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Sunday, June 17, 2012

Tiffany and Lupus


When I was 20 years old I spent the summer with my mother in the house I lived in as a child.  I had only been away for less than a year.  It had been a very hard year.  I felt very alone. I was not doing very well in college.  I was falling. I was failing.  I went home to my mother’s embrace.

But I am unable to sit still for long. 

Soon I was volunteering for the local community theatre.  I only had one year of college but that was deemed sufficient training to be in charge of costume design and stage construction for the production Oliver.  Every spare moment I was building costumes or building sets on the local high school stage.  I scheduled a work call to build the set and only person showed up to help.  Fortunately he was a contractor, so we got quite a bit done.  The next day I began hauling 50 lb drums of drywall mud to the set, when I felt my back go out.  Once I could breathe through the pain I went to the office and called my Mom.  She came in her car to get me. I could barely walk.  Going to the doctor was out of the question since we had no insurance, so she placed me on her bed to rest with an ice pack on my back.  She rolled me over as needed, because I could not do that myself.

I lay within the room upon the softest white sheets.  In the center of the sheet my mother had embroidered a peacock in a sacred tone of blue.  I would run my hands over the hundreds of French knots that marked the plumage. An occasional gentle breeze would blow in from the open window and the window sheers would billow like the wings of angel.  My mother cared for me.

Soon the show's director called wanting me to come in to work on the set.  Now, my Mother is the sweetest, kindest person you could ever meet.  I had never seen her raise her voice outside the family.  But that night she yelled on the phone at the director of the show, and I smiled.  I knew my mother had my back, even if I had broken it.

Perhaps this story is the reason I loved Tiffany Peterson since the moment I met her.  She is an amazing advocate in the Lupus community and she orchestrates great deeds from far away, often while laying in a bed in pain. 

Tiffany is an older child in a large family.  For many years her mother depended on her help with the younger children.   Then one day Tiffany was sick.  For quite a long time no one knew what was wrong with Tiffany.  She moved down from her upstairs room because climbing became too much for her.  She was placed near her mother who became her caregiver.

This is Tiffany’s jacket: Tiffany and Lupus. 

Tiffany and Lupus
I painted this in New York at Social Media Week NYC in February 2012.  I painted this at the easel while Tiffany told me her tale and a crowd swirled around us.  The strangers laughed and spoke with a slightly maniacal tone that accompanies the second glass of wine.  Occasionally, someone would jostle my easel or make a witty remark about live painting at a cocktail party. 

But within the spiraling conversations, there was a pool of stillness where Tiffany and I stood.  For beautiful, quiet Tiffany was pouring out her heart and I was wetting my brush in her soul.

In this painting Tiffany lies within a darkened room.  In the far background her father is represented only as a silhouette.  He is leaving her.  He does not believe her pain, after all she doesn’t look sick.

He hardened his heart

In the foreground Tiffany rests on purple sheets, the color of Lupus.  Her mother holds her as she holds her mother.  The love between them is palpable.

My mother


In Tiffany’s hand she holds her laptop.  It is her window to the wider world.  It represents all of her online friends who support her in her disease and on her journey.

Hope was in the cloud

Tiffany is beautiful, brilliant and she has so much to look forward to.  She has such a powerful voice online and in person.  But she suffers still.  She gets tired.  She watches what she eats.  She wears a hat in the sun.  No matter what she does to stop it, the disease can still assail her.   Tiffany does all she does while in pain.  When all of the other advocates have gone to sleep; it is just Tiffany staring at the blinking cursor.  Just Tiffany and Lupus.

6 comments:

  1. What a beautiful post about an amazing patient. Looking healthy when you are fighting a disease can be both a blessing and a curse. Thank goodness for patients like Tiffany who find the courage to fight through the pain for those who cannot!

    Thanks to both of you!
    Susan Nelsen (brain tumor patient who looks healthy, too even with 3 unwelcome guests in her brain...)

    ReplyDelete
    Replies
    1. Dear Susan,

      Thank you for posting here. You are right about the blessing and curse that it is. I recently lost a friend to brain cancer and she was so cheery and could walk and talk while in her final stages. She had a great smile and pink cheeks just weeks before we lost her. I find people accept much at face value and do not see the pain and illness beneath it.

      Tiffany is an amazing advocate.

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  2. Recently I sat next to Tiffany in a packed room for the Health Data Palazzo and she suddenly told me she had to go and rest and left and I thought how amazing it was for her to be so in touch with her body. No one came to take her spot and I missed her presence and wondered who else was too tired to be in the room and how could I create the space for them to be seen and heard.

    Sherry @cascadia

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  3. Dear Sherry,

    I am so glad you got to spend time with Tiffany. She is an excellent judge of her bodies ability to cope and does not let society's opinion in her behavior affect her decisions to take care of herself.

    I knew you would relate well to her.

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  5. Came across this while I was updating my blog and was blown away all over again. You have such a big heart Regina. I feel blessed to know you and consider you family. Missing you and the boys like the Dicken's and hope to visit soon. Xo

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