YEAR END REFLECTIONS

During the entire month of November, I heard people expressing how much they were thankful for. Every day they posted what that day’s worth was. They described the usual: family, friends, and in some instances health or fractions of good health which is often the case for a lupus patient. I read each one of these acclamations and wondered, “Is everyone really internalizing these thoughts? Are they mere lists that one feels obligated to write?” Certainly it is a wonderful gesture, but what is the weight of its worth. This got me to thinking about accomplishing grateful endeavors. How can you be grateful for your life if you have no task in which to prove it?  Or even better, what process have you gone through to try and accomplish a purpose?

Over the years, I have learned that words are often just words. I have also come to realize that to internalize a thought process means so much more. It is the difference between the “I wills” versus the “I haves”. Sometimes we do not reach our destined goals, yet the road that has led us there, if traveled diligently, has brought us to other destinations. It has landed us on the shores of our souls.

People often ask me how I am able to accomplish so much, and yet fight four autoimmune diseases. My first response has always been, because I am afraid. The thought of slowing down and stopping my world in its tracks scares me more than anything. In my mind, when that day comes, that’s when they should dig the hole.  I respect the wolf. I take my meds and listen to my body. Yet at the same time, ignore what the wolf believes I can no longer do. With this stubbornness I am much better off. Being a visual person, I always see myself as looking over my shoulder, and when the wolf is not looking at me, I run like hell to my next destination. Once I get there I laugh at him. This too, I see visually as me holding my belly and pointing.  Being able to visualize yourself as an individual who can accomplish many things is half the battle. Denial?...maybe. Stupidity?...sometimes. Rewarding?...always.

 This is not a new way of thinking for me. Having Rheumatoid Arthritis since I was a child, I had learned early on that life isn’t always easy. I have always been a project person. It is through these projects I learned the art of distraction. When I was 8 years old I saved bird feathers for two years in hopes of one day making wings to fly. My mother was appalled when she found them in my closet stuffed in a box. I had my first “business” when I was in high school. I reproduced album covers on canvas with oil paint for a local “head shop.” By the time I was 21 and living overseas on an army base I painted tasteful nudes for GI’s.  At the age of 25 I owned a photography restoration lab. This was before computers, when everything was done on the negative by hand. At the age of 33 I opened an art school. It is where my heart is today, eighteen years later. So when the wolf knocked at my door, I wasn’t about to bow down to him. It isn’t in my nature.

Seven years ago, before the wolf, I set out to give my daughter a graduation gift for her high school achievements. I could have given her the usual, a car or jewelry. But I was so proud of her; I wanted to give her my heart. On Thanksgiving weekend 2004, I started writing my memoir. She had not known the stories of my past. We did not have family to gather around a holiday table to relate them. In this way she was deprived. I wanted to give her the gift of my history and therefore hers as well. I finished the project with a 500 page chronicle of my life. I have led a very interesting life. I have traveled and lived abroad for several years. Alone in the world at a very young age I had experienced an epic existence of struggles and accomplishments, with often hilarious paths along the way. The point I was making for her is that you never grow up…one just keeps on growing, and it is the journey that counts more.  It is ok to be fearful, stupid and make mistakes along the way, because life is an adventure and this is how you learn.  After I completed this project, I felt it had done its job and set it aside. With the encouragement of some friends who had read it, this year I turned it into a novel. I added some characters and made it a complete story; soon it will be published. The process it took to complete this task was the most rewarding in my life thus far. The feeling it gave me, healed me. It was such a wonderful experience it drove me to want to tell everyone if you believe you can do something then you can, but arriving is not the goal.  It was not the finished book that was my reward, but the journey on which it took me.

So I ask you? What can you do today that you didn’t think you could because of illness or adversity? It doesn’t have to be a great feat. Small accomplishments are equally rewarding. With ever little stride that is taken you will find larger steps to be easily obtained. Sometimes a daunting endeavor is actually a series of smaller obstacles that are effortlessly hurtled. With my book, I chose to just write one chapter at a time. Every completed chapter gave me strength. Although I felt the prize would be its completion, it in fact was its process that gave me the most reward. As in C.P. Cavafy’s poem, Ithaca, which recounts a journey through many adventures that finally leads to the arrival in the harbor of Ithaca, the poet indicates that one must not rush ashore to claim your prize to find your treasure. The treasure is your journey and it is yours already. The best part of this type of thinking is the reward of self that one receives. Your life will seem to have the worth of your grateful yearnings. It drives you to want more. For me, the collected feathers that were never fashioned into wings; actually were. They began my flight that brought me here on this voyage today.

http://ninaalvarez.net/2007/05/03/poem-of-the-day-49/

Benlysta

It is 9 am November1, 2011. I am at the Brigham  and Women’s Hospital in Boston. I am getting my monthly Benlysta infusion. Benlysta is the first lupus drug approved in over 50 years. I am one of the fortunate patients that is getting it.  I am grateful for this drug because of how much it has given back to me. I had noticed the positive effects of it almost from the start.

The first infusion I had was a few days after July 4^th…Independence Day…it seemed so appropriate. To me this drug was a promise of a new and freeing life.

It has been a little over five years since I have been bitten by the wolf. In that time I have experienced a lot of trials and tribulations.  After the first 3 weeks of being inflicted, I was certain I was going to have a short life, today with the help of this new drug, I feel I have a chance.

