My name is Debra Freeman Highberger. In 2006 I was diagnosed with Rheumatoid arthritis. In 2007 lupus SLE was added In 2008 I developed Lupus discoid. Grouped together it is called Connective Tissue Disease. A debilitating chronic illness, I went from a very active and athletic person to someone who needed a cane and a walker in a span of three weeks from the onset of the first symptom. I searched book stores and the internet for answers. I did not find anything that would say if I would have my mobility back; if the pain would be gone. I vowed then that if I did I would write something to help others answer that question. This is a documented account of that journey; of my road back.
Before one can understand who I have become from this illness one must first understand who I was and how it changed me.
Not too many people can proclaim their life was perfect. After all perfection is a perception we all have. It is as individual as a snow flake. For me the perfection of my life was molded from the people I’ve met. The job I did and the surroundings I had created. It was measured by the feeling of peace I would achieve when my head hit the pillow at night and I would think…the balance of my life was right. I worked hard for those feelings. After all I am by no means perfect. No, it wasn’t my own perfection I sought. It was the feeling that I did the best I could with the materials I had.
I was an art teacher. I owned my own school. I taught life skills as well as art to many young students. Some were sent to me for the life skills alone and I knew this. I was born with the ability to stand outside and assess a situation of others and myself; always careful of the advice I gave knowing how impressionable a young mind is.
My education was in child development which only added to this understanding. I enjoyed my work and that was the main root of feeling my life was perfect. It was a goal I strived for.
I have a daughter who was in college and a husband that was also a teacher with me. Like the workings of a clock our life rotated around each other with the precision passing of time. Together the three of us strived as a unit. My daughter whom was from a previous marriage had always been very close to me; we shared everything with each other. Some even claimed we were too close. My husband was my best friend and had been for many years. As a man that was older than me he was my mentor. He taught me how to paint, how to communicate and how to live. Life was perfect for me. I had a family I loved. A job I couldn’t imagine leaving. I was an artist that made many paintings and had a beautiful home I cherished. What more could I want? I was content.
Everything I did in life was ridden on the tails of creativity. I looked at the world as a place that was borrowed. A gift to be enjoyed and not taken for granted. I was blessed to have every day as a clean slate to paint the picture of my past that was yet to come. Somehow I knew this and because of this I would try to cram in as much as I could in the course of everyday for fulfillment. On a personal level I painted, read a lot of books, gardened, worked on my house and at night I did a lot of thinking. My thoughts were often of better ways to improve my happiness. Although you could argue why fix something that is not broken…it was with this critical thinking I maintained my happiness. Happiness is not something one waits around for. Like a great painting it has to be created.
In the midst of this life I was living, issues would erupt. Usually they were issues that involved other people. One of the parents of our students would call me at home and we were the ones to go to for advice. We didn’t mind this role. I’m not sure how it all came to be but it was a good feeling and deep down I felt that through doing good to others good will be returned. That is how I lived my life. This world for me was a practice; a dress rehearsal for more important things to come once it is done. I am not a religious person. I don’t follow any organized faith. Yet I can’t help but think that this world we live in is not all that there is. Something as precious as life cannot be blown out like a candle only to have smoke lingering in its place; a glow must be left behind. And maybe the other lives we affect are in fact that radiance. That is how it came to be that we had taken in two individuals as house guests that found themselves homeless.
It was the third week of April 2006 and I was doing what I always do that week. I was working in my garden. Ten years ago I began rebuilding the garden. It was Japanese and it was in my back yard. A large area with a lot of potential I viewed it as an enormous canvas and my plantings were the paint. Textures of green with an occasional splattering of colored flowers spread from one end to the other. There was a hush to the place not unlike a church. When anyone entered my garden they were immediately transported to another time. It was if they had entered Shangri-La. That is how it felt for me every day.
It had overhanging trees like great druids watching over their territory. These trees had been planted 70yrs ago by my mother-in-law the original owner, an avid gardener in her own right. I had never met her. She died a few years after I was born. Somehow this garden always felt like hers too. It would have been unfair for me to take all the credit. Her presence was always there. Like the secret garden in the story; I had merely awaked it.
A pond sat tucked in a far corner. It had a waterfall and plantings. It was a place the birds drank and splashed for their daily bath. The sound of the water cascading over the rocks brought instant soothing to a hard day’s work. It was hypnotic and wonderful. Wildlife was abundant in this spiritual existence. Squirrels ran rampant followed by an occasional woodchuck or raccoon. Sometimes they would stop and look at me, surprised that I was sitting there. It was at those times I realized that this was their world and I was fortunate to be allowed in it. Away from the hum of traffic and noise I would often play soothing instrumental music as I weeded and planted. It had to always be instrumental. Somehow adding words to this visual oasis categorized it in a way that was no longer sacred.
When I first started building this garden I was also into making and designing bonsai. Sometimes I would take old trees and bushes that had been in the ground for years and train them to be kept in shallow pots. I had done this to an azalea that my mother-in-law planted in the ground. Now in a beautiful pot it stands on a pedestal at the center of this shier, like a maiden of the forest. Two feet in height with a winding trunk six inches in diameter it reaches and sprawls in a pose befitting of a ballerina. It lets all know with a long and mournful note that this land was first hers. I named her Ruth after that the gardens first proprietor. It is my tribute to her.
I enjoyed this type of garden because it was shady. Without a whole lot of sun, textures and patterns were its main attraction. Flowers competing with color would have been too loud. Although I had some flowers it was very thought out ahead of time; like placing a stroke in a landscape painting.
