One Patient's Positive Perspectives

The name inside the music book

I opened my choir book to look inside the front cover of the Christmas music the choir director had just passed out.  This year, my church choir will be re-performing a cantata we last sang several years ago.  This year, the music was not reassigned to the same musicians and was given to different singers.  Peeking inside the front cover of mine brought a wistful tear to my eye, and a flood of memories about the last person who used it.

The book had the name “Gaynel” written in pencil in the upper right hand corner of the title page of the music.  Gaynel had lupus, too, and I have mentioned her here once before.  She was almost old enough to be my mom, or at least my aunt.  Gaynel was a charter member of our church, and was loved fondly by everyone who knew her.  She and her late husband were very close friends with my in-laws who all originally came from New York.  My husband and I have known and loved her and her extended family for over 25 years.

Gaynel’s story is unfortunate while also one of faith, hope and courage.

Lupus Nephritis

In the last years of her life, Gaynel was a widow and battling kidney failure due to lupus nephritis, while undergoing home peritoneal dialysis.  Everywhere she went, she carried a rolling oxygen tank with her.  When she finally became so ill that she left the transplant list, we all sorrowed with her.  It became clear to her doctors that she was too weak to make it through a second transplant surgery, after her lupus nephritis destroyed the transplanted kidney she had received several years earlier.

I remember Gaynel before she had kidney failure.  She was a dynamic, cheerful spiritual leader in our church.  She and her late husband directed a large children’s bible club ministry in our church that involved countless children over more than twenty years, including my son and daughter.  She was also the church treasurer, a role she continued until right before her death two years ago.  The one other ministry that she was extremely determined to continue until the end, was her love of singing in the church choir.  For several of her last few years, one of the choir members helped her to her seat at the end of the alto section of the choir, with oxygen tank in tow.

Preparing for Christmas music

So, this season as we prepare our Christmas Cantata, I have the bittersweet memory-invoking honor of holding the choir book that was last used by Gaynel.  She was a hero to me, and an inspiration to everyone who watched her last years of suffering.  She faced them with cheerfulness and unwavering joy of faith.  Although she was the victim of lupus, she was neither bitter nor blaming, and accepted her fatal situation with poise and grace.

She often acted as if her lupus didn’t even exist, and never was the one to bring it up in conversation.

Her life touched so many, including mine

Two years have now gone by since her passing, and she is still mentioned from the pulpit and on the lips of all who knew her as a stalwart example of faith through trial.  She set a benchmark and example that I fear I cannot begin to meet, except as the grace of God might help me become a little more like Him.

Gaynel was a Christian, both in faith and in practice – facing her lupus and death, she had unwavering faith and strength of heart.  She was very much “Christlike,” the real meaning of the word “Christian.”

Gaynel’s life touched so many, and now, in the quiet small way her book now is held in my hands, she is still touching mine.  May I sing to God’s glory with a heart of faith as she did.


To learn more about lupus nephritis, read “Kidney Disease,” an article on the Lupus Foundation of America‘s web site.

Comments on: "Lupus and the Name Inside the Book" (3)

  1. That’s how I would love to be remembered! May my love of The Lord shine so brightly it covers all the rest!

  2. Wow, what a beautiful soul Gaynel had. How fortunate that you got to know her for so long. I’m sorry for you loss and the communties loss of such a beautiful soul.

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