Lupus affects everyone so differently. It is a mystery that even the top researchers and doctors can’t seem to figure out.  I am reminded of the day on an online support group when a mother wrote into say her 9yr old son was in intensive care. He was just diagnosed and she knew nothing about this disease. Typing from her lap top in his hospital room, she was desperate and wanted to talk to someone…anyone who had been through this. She wanted to be reassured that he was going to be ok. We all responded with positive thoughts and prayers and the encouragement from some that they had had it for 20+ years and have it under control.  We checked in on the thread daily. We asked how he was…after a week we received a response…her son was dead. It humbled us all. For those that were old timers…it wasn’t a surprise. For us new timers it was a wake up call to never take anything for granted again. We can joke about the wolf openly…yet we all know he commands respect.

 Five years later, what this new drug has done for me is to fight back in a battle that has had out dated ammunition and arms. It has surprised and stopped the wolf in his tracks almost from the first infusion.  Five years ago I had a walker…on good days a cane. I was bruised from head to toe and my feet and hands were twice their normal size. Traditional treatments of steroids, Plaquenil and Methotrexate got me under control. The swelling went down the bruising stopped and I could walk…although with a limp. Some may have been satisfied with that and lived their life accordingly. Not me. I wanted more. But more importantly than wanting more for me, I wanted more for all lupus patients. For those who were worse off than I ever was. That is why when I found out about this new drug, I wanted to be a part of it. Benlysta is not for everyone. It doesn’t have the same results for severe Lupus. Believe it or not despite my condition I was still considered a mild case.  I on the other hand was the perfect candidate for this treatment and after reading the findings knew it. I not only had SLE (systemic lupus erythematosus) but also DLE (discoid lupus erythematosus) I approached my doctor and he confirmed my candidacy.  I was one of two patients he had that fit the criteria and the other one was looking more and more like he wasn’t. In my mind I was the only one to make the stand…to fight for the need. I asked my doctor, “If no one took this drug what would happen to the funding?” He said, “The funding would slow down drastically.” I didn’t need any time to think about it. I immediately said, “Ok, sign me up! Even if it does nothing, it is a way for them to see that.”

Five months later here is what I have experienced. First of all I no longer have joint pain. This is something I have had since the age of eight when I was diagnosed with Juvenile Arthritis.  Getting up in the mornings had always been a struggle for me since childhood. My hips and knees would often make cracking noises as if I were slamming two china plates together. Many mornings I would lose my footing and fall on the floor or crash into something in the room. Along with this lack of joint pain I now no longer limp. Can you imagine after all these years being able to have good and graceful posture?  I used to be very athletic when I was younger I rode my bike a lot; sometimes sixty miles a day. This was to combat the possibility of damaged joints by building the surrounding muscles. When the wolf bit me; that had to go.  Today because of Benlysta, I can ride my bike again.

When the wolf hit I found driving to be a challenge.  My perceptions were off. I hit telephone poles while backing up. I would also get confused as to where I was, even in the town I grew up. My strength to shift the car was so weak that I often ground the gears.  My family sat me down and decided that for everyone’s safety, not just mine, it was best I stop driving. In my heart I knew they were right, so I did.

Today thanks to Benlysta I am driving again. My brain fog is gone. My reaction time is back .and I have not misjudged where the car is when parking. And I might add I am driving a fifteen passenger van!

The last thing that is very noticeable about the benefits of Benlysta is my rashes. I also suffer from discoid and have approximately five different identified rashes on my body. My nickname among my Lupus friends was always Debra Itchy Highberger, because I was plagued with it the worst. Well I am here to say the rashes have reduced by 40%. The ones on my arms and chest that were always so torturous and inflamed are now just a quiet remnant. The malar rash on my face is almost gone…some days it isn’t even there at all. The discoid seems less active although so far the scars are still noticeable. My hair seems to be growing back as well, and for the first time in my life I am seeing hair on my legs.

All of this tells me that the quality of my life has improved greatly.  I am much more active and seem to be slightly less sun sensitive. I can work more hours and no longer need a nap every day. I am now back as a member of society.  I know this drug is not for everyone, but for me, it has been a life saver. It is an expensive drug. The average cost when I last checked was just under $40,000 per year. I have insurance, thank goodness, that pays for it. I worry about those who don’t.

But more than that, I am concerned about my friends in the UK that are not able to have the opportunity to even try this drug. According to the NICE (National Institute for Health and Clinical Excellence) the cost effectiveness of this drug does not make it worth it. In other words many in the UK feel this means “a lupus patient will eventually die of this disease so why prolong the inevitable at such an expense.” As a person who has been without health care in the past with meds alone costing well over $2000 per month, and other incidentals such as tests and doctor visits costing roughly  $3000 per month; I am all for universal health care. Just because you can’t afford it, doesn’t mean they can choose that you are the one that will die. But as a person with a chronic illness, what I am witnessing globally about such care scares me. Until universal health care understands it is the doctors that should govern a patient’s care and not the job of big business, I am afraid it will be harmful for the chronically ill.  We all need to act on this and bring awareness to this fact.

There is, however, something we can all do right now. We need to stand up in this world and be counted together. I first agreed to take this drug because of the possible benefits it will have to furthering research, so that someday they will find a cure for the five million sufferers’ world wide. We need the rest of the world to come on board as well. Please do your part and sign the petition to help others like me.  http://online.wsj.com/article/BT-CO-20110930-703836.html  (wall street journal article)

http://www.thepetitionsite.com/1/cover-Benlysta/  sign the petition

ARE YOU A VICTIM ?

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.

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.

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.

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.

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.