Tuesday, June 28, 2011


First published in The Lupus Magazine

Is the energy that propels us to reach for things we need as an infant…and want as an adult. Some refer to this as identity.

The Oxford English Dictionary has an abundance of meanings for this word. For the purpose I am using it here it is defined as the following:

“The fact of being who or what a person or thing is”

In other words, who we are in conjunction to, what we are. Who we are can be defined in so many ways. It could be as simple as the achievements one has accomplished or as complicated as the way in which we perceive how we look or act to ourselves and the people around us. Either way we have a picture in our minds as to who we are, what we do and what we look like.

In turn, this affects who we end up associating with and how we carry ourselves. It is difficult to define Identity without also discussing character. A human element that is most difficult to see in ourselves as opposed to others. We know it is there. We hope it is strong and to be admired. It is the strength and originality in a person’s nature.

Most people are happy with their sense of self and identity even if they are unsure about their character. They have adjusted their identity to work for them in their own way. It creates an image in their minds eye that can be called upon at will. They support the self with clothes they wear and jobs they may hold. Over time the self is reinforced and the result is a much better rounded individual. It is the foundation we use to raise a child. It is at these times that the propellant of one’s self can do great things.

But what happens if that self is completely changed by illness? For most Lupus patients, it is often after the self had been fully formed. Where does the old self go? Is it still there hiding among the rashes and hair loss? Does it lurk behind the now awkward gait of our strides? Is it now only a memory of the jobs we used to do?

This was the question that was forefront on my road to understanding this illness. When I am sitting quietly I still see in my mind’s eye that self I have always known. The one with the olive skin, long straight black hair, hazel green eyes with long lashes. I am confident and happy. I have the feeling that I can do anything as long as I believe I can. I am successful in my work and in my relationships. I see myself respected by others, and loved. But most of all I am a woman and every definition that surrounds that word. I am content. But then I look in the mirror, and I don’t know the person looking back at me. She is without hair, has a ruddy complexion, no eye lashes or eyebrows to speak of and has scaring all over her face from discoid. What now defines this woman as such? I want to cry for her when I see her. Some may think it would do me some good…but I don’t…at least not yet.

When my appearance first started to drastically change there was one person who gave me strength. This strength was coming from a most unlikely source. From someone I had never met. From someone we all know. No it wasn’t God. I follow no organized religion. It was from a woman who was in the music industry for many years. A woman who could change her appearance to keep up with the changing times so as to stay on top. She worked very hard at this and it was often discussed in the media. Was it a character she was creating or was it her character that created it? Believe it or not that singer was Madonna.

Only a few years my senior, I watched her as she morphed herself from one generation to the next. Today she is a sophisticated beautiful woman who could put anyone to shame. Never a huge fan of her work, (although I did like some of her songs) I was always fascinated with what she was going to do next. I was drawn to her in that way. Back then I looked to her as a role model in that age was only a number. Little did I know that what I was actually getting at the time was an education that I would need in years to come. No, I didn’t want to look like her. I just wanted and later needed her chameleon attitude. A position I found that would take awhile and courage to obtain. Like most conscious transitions it first appeared to me as thought long before it was acted upon. That thought brought self doubt.

What would people think if I completely changed who I was on the outside? What if I run into someone I know from my past and they don’t recognize me. Will I explain it all to them? Will I feel stupid and therefore reflect that. And then there was the, “Why do I even care what people think?”

Well, I will tell you why…because we do…it is human nature. I knew I had to do something but I didn’t know where to start. So I put it off yet again, until one day I was given the gift of courage from another unlikely source.
I was still teaching at the time that I was dealing with all this. Working with children who can be painfully honest was both a curse and a blessing.

One day a student of mine that was 10 years old came into class and said she had a present for me. Her name was Isabel and in her hand was a hot pink acrylic wig. This young girl and I had always had a special relationship and often I felt she was much older and wiser than her years. We laughed when she pulled it out of the bag, and taking off my hat, I put it on. The class got a kick out of it and I wore it the rest of the day. I remember it was terribly uncomfortable. When parents came into the room I acted like it was my normal hair… to the delight of the children. It was a good time and at the end of the day I went to hand it back to her.

She took me by the hand and led me to the back room. Still holding my hands she looked in my eyes and said, “Debra, it is time.”

I knew what she meant and a lump caught in my throat. She was right. And as most kids her age do …she smiled, skipped out of the room and the magical moment had passed. Although I had known her many years, it was at that time I truly saw her character.

The next day with many tears and yet determination I bought a wig. I first tried on ones that I was familiar with; long straight black hair… I even tried on short black ones. But with the new pinker completion of my face it made me looked all washed out. So I had to go with something completely out of character for me.

