wanted to change doctors but I couldn’t. He was the only rheumatologist in a twenty mile radius that was taking patients. The next closest place would be to go into Boston. Although I wanted to do this right from the start if I couldn’t afford it; with our tight schedule at work, that would mean canceling some classes. To me that was a last resort.
He changed my dosage of meds several times. He took me off the Advil, put me on Plaquenal and once again increased the Prednisone. Prednisone is a steroid that has many side effects, including kidney damage. I found when I was taking 20mg twice a day it caused me to bruise terribly. But worse than that it made me weepy; an aspect of my personality I was not used to. The weepiness was never for my own predicament. I often cried for others. Sometimes it would be as obvious as the morning news when they were announcing the names of soldiers killed in the war or as silly as a sappy TV commercial. Working with the children caught me emotionally by surprise as well. If a student was doing especially well with their work and I realized they were advancing, I would have to leave the room. My pride for them would well up in my eyes. My empathy “switch” was stuck in the on position and I couldn’t adjust it.
The new drug he gave me, Plaquinel didn’t seem to have an effect. When I inquired about it he said it would take several months to get into my body. I had to be patient.
Patients…fortunately it was the one aspect of my personality I was blessed with. For the past twenty odd years I have worked with children it is the first thing a new parent always commented on; my patience with allowing children to be who they truly are. I knew in my heart I was going to have to call on this facet of my personality as much as I could.
The children became my only source of relief. Watching their jovial antics and their lust for life kept me grounded. My studio class room had always been a sanctioned place to me. We would relate funny stories about our day and they would tell me about their hopes of their day’s creations. As if I was “Dorothy” in munchkin land I felt protected. Children never judged; they trust that you are in control. That trust gave me a confidence that I was. It was a positive energy that worked well for everyone. At that moment it was the best place I could be.
My mornings were difficult and filled with a balance of frustration and
determination. The afternoons brought me eases of the symptoms but never completely. My nights were hell. That is when all my emotional weakness would emerge. I cried a lot; most of the time it was for the predicament I was putting Jack through. I had resolved to the fact that I was going to live a life of torture. I just didn’t want to put him through it. That is why I never woke him at night when I was hurting. He suddenly was doing all the household things I so easily did, adding to all the things he had to do to take care of me.
During the day I began to develop a stubbornness I didn’t realize I had. The one thing I refused to give up was teaching. I was afraid to. I felt that if I gave in to this completely it would consume me, and I would never get back. The kids became helpful. If I needed something picked up off the floor several would come to my rescue at once. They were wonderful. They allowed me to be who I was now. It brought out the best in them. It proves to me that all children are born with an inherent instinct to be good and caring. It made me wonder what happens to some of them when they grow up and start wars. Because my classes consisted of a mixed age group, suddenly the older ones were helping the younger ones. The teenagers began to arrive early for their classes. Jumping in, they would sometimes sit with the younger kids and give them one on one attention. As much as I had felt we were always a community there, never had it shown itself more evident than during those years. They rallied together bringing out the best of humanity. These were the things I thought about at night and took comfort in them.
My Aunt Tara called me every day. She was very supportive and always wanted to help me. One day she brought me a walker. She said it was only for at night. She didn’t want me walking the hall unsupported near the stairs. I accepted it with a heavy heart. Now at night my steps had a different sound. It was familiar. It was what I heard when John Henry, would walk with his cane to the bathroom at night many years ago. It would wake me then and I would listen for the even foot falls of someone with an extra leg, always waiting for the possibility of having to rescue him. It was a feeling of always being on alert. I tried to be quiet so Jack didn’t have to experience that.
I learned to supply myself with the necessities I needed at night. I had a heating pillow I used on my shoulders. There was a microwave in my room that I used to prepare it three times in the course of the night. When I could no longer lie down I would walk the hall. When I could no longer walk I would sit with the walker and stack it with pillows to try and rest my head on it. When even that didn’t work and I could no longer sit, I did the most incredible thing. I learned to sleep standing supported between my walker and the door jam. A whimper was always just rising to the top of my throat. Yet I would never let it out. I had approximately ten to fifteen minutes before my body would be too heavy and I would falter. I never could go back to bed. That was something I couldn’t do without the help of Jack. Once I was up, I was up. In total I “slept”, if I was lucky, three hours a night. It was an issue that was concerning everyone; an issue that only made my healing process worse. It was late at night, during this ritual, that I first started thinking about adversity and the human spirit. I had to look as deep as I could to find mine. It was like rummaging through a cereal box as a child only to pull up a cheap plastic toy.
Fortunately, along with patience I was also blessed with the ability to be content with being alone. Isolated in my own thoughts was often my playground as a child. It was this independence that attracted Jack to me. It was a trait that he also possessed. It was this confident aspect of our personalities that made our marriage work. And now it was this that I was calling on to get me through.
I kept thinking of the phrase “Everyone dies alone”. Although I knew I wasn’t dying, I felt it could also be stated “Everyone suffers alone.” My thoughts went to my mother many times. A part of me ached that she was no longer there to comfort me. Another part of me was glad she hadn’t lived to see this. I thought to myself, “Only I can make this work.” It would be my decision if I give into this or not. I knew that my physical mobility’s were limited and there was not much I could do about that. What I did have was full control over was my spirit; a part of the soul that I witnessed in my mother when she was faced with such personal torment. It was her final lesson to me in a class I didn’t realize I was attending. All things happen for a reason and now I knew why.
