill children to care for. Even though I was only working six days in each two-week period with a day off between working days, I was exhausted, and it was extremely difficult for me to carry a full load while being so dependent upon a cane.

I became more and more overwhelmed and fatigued, and before I had managed even two full months back on the job, I was ordered by my neurologist to take another leave of absence. My condition was deteriorating. After checking me over, he decided that I was suffering from a hysterical reaction and referred me to a psychiatrist.

While waiting a couple of weeks for an appointment with the psychiatrist, I spent much time trying to analyze my behavior. I realized that I had been going through the textbook stages of adjustment-shock and denial-and had branched off into regression.

My problems became clear. I had become hostile over how rudely this disease had taken over my life and had totally ruined the plans I had made for advancing in nursing. My neurologist had been my scapegoat. He, by diagnosing my MS, had given me a punishment that I wasn't able to accept, and in my irrational state of mind, I had decided to regress and show him and everyone who was close to me how helpless I was becoming. I was slowly slipping into a state of dependence upon him, my family, and friends. There is a large measure of comfort and security in such behavior, but I realized that in order to adjust and get the most out of my life, I would have to face my illness, accept my new body image, and reorganize myself.

I had hit bottom physically and emotionally, but I felt that I could make it. I turned to my religion for guidance. I became active in my therapy program by trying to live each day for itself. I incorporated regular periods of rest into my schedule. My husband and I spent more hours communicating with each other, and he became a whole new source of strength to me. Life slowed down and I began to see, feel, and enjoy things that I had been too rushed to notice before.

I now accept the fact that I have multiple sclerosis. I'm still new at it and make some mistakes. Sometimes, when I feel tired and experience increased symptoms, I continue with my activities instead of resting as I should. I have found that when I do interrupt my normal pattern and decrease my activity for a couple of days, my condition improves rapidly.

I have learned to set aside such activities as handwork, reading, and writing during these periods of rest and recovery. I work part time at the Childrens' Health Center and have discovered that if I don't overschedule other activities, I can still perform my nursing role quite successfully. On days when I have been under increased stress, I compensate by getting off my feet when I return home. Then I devote the next day to quiet pursuits. My husband and I have started to attend meetings of the Minnesota North Star Chapter of the National Multiple Sclerosis Society and have benefited from contact with others who share with me their problems of coping and adjustment.

At this point I can honestly say that having MS is not all that bad. I am gaining from it the ability to live my life in a lower gear and am seeing much beauty along the way.

I thank God for each day of sight and movement, and pray that I will have the grace to accept whatever new problems tomorrow might bring.

American Journal of Nursing/February 1980

In her book, The Pursuit Of Hope, Pulitzer Prize winner Miriam Ottenberg tells of her first symptom after being pulled out of the way of an onrushing car: "Too shaken to speak, I could not tell him the car appeared to me to be half a block away. Certainly I would not admit that all the cars now stopped for a light looked like those two- layered, over the road car haulers. I did not know then, would not know for many years, that I had temporarily lost my depth perception, that the two-layered look of the cars was a mirage created by double vision, and that the cause of it was mulitple sclerosis."