I went to a beautician and she showed me how to camouflage my scars. I was also told recently that I needed to cover my face completely because of my discoid. Using a veiling I was better able to protect my skin. Today when I look in the mirror I see a new self. She is blond and exotic looking… her smiling eyes peer back at me under the mystique of the veil… and the first self I had smiled back; because she never left. It was her strength that gave me the courage I needed; the strength of my character to pull it off. And by the way, no one recognized me.

It was like a new beginning, a fresh start; and a sense of control with this often uncontrollable disease.


First published in The Lupus Magazine

Although most people know me as a visual artist; my education is actually in child development. I have found over the years for this to be most helpful when I first came down with Multiple Connective Tissue Disease; or MCTD.

Although my own child was grown when I contracted this illness, as a teacher that owns an art school with children from ages 5 through ages 18, it was them I was most concerned about in the appropriateness of explaining this complicated illness. An illness that was difficult for even adults to understand and why it was physically changing who I was.

To make sure I handled this situation correctly I turned to the developmental biologist that has been respected for many generations. His name was Jean Piaget. Piaget had developed many theories on child development from the physical to the intellectual.

Children are not born as “little adults.” It was the first statement I ever read on Piaget philosophy and it is the main statement that should be considered first by anyone who has any association with them. Until approximately age 15, children are not able to posses adult reasoning.

This was not just a theory of Piaget but an observation that was backed up with the understanding of physical brain development. Children under the age of 15, and sometimes 20 for males, do not have the capacity to think like an adult because that part of their brain has not yet developed the capacity. It is with this understanding of the brain development in stages that one can make the appropriate responses to talking to children about long term illness.

Ages 4-7 The Preoperational Period...

We all know that speaking to a toddler about illness would be fruitless. But how do you talk to a child that is over the age of 4? According to Piaget, between the ages of 4-7 they are in the intuitive phase of the preoperational period. Put simply, a child between these ages has an intuitive grasp on logical concepts. They are more socially aware of their surroundings. Rules of a game are not developed; therefore simple dos and don’ts are necessary.

Yet this age also still believes in magic and is relatively unaware of the functioning of daily life. When a child, of this age, has a parent with a chronic illness they will only be somewhat aware of it. To understand just how aware; the parent needs to listen to their questions very intently. A child will only ask a question that he is developmentally able to understand the answer of. This is so important for the parent to understand as it is the building block to all discussion.

On one occasion a 6 year old asked me “Debra why are you walking that way?”…the answer I gave was, “Because my leg hurts.” I am also asked a lot by this age group, “why is your face so red?” I always answer, “Because it doesn’t like the sun.” These simple and to the point answers sufficed for them. I know this because they didn’t have any further questions. When their brain develops further, new questions will arise. Because I can have the same student for ten years; I have personally witnessed this.

Ages 7-12 Period of Concrete Operations...

Concrete Operations is in reference to the child’s development of organized logical thought. They can now understand amounts and multiple classifications of things. Because of this stage their questions will become more intricate. They may for instance ask, “What is it that your face doesn’t like about the sun?”

To which a good answer could be…

” We have two armies that travel in our blood. The first is the red army. It gives us food and nutrients. The second is the white army. It protects us from colds and infections. When the sun touches my skin, the white army that protects my skin thinks that the sun is trying to give me sunburn. So my army is confused and doesn’t know when to stop trying to heal it. It is the army that is really causing my red face.”

The “army” in my body is a good analogy to use with kids. It can explain joint pain, fatigue, and many other symptoms of lupus in a simple and understandable way. I sometimes use it when talking to adults as well.

Ages 12-up Period of Formal Operations...

Formal Operations is a phrase used to describe in the development of a child their ability to understand abstract concepts. They now understand the principles of formal logic and can perceive an action and its possible outcomes. It is the age that children will develop fears of potential situations. It is the age that your child may ask you about your Lupus and death. Because their understanding of the world around them is more concrete, the illness must now have a name. It is ok to call it by what it is. It gives them a visual to place it. Although no one wants to tell their child this illness is going to kill them it is important to be honest with them.

To solve this dilemma I suggest making them a part of the fight in little task type of ways. Say to your child, “If I do what the doctor says and take my medicine I will live a very long life.” It is at this point you can empower your child by asking them to help you in this fight. Suggest to them things they can do around the house to make it easier for you. This will not only give them a feeling of control over the situation but will also teach them empathy and make them feel like they are making a difference.

To conclude; Piaget’s theories are filled with a lot of common sense; it is backed however by scientific studies. What he gave us was peace of mind that we are doing the right thing. Remember, children will only ask what they are developmentally ready to hear the answer to. They want to be a part of the fight against this illness. They need to be reassured that you will be around for years to come.


