Just the word victim brings chills down my spine, and anger to my heart. Being considered a victim has never been something that I have ever wanted in my life. And I am happy to say that I have spent all of my years refusing to be one. Some people seem to need the title of victim. I am sure it is rooted in some deep need to be loved. To be consoled; for some reason being the victim is their only way to get this…how sad. These people let the world around them control how their day will be. They let others do the same. They have been stunted in human psychological growth on some level. I am not saying there are no victims in this world. Certainly those that have been beaten for no reason or starve to death from circumstances out of their control certainly are…but the key word here is control. We are all in control of our own destinies on some level. And it is realizing this fact that takes you from victim to victor.
These are two of the definitions from the Marriam Webster on line dictionary. VICTIM : a) one that is injured, destroyed, or sacrificed under any of various conditions b) : one that is tricked or duped
People who have a chronic condition such as lupus certainly feel victimized by the wolf. But having been victimized is very different from allowing yourself to be a victim. When the outside force of illness, such as lupus, is imposing itself on you, you don’t have the control to stop it. What you do have is control in how you will deal with it. Only you have control over your mind, and the way in which you perceive yourself as this victim. Pain for instance; it is a very difficult thing to deal with. It sometimes feels as if it controls your life. When I first came down with this illness I could not walk. I could not dress myself. I could not feed myself. My entire body was under attack and every joint and muscle was inflamed and swollen. But through the adversity of this situation I was put in; I fought back. Every day I searched for answers to make it stop. I broke it up into two categories. The first was finding the right medical treatment for the long term. The second was finding how I can help myself on a daily basis to function. The medical info was easy compared to the daily. For the daily living I tackled one issue at a time. I got a walker and exercised with it for ten minutes every hour starting at 3am – 11am…by noon time I was able to hobble without it. I found this to be a painful yet necessary part of my daily living. To get dressed I needed the help of my husband. I hated that and it would anger me. Every day he would scold at me when I would inevitably get caught in my tee shirt, and have to find him, somewhere in the house, to release me. He would tell me, “Debra, just let me do it for you.” I always responded back with an adamant, NO! I am going to figure this out.” We both celebrated with tears the first time I was successful. Feeding me was the same. My hands were so swollen that I couldn’t bend my fingers. I dropped everything I reached for. To paint I strapped brushes to hand braces, so that wasn’t an issue. But every time I ate I would make such a mess. I would spill everything down the front of me and all over the table around me. Cutting my meat was the worst. At the dinner table my family would watch in silence as I struggled with this. They always waited until I was to the point of anger and frustration. They knew that through that anger someday I would find the strength to concur this…and I eventually did. I CHOSE not to be the victim. And I am happy to say that through this entire disease I never have been. It would have been easier to just let them take over for me: my work, my life. But what kind of life would that have been? I chose to be the victor.
This is why when I was recently attacked by an on-line bully; I chose not to be the victim. Had he actually known me and how I fight for quality in my life he would have seen how useless his efforts would have been.
He was an individual that got angry at me because I had asked him not to advertise his store on a lupus support site. I was doing a favor for a friend and monitoring the site for a day while she was at work. It was stated very clearly in the rules at the top of the page that there was to be absolutely no advertising or self promoting. I asked him in a non threatening way to please remove his link. He then attacked me verbally. Calling me names and assaulting my personal integrity. Claiming I have never done anything for raising lupus awareness.
This man was claiming to be a nonprofit business selling lupus charms, music and art. Ignoring his ridicules claims towards me, I asked him which state he applied for his nonprofit, and does he have the proper paperwork to back it up. He refused to answer me. I asked him how much he has donated and to whom. He once again refused to answer. These are questions that are legally required to be answered by all non profits when asked. It is the law. Instead he attacked me further. Personally calling me names and accusing me of trying to shut him down. At that point I simply stated, “The rules of the page are no advertising for personal gains…please remove the link.” I then left to go to work. The whole incident left my mind and I didn’t think about it again.
