Tuesday, June 28, 2011

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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