He adjusted doorknobs to make it easier for me to turn them. He placed an extra step out the back door. Then he put a lock on our front door because he felt it was time we had one.
The best part about JM was his spirit and constant joking around. Whenever we were together we would laugh with humor befitting of children in middle school and were proud of it. It was funny to see others around us not joining in. We would look at each other and just laugh some more. It was that sense of camaraderie that I needed. It was better than any prescription.
The day finally arrived for me to go to BWH to see my new doctor. When we got there the receptionist was expecting me and the waiting room was empty. Among the regular seating were also some raised chairs. It was a warm and welcoming room that was already addressing my needs. I wasn’t there for more than five minutes when Dr. Shin came out to gather me himself.
He was a shy unassuming Asian man who on first talking you realized how smart he was. With his soft and concerning voice he made me feel at ease the minute we met. He was an intern. Because the BWH is a teaching hospital I had several resident doctors reviewing my case as well. The thought of that many minds concerned about me was comforting.
After our introduction he went straight to business. He told me he had received my test results but wanted to ask me some questions first. I was to answer them yes or no. The first one took me off guard. He asked, “How many miscarriages have you had?” This wasn’t a question of “if” I had but instead “how many”. In an instant the burden of fault I had carried for so many years lifted. I was not a bad mother unable to protect my children.
Then he began a list of words; hypoglycemia, low blood presser, sun rashes, red mask on the face, raynoids, hair lose, hysterectomy, there were eleven in all and I answered yes to each one. When he saw I had a daughter he seemed pleased and said, “Do you realize how special that is?”
My answer was a simple statement, “Everyday.”
He then put down the folder and paused. Looking at me with care in his eyes he faltered ever so slightly.
Taking the lead I said, “Its Lupus isn’t it.” It was a statement more than a question. Suddenly my entire life made sense.
He said the tests were positive. He also told me that in combination with the eleven questions there was no doubt. In reality he said it only required a yes answer to four of them. He seemed surprised that I hadn’t been tested for it before. I told him that I actually had been tested for it as a child when my insurance was better. Back then it always came back negative. Until I did the research on line I had no idea I could get a positive after all these years. When it became a possibility I insisted on the test with the other physician. He said, “That was smart; you were right.” Even though neither of us spoke it we both knew we were all thinking the same thing, “Why didn’t the first doctor see this right away?” After all he had my medical history and asked me most of the same questions. I looked over at Jack. I saw a look on his face that was both anger and concern. When our eyes met all we could think of was Effi.
Fifteen years ago, Effi was a friend of ours. She had Lupus. Over the course of the five years that we knew her we saw her struggles. Her difficulty standing, the obvious pain she was in. Until finally yellow from a malfunctioning kidney she couldn’t fight anymore. In a short time she was gone.
Afraid to ask, it took all the muster I had, “Am I going to die?” Without a definitive answer his reply was that there is a lot of new research and everyday more and more. People are living much longer and some into old age. It is hard to say what I was feeling. It was a wide variety of emotions. The first was the anger at the care I received from the original doctor. The arguments, the snide remarks, not to mention, the expense and torment I went through.
He let the information he just gave us sink in. Next he invited one of the residents into the room. He was an older man with a gentle face. With years of experience and compassion, he told me what to expect and our next course of action. I asked him if I would ever be myself again. I was grasping for any sense of hope. He couldn’t exactly answer that. He told me that it was all about controlling flares. In many ways it is similar to Rheumatoid Arthritis. Only with Lupus there is no joint damage. My thoughts went to my paintings. Jack and I sighed in unison. Unfortunately he said it can sometimes go to soft tissue. But with all the new advances we are better able to control it. He explained to me that the Plaquinel I had been taking is actually an anti malaria drug which is also used for Lupus and arthritis; but since it wasn’t working that well that we would back it up with Methotrexate.
Methotrexate had been around for many years and is a form of chemotherapy used to fight cancer. Unfortunately it also takes a few months to kick in. He said we will still use the prednisone to bridge it but we really needed to get me off the steroids. The ride home from Boston took forty minutes. After the first ten, I turned to Jack and said, “Let me see if I have this right. The arthritis would have crippled me but not kill me, and the Lupus could kill me but not cripple me.”
“I believe that’s right,” he said.
The rest of the way home we road in silence; when we arrived JM was waiting for us at the door. We added the new medicine to my growing arsenal of drugs.
I went on line to better understand what it all meant. The first thing I did was look up the meanings to all the jargon I had just heard; letters and numbers relating to tests. The first was ANA (antinuclear antibody). This is a representation of the substance against the cell nucleus. I remembered from high school that the nucleus is the control center of the cell. ANA can damage or destroy good cells. In other words my body was attacking itself. It is kind of like having the armies of white blood cells in your body getting confused. The same ones that help you fight infection or heal a cut. Now imagine them looking for something to fight and thinking that your good cells are spies.
