The house became a quiet place. No longer were we greeted at the door with an excitedly waging tale. It was difficult to get used too. Suzie concerned for our feeling mostly kept Mac in her room. With Linus gone and Lex having to go back to school I assumed it would be a little easier; my responsibilities and stress would subside. But instead my condition got worse. It had been three weeks since I first felt the pain in my backside and now it was all over. Both my hands and my feet were swollen to unbelievable sizes. I had resolved to wearing slippers all the time And sitting whenever I could. I had lost the palms of my hands. They became two balls at the ends of my arms. The toughest part was the pain and weakness. With every beat of my heart I throbbed. I assumed the pain was from the swelling but the weakness I didn’t understand. Everything was happening so fast. It had only been a few weeks since my first symptom.
Work was almost impossible. I found myself teaching more and more from a chair. With the lack of proper health care, I felt helpless. For those three weeks, for the first time in twenty-five years, my painting stopped. The odd thing was that by mid day the symptoms seemed to subside a little. I was able to keep the worst of it from all that knew me including Jack, because I always got up early. He was too involved trying to keep everyone happy in the midst of his sadness. Although I certainly was not myself; I could function. Meanwhile the lull in the stress of the house began to subside. And the tension began to grow once more. One morning I asked Suzie to help me with my shoes. “What the hell is wrong with you,” she said in what sounded like a frustrated voice. I wanted to cry. The last thing I needed was feeling I couldn’t get help without criticism. Eventually Jack picked up on the seriousness of what was happening to me. He immediately became very concerned. He kept telling me I should see a doctor. I was insisting I was ok making up one excuse after another as to what was happening to me. I was still feeling it was my own fault and I didn’t want to admit that to him. I told little to Lex at first. With her in Connecticut, I didn’t want to worry her. With all she was feeling, I didn’t want to add to her burden. It was my Aunt Tara who stepped up to the plate. Behind my back she made an appointment with a podiatrist and paid for it in full. I will never forget that simple act of kindness. When I needed a mother; she was there; despite the fact that I was now 45.
By the time I went to the podiatrist a week later my elbows, shoulders, ankles, knees, and hips were involved. Sleeping became impossible. Every pressure point and nerve ending on my body was cranked on high.
The morning the appointment finally arrived I was having a particularly bad day. To walk I needed to use an old cane we had in the house that belonged to my deceased father-in-law. Sitting in the low chairs of the office I suffered in silence. When it was my turn to be examined it took me several minutes to stand. I was embarrassed in this cramped office with all the eyes on me. The doctor stood in the doorway and watched me struggle to my feet and compose myself. As I made my way slowly to the examining room he acted concerned and asked me how long I had been in this condition. When I told him three weeks he looked shocked without hesitation he said, “You need to see a rheumatologist I believe you may have a systemic joint disease.” “This can’t be ignored.” The room began to spin for me. Grabbing the door jam I tried to steady myself. Disease, what does he mean Disease? The realizations of my denial hit me like a wave cresting the top of my head. My heart started to beat faster and breathing became difficult.
After checking the warts on my feet he said he didn’t think he should touch them. He was very concerned for me and spoke to me slowly as he looked me directly in the eye. It was as if we didn’t share the same language. Why is he acting this way, was all that I allowed to go through my head. In that same slow and concerned voice he said he was afraid if he treated my warts there was a chance of possible infection because of my edema. He called a local rheumatologist and made me an appointment. Because he was so booked, the rheumatologist couldn’t see me for another week.
By the time that day arrived I was beside myself. Alone with my thoughts I wondered what it all meant. I was afraid to look anything up on line the that week. I wasn’t ready for the information. In the mornings I could no longer do simple daily routines. My husband Jack now washed and dressed me. Opening a jar or turning a doorknob became an impossible task. My motor skills reverted to a toddler.