First published in The Lupus Magazine

Time is an abstract concept that is filled with so many different visuals for the individual. As children we use it in the form of anticipation of birthdays, holidays and the idea of what it will be like when we grow up. As an adult it is often a lack there of. The beat of a heart is not unlike the tick of a clock or the swing of a pendulum.

Time is a continuum of contrasts. It is a peek at hopefulness and yet can also be a glimpse of foreboding. Despite being a non tangible thing it is often looked at as its own entity. It is as if it is a living breathing thing that somehow has control over our lives. And yet it has always been something that is just beyond our grasp no matter what our age. At times it is as fleeting as a bird in flight. Other times it is as heavy as a damp day in early spring. What we do with our time also is wrapped up in who we are as people. How we are perceived as an individual. Are we lazy or are we productive. Are we organized or are we a free spirit?

Why are we as humans always so wrapped up in the use of our time spent? After all we don’t even understand the concept of time at our birth. Time isn’t acknowledged until we first realize that our mother has left the room when she put us down for a nap. Time is greatly influenced by how comfortable we are in being alone. The active and fidgety child is often the adult who is trying to accomplish so much. That is not a bad thing, just a different thing. Is how we utilize time really that different then?

Time seems to be something there will always be a reserve for until you are imprisoned in the cell of chronic illness. Then time takes on a whole new persona as complicated as human beings themselves. Yet oddly enough it is still holding its original facet of contrasts. Suddenly time is very limited and yet equally in abundance. The first thing that comes to the mind of the chronically ill is the idea of running out of time. With a possible looming death comes a series of questions. “Will I have the time to do all that I want in my life? Am I going to be able to watch my children grow?” Suddenly life seems so very precious.

And then there is the profusion of time. With Lupus the fatigue is such that you are forced to slow down your life. Many hours can be spent just sitting. Is that a waste of time? If you keep yourself busy so as to not think of such things it virtually feels like a candle burning at both ends. Either way the “busyness” of our lives can be a bit overwhelming. It can give us the feeling of wanting to run from it; even if we can’t.

For me, as a person who has always utilized every second of my life, being forced to slow down was a good thing. Although I have always been very visual, I felt like I saw the world for the first time after I became ill. My perspective of time and what is truly important changed drastically. I used to think, “When I get more time I am going to write a book or crochet that afghan.” Little did I know that this awful disease would give me the wonderful gift of “time."

That intangible object that was always in my head and was just out of reach was now very clear to me. When I first became ill I wanted to tell people about this usual aspect of illness. I tried but mostly they wanted to hear about my physical ailments. I wanted to grab them by the shoulders and shout, “Wait! Listen to me I have been let in on a secret and I want to share it with you!” I wanted to tell them it is ok to just sit…and to just be.

In the process of just being I learned so many things about myself I never would have known otherwise. The first and foremost is that I am always there for me. In the long and isolated hours of the night, when the world was unaware of the pain I was in, I found myself holding my own hand. Literally I would take one hand into the other and stroke it softly to comfort myself. I found this to be of great reassurance to me. It got me through many long and dark nights.

Time is no longer my enemy. As the abstract concept that it has been over the years; time has been measured in many different ways. It was calculated through changes of the sun, the burning of a candle and the ringing of a bell just to name a few. For me it is in the beating of my heart in the still of the night to let me know…I am still here.

