Nikki Sixx and the sister he never knew

Nikki Sixx of Motley Crue

Nikki Sixx

Every time I run across another story about a family with a long-lost member who was institutionalized, I hear the same themes and emotions expressed — shame, guilt, fear, pain, secrecy, regret.

Thanks to my friend Janet Kilgore, an outstanding writer, editor and humorist, I have found another story. And this one is from a most unlikely source.

Nikki Sixx, of the heavy metal band Motley Crue, reveals in his book This is Gonna Hurt: Music, Photography and Life that he had a sister who was born with Down Syndrome. Lisa, who was also blind and almost completely deaf, was sent to an institution at an early age. Nikki has no memory of ever seeing her.

Mom, where’s Lisa?

Sixx says when he asked his mother about Lisa, she said Lisa got too upset when the family tried to visit her at the institution.

“She was comfortable there, with people who cared for her, and seeing us would ruin everything,” he quotes his mother as saying. She told him that Lisa was born in the ‘60s and things were different then. There was no way for her to take care of a disabled child.

“I have always felt guilty that I didn’t think of Lisa very often when I was growing up,” Sixx says. “I went through life just accepting the situation.”

I don’t understand this

After Sixx became an adult, he asked his mother how to contact Lisa. “I want to go see her. Please…I don’t understand any of this and I need to…”

Sixx called the facility where Lisa lived and talked to a staff person, who told him that her greatest pleasure was sitting in her wheelchair and listening to the local rock station. Because she was almost deaf, the volume had to be really loud. “That made me smile.”

The problem with procrastinating

Sixx called the home several times to check on his sister, but he never went to see her. Several years later, she died.

“The problem with procrastinating is that sometimes, it bites you in the ass,” he writes. “I got busy, I went on tour, I went through a divorce and I lost connection to that feeling that I had to make Lisa’s life right. And now she was dead.

“I have had to forgive myself for a lot of things in my life, but this was the hardest.”

The sibling syndrome

Being a sibling of a child with an intellectual disability can be life-defining. I know, because that’s what happened to my father, the oldest of five children — one of whom had a severe intellectual disability.

Dad grew up during the Depression and so he didn’t just have to deal with a disabled brother, he had to cope with poverty. His father was a traveling salesman and he was gone all the time. Dad’s mother relied on him as the responsible one.

Research

Not much research has been done on the impact of having a sibling with a disability. As physician Ranit Mishori, who has a brother with autism, points out in the Washington Post, most research has focused on the parents and how their lives are affected. Any research on siblings has been aimed at academic performance and mood disorders.

Experts who have worked with older siblings report that they feel an overwhelming sense of responsibility. Younger siblings, who have never known life without a disabled person in the family, seem to have less difficulty adjusting.

For my dad, having to take care of his brother robbed him of part of his childhood. When Uncle Melrose would have a tantrum, Dad would have to take him for a ride in the car to calm him down. When Dad would play baseball with his neighborhood friends, he would find a way for Melrose to participate and not disrupt the game.

Dad helped his brother dress and eat and he took him to the bathroom. I’m sure there were other routine tasks he helped with as well.

Guilt, anger and pain

When Dad graduated from high school, he moved out of the house and got a job. His parents, who had relied so heavily on him as a caretaker, found they couldn’t handle Uncle Melrose and they sent him to live in an institution.

I don’t think Dad ever got over the pain and anger of his parents’ decision. And I don’t think he ever got beyond feeling like the responsible one in every situation. He learned early on to suppress his feelings and he was never able to become emotionally present.

Being the older brother of a sibling with an intellectual disability was a two-edged dagger for him. It cut him two ways — one bad, the other good. It damaged him for life but also made him one of the most unselfish people I’ve ever known.