“How did you do that, did you fall?” he said in a panic.
“No, I said, “I just rolled over.” My crying became more intense.
“Debra, I don’t think you can break your arm rolling over.” Once he realized I hadn’t fallen he took a logical stance to the situation. After all, one of us had to pull it together.
I, on the other hand, was on the verge of hysteria. “But, Jack I can’t rotate my arm!” I began to hypo ventilate. The breathing thing was weird. I found myself doing the Lamaz method of childbirth whenever the situation was too much for me. Unlike in childbirth, in this case it only made it worse.
Jack got up and sat with me. He kept asking if he should take me to the emergency room. Having broken my elbow before and remembering the awful experience I had there I said, “No, just sit with me.” Every once in awhile he would forget and reach to rub my back. Even that was no good. A week before that the hair follicles on my whole body had become sensitive. I was no longer able to be touched. At one point I looked him in the face with such despair he asked me what I was thinking. I stated in a child like voice through my tears, “I want my Mom.” With a look of pure love he reached over and gently touched his pinky finger to mine. No words were necessary. Neither one of us slept that night. It was that night I first started the “rocking”
The rocking was a response I would have to distract myself from what was really happening. It was an unconscious act that to this day makes me marvel at the human brain. Humming seemed to go along with it. If I rocked and hummed it would change the focus. It was a self comforting act that I was sure I must have done as a baby. Without any pain killing meds it was the only recourse I had. We did not laugh that night. Jack just sat with me all night long. The next day was a Saturday. Jack called the doctor to see what we should do. The pain was still as intense and I found myself “going inside”. “Going inside” was what I now refer to as a type of meditation although in reality it appeared to look like a mild shock I was in. Along with the rocking, I stared at one spot and began a soft humming all the while holding my aching arm. Concerned that I was in fact going into shock, Jack was constantly trying to pull me back into the real world; to talk to him. He was always able to do it, but the real world would hurt too much and soon I was gone again.
He begged me to go to the hospital. With already $8000 in medical debt, I was insistent that all I needed was a pain killer. I figured the emergency room with x-rays would be another $2000 we couldn’t afford. I realize now that our problem was not that we didn’t have insurance it was that we had bad insurance. If I had none at all I think I would have been better off. He sat on the couch as I rocked and hummed. But the doctor never called back.
Saturday turned into Saturday night. My arms were beginning to be fixed in an upward position against my chest. My hands were inadvertently fixed into fists. My bodies’ motor skills were reverting back to infancy. I no longer thought the arm was broken; now I feared it would just stay that way. Jack saw it and was concerned.
We had tried to reach the doctor so many times that the answering service knew our voice before we stated our problem. All they kept telling us is that the doctor had been informed. She no longer listened to our pleas for help. Jack still wanted to take me to the hospital, but I held my ground. I always assumed the doctor would call. At 1am Sunday morning I had to face the fact that he wasn’t and I had to go to bed. It had been two days since either of us had slept. Still in fits of pain I laid in bed while Jack read me a book in hopes that I would be calmed and fall asleep. The title was “Three Men in a Boat, To Say Nothing of the Dog.” It was a comical book written in the 1800’s and it had been his father’s favorite. Jack used to read this book to John Henry when his eyesight was failing. That night it worked. His voice soothed me and we both fell asleep.
On Sunday the pain began to subside a little. I questioned whether I was just getting used to it and wondered if this was what my life would be like till the end. I was certain at that point I would die. I was beginning to be fearful that I wouldn’t. Although I still couldn’t rotate my arm, I was able to stabilize it with a sling Jack had bought the day before. On Monday I decided to get a different doctor. Jack’s friend David had been trying to get me to call the Brigham and Woman’s hospital in Boston for months. I was afraid I couldn’t afford such a prestigious place. I now realized I didn’t have a choice. I needed a doctor who cared.
Monday I went to the studio. Working that day was, as you can imagine, impossible. I was merely an entity in a chair; and the kids tried to cheer me up. Jack had long since hired me extra staff to help. I was there in reality but not in spirit. Jack didn’t argue with me about going to work. He felt it was better that I was with someone all day. My spirits became top priority to him since he couldn’t help me medically. He knew my years of teaching would kick in and I would be able to control my feelings in front of the children. It was difficult but I did the best I could. A few parents called me at home later that night to see if I was ok and if there was anything they could do. It was a warming feeling to have them reach out to me like that. I’ll never forget it.
My adult classes were equally concerned. I was never able to hide anything from them. We had been together as a class for over ten years and felt mostly like friends. We were in fact friends and it killed me to see the concern in their eyes. One student I had was Anne. At the time she was 97 years old. A very well educated and worldly woman we became instant friends ten years earlier when we met. She had just lost her husband then and me my mother. We shared the process of grief together.
A good painter Anne was never afraid to try something new. She did this with every aspect of her life and was an inspiration to all who knew her. She became the unspoken “Chairman of the Board” for our class. In the past I would spend time asking her for advice on anything from being a wife to being a mother. She always had a good head for such things and would make complicated situations seem simple. She also loved me dearly as I did her and people often thought we were mother and daughter.
I tried to down play the situation about my health to Anne. Her love for me was so strong that something as serious as this would upset her. Given her age, I didn’t want her to worry. Although I was able to keep some things from her; such as my morning and nightly rituals, I couldn’t hide the fact that I was in physical pain. Every day I would put a hand on her shoulder and try to reassure her that I was going to be ok.
Nancy was another student I had. Although 15 years my senior we are more like contemporaries. We had a wonderful relationship. I could laugh with Nancy like best girlfriends. She also being concerned kept going on line for me and printing out any information she could on joint diseases. All my adult students were most helpful. They even set up the classes and let me just sit if I had difficulty walking. They were the most understanding class any teacher could ask for. Once again it was a look in the face of mankind.
