For the Benefit of Others
She didn’t want to see others go through the trauma…

           In 1984 Richard Simko was diagnosed with Lupus.  It was a relief that his malady of 20 years finally had a name.  The past two decades he had been misdiagnosed with everything from sun poisoning to stress.  The fact was, he had had the symptoms of Lupus all along, but doctors didn’t perform the necessary biopsy to determine his illness.
           It wasn’t negligence on their part, rather a lack of knowledge about Lupus.  Lupus is one of those diseases that masks itself in many forms and little is known by patients and doctors alike.  The diagnosis didn’t relieve Richard, and his wife Phyllis, of their problems, but did usher in a new era for them.
           Phyllis and Richard were high school sweethearts, having met their junior year at Tolleston High School, Gary, Indiana, in 1951.  They married in 1954, had six children, and by the time he received the name of his disease, he was unable to work.  Richard had worked as an inspector at U.S. Steel and due to nerve damage was unable to climb ladders to inspect machinery.  He was forced to leave his job when the disease progressed to the point he could no longer function at work.
            It would be three lean years before they would receive any social security benefits and Phyllis took full-time work as a secretary at Methodist Hospital and a variety of part-time jobs, to put food on the table.  Phyllis fondly remembered one of those part-time jobs as a toy salesperson, where she spent most of that income on presents for the children.  Working two or three jobs, she still found time to volunteer as a Girl Scout leader, for 14 years.
            The hardship the Simko family endured those long years of not knowing what was happening to Richard, was due, in part, to the general lack of knowledge about Lupus.  An earlier diagnosis would have allowed them the ability to prepare financially for the inevitable time when Richard would no longer be able to support them.  Once a diagnosis was provided, they could better prepare for what was to come.  If there had been any support for suffers of Lupus at that time, the transition would have been much easier.  In Indiana there was none.  Phyllis knew there was nothing to be done for them, but the information and knowledge that they had gained would benefit others.  She truly didn’t want to see anyone else have to go through the trauma her family had.
           To that end, she recruited her husband, Richard, Ada Crosby-Wesson, Phyllis Hriso, Linda Micus, Edie Schoenberg, Anne Zelencik, and Gwen Sargent to join together to form the first Indiana Chapter of the Lupus Foundation of America, in 1986.  As they first started putting the chapter together, Phyllis mentioned to a doctor, at Methodist Hospital, that she was forming it.  He replied, “You won’t go far with this Lupus Foundation.”
           At the beginning, Phyllis might have agreed with him.  She had to learn skills she knew nothing about, like forming a not-for-profit corporation, putting together a plan of organization and hundreds of similar tasks she had never done before; just to affiliate with the Lupus Foundation of America.  Then she had to learn how to support the chapter and what could be done to assist others.  How was she going to educate doctors?  What was the best way to inform victims and their families?  Was there anything that she could really do for them?
           This was a full time job, with no pay, and her living room became the headquarters.  Of course, she still had to work to support the family.  This level of dedication was in the interest of others, so they wouldn’t suffer through what her family had for 20 years; she gained nothing from it.  Yet, she went forward, learning as she progressed.  Information she now has on the tip of her tongue was unknown and foreign when she first started with this idealistic endeavor.              “Lupus is one of those little known diseases,” Phyllis stated matter of factually, “by doctors, patients and their families.  President Eisenhower was in office when the last drug for Lupus was approved; even though one in 185 people will be affected with it.”
           To get this information out to the general public alone was a challenge.  Phyllis had to do interview after interview on radio, television, and with the print media.  While doing interviews may be something many would covet, Phyllis is a shy, soft spoken, humble woman and this amount of public speaking was difficult for her.  Yet, to help others, some who didn’t even know they needed help, she persevered, while still raising funds to support the effort, finding, training and coordinating the volunteers.  She did this for 20 years without pay.  During this time she grew the chapter from Northwest Indiana to statewide, and from eight people to more than 2800.  Three times she stepped down from the head of the foundation, only to take it back when others couldn’t continue at her level of commitment.
            Remembering the past 25 years (three years ago she began receiving pay for her position) she stated, “I used my children as volunteers often, when we couldn’t get anyone else.  The time I took with this foundation was time I didn’t spend with them.”  The thought made her quiet; a tear welled up in her eyes.  She remained silent a few minutes remembering all the hardship she and her family suffered to make the foundation successful; so chocked up by memories that she couldn’t speak.  Watching her, one wondered whether she regretted having undertaken this daunting project, if it had been worth it.
           “Three years ago I was diagnosed with breast cancer,” she finally said in a hesitant voice, “but everyone knows about that, they have big Hollywood celebrities making public service announcements, it is in the forefront of everyone’s consciousness.  Lupus is still a little known disease and so much is left to be done.  It was all worth it, all those years.”
            This year will be her last, as she intends to retire in November.  Now she will take the time to spend with her children and grandchildren.  Of the original eight founders of this chapter, five have died, including Richard Simko; most from Lupus or from the complications of it.  There is still no cure for this disease, but coping through it has become easier due to the efforts of Phyllis and all the volunteers within this organization.
            Thousands of people have received help and guidance from all of Phyllis’ hard work, yet at a cost to her that can not be gauged, a cost most of us would not be willing to pay.  Many great people serve others, not themselves; and Phyllis Simko is no exception.  While she will be missed, her work has been invaluable to thousands of Indiana residents
.            “She is my personal hero,” stated Monika Yover, administrative assistant at the Lupus Foundation, Indiana Chapter’s Portage’s office, “she is one of the most caring and giving people that I know.”