From Robin Rites...
My niece Melanie is special to me for so many reasons. Mel is so slight in build that a strong wind might carry her away and she has a tiny voice that belies her inner strength. She uses that voice quite a lot, inserting the word, "like" at least two or three times in each sentence. What a joy it is to listen to her when she is being so animated! She is impossible not to love and she never seems to lack male attention.
Mel was diagnosed with lupus at age fourteen. Now twenty years old, her central nervous system is being affected and her fingers are starting to curl up from rheumatoid arthritis, which often accompanies lupus. As if her lupus weren’t enough, she is coping with two birth defects.
She is brilliant, talented, and in her second year of college. She has wonderful friends who also act as her support system. An artist and pianist, she is determined to continue her studies, in order to become a music teacher. She is also required to study conducting; an activity that keeps her on her feet for long periods at a time. While working on the background for a school play several years ago, she suffered a stress fracture in her foot from so many hours of standing. And on it goes, as so many people afflicted with lupus can relate to so well.
Her disease does not define her. As she faces all of her issues, she neither wants nor expects any special treatment from others and never puts her disease ‘out there’. She has her good days and bad days and says that she is fine, even when she is not. I have found this to be typical of the many lupus individuals that I have met.
Mel made many trips to Rochester for the treatment for one of her birth defects last summer. On her way back to Syracuse, we would meet at Borders for coffee. It was a lovely, quality time for both of us and an opportunity for her to open up to me about her lupus and other issues in her life.
With all of the possible complications that could be in her future, her mother, my sister-in-law, is very afraid for her, as any parent would be. Lupus does not discriminate. It strikes women, men and children and you learn not to take a ‘normal’ life for granted. As a family, that is one thing that we have learned.
Many people have a Mel in their lives – A shining example that moves us not to carry on about little aches and pains and remember how fortunate we are, just to be on the planet. I believe that Melanie was brought to us for a reason. We worry about her of course, but we also rejoice with her in her victories and hope that we would be as determined as she is in the same circumstances to live our lives like any other person, with the joys, heartaches and lessons learned. It’s impossible to know what is around the next corner for Mel, but I do know that whatever it may be, with a little help from her family and friends, she will handle it.
To volunteer at Lupus Foundation of America, Genesee Valley Chapter, Inc. call 585-298-2910 firstname.lastname@example.org
© 2007 Rudy K - 4/18/07