These thoughts made me stronger. I had a choice. I could think of things such as this and feel better about it or I could be swallowed up by my own despair. Nothing could take my will to beat this if I chose to fight. It brought back to the days when I was lifting weights. I learned then that the mind was an incredible tool for difficulty. If you think you can do something, than you can. In that case it was the amount that I would lift. In this case it was the amount of movement I could make as well as keeping defeated thoughts out of my mind. I was also practical. I knew that my movements needed help. Arthritic aids for lack of a better word would help me lead a semi normal life again. I craved my independence back. The next day, I told Jack that I needed to handicap the house and to buy some tools to help me.
We purchased all sorts of gadgets. Ones that opened jars, another that helped me put on my socks, rails in the bathroom, a raised toilet seat, an aide to help me buckle my seat belt, (as a passenger; I could no longer drive) shoelaces that were elastic, a grabber to pick things up off the floor, and my all time favorite to this day, a back scratcher that Lex won for me at the Willows Amusement Park.
I began trying to dress myself in the morning. I didn’t shower myself I knew better; I waited for Jack to help me with that at night. My restroom rituals were similar. In the mornings when the pain was at its worst he had to help me with that as well. With the meds I was on, my digestive system was also out of whack.
While Jack was asleep at around 5am in what still felt like night I would start. I learned quickly that there had to be a system to dressing or I couldn’t do it. First, having laid my clothes out the night before I would use my grabber to pick them up and separate them on the bed. The grabber became an awkward extension of my arm. I bought some bras that clasped in the front. I no longer had the ability of putting my arms behind my back or the strength to clasp them in front and then rotate it. I was shocked that my arms could no longer reach behind me. It is difficult to find front clasping bras that have support, but eventually I did. To put the new bras on, I had to bend at the waist with my arms in the holes of the straps. Slowly standing upright I could easily get it to my shoulders. Unfortunately I would sometimes get stuck in this position and looked like a prisoner shackled in the gallows. It would take me another ten to fifteen minutes to untangle myself. If I couldn’t I had to wake Jack who would look up at me and laugh at the sight. It made me laugh as well even in the midst of it all. Laughter was beginning to be the first drug that was working in my favor. My underwear was just as difficult. I had to buy sizes that were too big for me. Placing them on the floor with my grabber I would use the same tool to carefully try and separate the leg holes on the floor just below my feet. Stepping into them gingerly I would then use the grabber to slowly raise one side to hopefully my knees. One day I noticed that while doing this my face made contorted gestures. Usually my tongue was sticking out in determination. That too, made me laugh. I could never do this task in one try; it usually took about four or five. The tricky part was retrieving the other side without then losing the first and having to start all over again. Next were my shorts. That was done in the same fashion as my underwear. My shoes were easy if my feet weren’t swollen. But that was rare. Jack usually had to help me with those. Until I found the elastic ties he had to tie them too. The funniest was my shirt. Being summer I wore t-shirts. As with my bra I couldn’t help getting tangled in it. I would then shuffle into Jack’s room again looking like a mommy trying to unravel from my confines with only my eyes showing. He would tell me every morning to just let him dress me. Every morning I would say no I want to do it myself. I actually thought I was doing it myself. The reality was that I never could. I always needed his help. Somehow though it felt like independence for me. An emotion I grabbed on to no matter how small the victory.
Lex was home with us that first summer. We argued a lot which was very out of character for our relationship. Before that parents would ask me what was my secret of having such a good relationship with her. I usually told them it was because she was naturally a good kid. At this time though, most of our arguments were about her staying with her boyfriend. Who now was not able to function without her? As a person that had little choice of dependency, it was a character flaw in him I couldn’t shake. I kept thinking about the four miscarriages I had to have her. I thought about the nine months I spent in bed during my pregnancy to not lose her. And now I was losing her to this person that she had to mother. I expected better things for her in life. As a mother I insisted on it. As a mother I also saw the stress on her face for the responsibility. It was for this reason I never asked anything of her in the form of help. I was afraid if she realized all she was doing for him and not for me she would feel awful about herself. A poor self esteem is the last thing a parent wants for their child. And under the circumstances her self esteem will be what I was hoping would eventually get her out of the current situation she was in. I kept thinking how I had done the same thing when I was her age. The thought both comforted and scared me. I was hoping she had the strength to see she deserved more.
Despite my trying to keep the true scope of my illness from her; she did help me when she saw I needed it. She often took my arm when we were walking outside, as well as other things that I needed. She didn’t know about my night time rituals, at that point it wasn’t necessary. With her bedroom on the first floor it was easy. Eventually the stress between us was too much for both of us to take. September came and she went back to school. I wouldn’t see or talk to her again for almost a year.
As difficult as that was, when I look back on it now, it was probably for the best. I was too sick to have to deal with the arguing. Every time we argued I became more ill. It was as if the armies in my blood were confused and when I felt stress they fought harder and attacked me more. Ultimately we didn’t talk at all. That hurt more than any physical pain I had felt yet.
Sam, at the time, was keeping a low profile. With Suzie gone it became easier for him. I feel I failed him as a care giver. After all I was the one that needed care. That summer he graduated and moved out too.
I had been seeing the rheumatologist for a year now. The Plaquinel didn’t seem to be helping much. It was true that I had slight improvement. Some days were better than others. But when it was bad it was really bad.
One night I did the impossible. I tried to roll over in my sleep. The result was a snap coming from my right elbow. Having broken at least six bones in my life I knew the feeling. It was 3am and I struggled with the thought of waking Jack. I had to. It was too much for me to bear. With tears streaming down my face I went to him. I was amazed with the swiftness he wakened and was on his feet. “What’s wrong …what’s wrong,” was all he kept saying.
Through my sobs I told him “I think I broke my arm.”