studio to work out the kinks. The children would have to see me at my worst. Not to mention that some of them had never met me. I didn’t have a choice. As always honesty proved to be best, especially with children. On the first day of every week before we left I would sit them down and without going into too much detail I would tell them why I walked the way I do and not to worry it was only temporary until my medicine kicked in and my joints “got oiled.” By the end of my speech I always finished with the happy note, “Hey, but we can park in the handicap zone!” That usually brought cheers and laughter. By the end of the week children being who they are; they were either helping me or wanting to use my cane.
Of course the children loved JM. He was a big goof ball that loved to joke around with them. He could even make the visually difficult fact that he had to lift me in and out of a chair comical. That of course made some of them want to try it; and of course that is where I drew the line. The stairs to the gazebos were the most difficult, even on a good day. As part of the original structures of the park; only one was handicapped. All the restrooms however were. The gazebos were approximately spaced anywhere from fifteen to twenty-five feet apart. Climbing the stairs and walking that distance with a cane on uneven ground for me made Jack and JM very nervous. It was a comfort to know that they always had an eye on me. Being who I was, I insisted I do as much as I could myself. My knees were my worst problem. Every time I sat or rose it would feel as if someone were stabbing hundreds of needles in my knee caps. Sometimes it would be so bad that it would make me fall back into my seat. It is at that point JM, with both arms under my armpits, would lift me to take the pressure off. To someone who didn’t know the situation we must have looked like we were always in an embrace. Once we were standing he would always ask me if I wanted to dance. Unfortunately every twenty minutes we had to perform this ritual. He never once showed irritation about it or complained. When he saw that it made me feel bad he would just crack another joke. A few times the pain would be so bad that out of view from the children I would cry. At those times he would sit quietly holding my hand and let me do it.
Most of the summer went on like this, with very little change. There was one day however that the pain grabbed a hold of me and no matter how much coxing from JM, I couldn’t shake it. Jack kept insisting I stay home, but my sense of responsibility was too overwhelming. The other issue that day was that I couldn’t use my cane. It wasn’t sturdy enough to hold me. I needed both my arms for support that day. It was a difficult decision, but I had to do it; I took my walker.
That was the part that was most difficult for me. When we arrived at the studio I stayed in the car while Jack and JM loaded up the gear and kids. When we got to the park JM knew how I was feeling and walked with me slowly up the hill until I was settled in a chair under a gazebo. As much as I wanted to cry that day I couldn’t. I was too much in view of the children. Looking back on it now, it was best that I was there. What would I have done if I wasn’t; stay at home isolated and sobbing? I never allowed that to be an option. When I think back on that summer and I think of the difficult times; that day is the first one that comes to mind.
Jack sent me home after the camp. I was reluctant because without splitting the afternoon classes, that meant he was working 9am to 9pm. I knew this would tire him out. He had so many things he had to do for me now that the last thing I wanted was to give him more. He was firm about it and suddenly I didn’t have a choice. Helping me into bed he kissed me on the forehead and said he was a phone call away if I needed him. Smiling back at him I said, “Don’t worry, I’ll be ok.” Lying in my bed looking out the window, I watched as he drove away. Within ten minutes a slow panic set in. I realized I was trapped beneath my sheet. Somehow we had forgotten to arrange them so that I could get out. One side was inadvertently tucked under my body. Without the ability to roll over or even turn slightly, I felt as Gulliver must have when he woke up tied to the ground with all the “little people” around him. I called out to Boogie. I knew she couldn’t help me escape I just wanted the company. When she didn’t respond I wasn’t concerned. She often camped out in the cellar on hot summer days and then someone would accidently close the door and trap her as well. I didn’t blame her for wanting to be in the cellar that day it was cool down there. I had learned early on with this disease how to remove my covers with my feet. That day however it was impossible. My knees were in too much pain. All I could do was lie there and take it. I wondered how long it would take before I went “inside”. Trapped in my bed I started thinking about all I have been through. A thing I only allowed myself to do if I knew it was useless to stop it. I wanted to cry but I had no more tears left. A strange peace came over me I had never felt before. It was internal yet all around me and I feared it was the first sign of giving up. At least if I were to cry it would be a form of resistance. I told myself, “Maybe it was because I was tired.”