Night time was the worst. It felt like all the demons came out at night. It became that the setting sun an impending night fall was like a bell tolling, waiting for my torturer to appear. At eleven o’clock I would begin to get ready for bed. I waited until then so I could fool myself into thinking the night was shorter. Eventually that time would be pushed back to twelve or 1am depending on how tired Jack was. Many nights he would wait up with me. We never talked about it. He never complained but I knew he was exhausted. The more I became dependent on him, the more I feared what would happen to me if I were to lose him. As it was I could no longer sleep with him, it would hurt too much to do so. Not being able to take it any longer Suzie moved out and I took over her old room. The bed in there also had a better mattress.
This was the room that was John Henry’s bedroom when Jack and I got married. John Henry was a research scientist for MIT. A brilliant man he was widely respected in his field. He was also Jack’s father. Then it was filled with books and memorabilia that one hangs on to when they are in their aging years. It had some of his periodicals and research journals as well as his writings when he was just a boy. Having adopted Jack at a late age in his life, had he still been alive at that time he would have been 105. Among his things I had found a note he had written to his uncle at the age of eight. Thanking him for his first microscope. Having won the John Roberts Arms medal for his research in collagen, I often wondered if his uncle had seen in him the potential of what he would later become.
A year after he died it became Lex’s room. It was where she and Linus slept; always in the same bed. When it became Lex’s room it was filled with all the things that kids love. Favorite stuffed animals and wishing dust. It was the first time a little girl was in the house and the room took on a different life. As she grew and became a teenager always a creative child, I let her cover the walls with magazine cut outs of stars. At first it started out to be the usual idol photos but then it grew to be something more. She began to cut out photos of anyone that struck her fancy; pretty girls, adorable children and of course cute boys. They were all pictures of people interacting in some sort of movement. As she spent hours cutting and pasting this world she was creating, Linus would sit with her on her bed and cock his head in approval. It took her three years to complete this wonderful work of art; she would collage them together in an interacting visual symphony on her wall. As a child she never liked being alone. I think she was comforted by this illustrated display of a random crowd. By the time she left for college there were thousands of pairs of eyes staring at her. By that time they had become her friends and bade her farewell. She no longer needed them.
Shortly after she moved out it became Suzie’s room. I hated to take down Lex’s shrine to her imaginary friends but I had no choice. As crazy as it looked it was sad for me to see them go. I think it was equally sad for Lex.
In less than a year from Suzie’s arrival it became my room. Isolated and lonely I never thought I would wish to see those thousands pairs of eyes again. That room had a rich history. It was filled for so many years with laughing and giggling with an occasional bark. When it became my room, late at night there were times I would swear I could feel the gentle paw of a puppy hug. Catching in my throat would be the words “good night Linus, I miss you too.”
Even with Jack helping me it would take us approximately 15 to 20 minutes to get me ready for bed and remove my clothes. Putting my pajamas on was like trying to dress a baby the size of a full grown woman. A simple sock was a painstaking endeavor that would bring tears to my eyes. I had to give up certain things as well. I could no longer wear a night gown because I would get tangled in them. For a cover I could only have a sheet. A blanket was too heavy for me to lift caging me like a mouse in a trap. By the time the entire ordeal was over I was as exhausted as if I had just run a marathon. Jack wasn’t far behind me. We learned quickly what worked and what didn’t.
Positioning each of my five pillows to relieve as many pressure points as possible took us awhile to learn. When we realized that a travel pillow around my neck as I lay on top of a curved pillow suppressed some of the pain in my shoulder we rejoiced together. It was one of our all too few triumphs during those early weeks. Once I was settled Jack would sit in a chair next to my bed until I fell asleep. We never talked at these times. We secretly both knew we were too vulnerable to discuss it. What it all meant… what the future would be. Alone in my thoughts I felt guilt. First he had to take care of his elderly father, then my dying mother, and now me. This could not be what this wonderful and talented man’s life was meant to be. Why would God be so cruel to him? Alone in his thoughts, he silently prayed that he would not lose me.
