Monday, November 5, 2012

"We Have Lupus"

It was about ten years ago that a handsome, African American Male came to my office at the Lupus Foundation.  He asked if I could meet with him privately to speak about his wife.  She had just been diagnosed with lupus.

Bev was a nurse. She had a very colorful career. She was able to travel with her clients as a private nurse. As we sat in my office and I listened patiently I realized that I was actually being interviewed by him. He wanted to make sure that the Lupus Foundation was a safe place to bring his wife for education, support and comfort. This was a very unusual setting for me.  I was quite intrigued by this man.  I could not believe the love I was witnessing; so great that a man would step out without his wife’s knowledge to interview someone who might be of value to her with her lupus journey.  I must say, it is not often that I see this type of relationship. During our visit I shared with him details about lupus and how his wife’s journey with this chronic illness might unfold. I assured him that together we could help his wife with the new direction of her life. He was quite grateful and he was positive that he would be able to get Bev to attend a support group meeting.

He was a man of his words.  Several weeks later he showed up with his wife, Bev, to a support group meeting I facilitate.  She came kicking her feet. I am sure she had gloves on, or else all of our eyes would have been scratched out.  Well, there it was – denial, fears, anger. Bev presented all of these emotions at once. I am thankful that her husband, Virgil, came with her.  If not I would have been fearful.  You could tell that this woman was truly the heart and soul of her large family.  Bev and Virgle have quite a blended family.  You could tell that she was quite comfortable being in control of her world.  After a while, she began to share her concerns, fears, anger and attitude.  This was one of many steps of her acceptance of life with a chronic illness.  She cried; she hugged; she kissed; she cried again and again. After this huge release of emotions that had built up, there came the eventual sigh of release.  
Interestingly enough, Bev and Virgil both began coming to each support group meeting. During the introductions, Virgil would always say “we have lupus”. He said it well. This man held this woman up each day with his love and patience. And this woman held this man up with her love and gratefulness to him. Together they championed a huge storm.  Too often that storm has kicked up again and again. Still there they are. “We have lupus.”
It has been ten years since I first met Virgil and Bev. They still come to all the meetings. They are avid volunteers and supporters of the Lupus Foundation. Bev co-facilitates one of our support groups. She is still a hugger and a kisser and a crier. But, today, she weathers the storm and brings a rainbow with her to each group she attends.  Her journey has been filled with much adversity and many challenges. The difference is that, now, she looks for nothing in return. Instead, she and Virgil are on the giving end of things. Together with their lupus, they stand ready for anyone at any time to help them live better with lupus. What a gift they have been to the Lupus Foundation of America.

Bev has made adjustments in her new world with lupus. She has been become very knowledgeable about lupus and shares this knowledge with many.  We are sad that they have lupus but remain grateful that they found us and trusted us to be part of their extended family. Together, we champion the many storms and yet we know the seas will calm and the rainbows do come out and we will be there together through all of it.
Lesson Learned: Love is greater than any illness and two can manage and triumph better than one. Fear and frustration can be overcome while turning the focus on others and not ourselves. Education and support are both great medicines. God bless them both.

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