The True Meaning of Awareness

The True Meaning of Awareness First published in The Lupus Magazine - La Revista de Lupus By Debra Freeman Highberger © Is awareness something that just develops and then stops or is it forever growing? At what point does awareness go from being words on a page to an internalized emotion? This is why on the first anniversary of The Lupus Magazine I want to say thank you to everyone for letting me be a part of this wonderful community whose only interest is to get the word out there about Lupus and it’s devastating effects it can have on an individual; as well as the work that is being done to find a cure. With no sponsors backing this magazine we have proven that it takes the human heart to really give support and teach awareness. It is difficult to bring awareness to a disease that is constantly changing. Unlike many other illnesses there is not just one face of lupus; which why it is important to bring this awareness to the internal medicine community and to the public. To have awareness one must first want to understand…and then have empathy for it to become a full circle. It takes a type of empathy to truly be aware of the knowledge that one bestows on another. Without empathy awareness is merely a fact and not a follow through. When I was teaching nursery school in Germany there was a girl in my class who was four years old. There was also an autistic boy in the class that we tried desperately to engage with very little success. This four year old girl made it her goal to mother the autistic boy and try to include him in her play. She also wanted very much to take care of him. I was amazed by the amount of empathy this young child had for her fellow student. Especially at an age when children were just learning to play “with" each other as opposed to “side by side.” It is said that from every soul’s path we cross, we will learn. From this child I learned the true meaning of human kindness and empathy. From that moment on, it had become an important element to the social foundations of every class I have taught. After all, I have never met an adult who couldn’t write their name. But I have met adults that couldn’t get along with others around them. In my classroom I have seen the effects this type of environment can create in the hearts of its children; and how they deal with the issues that surround them. Little did I know, when I first began this journey of wanting to teach, the importance of awareness and empathy from one individual to the next, that it would hit so close to home so many years later. Since I have come down with this disease, “awareness” has been the word I have heard the most. It is used so much that it has almost lost its true meaning. When we think of awareness we first conjure up images of fundraisers and walks. But the true meaning of awareness is so much more than that. I want you to take the time right now and close your eyes. Be aware of your surroundings, the sounds, smells and temperatures that are your environment. Next close your eyes and be aware of your body, the beating of your heart, the rise and fall of your breath, the sensation of your skin. Now imagine that skin burning and itching. Your heart is randomly skipping every third beat and your lungs can no longer be filled to capacity, just to mention a few. That is what being aware of a lupus patient is. Often I hear from other lupus patients that the people who mean the most to them are sometimes the ones that understand the least. It is a struggle that a lupus patient did not expect and certainly doesn’t need. I was very fortunate that I did not have to deal with that issue. When I got sick, besides my wonderful family, it was the children of my classroom that showed me the most understanding of what it was I was going through. From the five year old that had just learned to tie their shoe and wanted to help me tie mine; to the twelve year old that would fetch me my walker, these often overlooked individuals of our society stood up to the plate in the form of awareness like no other with no expectation of recognition. They internalized their awareness and chose to do something about it. When it became apparent that this disease was not going to go away for me, the children of my classes banded together. Like me, they felt powerless under the circumstances but because children are so full of hope they were not going to sit back and let this consume me. It was a form of love that was so pure and innocent it gave me hope in the future mankind if nothing else. JeanMarc Dykes is a student I had for many years and was then a senior at a college in Vancouver. He was the first to get them rallied. Whenever he was home on break he would often help me in the classroom. It was during those times he witnessed, as I did, the wonderful support I was getting from even the youngest of students. It was at that time he made a huge decision. After graduation, to return home, he decided to ride his bike from Vancouver, Canada across America to Marblehead, Massachusetts. Marblehead is the small town from where we are from that is just north of Boston. A 4000 mile ride, it was something that to this day, I am in awe of. To make this truly work he called on the aid of the other students to spread the awareness. From the youngest to the oldest they all jumped in. With very little help from me, because I was so disabled at the time, these kids raised over $10,000. It was later donated to the lupus center in Boston, where I am a patient. Although they got some media coverage they had learned very early on that the awareness they were to make was going to have to come from them first. To do this they had bake sales, a haunted house a masquerade ball as well as a huge fundraising dinner that included a fashion show and guest speakers to talk about lupus. On his miraculous ride, JeanMarc realized the awareness was also going to have to come from him. He tried contacting news stations as well as newspapers to let people know he was going to be riding through the area. Most turned him down or ignored his attempt at contacting them. But it was different in the smallest of towns across this country. In these places they showed him the most respect for what he was doing and its cause. Wherever he went he spoke about the disease and tried to bring awareness of its devastation. Often to people that would stop and sit with him by the side of a road, or at a pie festival in the middle of nowhere. One by one he spoke to whoever would listen. Along the way he came across so many people that knew someone suffering from lupus. He had no idea when he first set out on this journey, just how many sufferers there really were. He was hailed by those that had seen him. He was even given the key to the mayor’s office of one small town so that he could sleep on the couch for the night, instead of on the cold ground. And when he arrived home all bloody and bruised after several months it was our small town of Marblehead Massachusetts that gave him a police escort with sirens blaring right into my waiting arms. Through his gallant effort to bring awareness of lupus to the people he became aware of one substantial thing. And that is that people are generally giving and one person can make a difference. Today my students still go out of their way to help me. I received a phone call from Laura Whitehill just a few weeks ago. Laura has been a student of mine since she was in second grade. Today she is a junior in high school. She heard about the Walk for Lupus Research that is coming to Boston on June 11, 2011. She has rallied the kids once again and has formed a team called Debra’s Divas and Dudes. I will be walking with them. I told the kids I may have to pull out the walker again to accomplish this three mile trek… each one told me they would carry me if they had to… I think they already are and I hope long after I am gone they will realize that from my classroom they have learned so much more than just art.