I loved that it was a shade garden. I was never one that liked the sun anyway. It always felt like the loudest guest at a party, the one that had too much to drink; and left you wondering why you invited them. Since childhood I broke out with a rash every time I was in the sun; an unusual predicament for a gardener. It was that reason I never went to the beach. Living on the North Shore of Massachusetts, where everyone came to vacation, it made socializing as a child difficult.
As an adult this garden was my sanctuary. It was where I read every morning from the chill of spring to the impending frost. Being professional artists, it was where my best ideas came from. It was where I cataloged twenty different species of birds. It was where me and my dog Linus sat and discussed the wonderment of life. My life and my garden was exactly what I had wanted it to be. It was home.
I had spent the entire summer of 2001 working on a dry river bed. I had built it myself. I was different then. I became consumed by healthy living and found a sense of spirituality in exercise. It gave me a Zen feeling to push my body to its limits. Having worked with free weights I was very strong. Hauling hundreds of pound of rocks to create the illusion of a dry riverbed that has been there for years was exciting for me. At that time I was forty years old. No, I was not a stereo typical woman. Anything I wanted or had in life I learned to push my limitations and do it myself.
My husband Jack and I had been married for fifteen years. We had known each other for twenty five. Because of a 19 year age difference between us; when we first met we were just friends. He became my painting teacher. He taught me all that I knew. He laughed at the various boyfriends I brought to the studio and would ask me what I saw in them. He became my mentor in many ways. After the first two years in the midst of this relationship we both married other people. They were both very different from either one of us. His wife was a professional woman that wore a power suit to work. My husband was an engineer that was a type “A” personality.
I had always wanted a child. After several miscarriages I had one with George. Jack on the other hand had no children. His wife didn’t want any. Jack came to the hospital to see me. He rejoiced with me the day I delivered and instantly fell in love with her. It was a girl and her name was Alexis. I always called her Lex. It was the first baby Jack had ever held. He realized that he was missing out on one of life’s pleasures. Our spouses never minded our relationship. They were so caught up in their own worlds. After all Jack and I were friends long before we had met them.
Over the years as both our marriages dissolved for separate reasons at different times, it was our friends that pointed out to us that we were in fact meant for each other. They saw in us a friendship that is rare. To us it was as natural as breathing, although it was right in front of us, we had never seen it. With their encouragement we started dating. Two years after that we were married. Somehow the age difference didn’t matter anymore. His love for Lex only added to our happiness.
For the past sixteen years we have owned an Art school. We named it the Acorn Gallery after the Celtic proverb, “mighty oaks from little acorns grow”. It was a school that taught students from ages five through adult to draw and paint. Because many of our students would stay with us through adulthood, it was a school that taught more than just art. By its own design it taught kids about life and being a family.
I had always heard that stress can cause havoc on the human body. Until this time I never truly understood that statement. Sam one of our house guests in the spring of 2006 was a previous friend of my daughter Lex. Unlike her, he was still in high school. The other occupant was my cousin Suzie whom I hadn’t seen since childhood. She was the same age as me, never raised a child of her own, and was not used to having a teenage boy around the house. Suzie also had a dog named Mac; a Jack Russell terrier that won everyone’s heart. Although a dramatic difference in age, Mac and my dog Linus’ became best friends. Being a lot older, Linus would watch over him like an old man taking care of a toddler barely keeping up with him. Mac was the kind of dog you would just look at and laugh. He was so crazy and cute. Even people who weren’t fond of dogs liked Mac.
Sam and Suzie found themselves homeless for separate reasons and we were helping them get on their feet again. Our daughter Lex was away at college.
With the extra people in our house the atmosphere was instantly different. It felt colder and unnatural. It was not unlike the circumstances on a life boat with strangers; each lost in their own world of needs. As with most situations like this, arguments between our visitors would erupt and I or Jack would have to address them. We both knew that the situation they found themselves in was difficult and reassured them that it was only temporary and soon their lives would be their own again. Sam being so young was still dealing with the fact that until he found us he was on the street with no place to go. He had no relationship with his family that lived in the south. I made it a stipulation that for him to live with us he had to try and resolve his relationship with his father. I made provisions for Sam to talk to him on the phone once a week.
To make matters worse, my daughter Lex was dating a man whom we did not approve of. A fate most woman experience early in their lives, myself included.
During the day working in my garden, teaching, and painting became my only outlets. Our guests fought with each other constantly with loud screaming matches that made my blood run cold. On that particular day in April I was weeding between the rocks of the dry riverbed and cleaning out the debris from under them. It was a task that started simple and then slowly grew to a time consuming endeavor. Because of the scope of the area, I resolved to the fact that it would take a week to accomplish. With every four foot section I removed all the rocks sifted them and cleared out any soil that had gathered there then replaced the rocks as before. I enjoyed doing this chore because it was brainless and allowed me to be in my own thoughts. Also because of the bending and hauling I was sure I would be left alone. No one would think to volunteer to help. My only companion that day was Linus, my forever loyal Brittany spaniel. We never adopted Linus; he adopted us. Eight years before that a friend of ours who was still in college brought him to the studio because she could no longer keep him. She had rescued him as a pup from some preteens that had him tied to a fence and were throwing rocks at him. He was whimpering and terrified when she found him. Linus never had an aggressive bone in his body; even when it came to protecting himself. Without thinking of her own safety she went into the circle of boys and got him. Because she was in college, she couldn’t keep him. She knew that we were associated with a lot of families with children so she brought him to us. When they walked