Suffocation by Toilet Paper — A Story of Sibling Love
Here I am, on the plane to Vegas. Again. Make your assumptions about me, but the one truth about why I’m going to Sin City, you won’t get right. My trip to Vegas has nothing to do with gambling, a conference, or a show. It has to do with my sister, Joy.
Siblings — they ground us, make us crazy, look after us, ignore us, compete with us, love us. Compare Cain and Abel, the Baldwin brothers, the Olsen twins, or the Brontë sisters, and you will find levels of devotion and disrespect.
Our siblings put their stamp on us long before we know who we will become.
My fondest story of my sister Joy is of me, fresh home from the hospital (since I was just five days old I have no actual memory of this). This story, more incident than tale, is one I’ve heard so many times that I can picture it — the crib, the nursery walls, and the menacing presence sneaking into the room, my brother Steve. Steve, with his crew-cut-styled head, looked exactly like the three-year-old militant that he was. Before I was born, Steve was the baby of the family, the golden boy; he was fawned over, praised, and lauded. Then I came along.
On that particular day, many years ago, I was unaware of Steve’s reconnaissance mission, as he low-crawled his way into the nursery where I lay sleeping, unsuspecting of the oncoming onslaught. Tucked under Steve’s chubby, toddler arm was a roll of toilet paper, his mind brewing with a sinister plan. Leaning over the bassinet, Steve unfurled the roll, wrapping, one turn after another, sheet after sheet of billowy paper, around my infant head.
“That should do it,” Steve must have muttered. “She won’t be taking my place.”
Suffocation by toilet paper.
Several minutes later Joy walked past the nursery. She heard the whimpering sounds coming from the crib. It was she who turned Steve in to my mother, a woman who was rarely ruffled about the big things but often miffed about the small things. Steve would pay for this.
Joy, nine years older, was my protector. She was the one who taught me to drive, who advised me against bad decisions before they were made, who let me live with her not once, but twice. Loyal. Kind to strangers. Trusting. Quick to laugh.
Over 30,000 people in the U.S. suffer from Huntington’s Disease, with more than 200,000 at risk of inheriting the disease. Huntington’s Disease, or HD, has no cure, and there are no viable drugs to counteract the symptoms that will most likely occur during mid-life and rob you of a graceful old age. The disease is genetic; if your parent has HD, you have a 50% chance of inheriting the disease.
The Huntington’s Disease Society of America states that the “symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s — simultaneously.” My only memory of my maternal grandmother is of her in a wheelchair, afflicted with HD. My mother lived the last eight years of her life in a nursing home, dying at 73, with complications from HD.
While I had managed to escape the curse of HD, my sister had not.
Joy, a name true to her nature, had lived the last 25 years of her life in Las Vegas. While Joy didn’t gamble, party, or cruise the strip, she liked the sun and affordable living that Vegas offered. I lost my bright, cheerful sister on Halloween evening when she should have been enjoying mid-life, at 66 years of age. I was headed back to Vegas to say my final goodbyes to her when I got word of her death.
I couldn’t help her. I couldn’t protect her. I couldn’t do anything for her.
HD is one of those diseases that most people have never heard of, but if it were in your family, you would know. You would cry. You would worry, and fret, looking for symptoms if you hadn’t tested negative for the illness.
The disease would break your heart, over and over again.
We all suffer loss; no one is immune. We lose friends and family, but we go on. If reading this makes you think of your sibling, pick up your phone. Reach out, and tell them that you love them. If you have lost your sibling, then I sympathize with you. I feel your loss. We grieve, but we never forget.
