One Patient's Positive Perspectives

The girl next door had lupus

The girl next door had Lupus.  We didn’t know it at first, but one day a few years after my husband and I were married, we were visiting my folks in California and my mother told me about Julie’s illness.  Later that week, we walked over to the house next door to see Julie while she stopped in to see her mom.  Julie and I sat down with our mothers in their kitchen and shared a cup of coffee and a long catch-up chat. Julie showed us the discolored rashes on her face, and told us about some of the troubles she had with lupus.

The somber mood of that conversation about lupus haunted me.  Lupus had become the great tragedy of Julie’s young life!  It was not too much later that I was also diagnosed with lupus.

front yards where we played together

trying to beat each other at jacks

When Julie and I were both children, we never worried about things like getting lupus.  We spent our time playing with dolls on each others front porch steps, playing hop scotch, shooting marbles and trying to beat each other at jacks.  Sometimes we would get all the kids together and start singing songs with our hair brushes as microphones, pretending to be the music stars we wanted to emulate.

Once in awhile, older girl who lived across the street would round up all the neighborhood kids, including her 11 younger brothers, and coax us all to act out the play scripts she had written.  Our neighborhood playwright’s front porch also happened to be the best “stage” on the street.

Julie had a sister one year older than me, my sister was two years older, and Julie was one year behind me.  Our ages made us all perfect playmates, except for the brief periods of family kid feuds that would spawn from time to time out of our corporate immaturity.  There were 9 kids between both of our large families, and on summer days, we would all set out on foot to the public swimming pool at the high school.  It was there Julie and her older sister taught me and my older sister how to swim.

both diagnosed with lupus

I had lupus arthritis symptoms as a child, pleurisy, mouth ulcers, and rashes, but never noticed if Julie also showed signs of it earlier in her life.

The stars we emulated in our front porch “concerts” were our favorite 60’s bands the Beatles, the Beach Boys and the Monkeys, and our favorite female singer Nancy Sinatra.  We each took turns performing our loud unaccompanied renditions of songs like “I Wanna Hold Your Hand” and “These Boots are Made for Walking” on our front porch “stages,” while all the other kids sat on the grass as our audiences.  If you were not around during the 1960s, these musical details will probably mean nothing to you.  But, I can even remember watching the famous “Ed Sullivan” TV show in the early 60’s when the Beatles had just come to America from England, when their performance was broadcast on live black and white TV.

I recently viewed this Lupus Foundation of America lupus awareness video by Julian Lennon, the son of singer and song writer John Lennon of the Beatles.  Julian tells about his young childhood friend, Lucy, that died from lupus in 2009.  Lucy was the inspiration for the Beatle’s hit song “Lucy in the Sky with Diamonds.”  Julian Lennon is a Global Ambassador for the Lupus Foundation of America and benefactor of the St. Thomas Lupus Foundation in the UK.

In Julian Lennon’s video, he tells about his connection to lupus and his friend who had lupus, Lucy Vodden.

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