It was a warm day, with a clear blue sky, sprinkled with fluffy white clouds. Emily was buckled into her car seat behind us. Anne pulled the car over to drop me off. I would have welcomed the usual walk back from Children’s Hospital to my office at MassArt. But, that particular day, Emily’s appointment took longer than normal. I was running late.
Her body had just begun to be covered with lesions from the rare childhood disease that was invading her little body. She had not yet come to know the gauze that would soon wrap her entirely, or the drugs that would sedate her so she could bear the pain. Still, she was wise beyond her years and understood that she was not long for this world. At six years old, she was the only one of us willing to acknowledge her reality.
As I was getting ready to leave the car, she said something profound and altogether unexpected. “I’m afraid to die”. Turning to face Emily, and catching a glimpse of my baby sister’s face, her eyes wide open, lip quivering. She was normally so brave and controlled. Although not a believer, I sometimes wonder if I wasn’t “put” there in that car, at that moment. A reassuring hand on her arm, we made brief eye contact and she knew I could handle this one for her. We’ve always been able to read each other that way.
Emily was not as easy to read. Assuming she was afraid of the unknown, I jumped into an elaborate description of Heaven - full of beauty, sunshine, fluffy white clouds, and happy, healthy people. I asked her to look up at the fluffy white clouds and imagine how soft they must be, how her body wouldn’t hurt any more if she were lying on them. Realizing she was not finding comfort in my words, I asked “What is it you are afraid of, Emily”? Her answer stunned me. “Because when people die, they are old. And, if I go to heaven and look like an old lady, Grampy won’t recognize me”.
She was confused by her own unnatural willingness to accept death at such a young age, combined with a perfectly natural fear of abandonment. Having spent half her life in hospitals, many of her closest friends were terminally ill. Emily knew about death. She needed to hear me say, “When children die, they stay little forever. So, if you die now, you will be six when you go to Heaven. And, Grampy will know you”. When Emily said she wasn’t scared any longer, I hugged them both and went to work.
Emily took her last breath on June 26th, 2005. She will always be six. This work was inspired by my time spent with Emily, and an ongoing attempt to make sense of the profound experiences of powerlessness, loss, and grief.
Early Stages, 2007
mixed media (coffee, tea, wine, ash, ink, watercolor, artist's hair) on paper
22" x 30"
×Shed and Salvage
artist's hair, glue, paper
This series of images drew inspiration from a personal experience but speaks to a more universal theme; strength in the face of suffering and terminal illness.
Each "mark" in the line is made from a single strand of hair fallen naturally from my head over a period of 18 months; the time it took to grow my own hair long enough to qualify for donation to Locks of Love.
When viewed together, the images represent hope and growth as the line of hair becomes gradually longer and loss and finality as the line abruptly ends.
