Sunday, June 26, 2011

2009 speech at lupus fundraiser for JM"s RIDE

Lupus is the uninvited guest at a dinner party. It is the shadowy figure that has been lurking over your shoulder for many years until one day it stands into the light for all to see.
From a very early age I complained in the pedestrians’ office of joint pain. Like many Lupus patients’ before me it was diagnosed as “growing pains”. Then at the age of 8 I was told I had juvenile arthritis.
The first time I heard the term lupus I was 17. I was tested for it because of a history of sun sensitivity as well as joint pain and of all things hair loss….the result was negative. Although I didn’t put much worry in it, I was tested for it approximately every two years between the ages of 17-30. I would innocently laugh at my doctor of that time… not to waist the blood…because it was always negative. He never told me that someday it could end up positive…it was probably best he didn’t.
The second time I heard the term lupus was in hushed whispers among two woman having coffee. They were speaking about a friend. They said she wasn’t doing too well. Her kidneys were shutting down. I thought “good thing my tests were always negative”…I was 20
Mean while my medical history was beginning to read like a really bad daytime soap opera. By the time I had reached 30 I had an unusual number of unrelated surgeries, four miscarriages and five broken bones, not to mention all the original symptoms. On many occasions people would ask me why I had so many things wrong with me medically. It was an awkward question I never knew how to answer and my Doctors never did either, so I would just say, “Bad genes”
It was around the age of thirty I heard the term lupus again. Her name was Effie. She was young and sweet and was always so excited to see my daughter Lexi, who was 5 at the time. She worked with her brother who owned White Hen pantry in town. She was a slight thing, married but not very old. We got to know each other well and one day I asked her why she never had children. Her statement was direct…I can’t I, have Lupus. For the first time I asked, “What exactly is Lupus?” I never mentioned that I was tested for it so many times. She gave me a brief overview that didn’t really clear things up for me. And besides, I thought,…I can’t have that …I have a child. A few years later…Effie died. I like many who knew her I was distraught.
In 2006 at the age of 45, I was experiencing a personal stress that was a contributing factor in bringing this shadow that had been lingering over my shoulders into full light. In three weeks I had gone from a very busy individual with many physical interests to a person who literally could not walk. It was at this time I was diagnosed with Rheumatoid Arthritis. Although I was put on meds right away, nothing seemed to help. If anything I was getting worse. The pain was so unbearable that I found myself in a dazed semi-conscious state just to get through the day. Then in a conversation with a woman I had known for many years with Lupus, my suspicions became reality. Her medical history was absolutely identical to my own. She was the one that told me I could still get a positive test result after years of negative ones. It was at a crucial turning point. I had the feeling the doctor I was with was looking in the wrong places. I decided to take my health into my own hands. After looking on line, it became evident that I needed to be tested for Lupus again. It was also evident that the BWH was a leading hospital for lupus research. I made an appointment and within weeks I had a positive diagnosis.
We often hear of the wonderful things that the children of the Acorn do. But we don’t hear about the silent few that helped me endure this difficult period of my life. I’d like to thank the adult students of my school. You were loyal and went above and beyond. Through this awful illness bonds and friendships were made. You were all there for me…thank you.
This story is not only about the awful turn of events but it is also about the wonderful spirit of a young man who has been in my life for a long time and was a contributing factor in getting my spirit back. JM worked for us at the time and witnessed firsthand the rapid down fall this disease can have. He became my right hand when I didn’t have much use of mine. The first thing he did was handicap my house. He then raised all the seats I use at home…even the one in my garden. He taught with Jack and I and lugged all the equipment for our summer outdoor painting classes. He drove the van and entertained the little ones. He physically lifted me in and out of the car as well as help me stand and walk. He was the only other person besides Jack that was there when I couldn’t take it anymore and needed to cry. On those occasions he held my hand and didn’t say a word. But despite all that he did one thing that no one else could do…He made me laugh. He helped me see the irony in my predicament; a daring suggestion at best. We laughed when I would stumble and fall into a child; which in turn made the child laugh as well. We laughed at the ridiculousness of the outfits I had to wear. Of me being covered from head to toe, in the heat of the summer, not to mention the array of silly hats I’ve been forced to wear. It was through his lightheartedness that made me feel I was not different…in his eyes I was still the same person. This was a huge contributing factor in my stubbornness to try and gain back my mobility. Together he and I cried at my successes … no matter how small.
When JM told me that he was going to ride across the country in my name to raise money for lupus; I was flabbergasted. Surprised?…again together we cried. I want to thank the parents of this young man for the incredible job they did in raising him. And I want to thank them for sharing him with me all these years.
JM’s generosity was not only a good example for the younger kids at Acorn…It was contagious…To date the high school students have singlehandedly raised over $3000 for this cause…I want to take this time to thank them as well.
The reason I am giving you this history is simple. This disease has been lurking in and out of my life forever, and until I received a positive test…I knew nothing about it. Tonight, I would like to bring awareness to this illness.


  1. No two cases of Lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes — called flares — when signs and symptoms get worse for a while, then improve or even disappear completely for a time.

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