Waves to everyone, thank you for coming back to my blog to read more about the permanent mask which I call, Lupus. My last blog post provided some fast facts about the disorder and provided you some insight on why awareness is important.
May is.... LUPUS AWARENESS MONTH
This month is very dear to me for many reasons, (1) I am a BIG advocate for Lupus and finding a cure and (2) I have two members of my family who are stricken with this mask: my aunt and my brother, Will. Yes, I hate to say it, it is a male with Lupus. Actually was a surprise to me as well. Let me tell you about the story how I was introduce to the mask. In the fall of 2005, I was completing my clinical for occupational therapy at the Sparks Clinics. My brother was at St. Vincent Hospital getting a kidney biopsy. He was in the hospital for having seizures and after a kidney panel they noticed something was not right, protein. After I left my clinics, I went straight to St. Vincent to sit with him until my parents were able to come. Knock Knock, at the door.. it was the doctor with the results. The look on the doctor place is a face that I would never forget. Sighs.. William, your kidney biopsy came up with .... (thinking to myself, please do not say it).. LUPUS and went into the stage he was in (yes, there are stages of Lupus).. eek! I am sitting in the corner tearing up thinking to myself should I cry or hold it in. Well, I did have to excuse myself from the room to call my parents. My mother was on her way to hospital and when I told her the news she almost had a crash due to the shock. I think we were all in shock. That day, I have to say is one that I will never forget. I started to think about all the symptoms that he had for the past 10 years: the heart issues, the fatigues, the skin rashes.. all started to make sense. It just was not connective tissue disorder or pericarditis, it was Lupus. After the diagnosis for him, it was intense and he started to be isolated, totally broke my heart. I know there are times when I want to shake him, but love this person no matter what. Seeing him like this was not my brother or the person I knew, but I had to learn how to deal with it. The hospital stays got longer and more frequent and the mask decided to move to other areas of his body. One of the worse feelings I had during this time was the first time he had to receive chemo to stop the progression. I have to say sitting a room and thinkig of that moments again brings goose bumps. I did not want to graduate with my degree because my brother was not there receiving his bachelors (I was in graduating grad school and he was graduating with his bachelors at the same time). After his diagnosis, I realized no one ever mentioned the mask before for one main reason, it is NOT common in men (roughly reported 10% of men, not sure about the unreported).
Now back to my thought.. If there was more awareness of this mask... I think people would realize the quality of life of the people who live with this on a day to day basic. It is not easy, I can tell you that. To end this post, I want to leave you with two things. One, November 2005, I, Tosha Gaines, became an advocate for Lupus Awareness in order for me to cope in honor of my brother and Two... I want to leave you with a quote that I thought was fitting for this post...
“Masquerades disclose the reality of souls. As long as no one sees who we are, we can tell the most intimate details of our life. I sometimes muse over this sketch of a story—about a man afflicted by one of those personal tragedies born of extreme shyness . . . . . . who one day, while wearing a mask I don’t know where, told another mask all the most personal, most secret, most unthinkable things that could be told about his tragic and serene life. And since no outward detail would give him away, he having disguised even his voice, and since he didn’t take careful note of whoever had listened to him, he could enjoy the ample sensation of knowing that somewhere in the world there was someone who knew him as not even his closest and finest friend did. When he walked down the street he would ask himself if this person, or that one, or that person over there might not be the one to whom he’d once, wearing a mask, told his most private life. Thus would be born in him a new interest in each person, since each person might be his only, unknown confidant. And his crowning glory would be if the whole of that sorrowful life he’d told were, from start to finish, absolutely false.” ― Fernando Pessoa
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