Sickle Cell interview July 11, 2009 – Beating the monster
Carol Mulumba has beat Sickle Cell Disease. The monster is in jail now.
Many children believe in monsters. A blanket casting a strange shadow on the wall and the wind in the trees can make them seem more real than they are. But sometimes monsters are real and don’t creep around windows and closets. Sometimes monsters are much more sinister.
“The monster is gone,” Carol Mulumba said referring to the disease that has kept her captive her entire life. “It’s in the trash and in jail. I don’t have to be afraid anymore.”
For eight-year-old Carol, the monster, called Sickle Cell disease, is all she knew. It tortured her with increasing ferocity as she grew older. What started out as aches turned into pain that grew more severe as she aged. That pain made a girl who should have been carefree and laughing contemplate things terminally ill adults seldom think about.
Carol’s mother, an Air Force nurse, recalled profound and saddening moments with Carol who lived always in the shadow of the monster. Watching the funeral of President Gerald Ford, Carol saw the procession and ceremony as a potential part of her future.
“I remember her saying to me, ‘momma will I be in a casket like that,’” Carol’s Mom Lucky Mulumba said in her Ugandan accent. “’What makes you ask that,’ I asked her. ‘The monster,’ she said.”
Carol’s belief that the monster would take her was her seven-year-old mind trying to make sense out of the disease that caused her so much pain. The pain was so severe morphine was her only relief but the morphine carried its own set of side-effects.
As the sickle-shaped blood cells in Carol’s body obstructed blood vessels pain flared up. She developed her own way of describing it to her doctor’s.
“It feels like a punch,” Carol said recalling the pain in her head from the monster. “A kick,” she said describing the pain in her abdomen. “Stuck under rocks,” she said about the pain in her feet.
For the severity of the pain Carol would grab her doctor’s hand and squeeze. The strain on her face as she squeezed as hard as she could only hinted at the monstrous pain. It was hard for the doctors to relate to the severity of her pain, but the demonstration showed that it took everything from her and was the reason she balled up in the fetal position to ease what the pain killers couldn’t.
The monster changed Carol in other ways. Her mother said she was angry all the time since she couldn’t do the things children are meant to do and because she was hurting almost constantly. Carol was nearly always exhausted as well partly due to the damage the disease wreaked on her body and partly due to lack of sleep.
“Sometimes the monster would wake me up,” she said.
But now the monster is in the trash and in jail. The light has turned on to reveal the frightful shadows and noises were blankets and the wind. How Carol beat the monster though, is another story.
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