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Here's my story:
Systemic Lupus Erythematosus, "SLE" or "Lupus" for short, is what I call an "autoimmune disorder." In its active state, the body's immune system attacks the body's own vital system (organs, blood, skin, etc.) It is an illness that affects many individuals of all backgrounds, especially women. It is not contagious, but it is a lifelong condition treatable by medication.
I noticed that in sharing the concept of this project and my experience with the illness—a new world opens up with the people I talk to, regardless of their cultural background. In conversations with the people who know of someone ill with Lupus, a sense of confusion is frequently present. They do not fully understand what it is or what is happening with the patients. In other conversations, the people who have it are ashamed of being ill and leading unfulfilling lives. I hope to inspire them to value what they have and (pardon the cliché,) to live life to its fullest—by not being constrained by an illness. If no action is taken, people attempt to hide their illness, continue living in despair with resentment, and feel like an outcast rather than appreciating life and pursuing their dreams. Other individuals will continue to misjudge them without compassion to their health issues from the outside looking in.
I also discovered that one of my friends lost her grandmother to Lupus because she was never correctly diagnosed until it was too late. It destroyed her body system and its ability to function. It is not a lethal illness unless left untreated. Due to the lack of awareness, however, many health care professionals overlook the signs and symptoms which could be detrimental to their patients. That's the tricky thing about Lupus. The symptoms are very similar to other illnesses and even colds. Everyone should be informed and aware of what's possible out there other than cancers and viruses. I hope to inspire the public to pay more attention to their well-being through increased awareness regardless of Lupus, and this project would be my first step.
This project is personal to me because I have been through being misdiagnosed with Lupus since March of 1999 during my junior year at Alhambra High. I became very anemic and my kidneys were under attack. I was very fortunate to have caught it soon enough before and any real damage took place. As a teen about to enter a university setting in a year, my dreams were killed off and the world came crashing down on me. Drastic lifestyle changes were in effect. I had to undergo multiple treatments and rely on medication (with visible side effects). Two of the worst medications I've been on were Prednisone (steroids) for about 4 years (became bloated/"puffy" in unusal places w/the moon face), and on Cytoxan (chemo by IV) for 2 years worth of medication spread out in 3 years (I was nauseated for days with this stuff.) You can only begin to imagine how sick I was!
I spent many years being kept to myself in trying to hide my illness as if I were not “normal” and never will be. I wasn't able to talk about it with my friends or family very much since they couldn’t relate to me. They knew as much as I did on what was going on with me, wasn’t much at the time. I felt that no one understood what I was going through, and there was no room to love myself or others. I was severely depressed and felt incompetent to have an illness where my own body was attacking itself. The illness was simply ridiculous! I was afraid to return school and life because I felt excluded by others, avoided because of my health, and I looked like a monster from the side effects of steroids. Thus it took a heavy toll on me emotionally. I was extremely embarrassed to let others know what I was experiencing, and that I was the first one to have anything like this condition in my family. Thankfully, my family was there for me regardless. One of my aunts encouraged and reintroduced fine art to my life as my expressive outlet, which I developed a sense of self-confidence through. Picking up musical interest only enhanced the journey to where I am today. Now I am ready to bring the three together and share it with the world.
The ultimate goal of my project is to inspire increased awareness of lesser known health issues amongst the public, as well as spotlighting undiscovered artistic and musical talent where there has been a lack of appreciation for. It will definitely motivate an active unity between communities through culture and health.
THANK YOU for reading the insight on my experience. I love you guys.
-V
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