Sunday, June 26, 2011


Like the ocean; everything in life has ebb and flow. As a person that has lived on the coast all of my life I have come to realize that like the spirit of the sea life will give and it will take away. This is what the wolf is counting on. The wolf has taken a lot from us. This is something we have known for awhile. For everyone with this disease your “things” may be different. But what we need to do collectively is think of a way to redefine our life and what is important with what we have left, or even a scarier question….what we have yet to obtain. I have looked hard at this since my first visit of the wolf. And just as he is not finished with me, I am not finished with life. I feel it is worth addressing. So instead of saying this is what I no longer have. It is certainly a positive direction to say…now what can I do. Here is the gift he has inadvertently given me:
This dance I have been doing with the wolf has lasted 5 years so far. Before it all came down I was a woman that worked a full time job ran my own school (seven days a week) I painted approximately 10 portraits a year as well as fulfill my obligations with galleries around the globe. I was a wife, raised a child and had taken in homeless children until they graduated from high school or college. My life was very busy…very full…and I felt I had it all. How silly of me to have been so presumptuous.
I was obviously a woman that was ambitious and always wanted to try new things and fill my dance card. What I didn’t understand was what was really important in life. Sure we all read about these importance’s…you may even be reading this right now with that half conscious thought. But until you are faced with a candle burning at both ends when every second is more important than the last you never understand the true meaning of life. Yes I was busy. Some may have even called me successful. But I wasn’t living. I only existed in a whirlwind of energy. Then the wolf stepped into my life and I found myself stopped dead in my tracks. At first I was forced to just sit “still”. Moving was painful so I really didn’t have a choice. When I was still I found that the things I thought made up my life were in fact just things. Later I found life itself held a beauty all its own, irrespective of what one was doing. Being “still” is a wonderful place to be. If you are comfortable being alone like I am it can be the playground in your mind where you went as a child. If you love yourself you always have a friend there. You also have to be brave to go to this place called “still” along with your friends it can also hold your nightmares past monsters and fears. What the wolf has given me is a moment to confront all this...to ask myself what makes me happy and to tackle the terrors in the closet. Interesting the fear was easy to spot…and with time deal with. But the happy part was more abstract. To first find out what makes me happy I had to first examine what was missing. This is not to be confused with what was lost to me, but more what I have never been able to obtain. Once I have this, to then feel my life is complete. After all until your life is complete how will you ever be at peace when it is time to go? This question was my gift from the wolf. These queries are different for everyone. I could tell you mine…but it wouldn’t be yours and therefore really wouldn’t matter. At first it is difficult to just sit and think of these things. You have to admit your weaknesses to yourself. You have to look at all the things in your life that were pushed aside because you figured you would deal with them later. Well guess what? It’s later. The wolf has decided that fate for you. But in time if you give it up to the universe and keep your eyes open you will see your path and the direction to go. Every day we are given a second chance to make it right. To live our lives as someone who is alive. Put your hand over your heart. But instead of making a pledge; feel the life that beats inside you and live.