Looking at the trees across the street I watched as the patterns of familiar faces in the leaves blew in the gentle breeze. It was then that I realized what it was; this feeling was spiritual. The faces in the leaves were comical and eased my loneliness. For months now the lights and darks among the leaves blowing in the wind visually transported me to different places; a setting that was not filled with pain and anguish. They were virtual paintings in my mind. Sometimes I saw faces while other times I saw gestures of figures interacting. It was an extension to a game I played as a child. Many people have done this as kids. It is the game where you try and find animals in the clouds. I was surprised by how easy it was to let my imagination take over. It was hypnotic and when I played this game time as we knew it would go on fast forward. The same feeling I would get when I actually was painting.
I tried more and more to see other patterns I had not yet noticed. When I looked to my right there was a street light just several feet away. It was always in a direct line to my view. Hearing some birds singing the joys of summer I realized that they were living in the top section of the lamp above the bulb. They were building a nest. They were sparrows, a male and a female. Each had a job to do and was quite good at it. As the male gathered the twigs the female took them and arranged the nest from inside. Their working together reminded me of how Jack and I were. I was fascinated by this raw and natural cohabitation that was happening just feet from my window.
The light seemed like a perfect place for a home. During the day it was hidden and protected from any possible predators; at night it was warmed from its bulb. I imagined how cozy it must be in there. Two little birds huddled together waiting for their brood. It gave me hope in this world that was filled with so much violence and war. I began to cry. But this time it was tears of beauty. I felt this was a gift given to me by God, and I thanked him. I felt if it hadn’t been for the Lupus I never would have had this experience. I hadn’t realized that several hours had past.
I watched them the entire day. I dosed on and off and when I awoke they were still there. I was pleased. They became friends; two individuals that were there for me to enjoy their company. I watched them throughout the afternoon as they busied themselves with their task.
As the light of day turned to dusk and the fifth hour arrived I found it difficult to focus my eyes in the darkening room. The birds settled themselves in and sadly I bade them goodnight. It was then I noticed the pain again. Having been in one position for so long my legs were not only throbbing but now they had pins and needles running up the length of them like electric shock treatments. Yet for an entire day, these birds had given me a gift. They had eased me of my burden of aches and entrapment. With those final thoughts I dosed off until later that night. Suddenly I awoke from a noise in the distance. It was a car door being closed. Looking at the watch I had placed on my windowsill I read the dial; it was 8pm. The light switch was across the room and now I was in total darkness. I knew that by the time Jack cleaned up after the classes it would be ten. If I was lucky I would see him at 10:30. Having slept more than I had in over a year, I was no longer tired. I wondered too if this was a gift from God or my long since deceased mother who could still watch over me. It gave me a feeling that I wasn’t alone, and made me feel comforted. I had now been in this position for six hours. Going “inside” had become a tool I could use at will. With the realization I now had of time it became more and more difficult to hold back the demons. I felt my bed was a deserted island and myself a cast away. I looked to the light in hopes of seeing some activity, but all was quiet. The silence I felt was as encompassing as my now damp sheet. Without any electrical devices to let me know I was in the real world the stillness only added to the darkness that surrounded me. The light outside the window was the only connection I had to life. I searched frantically for something to distract me from the pain again.