Five months later, he posted my picture with someone else who is very dear to me. He libeled us across the internet on various websites and Facebook pages. I chose to rise above this childish behavior and ignored him. I never responded to his attacks, and I did not lower myself to his level and post anything negative about him. Other than a select few, my close personal friends, at home, didn’t even know this was happening to me.
This whole ordeal got me to thinking. He tried to victimize me by, in fact, making himself the victim in the eyes of others. He was gaining pleasure by telling everyone I was somehow hurting him. This man does not have lupus…he claims his wife does. So why would he want to be considered a victim? He seems to thrive off people feeling sorry for him. The man is obviously sick on some level emotionally. At a certain level I did feel sorry for him, just not in the way he would have liked. I felt this behavior was not healthy for him. So I chose for his sake not to feed into his victimization he so seems to need. Hopefully if he reads this, he will look inside and realize for the sake of his poor wife that has to live with him, and deal with lupus, that this is not healthy for her as well. He is a very angry man and I cannot imagine living with someone like that when I myself do not feel well. His anger is misguided and I hope she realizes how selfish he is actually being by allowing this behavior to be in their lives. I hope too that she realizes she has control over her own life and shouldn’t feel she has to be a part of his outbursts. If she chooses to live like this…than she is allowing herself to be a victim as well.
It can be easy for one to become hurt and angry when one is attacked by another. Yet it is the stronger mind that understands this person to be weak and therefore one can’t help but pity him
I was humbled by the support I received by hundreds of people who had seen what this man had tried to do to me. They are readers and friends I never would have known had, had it not been for this situation. Thank you all so much.
Thursday, September 29, 2011
Wednesday, August 24, 2011
Desire: The Root of my Existence
We are all born with it. Some use it to its full potential …others not so much. For some poor souls they lose it later in life. I am talking about the feeling of desire.
Desire comes in many forms. It can be physical, emotional or spiritual…not necessarily in that order or in exception. As a child our desires are of a physical nature. The desire to eat, sleep and be held; funny that those desires never seem to leave us. Instead we have added desires as we grow. The desire to succeed, for some this means to be the best in everything they do. For others it means to just get along peacefully. But what does it mean to the chronically ill that is faced with daily challenges? Desire and succeeding takes on a whole new meaning, it is mixed in the soup of the desires we are born with.
Before Lupus I had the desire to be successful in business. To be accomplished as an artist, mother and wife. Today my business is 18 years old and despite this bad economy doing ok. I have had shows of my artwork around the globe. And my writing has taken a similar path. My daughter is grown and someone I am very proud of. I have been married for 20 years and although like everyone we have our ups and downs I still picture myself with him until the end. On paper I have fulfilled all my life dreams. You would think that that is where the yearning would stop…but it doesn’t. So I ask myself today and I would like you to do the same…what are your desires? Have you fulfilled all that you want or are there areas in your life that have been left undone?
My desire today is to live a long life. Not too much to ask for. Most people don’t even think about such things. Unfortunately with the lupus patient this is always on the forefront of our minds. We all know that one blood clot could make us lose this battle by the time we hit the floor. The key is to take this desire to live and use it to our benefit and not as an image of doom and gloom. With some of the meds we are forced to take that can be difficult as they seem to push us into that kind of thinking. So I say step back and ask yourself…is the thought of death hindering my course of living, or is it enhancing it? If you find that the thoughts of death enter your mind at least once a day…it is hindering it. When I was first diagnosed I was put on a lot of steroids and antidepressants. This was because the doctors felt that I was taking the news too well. They were sure it was going to hit me emotionally hard at some point. I protested against the antidepressants but they wouldn’t budge; so I took them. I have to say on the first day it gave me a kind of numbing effect. One I wasn’t sure I liked. After a week I didn’t feel it was doing anything. But then after about a month I found myself thinking of death at least 20 times a day and I also lost my desire to move forward in my life. I have to say I was not suicidal. I was basically just existing and waiting for the “end”. I had a suspicion it was the antidepressants because of all those commercials you see on TV. So without telling my doctors I slowly weaned myself off them. And in very quick order my sense of desire came back. I felt somewhat reborn so to speak. I spent hours in my garden. I started painting again. And I started writing.