What comes to mind when you think of the word choices? Perhaps it’s a meal or a partner or a job. For me it means choosing to live. Others will only think of the word choices when they no longer have any. I have never felt I do not have a choice. It is this stubborn pigheadedness that has taught me to battle the wolf.
For the lupus patient our bodies no longer have rules. Our world inside us is in ciaos. Armies of our immune system are fighting wars without orders; while our bodies lay back and except it. It creates an environment where the meek rarely survive. Although I know the day will at some time come when I am too tired to fight anymore and the wolf will inevitably win. But until that day comes I am my own warrior. We can fight back to some extent. We actually do have choices in the ridged process of keeping ourselves alive. First and foremost we choose the right doctors that understand our needs. We also have choices of medications (not many but some). And then there is a lifestyle we must choose from. Do I still work? What happens if I exercise? Will I hurt myself? Organic not organic….ash the bombardment of information that hits us from all sides is often overwhelming. Sometimes this onslaught of advice is from good intentioned individuals and yet other times from people wanting to take advantage. So how does the lupus patient sort through all these things that are hitting them all at once and take charge? The answer is easy really. Just take the reins…become your own advocate. Set the rules and governor of your own life. There may be a bit of resistance on the part of the people around you. But if you are practical to your own standards and stick to your principles it should prove to be a much more fulfilled life with purpose and excitement. Instead of someone waiting for the wolf to dig the hole. It was this attitude that brought me on a journey that took me half way around the world.
When the wolf knocked at my door five years ago…I unintentionally opened it. And found standing before me a master of disguises and symptoms. An uncontrollable beast that was sure to surprise me at every turn. So how does one tame this beast? Well for me it reminded me of the monster in the closet when I was a child. My mother said to me when I was a frightened little girl, “Stand up to that monster, and tell him you are not playing. Then turn your back on him and ignore him.” That’s exactly what I did when I decided to fly from Boston, Massachusetts in the USA to Brisbane, Australia. I lost my mother to breast cancer when I was in my 20s although she has never seen me sick she is often with me when I need her most.
Several years ago through this magazine and facebook I met an incredible group of woman. They all had lupus and like me they were just trying to reach out to someone who understood what it means to have a chronic illness. I became real close with many of them. We laughed together, cried together and mourned the loss of others who finally laid down their swords to the wolf. Through solidarity we learn to cope. One particular woman Annie Taylor was always there for me. We mostly talked about life we sometimes compared new symptoms when they would arise, but we rarely complained to each other about the situation lupus has put us in. In that way we were good for each other. We were woman first and lupus patients second. We watched out for each other making sure the other was ok and asked each other about results to latest tests. In the course of this developing friendship we found a common bond in tracking down individuals that were trying to take advantage of sick woman. Together with a small group of other woman we would expose them for who they were. Many people began to become dependent on our crusade and it was an empowerment that not only set them free but gave us strength as well.
Then the most amazing thing happened to me about six months ago. I was contacted by a woman who claimed she was my cousin. She not only was my cousin but lived in Australia as well. She was a mere two hours away from Annie. Her name is Sonya. Her grandfather and my grandfather had been brothers. Through circumstances that were out of his control her father had been separated from my side of the family. His name is Jim. We never knew that each other existed. Sonya told her boyfriend Shane that as a gift to her father she wanted to find his family and that is how Shane found me. The first day we made contact on facebook Sonya and I hit it off wonderfully. Despite the time difference we chatted on line that first day for five hours. At the end of this conversation she said in a slow and simple type…”Debra, my father has lupus.” I stood there looking at the letters on my chat screen. I didn’t know how to respond. I until this point could not find my genetic link to this disease. And of course neither could he. Half way across the world a tear rolled down my cheek. I suddenly felt for certain that answering the door to the wolf was not in fact anything I did but was something that was destined to be. I had never met Jim before. But our bodies knew. Deep down in the DNA markers that claim us; Jim and I was a match: a lupus match.
Over a short period of time, Sonya and I became close. We talked every day sometimes twice a day. I introduced her to Annie Taylor and told her about the different lupus organizations in Australia. I told her that I wanted to go there and see her Jim Annie and Geoff Thomas (the amazing man that has started this magazine). I said I wanted to go to the Lupus Association Queensland’s a
Annual High Tea and introduce everyone to my uncle Jim. Sonya was the one who made me believe it was possible. And then a friend I went to high school with said out of the blue to me not knowing I had these conversations…”Debra you need to go to Australia.” That was it…for me it was a sign. But where was I going to get the money for round trip tickets to Australia. The event was less than a month away. The next morning Sonya said to me..”Debra this is meant to be , you have to have some way you can get yourself here. And then it dawned on me. My friend Tom had asked me about a year ago to do a portrait of his girlfriend Alex. I know if I were to ask him he would pay me now so that I could pay for part of the ticket. And when I get back I will do the painting. He already had many paintings of mine he knew I was good for it. When I sent him the email I got a reply back in less than an hour …it simply said, “You deserve this…I sent you a check for the full ticket…enjoy, Tom.” My aunt Tish was there when that happened. She was intrigued by this whole chain of events. Although she didn’t recall Jim she did recall the stories that he existed. Tish then became my advocate to make sure I had what I needed to take this incredible trip, and to do it safely.