In a short time I became aware of another family that lived there. At night the light became a different society with dissimilar activity. Spiders had spun webs throughout the intricate telephone and cable wires that connected to my house. Wires that ironically as it was could bring communication to me from all over the world. (Yet there I was unable to even call to my cat.) How ingenious I thought for spiders to build webs there. After all it is where the moths gathered for their nightly dance. Being responsible parents these spiders were merely feeding their young. Not knowing a whole lot about the life of spiders I watched them intently as they repelled from one wire to the next like great mountain climbers. In many ways they are Mother Nature’s most talented engineers. What a work of art they made. I was certain D’ Vinci watched spiders. Suddenly my own art felt inferior. It left me with a new found respect for them. In the past I would just run when I saw one and call for Jack. This time they were far enough away, besides running had long been out of my repertoire. I watched those spiders as if they were tigers in a zoo barred from hurting me. In this case it was the screen to my window that was the barrier. Hours had past until finally I heard the front door open. “Deb,” Jack called out in a panic, “Are you ok? Why are all the lights out?” Eight and a half hours had past while I lay in that position. I found a strength that night that made me realize that no matter how difficult the pain, I can endure this.
I simply replied, “I’m fine but I think I need to move around a bit.”
For weeks after I watched the birds and spiders. Thinking a lot about this universe so few people knew existed; a place in this world where insects and animals learned to adapt to their environment. It made me think of my life and how I had handled this adversity of my existence. It made me realize that anything is possible. It was a true turning point in my growth as a handicapped person, as an individual. Then one day I looked over at the light and they were all gone. It was ok, they gave me what I needed at a time when I most needed it; my spirit.
From that night forward I had changed. Things that mattered to me in the past were no longer important. Life became a precious gift to me that I no longer took for granted. I made it a point to enjoy the little things. The birds feeding in my back yard, the patterns I saw in everyday life, the smile of success I witnessed on a child’s face. I no longer felt I was disabled and no longer a part from things. I now felt I was lucky because I was more in the real world than most. So many of us go through life without feeling; I too was one of those people. I now felt everything. And my tolerance for pain became more acute at the same time that my medicine began to take hold. The peaceful feeling I felt when I went inside from pain could now be accessed at anytime that I needed it. With this new found ability I began feeling better. As with the stress able to make me feel worse I now knew that peace made me heal. Strapping the brushes into my braces I began to paint again. I though every day about the amazing thing the human brain was. How through its power I had the ability to control if not my day…my attitude to how the day went.
I began to do more research on this subject. I found articles supporting the claim of the powers of the brain and positive thinking from diverse cultures. Native Americans, Mayans and Chinese to name a few. Even our own understandings in western cultures admit to the physiological and chemical reactions in the brain to overcome stress to the body. Is this “power” physical or is it mental? I like to think it starts as mental but then the mental state triggers a physical response. Starvation for instance is first a thought long before it is a physical reality. Starvation is something that is realized by the individual before it actually happens. Is it that realization that triggers chemicals to help the body to survive; even to the point of eating our own fats and nutrients to find the necessary things it needs? Adrenalin is a hormone that will pool all the areas of our body in a call for help under extreme stress for survival. Although it is a split second decision it is still a decision. Then why is it so hard to believe that the brain can’t do more than what we know to be true? We have all seen the parent who has a child that is physically or emotionally challenged in denial about their situation. The end result is the parent pushing the child to go beyond their limits. Or what we perceived as their limits. Through this denial the child excelled. Was it the child’s own brain that accomplished this? Was it the parents positive healing? I keep going back to the old adage “I am what you say I am.” It is for that reason I have been integrating “challenged” children into my classes long before it became popular to do so. Some of my best students were those with learning disabilities. Giving them a sense of self worth will guard against behavior issues as teenagers. I see it over and over again. I believe it is through these experiences that I never saw the world as black and white. And it is through these experiences that I feel blessed and given the gift of spirituality. Never following any specific religion; I can’t help but wonder if the heart the head and the hand are somehow connected. As an artist, I’m sure of it. As a person with a chronic illness it gives me hope.
I never did stop taking my medicine. That would have been irresponsible and crazy. For me my meds are like insulin to a diabetic. Without them my body can’t function. If my brain is misfiring and telling my white blood cells to fight and attack my good tissue; I wonder can it do other things. It is a question I am still exploring.
As the summer droned on; so did life’s little issues. You know the kind I mean. Things out of the blue that in your wildest dreams you never thought you would have to deal with.