This got me to thinking that desire is more than a want. It is an important human element that is necessary for our well being and growth. Imagine a life without the propelled energy of desire. It would be merely an existence; and probably a boring one at that. Unfortunately with desire also comes decision making; sometimes in your favor and sometimes not. I have found that desire is the turn in the road in which we choose.
I know what you’re thinking…How does one follow their desires if they are plagued with fatigue? This illness has not only a huge fatigue factor but many also have it accompanied with fibromyalgia. Well you need to do the double “P” push yourself yet pace yourself. The pushing part is emotionally because with fatigue also comes a mental defeatist attitude. You need to push those thoughts aside and move past it. Don’t get caught up in the why me attitude…the pace your self is the physical component. It is a wise lupus patient that understands the reason we have this disease and the fact that our bodies are working two times as hard as the average just to fight the supposed flu it feels we have. So I suggest lists and realistic goals. What must be done is to be a strategist for your day, and the energy level you want to spend.
As I look out my back door I can see the effects of this. My garden is terribly over grown. I have a great desire to go and sit in it and weed. But with the sun where it is today I know I will have to wait until it is cloudy and then put on sunscreen to do it. My desires are simple these days. Long gone are the times of wanting to be a successful and world known artist. Instead I want to feel peace and fulfillment in all do. I don’t have the need to “leave something behind” although as an artist my work will always be out there. Instead I desire to feel accomplished at the end of the day that I did all I could do to the best of my ability, and have the mind to know what is important and what is not. Most importantly I still have this inner dialogue…which is my real desire.
Desire comes in many forms. It can be physical, emotional or spiritual…not necessarily in that order or in exception. As a child our desires are of a physical nature. The desire to eat, sleep and be held; funny that those desires never seem to leave us. Instead we have added desires as we grow. The desire to succeed, for some this means to be the best in everything they do. For others it means to just get along peacefully. But what does it mean to the chronically ill that is faced with daily challenges? Desire and succeeding takes on a whole new meaning, it is mixed in the soup of the desires we are born with.
Before Lupus I had the desire to be successful in business. To be accomplished as an artist, mother and wife. Today my business is 18 years old and despite this bad economy doing ok. I have had shows of my artwork around the globe. And my writing has taken a similar path. My daughter is grown and someone I am very proud of. I have been married for 20 years and although like everyone we have our ups and downs I still picture myself with him until the end. On paper I have fulfilled all my life dreams. You would think that that is where the yearning would stop…but it doesn’t. So I ask myself today and I would like you to do the same…what are your desires? Have you fulfilled all that you want or are there areas in your life that have been left undone?
My desire today is to live a long life. Not too much to ask for. Most people don’t even think about such things. Unfortunately with the lupus patient this is always on the forefront of our minds. We all know that one blood clot could make us lose this battle by the time we hit the floor. The key is to take this desire to live and use it to our benefit and not as an image of doom and gloom. With some of the meds we are forced to take that can be difficult as they seem to push us into that kind of thinking. So I say step back and ask yourself…is the thought of death hindering my course of living, or is it enhancing it? If you find that the thoughts of death enter your mind at least once a day…it is hindering it. When I was first diagnosed I was put on a lot of steroids and antidepressants. This was because the doctors felt that I was taking the news too well. They were sure it was going to hit me emotionally hard at some point. I protested against the antidepressants but they wouldn’t budge; so I took them. I have to say on the first day it gave me a kind of numbing effect. One I wasn’t sure I liked. After a week I didn’t feel it was doing anything. But then after about a month I found myself thinking of death at least 20 times a day and I also lost my desire to move forward in my life. I have to say I was not suicidal. I was basically just existing and waiting for the “end”. I had a suspicion it was the antidepressants because of all those commercials you see on TV. So without telling my doctors I slowly weaned myself off them. And in very quick order my sense of desire came back. I felt somewhat reborn so to speak. I spent hours in my garden. I started painting again. And I started writing.