On Tuesday I had an appointment with the doctor that had left me stranded. My first question was obvious. Trying not to show my anger I told him all that we had been through. He said he had told his secretary to call me in some Darvocet. But she never did. He still didn’t show empathy to the situation only a defensive attitude. I then said to him that I didn’t think I had rheumatoid arthritis, that I have been doing some research and I wanted him to test me for lupus. I don’t think he liked the fact that I questioned his diagnosis. He said the test was very expensive and why don’t we start with x-rays. I was defeated. Without his ok, I couldn’t get the test.
When I got home I called a friend with MS. Telling him about all that I have been through I asked him if he knew of any organization that I might turn to for financial aid so I could get the test. He told me about an insurance person he felt might help. It was the most important phone call I made. Within a week I had better insurance.
I couldn’t believe how easy it was. But to do it required a balancing act. Jack was now old enough for SSI and went that route, Lex got picked up by her father, (my x-husband).The final outcome was that I was spending $500 less per month and was now fully covered. I immediately called the doctor and demanded the test for Lupus as well as my medical records. Making an appointment with a new rheumatologist at Brigham and Women’s I felt my first real sense of control of my health and future.
A few months later, it was all over the news, that the insurance company I had belonged to was involved in a large class action suit. The suit stated over charges and little coverage. I was too overwhelmed with the present situation to get involved.
Summer hit again with vengeance. I found the heat to be unbearable for me even when everyone else was ok. For some reason my body temperature would sky rocket and I couldn’t stop it. Having had a partial hysterectomy at 41 I was certain it wasn’t hot flashes yet because I still had my ovaries. Besides I didn’t happen unless I was at work, which is where I exalted the most energy. I believe part of it was also nerves. It was embarrassing to have the parents of my students seeing my physical down fall. To reassure them I had to tell them what was happening to me. And that I would soon be seeing a new doctor.
Although I had my bad days I was beginning to have good ones as well. Dressing became easier. Sometimes I had the strength to be able to pick up a dish. Washing dishes became oddly comforting. The warm water on my hands was relaxing. But usually on my good days I would over do it and the next day would be bad again. Being an active person by nature, it was hard for me to find a balance.
Before I became ill, I used to bring Jack his coffee every morning; placing it by the bed its aroma was always the first thing that woke him. It was a ritual we had done for ten years. For the past year I was unable to do this being that the coffee pot was down stairs in the kitchen. One night at 3am frustrated and determined I decided I could do it if I put my mind to it. Carefully and quietly making my way to the stairs I began my slow decent, one step at a time. We have 14 stairs in our house. Half way down I realized I was in trouble. The strength in my legs left me. My feet became lead weights. With no way up and no way down I became frightened. I didn’t know what to do. I wanted to sit but that was impossible. I knew in ten minutes my legs were going to give way and I would fall. Although I was perfectly quiet, Jack somehow knew I was in trouble. Calling out in the night he shouted, “DEBRA, WHERE ARE YOU!”
“I’m on the stairs”, I called back, and “I can’t get down.”
Running to my aide he scolded me as he helped be back up and to the den. Sitting there next to me in his nakedness he told me he had been dreaming. When he called to me in the midst of his dream I had been missing. If he hadn’t had a nightmare he never would have heard me. The whole situation to this day makes me pause and reflect. That night he brought the coffee pot upstairs.
When summer arrived JM came to take Lex’s place as a teacher in our summer camp. His mother was Canadian and named him Jean Marc everyone called him JM. Lex was still angry and decided to not come home. I began to realize that it wasn’t just anger; it was difficult for her to see me this way. Having had to watch a mother die of breast cancer when I was young I understood what she was feeling. As a mother who was now sick I didn’t want it to cause her such anguish. JM had been a friend of Lex’s since childhood. He was a student of ours for the same amount of time. He was more than that. To me he was a son. He always did what a son should do. Over the years, when my grass needed cutting he would show up and do it. If he was at our house on trash night he took it out for us. When he was heart sick over a girl it was me he came to for advice. An intellectual he was often a contributor to the art discussions that Jack and I shared.
He had a wonderful mother and father; and I will forever be grateful to them for sharing him with us. It takes a very secure relationship with your child to be able to do this without jealousies. It was yet another testimony to their parenting skills.
JM was an amazing person. He could draw, paint, act, dance, and he scored real high in school. Not to mention he could build or put together anything he set his mind on. Freshman year of high school he put a floor in our attic. Before that there hadn’t been one. Balancing on the rafters with a nail gun, he was in his element. He was a boy with an engineer’s mind and an artist’s heart. I called him my renaissance man. His biggest problem was that he did everything so well he was unsure which direction to take for college. He ended up going to the University of British Columbia in Vancouver, Canada; 4000 miles away. I was heartbroken.
That summer, as with Lex, he was finishing his sophomore year. We kept in touch through email the whole while he was away. He understood what my needs were. It killed me to see the concern on his face when he would come home and visit on brake. I would do my best to reassure him. I would tell him what my next plan of action was concerning my health and he would amaze me by having already done the research on my behalf. Adding that to the school work he had been doing, it was then I realized he loved me as much as I did him. It was another wonderful moment in my life stirred into the soup of my despair.
The first thing he did when he got home was make sure my entire house was safe. He installed more railings and raised more seats for me. He even spent an entire day building a platform for my garden rocker so that I could sit. He knew the garden was the most important place in the house for me. He knew it was where my spirit lived. He worked it for me all summer weeding and cutting the lawn. Watching him made me want to cry. I wanted to be down on my knees with him in the dirt. It was tuff for me to sit there and not be able to work the soil.