ANA is a tricky test. It is based on how many times the lab has to dilute your blood in order not to find ANA. Because the dilution processes; the test fluid is doubled every time. The titer number refers to this process. 1:80 means one divided by eighty. Anything that is 1:80 or lower is a negative test. 1:160 doesn’t necessarily mean a huge jump. It is in fact only one jump. It is because of this and other factors that a test alone doesn’t diagnose this disease. A positive ANA is present for many other diseases such as Arthritis and MS as well. It is because of this that they also look under a microscope for a pattern when the antibodies are attacking the nucleus. There are four different types. For lupus there is a rim pattern shown strongly around the outer edge. This is the most specific for detecting Lupus. In addition he also looks to see which antigen is causing the positive ANA. Antibodies to DNA (the protein that makes up the bodies genetic code) are found primarily in Lupus SLE. What’s more antibodies Sm are originated almost exclusively in lupus patients. Sm is the name given by the doctor who discovered the test. After digesting all this information I tried to not think about it too much. Especially since the prickly sensation at my joints that felt like hundreds of little people consuming me; in fact was.
The best thing about hiring JM to work the summer camp classes was his strength. Not only could he drive the large van but he also lugged all the gear. He even included lifting me in and out of the car as part of his job description. From that day forward it also became his number one priority to make me laugh. His first test with this was loading me into the van. The van was a fifteen passenger. The running boards were high off the ground. He would help me by placing my arm on the arm pull and my left foot up on the step. To pull me up he had to grab me by the waist band on the back of my shorts and lift as I was pulling as best as I could. Imagine pulling a sack of sand out of the ocean. It was like that only not as wet. It was a trial and error effort and after the first few times of laughing and cringing, we had it down. By the third time he said, “I feel our relationship has risen to new heights!” Unfortunately I was half way in the uplift position when he said it. Laughing, I immediately fell backwards into his awkwardly waiting arms like a clumsy cannon ball dive into a pool. After a few weeks of that, lifting my leg to the running board became impossible. Never wanting to experience that again I thought of a great idea. I bought a small Rubber Maid step stool and attached Linus’s old leash to a corner of one of its legs. When JM saw me leaving the house one morning with a cane in one hand and dragging this contraption with the other he said, “What the hell is that?”
I smiled with a triumphant grin, “It’s my dog!” So excited to show him, I walked proudly to the van. Not proud like a peacock, more like Quasimodo off to work. Stubbornly insisting on doing it myself with one awkward move I dumped myself into the front seat. “Wait, “I said you need to see the best part.” I then pulled on the leash and lifted the whole thing into the car. “That is genius!” he said. Smiling I looked to Jack who was next to me. His proud grin made me to want more.
The Salem Willows is an amusement park on the water. A throw back from the late 19th century it was once a place for summer fun and entertainment. The old photographs displayed there showed woman in finely dressed floor length dresses and parasols strolling along the promenade. Today it isn’t quite so formal. The promenade (or line, as we called it) has arcades, fast food restaurants, miniature golf, and sitting like a dinosaur on the end is one of the original ice cream and popcorn establishments, HOBBS’. The buildings are mostly original. Adjust your easel at just the right angle in front of Hobbs’ and you can paint a picture so close to what it used to be that one could question the date of the paintings origin.
Across from the line is the harbor. Between the line and the harbor is a grassy knoll housing a concert shell and gazebos. That is the spot we set up camp. We choose this area under the gazebos for several reasons. The first being if it rains. There is nothing worse than painting outside and having it start to pour, especially when you’re with children. The second reason is the options. From that vantage point a painter has many choices of scenery, a seascape, a landscape or buildings. It is also handy that there are restrooms with running water there as well.
Our enrollment consisted of ten children ages nine and up plus three teachers. Jack, JM, and I fill those criteria. Sometimes my day time class would show up adding three or four more adults. Although it is called a camp, it was certainly not “camping”. We didn’t set up tents and fish for lunch. No this was a day came for art. It was a “plaine aire” class for painting landscapes. We talk about what it is like painting outside and the issues that could arise, bugs, changing light, and more annoying than that, people coming up to you and telling you about a relative they have that paints. Always the business woman, I tried to coach them at how to seal the deal and possibly sell their work. This has happened more than once with the children and they were thrilled every time. It was their validation as artists.
I would do a demonstration for fifteen minutes every morning. The students would then disperse to their chosen spots to paint. Then the teachers roamed from student to student with help and advice. I found the kids would be less whinny about their work in this type of setting. Maybe it was because they were in public.
At the end of the painting time JM would pack up the van and get it ready for the next day. Twenty minutes before we lefty we let them play games in the arcade. At the end of the week we have a critique and pizza party. After dropping the kids off to their parents JM and I would go back to the studio and teach the afternoon classes. Jack taught the evening ones. The whole program works very well and is extremely popular. Years after year we would work out any kinks and revise it for the next. Without any advertising we are filled every week in the summer.
As my illness progressed throughout the school year, the impending summer camp now became a concern for me. No longer would I have the morning or the even ground of the