This got me to thinking that desire is more than a want. It is an important human element that is necessary for our well being and growth. Imagine a life without the propelled energy of desire. It would be merely an existence; and probably a boring one at that. Unfortunately with desire also comes decision making; sometimes in your favor and sometimes not. I have found that desire is the turn in the road in which we choose.
I know what you’re thinking…How does one follow their desires if they are plagued with fatigue? This illness has not only a huge fatigue factor but many also have it accompanied with fibromyalgia. Well you need to do the double “P” push yourself yet pace yourself. The pushing part is emotionally because with fatigue also comes a mental defeatist attitude. You need to push those thoughts aside and move past it. Don’t get caught up in the why me attitude…the pace your self is the physical component. It is a wise lupus patient that understands the reason we have this disease and the fact that our bodies are working two times as hard as the average just to fight the supposed flu it feels we have. So I suggest lists and realistic goals. What must be done is to be a strategist for your day, and the energy level you want to spend.
As I look out my back door I can see the effects of this. My garden is terribly over grown. I have a great desire to go and sit in it and weed. But with the sun where it is today I know I will have to wait until it is cloudy and then put on sunscreen to do it. My desires are simple these days. Long gone are the times of wanting to be a successful and world known artist. Instead I want to feel peace and fulfillment in all do. I don’t have the need to “leave something behind” although as an artist my work will always be out there. Instead I desire to feel accomplished at the end of the day that I did all I could do to the best of my ability, and have the mind to know what is important and what is not. Most importantly I still have this inner dialogue…which is my real desire.
Saturday, July 23, 2011
IT TAKES A SPECIAL MAN TO LOVE A LUPUS LADY
What are the qualities of man that has the desire to take care of a woman with an illness? Certainly there are some men that find themselves in the position where their loved one comes down with this long after they met. But what about the man that falls in love with a woman who has lupus? The daily grind is medical expenses, endless supplies of pills, and doctor appointment. But there is one area of this illness that is in the forefront of every woman with lupus. It is a subject discussed among themselves behind closed chat doors. It is something they cannot avoid; they see it on a daily basis. It is the one thing and often the first thing the wolf has taken from them. And it is not a subject that can be easily understood with a Google search. It is time this subject be brought to the surface out of the chat rooms and into the living rooms. I am talking about their feeling of being desirable.
In the words of “Snow White”…”Someday my prince will come.” These are words little girls around the world have heard sung for a half century. Over the years talking to woman that I have known in my life that phrase to them was misleading. Life isn’t about being swept off your feet by some handsome stranger. I am sure some have found their “prince”. For everyone the definition is different as to what he looks like and how he acts. But all lupus ladies know…her particular “prince” must be someone very special.
As young girls we are learning who we are. Not yet fully grown we are developing into the women we will become. I believe all women are born with the power of beauty. What is beauty anyway? Is it a way one looks or perhaps acts? According to some studies made it is about the asymmetry of a face. It is even found in the animal kingdom that asymmetry is what will attract one mate to another. It is also in the esthetics of art throughout history that great works of art are defined through the balance of asymmetry. So how does this relate to the beautiful woman? As one gets older we as humans of a higher intelligence than animals realize that beauty is more than just looks. It is a way we carry ourselves…the accomplishments we have made and most importantly it is our heart. To develop into the woman that feels confident, loving, and fulfilled takes years. Some will even say they weren’t fully a woman till they became 40. When life seemed to make sense and the assertiveness of their confidence really takes hold. Unfortunately that is often the age the wolf will show his ugly teeth. When this happened to me I felt jipped. I thought, “Hold on…I have waited years to find this confidence. No one said you could change the rules! And in the process change me completely” But did he?