Like…having a basement window well crack and flood your cellar. You couldn’t make stuff like that up! Fortunately this happened when JM was home and not before. After we pumped the cellar and let everything dry out we assessed the situation. JM and Jack stood in the driveway looking down at the culprit. “What do you think?” said Jack.
“I think I can fix it,” JM said confidently.
“OK, go to it.” Jack left to teach some classes. JM and I went to buy some cement. After all, how hard can it be? When we arrived at the hardware store we stood in amazement at the selection. Who knew there could be so many different kinds of cement! There ranged from walkways, to chimneys. After going through the array of shelves we chose what we thought would be best. By the time we got home I was so tired I had fallen asleep in the car. Waking me gently JM helped me upstairs and into bed. I slept like the dead for twenty minutes until I was wakened with a start. Standing next to my bed was JM with a sheepish grin. Smiling back at him I said, “What?”
“I think we need to get more cement. This stuff has gravel in it. Don’t get up, I’ll get it.”
“But if I don’t get up I can’t show you my new trick,” I said proudly. With a big smile on my face I proceeded to show him a new way I learned to get out of bed. Standing near the door he watched as I went through the first part as usual. Lifting my legs as far over my head as I could; I forced my body into a sitting position by lowering them to the bed as hard as I might.
“I’ve seen you do that before.” He said.
“Wait, I’m not finished.” Swinging my feet to the floor I grabbed a hold of the treadmill and began bouncing like a toddler excited to see the mother in the morning. With a big smile of victory I bounced right to me feet nearly falling flat on my face. When I finally caught myself I was still wearing a smile. JM began to laugh mainly because of the silly grin on my face. He laughed so hard that when he tried to lean on the door jamb for support he miss calculated and fell out into the hall. This started us into uncontrollable bursts of hysterics. It was a good ten minutes before either one of us could talk. When we did it was JM who said come on I’ll help you down the stairs.
When we got to the bottom he headed for the front door. “Wait,” I said, “I want to get a drink of water from the kitchen.” Just raising the glass to my mouth I stopped in mid air with shock and disbelief as I looked out the window to the back yard. JM I shouted as he came running.
“Did you cut down the top of that tree after I told you not too?” We had a long discussion the day before that we had to thin the trees to let in some more light. He was way too excited to buy a chainsaw. He kept saying he could do it himself; I kept saying no it was too dangerous. There in front of us taking up half the yard was a fallen tree. Large branches that were ten inches in diameter were sprawled across the rocks and lawn. The height was taller that either one of us.
“I didn’t touch it,” he explained. “I was with you the whole time.” As a matter of fact I was in the backyard right before I went to wake you and everything was fine.”
“Are you sure?”
“Don’t you think I would have noticed that?”
I looked up at the sky all was clear not even a cloud. “What does this mean?” was all that I could muster to say.
“I know what this means.” he said with a giggle, “We’re not only buying cement, we’re buying a chainsaw!!” I had no choice I had to give in. There was no way of removing that tree without cutting it. Despite the fact that he was twenty, I made him call his dad for permission.
His dad laughed at us and said, “Just don’t cut off any limbs of your own.” How that tree fell was a mystery we couldn’t explain. Why we hadn’t heard it was scary to think about.
To make light of the situation, I said, “If a mime dies in the woods, does anybody care?” That started us laughing again.
There was only one place in the yard that it could have falling without damaging anything and it did. It was as if it was placed gently into the ground missing several bonsai. The destruction it could have done would have been devastating for me.
I don’t know who was more excited about the chainsaw, Jack or JM. To me they looked like two housekeeping custodians of a hospital deciding to do an operation. I went back up stairs and turned the TV up loud. I wasn’t going to be a witness to it. They surprised me. And had the job done in no time.
As the summer was coming to a close, so was our camp. I was feeling better and getting used to the fluctuation of good days and bad days. Jack still insisted I use my cane at the Willows. He was always concerned with the uneven ground of the grass. On the last day of our last week we were all exhausted. With the day’s heat we all looked like we had just climbed a mountain instead of painted a landscape. As we headed to the van JM dragged all the gear on a dolly and Jack tried to rally the troops.