Everyone around me thought I was crazy. Especially since I insisted I go alone…In some ways it was “my walkabout” I had to prove to myself and the wolf that I had a choice. My husband was supportive right from the start. After knowing me for over 30 years he knew there was little he could do to stop me. My daughter on the other hand was very hesitant. At the age of 19 when the wolf knocked at our door looking for her mother she found herself thrown into an early adulthood. Now five years later she feels she is the parent. It is her own personal way of taking charge of this beast. So I often let her take over, but not this time. This adventure was going to be mine. People’s reactions to this trip were often filled with surprised and shocking faces. Many came right out and said I don’t think you should go. What if you collapse just during the journey? You have been hospitalized four times in the past years for heart related issues. What if that happens over the Pacific Ocean where there are no emergency rooms to attend to you. My response was simple and very honest…”Then it was meant to be.” My doctor was an interesting reaction. In an email he wrote “GREAT! Good for you!” It was the most reassuring response I had received so far.
The flight was difficult I’ll admit. For a 22 hour plane ride my biggest fear was DVT (deep vein thrombosis; a blood clotting disorder that can cause a heart attack, stroke and even death). So I naturally spoke to my doctor ahead of time and he advised me what to do. I had been on aspirin therapy all ready so he wanted me to wear the proper socks, do the exercises on the plane, and walk every 1-2 hours, which I did. I was very prepared for all the physical aspects and limitations I would have. What I didn’t expect was the psychological toile it would have on me.
At midnight after a six hour flight, where I had been doing all that was suppose to in the form of exercise and hydration from Boston to Los Angeles I found myself alone and exhausted. With no one to help me with my bags I was walked three blocks through Lax to get to the international terminal. The weather in Los Angeles hit me like an oven door opening. The fatigue of having traveled for that many hours was wearing on me. I could hear the wolf shuffling behind me laughing in my ear…”You thought you could ignore me… to outsmart me …well you didn’t …I will always be close behind you!” I could feel his hot breath trickling sweat down the back of my neck. I wanted to cry. I didn’t have that luxury. I knew I couldn’t waist time or I would miss my connecting flight. I had to press on. What I was feeling in my body was equally scary. My heart was pounding and skipping beats. I been hydrating myself constantly so I knew I had enough fluid but with the sweat now poring off me I was no longer sure. Maybe it was anxiety. Something I have not had issues with before. Moisture was streaming down around my face from under my wig. The sunscreen was trickling down as well and stinging my eyes. Every joint in my body ached. And it also didn’t help that people were plowing through me nearly knocking me down in their own haste to grab a connecting flight. Then it struck me…My mother’s words began whispering in my other ear...as she pushed the wolf off me she said, “Debra tell him you don’t want to play …and then ignore him” My heart began to be filled with strength. There was a determination in my step that hadn’t been there. I was using the adrenaline that was pumping through my veins as something to help me and not something to be afraid of. When I arrived at terminal four at the international section of the airport I was hot and tired but also angry and unwavering. When I walked into the waiting area I was hit by another obstacle. There were no seats and the place was packed. Here I was all disheveled walking with a cane and the flare on my face turning a lovely shade of purple. It was my anger that gave me the courage to go up to a young man in his 20s and insist he let me have the seat that was occupying his luggage. I must have looked like a crazy person because he took one look at me and immediately obeyed.
When I boarded the plane bound for Brisbane I was so worked up. I knew this was an over tiredness that I had to get a handle on. I couldn’t allow this to get a hold of me. With a fourteen hour flight ahead of me I needed to calm the skips that were pounding my chest. I grabbed my water bottle and smiled consciously at my mother who now decided to sit next to me. I forced myself to drink and ate a protein bar I had in my purse. I then took a pillow that was on my seat and tried my best to ignore all the things around me and sleep. I must have looked a train wreck because the man next to me handed me his pillow and said, “Here it might be easier with two”. There were three screaming babies under the age of two all around me. Every time I started to drop off to sleep my body would jump awake with a start at their outburst. At one point I looked up to see the wolf leaning up against the galley wall just past the curtain. He was smiling and laughing at me…he said, “If you need to leave and abort this plane you better do it now.”
My mother whispered in my ear “Just close your eyes Debra, all you need is sleep.” The pain in my joints also played another important role in this mission. Every 1-2 hours my hips hurt so bad it forced me to get up and walk. On the first stretch of the walk I would see the wolf down at the end sitting in a seat and reading a magazine. He glanced up at me with an evil look. I would walk past him and turn to head back… at the other end was Mom waiting for me at my own seat. She had a look of pride on her face. It was a calming feeling knowing she was with me. I would then plop back down and sleep another 1-2 hours. My mother appeared again at dinner time. This time she took over the body of the man sitting next to me. He touched my shoulder gently to waken me and said I think you should eat something. Mind you he knew nothing of my condition we had not spoken other than him giving me the pillow (which I am now convinced were also my mothers doing). He could see by my face that I was in a bad way and out of the goodness of his heart he kept an eye on me. I was not hungry and was so tired that had he not waken me I would have slept through it; an act that would have resulted in a very bad outcome.
I arrived in Brisbane wrinkled and disheveled. But my journey was not yet over , I still had to get myself through customs and security. After a half hour of waiting in those lines I walked through the glass door and was met by Sonya, Shane and Annie. I was so happy I threw my arms around them and Annie handed me a cup of coffee. I wanted to cry with the feeling of pride and accomplishment that was racing through my body. I wanted to tell them what this actually means to me the difficulty I had and how I got through it. Instead all I said was…”I did it…all by myself.” They laughed and hugged me. Looking across the room while I was still in their embrace I saw a woman smiling over at us she nodded in my direction as she opened the door and left … it was my mother. Thank you Mom…I couldn’t have done it without you.