My sleep those first weeks, if you want to call it that would last for 1 -1/2 hours if I was lucky. When my luck ran out it would be twenty minutes. My REM sleep ceased at this point and wouldn’t return for two years. The deepest I could go was to dose. Boogie sensed that I was ill and from that time on, she slept at the head of my bed. She was also enjoying the fact that she was now an only child. We were like two cats taking a nap together except mine was filled with anguish. When I did wake I found myself alone and scarred and up against a corner of the wall. I was trapped in my bed and could no longer ignore my demons. After a few nights like that I began sleeping at the foot of the bed instead. In that position I could look out the window and still feel a part of the world.
After a short time of lying down I couldn’t take the aching any longer. It felt as if every joint in my body was trying to hold itself afloat in mid air on its own. My body couldn’t relax no matter how hard I tried. In simple terms I was being tormented.
Through trial and error, I learned to sit up alone. I had to use the only joints I had left that still worked with minimum pain. It was my hips. I would lift my legs as high as I could and with the weight of my body careful not to bend anything I would lower them down onto the bed. If I kept my body ridged this would put me in a sitting position in one awkward but instant motion; the covers having been removed with my feet. Next to my bed was a heavy treadmill. Grabbing on to it I could lift myself to a standing position. That first step onto the floor sent radiating pain through my legs. It would be at this time I would begin my nightly ritual of walking the hall. I couldn’t lift my feet, so my walking was more like shuffling. Twenty minutes walking. Twenty minutes sitting in a raised chair. If I was lucky I dosed when I sat.
When the day finally arrived for me to see the rheumatologist, I felt hopeful. Someone would finally help me escape from this hell I was in. After waiting in his office for over an hour in chairs that were too low to sit; I realized how wrong I was. His office was outdated. Faded posters of Monet’s Lilies hung in cheap metal frames. The color of the room was a pasty array of dusty mauve and mint greens. When I entered the examining room, it too looked like a throwback to another time with antiquated scales and examining tables that still used a crank to adjust. I had hoped his medicine unlike his office had kept more with the current times.
He was an arrogant man of about fifty, tall and thin with stark white hair and an air of distraction on his face. He droned on for an hour asking me questions in a monotone voice not showing any form of feeling. He pressed my joints in certain places and after seeing the nodules growing on my fingers and elbows he clinically diagnosed me with Rheumatoid Arthritis.
He said it was systemic. He called it an autoimmune disease. All I heard was “cripple”. In my head I wondered if I would ever be able to paint again. I thought of Renoir and the difficulty he had with this disease. And although I have never been fond of his work, it was all I had to hold on to. I was immediately put on prednisone, vitamins and a very strong prescription Advil. He also put me in arm braces to protect my wrists. He asked to see me in another week.
When I went back to him I was worse. The arrogant questions persisted. He kept asking me to rate my pain on a scale of one to ten. With it elevating every time I saw him this was a difficult task for me. If the previous week was ten then the next week was a twelve. He became impatient with me and would role his eyes. I didn’t fit neatly in the “little box” of rules he expected of his patients. For some reason he couldn’t accept the concept that a patient could get worse with time not better. All he would do is change my meds again and ask to see me in another week. Every time I left his office I felt beaten and worse than when I had arrived. This scenario went on for months.
He also didn’t like the fact that Jack sat in on my appointments. With all the jargon I was hearing from this doctor I no longer trusted my ears alone. Because of my heightened state of pain all I heard was “blagh, blaugh, blaugh”. Not unlike when I talk to an auto mechanic. Jack also being who he was would never consider me going through this without him. He knew I was only hearing half of what was being said. My brain kept shutting down when it could no longer accept the information. On one particular day when Jack couldn’t find a parking space in the lot, he had to wait outside. The doctor noticing that he wasn’t there asked me in a condescending voice, where my bodyguard was. I felt like an idiot. He infuriated me week after week, until one day through my own snide remake I reminded him that he works for me. Our doctor patient relationship went from bad to worse. I