“Why don’t you take the kids to the pizza pallor,” I said, “JM and I will load the car.” Loading the car meant I watched as he struggled with the ten field easels. The only thing I could do was open the side door. JM had the keys. Turning to him I said, “It’s locked.”
“Oh,” he said, “Sorry.” He pressed the button making that annoying beeping sound. I tried the door again. Again it was locked. Turning to him again being too tired to realize it was intentional on his part I said, “It’s still locked.”
“Really?” he said so innocently with a straight face. He pressed the botton again. After the third attempt I realized what he was doing.
Laughing I said, “Don’t do this to me I’m too tired.” He did it again; this time when I looked at him he was smiling from ear to ear. He looked so funny standing there with that stupid grin that I could no longer control myself. Looking past his shoulder I noticed a lot of people standing outside at a fast food restaurant waiting for their meals to go. Staring at us I was sure they were wondering why this young boy was teasing this handicapped woman. They looked like the lunch crowd of construction workers annoyed by our antics. They were greasy and sweating. Some were landscapers covered in mowed grass. They were hot as well and probably only had a few minutes for a meal. Spattered among them were the occasional grandparents. Retirement brought them a day at the park to sit in the sun and eat. It was a tough audience and for some reason their confused glares made me laugh more. It was the kind of laughter one shared with a best friend in eighth grade math class when you’re supposed to be listening. It was the type of moment that was now only a memory for most, the kind that adults no longer indulged in. I was sure no one else saw it as funny and that just made us laugh more. Between gasps of air I said, “Don’t you know you should never make a woman over forty who has had a child laugh this hard? The consequences are too great.” That made JM roar and everyone look more intently. I begged and pleaded with him to stop as I tried desperately to cross my legs. With all the energy we could gather to control ourselves we both took a deep breath and pulled it together. “Ok, I said, “Unlock the door.”
“Ok,” he said, “I’m sorry.” With a stone look on his face, he made the sound again. I tried to pull open the door and again it was locked. Crouching down as far as I could. Laughing my statement was a defeated one, “Too late!”
In two days later he left. He went back to Canada and Jack and I were alone again. At night when the house was quiet and I walked the halls. I missed him so.
Reflecting over the summer I realized how laughter had begun to heal me. I was selfish. I wanted more of it. My joking around and storytelling had always been a part of who I was as a teacher before my illness. It was what my young students craved from me now. Late at night I realized I yearned for it too. JM taught me something that summer. Something that had always been there yet I was too involved in my own situation to see it. Everything pointed to the same thing. With my attitude I can lead a productive and happy life. I would still have obstacles but I am strong enough to hurtle them. The emotional hurtles will always be the most difficult but now I knew I could do it. When JM left for school I removed my braces.
September arrived and with the help of three and four teachers per class I was able to work again. Because of vomiting and more hair loss my Methotrexate was now taken by injection I had to give myself once a week. It was strange at first but not impossible. A month after getting the injections everything changed.
The pain subsided to stiffness. The weakness got better yet I still wasn’t as strong as I was before it all happened. My painting not only continued; but now I had more portrait orders than I thought possible; allowing me to pay off a lot of my medical debt. I came back by 95%.
Lex broke up with her boyfriend and started calling me every day. Our relationship had come back even stronger than before. The way that came about was also from the help of JM. On Christmas break he was sick of the situation she was in and drove to Connecticut to speak to her about it. She was ready for a change. She was just frightened and needed support. He helped her make the move. The act of having my daughter back healed me more. It will be another thing I will always be grateful to him for.
When I reflect back on my experiences of those two years I know now that through determination and family support anything is possible. Strength is a relative term that is greatly influenced by your surroundings. For me it was being surrounded by my students some as young as five. This strength of surrounding includes medical surroundings as well. But most importantly the resource of our own brains and spirit will in the end save us. As the good witch told Dorothy, I always had the power to go home. And although I never really left; it’s good to be back.