2009 speech at lupus fundraiser for JM"s RIDE

Lupus is the uninvited guest at a dinner party. It is the shadowy figure that has been lurking over your shoulder for many years until one day it stands into the light for all to see.
From a very early age I complained in the pedestrians’ office of joint pain. Like many Lupus patients’ before me it was diagnosed as “growing pains”. Then at the age of 8 I was told I had juvenile arthritis.
The first time I heard the term lupus I was 17. I was tested for it because of a history of sun sensitivity as well as joint pain and of all things hair loss….the result was negative. Although I didn’t put much worry in it, I was tested for it approximately every two years between the ages of 17-30. I would innocently laugh at my doctor of that time… not to waist the blood…because it was always negative. He never told me that someday it could end up positive…it was probably best he didn’t.
The second time I heard the term lupus was in hushed whispers among two woman having coffee. They were speaking about a friend. They said she wasn’t doing too well. Her kidneys were shutting down. I thought “good thing my tests were always negative”…I was 20
Mean while my medical history was beginning to read like a really bad daytime soap opera. By the time I had reached 30 I had an unusual number of unrelated surgeries, four miscarriages and five broken bones, not to mention all the original symptoms. On many occasions people would ask me why I had so many things wrong with me medically. It was an awkward question I never knew how to answer and my Doctors never did either, so I would just say, “Bad genes”
It was around the age of thirty I heard the term lupus again. Her name was Effie. She was young and sweet and was always so excited to see my daughter Lexi, who was 5 at the time. She worked with her brother who owned White Hen pantry in town. She was a slight thing, married but not very old. We got to know each other well and one day I asked her why she never had children. Her statement was direct…I can’t I, have Lupus. For the first time I asked, “What exactly is Lupus?” I never mentioned that I was tested for it so many times. She gave me a brief overview that didn’t really clear things up for me. And besides, I thought,…I can’t have that …I have a child. A few years later…Effie died. I like many who knew her I was distraught.
In 2006 at the age of 45, I was experiencing a personal stress that was a contributing factor in bringing this shadow that had been lingering over my shoulders into full light. In three weeks I had gone from a very busy individual with many physical interests to a person who literally could not walk. It was at this time I was diagnosed with Rheumatoid Arthritis. Although I was put on meds right away, nothing seemed to help. If anything I was getting worse. The pain was so unbearable that I found myself in a dazed semi-conscious state just to get through the day. Then in a conversation with a woman I had known for many years with Lupus, my suspicions became reality. Her medical history was absolutely identical to my own. She was the one that told me I could still get a positive test result after years of negative ones. It was at a crucial turning point. I had the feeling the doctor I was with was looking in the wrong places. I decided to take my health into my own hands. After looking on line, it became evident that I needed to be tested for Lupus again. It was also evident that the BWH was a leading hospital for lupus research. I made an appointment and within weeks I had a positive diagnosis.
We often hear of the wonderful things that the children of the Acorn do. But we don’t hear about the silent few that helped me endure this difficult period of my life. I’d like to thank the adult students of my school. You were loyal and went above and beyond. Through this awful illness bonds and friendships were made. You were all there for me…thank you.
This story is not only about the awful turn of events but it is also about the wonderful spirit of a young man who has been in my life for a long time and was a contributing factor in getting my spirit back. JM worked for us at the time and witnessed firsthand the rapid down fall this disease can have. He became my right hand when I didn’t have much use of mine. The first thing he did was handicap my house. He then raised all the seats I use at home…even the one in my garden. He taught with Jack and I and lugged all the equipment for our summer outdoor painting classes. He drove the van and entertained the little ones. He physically lifted me in and out of the car as well as help me stand and walk. He was the only other person besides Jack that was there when I couldn’t take it anymore and needed to cry. On those occasions he held my hand and didn’t say a word. But despite all that he did one thing that no one else could do…He made me laugh. He helped me see the irony in my predicament; a daring suggestion at best. We laughed when I would stumble and fall into a child; which in turn made the child laugh as well. We laughed at the ridiculousness of the outfits I had to wear. Of me being covered from head to toe, in the heat of the summer, not to mention the array of silly hats I’ve been forced to wear. It was through his lightheartedness that made me feel I was not different…in his eyes I was still the same person. This was a huge contributing factor in my stubbornness to try and gain back my mobility. Together he and I cried at my successes … no matter how small.
When JM told me that he was going to ride across the country in my name to raise money for lupus; I was flabbergasted. Surprised?...no…again together we cried. I want to thank the parents of this young man for the incredible job they did in raising him. And I want to thank them for sharing him with me all these years.
JM’s generosity was not only a good example for the younger kids at Acorn…It was contagious…To date the high school students have singlehandedly raised over $3000 for this cause…I want to take this time to thank them as well.
The reason I am giving you this history is simple. This disease has been lurking in and out of my life forever, and until I received a positive test…I knew nothing about it. Tonight, I would like to bring awareness to this illness.