If media and children’s books have told us as woman, every day that beauty is a physical thing; how do men see it? Certainly there is always their “fantasy woman” We all know what that means and it is not in need of definition. But in reality…it is not reality. Eventually, like women, men come to realize this as well. But what about the lupus lady that has to deal with disfigurement and difficult changes in her appearance? She doesn’t want to be a beauty…she just wants to be accepted. For the woman with lupus without a mate how does she find that special man? She doesn’t…he finds her. He will look past her ailments and through her inadequacies of physical beauty and see her heart. And suddenly in his eyes she is the most beautiful woman he sees. He wants to be near her to feel her energy and love. To marvel at her strength everyday she goes into the battle. He cannot think of being with anyone but her. He will even sometimes wonder if he could be so strong. It is in this way in the lupus ladies world, beauty is redefined.
So how does she get to this point? It can only be obtained in one way…with confidence, and knowing that inside you are still the same person. The wolf can mess with the physical aspects of your heart but he can never take the love that you can have for yourself. Because to love someone else; you must first know it inside. When you walk into a social gathering, hold your head up high and smile. Extend yourself to be in the real world. You need to show people your heart first and they will never see the wolf marks. And that “prince” may actually be there.
In the words of “Snow White”…”Someday my prince will come.” These are words little girls around the world have heard sung for a half century. Over the years talking to woman that I have known in my life that phrase to them was misleading. Life isn’t about being swept off your feet by some handsome stranger. I am sure some have found their “prince”. For everyone the definition is different as to what he looks like and how he acts. But all lupus ladies know…her particular “prince” must be someone very special.
As young girls we are learning who we are. Not yet fully grown we are developing into the women we will become. I believe all women are born with the power of beauty. What is beauty anyway? Is it a way one looks or perhaps acts? According to some studies made it is about the asymmetry of a face. It is even found in the animal kingdom that asymmetry is what will attract one mate to another. It is also in the esthetics of art throughout history that great works of art are defined through the balance of asymmetry. So how does this relate to the beautiful woman? As one gets older we as humans of a higher intelligence than animals realize that beauty is more than just looks. It is a way we carry ourselves…the accomplishments we have made and most importantly it is our heart. To develop into the woman that feels confident, loving, and fulfilled takes years. Some will even say they weren’t fully a woman till they became 40. When life seemed to make sense and the assertiveness of their confidence really takes hold. Unfortunately that is often the age the wolf will show his ugly teeth. When this happened to me I felt jipped. I thought, “Hold on…I have waited years to find this confidence. No one said you could change the rules! And in the process change me completely” But did he?
If media and children’s books have told us as woman, every day that beauty is a physical thing; how do men see it? Certainly there is always their “fantasy woman” We all know what that means and it is not in need of definition. But in reality…it is not reality. Eventually, like women, men come to realize this as well. But what about the lupus lady that has to deal with disfigurement and difficult changes in her appearance? She doesn’t want to be a beauty…she just wants to be accepted. For the woman with lupus without a mate how does she find that special man? She doesn’t…he finds her. He will look past her ailments and through her inadequacies of physical beauty and see her heart. And suddenly in his eyes she is the most beautiful woman he sees. He wants to be near her to feel her energy and love. To marvel at her strength everyday she goes into the battle. He cannot think of being with anyone but her. He will even sometimes wonder if he could be so strong. It is in this way in the lupus ladies world, beauty is redefined.
So how does she get to this point? It can only be obtained in one way…with confidence, and knowing that inside you are still the same person. The wolf can mess with the physical aspects of your heart but he can never take the love that you can have for yourself. Because to love someone else; you must first know it inside. When you walk into a social gathering, hold your head up high and smile. Extend yourself to be in the real world. You need to show people your heart first and they will never see the wolf marks. And that “prince” may actually be there.
Tuesday, June 28, 2011
IDENTITY
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.
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.
TALKING TO CHILDREN ABOUT CHRONIC ILLNESS
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.
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.
IN SEARCH OF TIME
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.
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.
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